tag:blogger.com,1999:blog-52772597925566709822024-03-21T14:00:48.971-07:00MSucks! Living with a lesser known diseaseAlone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.comBlogger70125tag:blogger.com,1999:blog-5277259792556670982.post-62081665668542969962014-08-12T14:10:00.001-07:002014-08-12T14:14:32.212-07:00What your staff says about you as a doctor. ..<p dir="ltr">I had an appointment today with a new doctor.  I was hoping she would be my new primary doctor,  but I left before ever seeing her and vowed to never go back. When I scheduled the appointment last week I was on the phone for 20 mins and during that time speaking to two different people who both had to ask me for my emergency contact's date of birth.  It was an odd question that I had to answer 3 times.</p>
<p dir="ltr">They didn't bother to tell me they had moved to a new building last week so strike one was showing up at the location I was given only to be greeted by a note on the door instructing me of the new address. I find the new building and am pleased it is in the same place as my pain management doctor. </p>
<p dir="ltr">I go into the waiting room and it's a good 90 degrees in there. Thus is not a pleasant feeling for people with ms who are heat intolerant. </p>
<p dir="ltr">There is a gentleman at the desk. He very politely asks for test results from his previous visit explaining he was told he would have the test  results within two weeks and it has been 32 days. He asked simply for a printout of the results and to schedule an appointment to come back and go over the results.  The lady at the counter informs him he can wait and they will try to fit him in today to go over the results. He states he doesn't have time to wait today and would just like the copy of the results and to schedule a time to review them. At this point the demeanor of the lady behind the counter changes. With an attitude she tells him to have a seat because she has to print the results and they will be ready in a minute. As soon as the gentleman turns his back she rolls her eyes at him. Hello? There are other people here who can see you! </p>
<p dir="ltr">At this point I am questioning my decision to come here. Now it's my turn to speak to the counter trolls. There are three of them at the desk and not a single one appearing to be working. I introduce myself stating I have a 2:45 appointment as a new patient. Usually when you say new patient they grab paperwork for you to fill out. I am told "have a seat and we'll be with you in a minute". No smile no please no thank you. </p>
<p dir="ltr">So I sit. Next to me is a lady with a fussy baby. Of course with the temperature I am already breaking a sweat I assume this child is as hot as I am. The mom is trying to calm the baby and mentions she is still waiting though her appointment was scheduled for an hour and thirty minutes ago. </p>
<p dir="ltr">They call the man up and hand him his paperwork.  He again asks to schedule an appointment to come in and go over the test results with the doctor. The desk troll proceeds to tell him that he cannot request an appointment in person and that he needs to call to schedule a time. <br>
As he turns to leave the desk troll again rolls her eyes at this man who has done nothing but politely ask for his paperwork. <br>
It is at this point I decided that obviously Dr.  Hernandez is not in need of any more patients as her staff can not be inconvenienced by those she already has. I find it absolutely offensive that the staff thinks treating their patients this way is acceptable. Do they not realize that if it wasn't for these patients they would not be employed?</p>
<p dir="ltr">So it turned out to be a waste of time and gas to go down there. I am still looking for a new doctor and it's back to the drawing board. </p>
Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-56907775168421473472014-03-27T23:30:00.000-07:002014-03-28T06:17:58.563-07:00Surgery Follow-Up TodayI was allowed to leave my house today for the first time since I had surgery. It was almost exciting! I was FINALLY allowed to see it for the first time (thanks mom!). <br />
He had taken pictures when he operated and he showed them to my mom and my fiancé and my mom says “She doesn’t need to see that”. Mind you mom has a very hard time with anything that looks painful. When I woke up after surgery and spoke with the surgeon I was told the files had already been sent over to his office. WTH Doc? I didn’t find out until the next day he didn’t show them to me because my mom told him not to. Really? I mean I am a 33 year old woman who ran fire and rescue for many years for many counties. I like the weird and gory stuff. More importantly I want to see what you did; after all I am the one paying you! <img alt="Steaming mad" class="wlEmoticon wlEmoticon-steamingmad" src="http://lh4.ggpht.com/-D97AZx3QHoM/UzV17qtQx7I/AAAAAAAAAyw/3Slds8KMJQE/wlEmoticon-steamingmad2.png?imgmax=800" /> Rant over.<br />
So here we are two weeks later on my first venture out of the house and my fist time using the knee scooter since last May. They called me back before I got bored. Nice nurse lady unwraps the outer bandages but leaves splint and all the still wrapped gauze and goodies before getting me on the x-ray table. x-rays were crazy looking as usual they had replaced the butterfly plate and all of the screws. There are also the fittings where external fixation device was drilled into the bones. <br />
Then came the moment of truth. Doc comes in unwraps and cuts and pulls and … most of it comes off and what I see is not as bad as I was expecting. Took quite a few bottles of water, some pulling, and some serious work to get the one blob of gauze that was under the top rod and cemented to my skin. Little bit of cleaning, checking stitches, and adjusting the pins with a wrench- yes boys and girls, he pulled out his tool and started playing with my nuts. <br />
<a href="http://lh4.ggpht.com/-sC1Q06LKnyg/UzV18DiWUXI/AAAAAAAAAy4/uzag5fOi4hY/s1600-h/20140327_130918-15.jpg"><img alt="20140327_130918-1" border="0" src="http://lh6.ggpht.com/-WF9QOQuuJGo/UzV183d9jGI/AAAAAAAAAzA/958WJa8Ewf0/20140327_130918-1_thumb1.jpg?imgmax=800" height="244" style="background-image: none; border-width: 0px; display: inline; padding-left: 0px; padding-right: 0px; padding-top: 0px;" title="20140327_130918-1" width="200" /></a><br />
<br />
<a href="http://lh5.ggpht.com/-akVOCcaHqag/UzV19a4SpPI/AAAAAAAAAzE/bNN1Yi63t-Y/s1600-h/20140327_130913-13.jpg"><img alt="20140327_130913-1" border="0" src="http://lh4.ggpht.com/-3faEZYeow7I/UzV1-BG6KVI/AAAAAAAAAzQ/OZvOl21pOxM/20140327_130913-1_thumb1.jpg?imgmax=800" height="228" style="background-image: none; border-width: 0px; display: inline; padding-left: 0px; padding-right: 0px; padding-top: 0px;" title="20140327_130913-1" width="270" /></a><br />
I expected to see this big scary thing, but it reminds me of an erector set I had once. Mind you this is the outside piece. <br />
<br />
It still looks like this on the inside. But with the addition of the pins from the outside that are drilled into the bone too. <br />
<a href="http://lh3.ggpht.com/-jjbSz_p_zXs/UzV1-iRzxCI/AAAAAAAAAzY/CGczy0RH3DU/s1600-h/2013-02-06_18-50-15_4643.jpg"><img alt="2013-02-06_18-50-15_464" border="0" src="http://lh4.ggpht.com/-aohI-cgoNY8/UzV1_clJw_I/AAAAAAAAAzc/4B9gaCB19c0/2013-02-06_18-50-15_464_thumb.jpg?imgmax=800" height="244" style="background-image: none; border-width: 0px; display: inline; padding-left: 0px; padding-right: 0px; padding-top: 0px;" title="2013-02-06_18-50-15_464" width="139" /></a> <a href="http://lh4.ggpht.com/-GpFBxifLrlc/UzV1_8gDbJI/AAAAAAAAAzo/R5_0LhL9Q8s/s1600-h/2013-02-06_18-50-03_6303.jpg"><img alt="2013-02-06_18-50-03_630" border="0" src="http://lh6.ggpht.com/-rVUkiHJZA5Q/UzV2Aao3kKI/AAAAAAAAAzs/t-W6Tf5jGm4/2013-02-06_18-50-03_630_thumb.jpg?imgmax=800" height="139" style="background-image: none; border-width: 0px; display: inline; padding-left: 0px; padding-right: 0px; padding-top: 0px;" title="2013-02-06_18-50-03_630" width="244" /></a><br />
This was not an easy surgery. It was the most painful by far. The good news is, he decided to hold off on the hard cast for another 2 weeks since I did everything I was supposed to (which was a whole lot of nothing). I was fortunate when it comes to the bone stimulator that I expected my insurance to deny as they have every other piece of medical equipment I have needed over the last 5 years. Turns out they expected this too which is why they ordered it before the surgery that we had to postpone. It’s approved and I was sent home with it. This is amazing news because I looked these things up online and the cheapest used one I could find was almost $600.00, new they run well over $1200.00. All it is is a tiny ultrasound machine with a 1 inch diameter electrode. <br />
When it comes to the bone stimulator, I have to go into a hard cast because it needs direct skin contact and the doctor doesn’t want me unwrapping my foot every day and risk causing damage. The hard cast is built around the stimulator port… essentially it’s a cast with a port hole. Really wishing they had thought of this when I broke my back in all of 6 places that never healed correctly. <br />
I follow up in two weeks and get my cast then. <br />
<br />
<div class="wlWriterEditableSmartContent" id="scid:0767317B-992E-4b12-91E0-4F059A8CECA8:390d1506-ca8c-40bc-9f52-d4b95abd1c07" style="display: inline; float: none; margin: 0px; padding: 0px;">
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Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-75795643884985365102014-03-27T07:00:00.000-07:002014-03-27T07:01:42.554-07:00MS is killing my sex life! (warning, TMI post)<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">After several years of being on the high dosage of Ambien it
stopped working for me. My doctor refuses to put me on anything else as the
three other ones we tried did nothing for me. As a result, he decided we should
add Elavil to the mix. This was also ineffective. We then increased the dosage
of Elavil each visit until we found a combination that worked to help me sleep.
Added to my 10 mg of Ambien is 150 mg of Elavil. This combo works most of the
time yet I still have nights that I don’t sleep and I have to take it on a
pretty empty stomach or it doesn’t work at all. Unfortunately with my family’s
schedule I am not always eating dinner before 6 pm. </span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">One major drawback of taking Elavil that I have never had
happen before is a lack of sex drive. It got up and walked away. So my options
are do I choose sex or do I choose sleep? Because I can’t have both. It’s very
odd. I have been on Elavil before but at the lower dosage and it didn’t change
anything. Sadly between the MS and the broken foot and the 2 kids most nights I
am more inclined to want sleep. Plus there is the added issue; if I don’t fall
asleep before my fiancé, I am up all night listening to him snore. And let’s
face it, men become comatose after sex. So when I say I have to choose between
sex or sleep I mean if I choose sex I get zero sleep that night. </span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Plus I had surgery 2 weeks ago and I now have 2 external
fixation devices on my foot. These are to apply pressure to the outside to hold
the bones while they heal around the inside hardware. It was not an easy
surgery and it hurt like hell. So my foot is wrapped in these bandages and I am
to elevate it and try not to move it too much. We were supposed to do this
surgery last month, but thanks to one idiot dr we ended up cancelling last
minute (because it was the pain management dr, so he was refusing to get my
refill straight with insurance co). </span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">The stress of fighting with doctors and being tested for
EVERYTHING within a 2 week span lead to yet another MS flair. This meant
waiting a month after cancelling surgery to reschedule it. After surgery of
course was another flair. My body doesn’t like being cut open and drilling into
my bones; Go figure!</span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">So I am immobile, in pain, broken, in another MS flair, and
my own body is kicking my ass. Sex? Not exactly high up on my priorities right
now. This really is out of character for me. It took me 3 days of thinking
about HOW we could have sex while keeping my foot out of it… and not jolting it
in the process. Logistically, it’s damn near impossible. Alas, I did finally
come up with a yoga like position that worked. It was like hitting the lottery.</span></div>
<br />
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Except… thanks to my stupid MS I am numb down there… but
only on one side. So it was weird. It’s just frustrating. It’s also frustrating
for the man because we went from a minimum of 3 times a week to once every few
weeks. Hoping after I am done healing from surgery things will return to
normal. Also going to have to try decreasing the dose of Elavil and hoping it
works, though it didn’t in the past. Wish me luck!</span></div>
<div style="margin: 0in 0in 10pt;">
<span style="font-family: Calibri;">Wonder if they make a female version of Viagra?</span></div>
Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-45559958440755712262014-03-22T14:47:00.001-07:002014-03-22T14:47:56.555-07:00Post Surgery Review<p>Hello everyone. Surgery #4 was done last week and it’s time for an update. This was the surgery that removed and replaced the internal butterfly plate and 7 screws. Then he went on to attach external fixation devices (2 I believe) which looks kind of like this:</p> <p><a href="http://lh3.ggpht.com/-7ocUBPNkk9E/Uy4FCDW0ijI/AAAAAAAAAyQ/caVTPM-ofaE/s1600-h/external%252520fixation%25255B2%25255D.jpg"><img title="external fixation" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="external fixation" src="http://lh6.ggpht.com/-pMkE4Xge1_I/Uy4FCly17OI/AAAAAAAAAyY/k-Hpr3GsLFs/external%252520fixation_thumb.jpg?imgmax=800" width="244" height="185" /></a>except I have one on each side of my foot. I can only guess what it looks like until my follow up appt next Thursday because the doctor was told not to show me the pictures so he sent them on to the office before I woke up from surgery. </p> <p>This was not an easy operation, it took around 5 hours. This was my second in-patient surgery on this foot. I am pleased to say that I had a great team of nurses with a clean hospital. This was the opposite of the horrible night I spent at St. Mary’s Hospital (Richmond, VA) for my last surgery. </p> <p>There are no words to describe how thankful I am for the amazing nurses at Mary Washington Hospital (Fredericksburg VA). From my 3 a.m. request for coffee to my being able to use crutches to go into the bathroom they were on the ball. </p> <p>I was pleased to see that my doctor (Dr. Facaros Ortho Specialty Clinic) hung around after surgery to let me know how things went. (My last surgeon: Dr. Brown at West End Orthopedics left after surgery and I didn’t know how it went until the next day.) And compared to the the last hospital, Mary Washington’s Operating room was clean and up to date with their equipment. </p> <p>Okay time to stop comparing my old surgeon and his crappy hospital to the new guy and my new hospital. </p> <p>As far as surgery goes, I was warned this was going to hurt more than anything I have been through. Not that I didn’t believe the surgeon, but I experienced a level of pain I never knew existed. </p> <p>Thanks to my awesome nurses the first 2 days of pain was manageable. I was not doing too bad when I got home on Friday afternoon. I was exhausted because I couldn’t fall asleep in the hospital, the few times I did I jerked awake and that caused the foot to move so I gave up. Friday I slept when I got home. And I slept through the night. I noticed a lot of my MS symptoms popping up which I knew could happen after surgery.</p> <p>Saturday however was the day I woke up in so much pain that I wanted to die. Every inch of my body was swollen and painful. I knew my leg/ foot would hurt. I did not expect my face to be swollen and painful. I was miserable and that was the day I discovered child birth paled in comparison to this surgery. It was hard to determine the difference between my MS flare up and an infection of the surgery. It was a miserable day that got worse as it went on. </p> <p>Sunday I woke up with less pain in my body and ended up spending the day in bed reading a book and doing a whole lot of nothing (which is what I needed to do). The MS crap started to ease up some and I was not as miserable. </p> <p>Here we are day 9 after surgery and I am still not allowed to do anything but sit around with my foot elevated. The new thing that sucks is that I can go all day with no problems aside from pain which is expected, then around 5 pm EVERY DAMN NIGHT, my foot starts swelling and getting very uncomfortable. This leads to more pain meds and having to lay flat on my back with my leg straight up in the air… yeah not very comfy. Soon as I put down my leg onto my wedge pillow, it swells again. </p> <p>One thing that has popped up I wasn’t expecting was what appeared to be a UTI. After my kids both got sick and ended up sharing their sinus infection with me. Discovered today that the cloudy/ weird smelling urine is actually a side effect of Percocet. Who knew? </p> <p>I am going in on Thursday next week to follow up with the surgeon. if all goes according to plan, after 8 weeks we will schedule surgery #5 to remove the outer hardware. Then another 12-16 weeks recovery and hopefully I will be walking again. No amount of pain in the world would have stopped me from having this surgery. I am terrified of being in a wheelchair, and it was a no brainer at the time because my foot was literally falling apart. </p> <p> </p> <p>That being said, had I known the amount of pain I woke up in Saturday, I would not have gone through with this surgery… but I am glad it’s over and I hope with all hopes that this works. My surgeon was great. I am hoping this continues. I was impressed with the hospital and the nursing staff at 5 west (zone I was in). Though this whole thing has sucked, I am hoping the worst is over. <div id="scid:0767317B-992E-4b12-91E0-4F059A8CECA8:5f339eb0-a625-4146-a8c2-b483c91b8c78" class="wlWriterEditableSmartContent" style="float: none; padding-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; display: inline; padding-right: 0px">Technorati Tags: <a href="http://technorati.com/tags/St.+Marys" rel="tag">St. Marys</a>,<a href="http://technorati.com/tags/Richmond" rel="tag">Richmond</a>,<a href="http://technorati.com/tags/Fredericksburg" rel="tag">Fredericksburg</a>,<a href="http://technorati.com/tags/Virginia" rel="tag">Virginia</a>,<a href="http://technorati.com/tags/Dr+Brown" rel="tag">Dr Brown</a>,<a href="http://technorati.com/tags/West+End+Orthopedics" rel="tag">West End Orthopedics</a>,<a href="http://technorati.com/tags/Orthopedic+Speacialty+Clinic" rel="tag">Orthopedic Speacialty Clinic</a>,<a href="http://technorati.com/tags/Dr+Facaros" rel="tag">Dr Facaros</a>,<a href="http://technorati.com/tags/Nurses" rel="tag">Nurses</a>,<a href="http://technorati.com/tags/Mary+Washington+Hospital" rel="tag">Mary Washington Hospital</a>,<a href="http://technorati.com/tags/Hospital" rel="tag">Hospital</a>,<a href="http://technorati.com/tags/nurses" rel="tag">nurses</a>,<a href="http://technorati.com/tags/External+Fixation" rel="tag">External Fixation</a>,<a href="http://technorati.com/tags/Lisfranc+Dislocation" rel="tag">Lisfranc Dislocation</a>,<a href="http://technorati.com/tags/Fractures" rel="tag">Fractures</a>,<a href="http://technorati.com/tags/Fusion" rel="tag">Fusion</a>,<a href="http://technorati.com/tags/surgery" rel="tag">surgery</a>,<a href="http://technorati.com/tags/operation" rel="tag">operation</a></div></p> Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-36261282284714629332014-02-27T18:50:00.001-08:002014-02-27T18:50:21.831-08:00After my review of Dr. Deschner, I feel I should review some of the good doctors.<p>I know that my last post was very negative, and it was all true. It was a very negative 6 months of dealing with VCU Health/ MCV/ and Dr. Deschner. It was a nightmare and I sincerely hope no one else will have to experience what I went through. </p> <p>Enough negativity, today I would like to praise the doctors who have actually helped me. Those who have done their jobs the best they could and provided me with a positive feeling that they know what they are doing. </p> <p>First up of course is the one doctor who has been with me for this whole journey after being diagnosed with MS. The only doctor who has not only treated my broken back without drugs but has performed miracles in giving me back a range of motion I never though I would see again. Dr. Ryan McDonnell of Caroline Chiropractic is absolutely the best doctor that I am happy is on my team. I have no doubts that without him I would probably be in a wheelchair. Waiting on my back to heal from the fractures was the worst, though they did call and check on me. There is an open door policy that I love. No matter what day of the week, no matter how many patients he has scheduled they will never turn you away and tell you to come back later. I cannot say enough about Dr. Ryan or Betty who somehow maintains a good attitude even when she spends all day dealing with insurance companies. It is refreshing to have a doctor who genuinely cares for his patients and goes above and beyond to help in any way he can. There is a story that I have to tell people when I refer to my chiro. After the first 4 fractures, my ortho (with Dr. Suthar over at Virginia Interventional Spine in Fredericksburg, VA) absolutely refused to sign off on me going back into chiropractic care. REFUSED. Told me what a horrible idea chiro was and that it would cause more damage. Eventually I ended up leaving this idiot because he believed he knew more about my body than I did. Bumped into this guy about 6 months after I fired him. he called my name in a parking lot and I turned my head to see who it was. He was amazed at the range of motion that had returned to my neck and asked me which doctor I was with. I laughed and told him Dr. Ryan… the chiropractor that you called a quack and refused to sign off on me returning to. And that, ladies and gentlemen is why I will not even begin to look at any chiropractor in this area and why I drive all the way to Ladysmith. He is the best!</p> <p> </p> <p>Sadly, the second doctor that comes to mind who is great at his job and I have never had a problem getting in to see is Dr. Huffman over at Urology Associates of Fredericksburg. Though I never look forward to these appointments for obvious reasons, I am usually out of there in under an hour. Plus the bow-tie and cowboy boots makes me laugh every time and he soooo reminds me of Bill Nye the Science Guy.  The nurses there are great and we have been through some rather invasive tests ; the kind that would make a gynecologist blush. The staff is always nice, I have no problems getting a return call if I leave a message. Unlike most doctors they actually call you with test results instead of scheduling a second appointment to find out. My first meeting with Dr. Huffman was interesting to say the least, he had been held up in an emergency surgery so he was a little rushed coming in. He is reading my chart and is somewhere on page two when he stops and very seriously asks me if I have ever been tested for Multiple Sclerosis. I laughed and referred him to page three where I listed MS. I was impressed that he understood this disease enough to recognize the symptoms and could see right away what the problem was. Unfortunately you really have to leave your modesty at the door for this office, but its not as humiliating as it could be and I do appreciate that. </p> <p> </p> <p>Number three on my list would be Dr. Dahlgren at West End Orthopedics. Very nice guy, and very helpful. Sadly, he was cut from my list of doctors as the ortho issues I was seeing him for were determined to be a deal with it or surgery option. In the end I chose to deal with it. The surgical option was not a viable option as it was something that would also require subsequent surgeries. Dr. Dahlgren was very professional, and knowledgeable . I will say that although Dr. D is awesome I cannot say the same for his colleagues. Dr. Sciaccia wouldn’t operate on my back because I have MS. And Dr. Brown who performed my third foot surgery was inadequate to say the least. I was in the hospital prepped drugged and ready for surgery when the nurse asked if I had any allergies. I then had to wait 4 hours for a non-latex operating room to open up because the doctor didn’t request one though he was told in advanced several times and on every form I had to fill out before surgery date. After 5 hours in surgery I awake and discover Dr. Brown took off before I woke up from anesthesia. I didn’t have a clue how surgery went until he came back the next morning to tell me. This is the surgery that resulted in a big metal plate, and 7 screws holding my foot together. It fell apart in less than 6 months and I was told to walk on it until the screw breaks. the only thing holding this screw in place is my skin. This story leads us to ….</p> <p> </p> <p>Dr. Faccaros with Ortho Specialty Clinic of Fredericksburg. My first visit the only thing he had to go on was my X-ray they performed that day because Dr. Brown’s office refused to send my files over (Even though I went down to Richmond to sign the form because they couldn’t fax it to me). Dr. Faccaros puts me back in the boot and starts me on my way to scheduling surgery. Due to Dr. Brown and Dr. Deschner being incompetent and unprofessional I was forced to cancel surgery last minute. Dr. Faccaros was very nice about it and very understanding. I will end my segment of this guy here as I am still awaiting surgery which will be happening in 2 weeks. </p> <p> </p> <p>Also worth a note, is Advanced Spine and Pain who took over after I fired Dr. Deschner. They were able to work me in quickly, and the doctor I met with was great. She presented me with many more options than the last doctor and we opted for a medication that had worked well in the past. She asked questions and listened to me when I spoke. I am now on a medication that not only works better, but is half the dosage of what I had been on. To boot my new med doesn’t come with any of the side effects I dealt with for the last two years. I am impressed with them so far and hoping we continue without any problems. <div id="scid:0767317B-992E-4b12-91E0-4F059A8CECA8:1f7d4fdf-332d-4b70-b50e-3b719e84dc46" class="wlWriterEditableSmartContent" style="float: none; padding-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; display: inline; padding-right: 0px">Technorati Tags: <a href="http://technorati.com/tags/Deschner" rel="tag">Deschner</a>,<a href="http://technorati.com/tags/Ryan+McDonnell" rel="tag">Ryan McDonnell</a>,<a href="http://technorati.com/tags/Caroline+Chiropractic" rel="tag">Caroline Chiropractic</a>,<a href="http://technorati.com/tags/Richmond" rel="tag">Richmond</a>,<a href="http://technorati.com/tags/Ladysmith" rel="tag">Ladysmith</a>,<a href="http://technorati.com/tags/Fredericksburg" rel="tag">Fredericksburg</a>,<a href="http://technorati.com/tags/VA" rel="tag">VA</a>,<a href="http://technorati.com/tags/Fredericksburg+Urology" rel="tag">Fredericksburg Urology</a>,<a href="http://technorati.com/tags/West+End+Orthopedics" rel="tag">West End Orthopedics</a>,<a href="http://technorati.com/tags/Capital+Spine" rel="tag">Capital Spine</a>,<a href="http://technorati.com/tags/Advanced+Spine+and+Pain" rel="tag">Advanced Spine and Pain</a>,<a href="http://technorati.com/tags/Ortho+Specialty+Clinic" rel="tag">Ortho Specialty Clinic</a>,<a href="http://technorati.com/tags/Faccaros" rel="tag">Faccaros</a>,<a href="http://technorati.com/tags/Huffman" rel="tag">Huffman</a>,<a href="http://technorati.com/tags/Dahlgren" rel="tag">Dahlgren</a>,<a href="http://technorati.com/tags/Brown" rel="tag">Brown</a></div></p> Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-90606122348630800042014-02-24T08:53:00.001-08:002014-02-24T11:40:21.235-08:00Dr. Stephen Deschner, VCU Health System, MCV- Richmond, VirginiaVCU (Virginia Commonwealth University) Health System, MCV (Medical College of Virginia) Hospital, Spine Center, Stony Point Virginia- Dr. Stephen Deschner<br />
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I am writing this post in hopes that it helps anyone who is looking for a pain management doctor in Virginia. I did not want to see these people to begin with, not only because it is a 2 hour drive from my house but also because they are affiliated with MCV Hospital and I wanted nothing to do with this office to begin with. When my pain doctor at Capital Spine Center in Fredericksburg, Virginia (who took over when my nurse practitioner left) wrote the referral I asked multiple times for anyone else. I also asked my primary care doctor to refer me to anyone that is NOT affiliated with MCV. They both told me that I had no other options and Dr. Deschner was the leading doctor in the state of Virginia. <br />
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Allow me to digress for a moment as to why I was referred to this office to begin with. I had been a patient of Capital Spine for about 2 years. My first visit with them was not a good one; I met with a doctor and a nurse practitioner. Dr. Wisor was the doctor assigned to my case. He was an arrogant doctor who I was not as ease with. He yelled at me for firing my last guy and told me I can’t just fire a pain doctor… really? I mean why the hell do you think I am here? If you don’t want the money my insurances pays that is fine I will find another doctor. After meeting with Dr. Wisor and being unimpressed I was then introduced to his nurse practitioner (Michelle O’Conner). She was great and I was told she will be taking over my case and I will be dealing with her from then on. Michelle was great, and with her help I was able to weed out which meds I had been taking from other doctors that were not working. We continued for almost 2 years. We had reached a point that the pain meds were not working well and we were researching other options to discuss at my next appointment. I then received a call 2 weeks later telling me that my appointment had been changed and Michelle is no longer with the practice and I am scheduled to meet with Dr. Raymond Greaser. It is at this appointment that Dr. Greaser informs me that my body seems to have grown a tolerance of this medication (Morphine Sulfate 30 mg 4 x a day) and that we need to consider another option. During this 20 minute visit Dr. Greaser mentions his medical degree from Harvard and interned at Johns Hopkins. Instead of taking over my case and helping me he decided I was unworthy of his services and he wrote a referral to MCV without warning. I explained to him the reasons I do not want to use MCV due to previous experiences. He ignored me and sent me on my way. I then followed up with my primary care doctor (Balaji Raghu), who also agreed with Dr. Greaser that I needed to see VCU/MCV Health. <br />
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I finally conceded that none of my doctors are willing to help me and I had to go to the appointment with Dr. Deschner. My first appointment the doctor and I spent 2 hours going over my medical history step by step. He also agrees that the Morphine Sulfate is not working as well and it should. We then go over two other options in great detail, this takes about another hour. I am told the two options at this point are either Fentanyl or Methadone. Due to my age he did not want to prescribe Methadone. We decided to try the Fentanyl Patches. I then had to drive back to Fredericksburg to see my neurologist. After that appointment I had to drive to 3 different pharmacies before I found one that had the patches. The first day it took a few hours before I began to feel some pain relief. This was one of the hottest days of the year at over 104 degrees outside. I grilled steaks for dinner that night. All was well until bedtime. I went to bed, and as soon as I lay down I was hit with overwhelming nausea and very dizzy. I attempted to close my eyes and wait it out. Instead I found myself running to the bathroom and losing my dinner. I went through my prescription information packet and found on page 3 a note that says not to exercise, take hot showers, use a hot tub, or do anything that would cause an increase of body temperature as it would cause too much of the medication to go into my system at once. This would have been nice to know before starting this med. I was extremely nauseated for 3 days. The pain relief stopped during day 2. I contacted Dr. Deschner’s office and was told to wait it out as I may be adjusting to the medication change. I was also told to try changing locations of new patch (every 3 days). I broke out in a rash the day I removed the patch. I put a new patch on my leg this time instead of my arm. I then broke out in a rash on my leg and still couldn’t eat anything. At this point I decided this was not working for me and I removed the patch and treated the rashes. I called the doctor to move up my appointment and still had to wait another 4 days before my appointment; with no pain medication and 6 broken vertebrae, a broken foot, and Multiple Sclerosis. At this point Dr. Deschner decides I am not worthy of even considering putting me on Methadone (even though he just told me at my last appointment that I had 2 options; Methadone or Fentanyl), and then wrote a prescription for the same Morphine Sulfate for the same amount and same frequency. He will not discuss any other options at this time. <br />
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Fast forward a few months to January. I am still complaining about the Morphine Sulfate not working. This is the reason I was sent to see him in the first place. Knowing that I will be having surgery soon he does not want to put me on a new medication and have to worry about potentially harmful side effects. This means I am to stay on the Morphine Sulfate, doesn’t matter that my body has built a tolerance to this medication over the now 2 years I have been on it. I was able to fill the January prescription without a problem. I was finally cleared for surgery and scheduled to go in on Friday, Feb 14<sup>th</sup>. When I went to pick up my prescription refill on Feb 10<sup>th</sup>, I was informed that my insurance refused to cover the dosage. They would only cover up to three a day. At this point I decide to get in touch with the doctor’s office to get it straight instead of losing one fourth of my prescribed dosage. I also figure if they do not get it straight by Wednesday afternoon, I will go on and have the prescription filled for the 90 pills vs. the 120 prescribed. From Monday to Wednesday I call repeatedly to the doctor trying to get this taken care of. When it still has not been cleared up by Wednesday afternoon I bite the bullet and tell the pharmacy to just fill the 90 because I do not have time to wait. <br />
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This is when the bombshell is dropped. The pharmacist cannot get the prescription to go through for 90 either as the insurance will only approve 3 tablets. Total. Of the 120 prescribed. This is less than a 1 day supply. I am scheduled for surgery in 2 days. Call VCU Health, again, they were no help. I was told that I needed to contact my insurance company. It takes me 95 minutes (yes, over an hour and a half) to get through to a representative with my insurance company. I explain the situation and the importance of getting this done before Friday. The rep sends the necessary paperwork to VCU/ Dr. Deschner along with marking the claim as expedited response because I am out of medication. Thursday morning I contact Dr. Deschner’s office and am informed they did indeed receive the fax and have sent it back but have not heard back from the insurance company. I remind them I am scheduled for surgery the next day. I call back to my insurance company and they tell me they have not received anything from the doctor. Get the doctor back on the line and ask again to get the info sent to insurance. They tell me they have sent it multiple times and every time they call they cannot get through. I ask if he can write me something else so we can just get through this surgery, I am then informed that Dr. Deschner is on vacation until Feb 18<sup>th</sup>, and that no one else can write me a prescription. This makes me wonder which doctor is supposedly signing the prescription amount override paperwork. This lack of help on their part has now led me to cancel my surgery last minute because I cannot get my pain medication filled. <br />
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In all this mishap cost me:<br />
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· 9 days without pain meds<br />
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· 27 phone calls to Dr. Deschner/ VCU/ MCV<br />
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· 7 calls to my insurance company<br />
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· Last minute surgery cancellation<br />
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· 4 trips to the pharmacy<br />
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· An emergency trip to the doctor’s office (2 hours each way from my house)<br />
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· A trip from doctor office to downtown Richmond<br />
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· A quarter or a mile hike each way from my car to the records department on a broken foot.<br />
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I have seen some pretty crappy doctors since being diagnosed with Multiple Sclerosis but this one takes the cake and the trophy. Of the 27 calls that I made to Dr. Deschner’s office, I was able to speak to the nurse 4 times, the other 23 calls resulting in me leaving a message for her and only 3 of those messages were returned. It is day 9 of me being out of pain meds and getting nothing accomplished on their end that I got in my car and drove 2 hours to this office. I was coming off of the exit on the interstate when they called to tell me they had finally gotten my medication approved. At this point I continued on to their office so that I could get a copy of my medical file to take to the next doctor because I was absolutely done with this office. <br />
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One would think asking them to print out your medical record (Pushing the print button after opening my electronic patient file) would not be a big pain, again I am proven wrong. After filling out my request, I am informed that the medical records are handled by MCV, and they would send my request on Friday (It was Wednesday), and then it would take 3 to 4 WEEKS to be processed and sent to me. OR… I could drive to downtown Richmond to MCV, and get them myself and yes I have to pay for getting a copy of my own, but they would be happy to send them to my doctor for free. This is pretty much the only option I have as I cannot reschedule my foot surgery until I have a new pain management doctor. <br />
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Not only am I adding another 40 miles to my trip to get to MCV, but I have to pay to park in the only parking deck which is so full it take me 5 levels below the street before I find a spot. Of course this spot is at the far end of the parking lot and I have to walk (with my broken foot in a cast to hold it together) all the way to the other end to get to the elevator. I make it into the hospital and get directions to the records department which is 3 buildings away all connected with tunnels and steep ramps (according to my maps on my phone it is a quarter of a mile hike). I finally hobble into the records department. Fortunately for me, they are somewhat competent and they are able to produce my medical file and it only cost me $9.00 for all 18 pages of it. Then I had to hobble back to my car, pay for parking and make my way back up to Fredericksburg. Then instead of going home, I had to go back to the pharmacy to get my medication. <br />
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I was fortunate enough to find a doctor up here that was not only willing to see me but willing to actually treat me. I decided to write all of this out for one reason. I hope that anyone considering using VCU, MCV, or Dr.Deschner sees this before they make an appointment. I hope that I can save at least one person from ever having to go through all of this unnecessary torture. There was no reason whatsoever that anyone would be treated like this. I know that this is a really long post but I feel like this real-life nightmare needed to be shared. <br />
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<div class="wlWriterEditableSmartContent" id="scid:0767317B-992E-4b12-91E0-4F059A8CECA8:7965b976-a1d9-41bd-a194-f1845538539d" style="display: inline; float: none; margin: 0px; padding: 0px;">
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Technorati Tags: <a href="http://technorati.com/tags/Stephen" rel="tag">Stephen</a>,<a href="http://technorati.com/tags/Deschner" rel="tag">Deschner</a>,<a href="http://technorati.com/tags/Richmond" rel="tag">Richmond</a>,<a href="http://technorati.com/tags/Virginia" rel="tag">Virginia</a>,<a href="http://technorati.com/tags/Medical+College+of+Virginia" rel="tag">Medical College of Virginia</a>,<a href="http://technorati.com/tags/Virginia+Commonwealth+University" rel="tag">Virginia Commonwealth University</a>,<a href="http://technorati.com/tags/MCV" rel="tag">MCV</a>,<a href="http://technorati.com/tags/VCU" rel="tag">VCU</a>,<a href="http://technorati.com/tags/Fentanyl" rel="tag">Fentanyl</a>,<a href="http://technorati.com/tags/Morhine" rel="tag">Morhine</a>,<a href="http://technorati.com/tags/Sulfate" rel="tag">Sulfate</a>,<a href="http://technorati.com/tags/Pain" rel="tag">Pain</a>,<a href="http://technorati.com/tags/Management" rel="tag">Management</a>,<a href="http://technorati.com/tags/Spinal" rel="tag">Spinal</a>,<a href="http://technorati.com/tags/Fractures" rel="tag">Fractures</a>,<a href="http://technorati.com/tags/Lisfranc+Dislocation" rel="tag">Lisfranc Dislocation</a>,<a href="http://technorati.com/tags/Stony+Point" rel="tag">Stony Point</a>,<a href="http://technorati.com/tags/Incompetent" rel="tag">Incompetent</a>,<a href="http://technorati.com/tags/Horrible" rel="tag">Horrible</a>,<a href="http://technorati.com/tags/Withdrawal" rel="tag">Withdrawal</a>,<a href="http://technorati.com/tags/Aetna" rel="tag">Aetna</a>,<a href="http://technorati.com/tags/Medicare" rel="tag">Medicare</a>,<a href="http://technorati.com/tags/Patient" rel="tag">Patient</a>,<a href="http://technorati.com/tags/Review" rel="tag">Review</a></div>
Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-32470502705278806602014-02-11T07:03:00.001-08:002014-02-11T07:04:33.046-08:00Valentine’s Day is in 3 days.<p>I have a date this Valentine’s Day. I plan on wearing a very revealing gown for the doctor who can’t keep his hands off of me. He has told me he plans on strapping me down and having his way with me. I was also told to pack a bag because he is not letting me go home afterwards.</p> <p> </p> <p>Yes, that’s right boys and girls… I am scheduled for surgery #4 on Friday. It’s an in-patient procedure. Even though we have been trying to schedule surgery this week, so I had my fiancé take his last week of vacation because we were sure it would be this week, my idiot primary doctor couldn’t pull his head out of his ass long enough to sign my pre-surgery clearance. Did I mention my fiancé is due back at work on Friday?</p> <p> </p> <p>Because I wasn’t stressed out enough my doctor decided to make matters worse by making me think there was something wrong with my heart and the foot surgery was the least of my problems. My EKG test came back abnormal. Instead of redoing the EKG test while I was still hooked up to the machine he decided to freak out and send me to a cardiologist insisting that I go the same day. </p> <p> </p> <p>I go to the Cardiologist that afternoon. I met with the first doctor who tells me they are doing an ultrasound on my heart and if that comes back normal they will clear me for surgery, if it doesn’t come back normal they will request a stress test. Cardio doctor number 2 does the ultrasound, refuses to tell me anything about it and schedules me for a stress test the next morning. He tells me he is ordering a nuclear stress test instead of a regular physical test because my foot is broken. </p> <p> </p> <p>I go home that evening and try VERY hard not to freak out. I get schedules all coordinated so that I can make it to the test on time. The next morning I wake up to discover school is a 2 hour delay for the children. Which messes up the whole plan and I end up calling my mom to wake her up and beg her to come to my house and get the kids off to school. Everyone is taken care of and schedules are once again adjusted. </p> <p> </p> <p>The stress test is a fasting test, so I am not allowed food or drink before I go. Mind you my meds make my mouth drier than the Sahara. Add to this the stress of the morning and not allowed coffee before getting in my car and driving in morning traffic towards DC to get there. I am injected with dye and then sent to the waiting room that is filled to the point that there are no empty chairs.  I am then allowed to have water. We all sit together in that room for the next 4 hours! I was then called back for a set of pictures and then released to the real world where I am told to grab a cup of coffee and a quick lunch and to return in 30 minutes. YAY COFFEE! I return to the office and was immediately called back. </p> <p> </p> <p>I was injected with the nuclear drug that causes your heart stress and then… I kid you not, they still put me on a treadmill. Yes I am wearing an air cast. Yes, I have told them repeatedly I need them to sign off on my foot surgery. Yes I pointed out the reason they ordered a nuclear test was because my foot is broken. And still, I am on a treadmill. And by the way if you want to know how that nuclear test feels, it’s like an elephant sat on your chest without warning and makes you suddenly dizzy (which is why I almost fell coming off the damn treadmill). Another set of pictures after that and I am on my way to get my blood work done that the doctor needs to have the results on the next day.  The stress test took 5 hours in total. </p> <p>After all of this is over, I left a message with surgeon letting them know what I had to do before primary doctor can sign off on surgery. I also let them know about treadmill. He was not a happy camper. The next morning I go back to my primary guy who ordered all of this crap. I tell him about the test, now he’s pissed off they put me on a treadmill. He FINALLY signs off on the surgery and they found no problems with my heart. </p> <p> </p> <p>We have been planning surgery for over a month to perform this surgery this week. Since the day he told me we are doing surgery this week, I have had 3 appointments with my primary guy, blood work, urine test, 2 EKGs, 1 stress test, a second appointment with my surgeon, 1 appointment with my pain management guy, and a nerve test at the hospital. Also got fiancé to take this week off, trying to get kids schedules to coordinate with his days off, and get all meds refilled and packed. Surgeon got the clearance form on Thursday of last week, I called Friday to confirm they received it. I don’t get a call back until Monday, and the only day we can get an operating room this week is the one day I asked not to have surgery because I know the man is going back to work on Friday.</p> <p> </p> <p>One would think this story is finally coming to an end, but wait, there’s more! I go to refill my pain meds. Same prescription for the same amount as last month. My insurance paid for these meds last month. This month however, my insurance will only cover 90 of my 120 pills prescribed. If they fill 90 I will not get the last 30 pills I need. They charge my insurance $90 a month for these pills. So I ask can I pay for what the insurance doesn’t cover. No, I cannot do that. But I have options, I can try to get the dr to preauthorize it with insurance, I can get the 3/4 of prescription that insurance will cover, or I cam pay for the entire thing which will not cost me $90 but will cost me over $400. </p> <p>This is my life lately. Nope, nothing to stress about here! I am not looking forward to this surgery, but damn I will be happy when it’s over. </p> <div id="scid:0767317B-992E-4b12-91E0-4F059A8CECA8:9a5ca716-45c3-4e30-98f4-3d819019677a" class="wlWriterEditableSmartContent" style="float: none; padding-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; display: inline; padding-right: 0px">Technorati Tags: <a href="http://technorati.com/tags/Lisfranc+Dislocation" rel="tag">Lisfranc Dislocation</a>,<a href="http://technorati.com/tags/surgery" rel="tag">surgery</a>,<a href="http://technorati.com/tags/valentines+day" rel="tag">valentines day</a>,<a href="http://technorati.com/tags/pain+management" rel="tag">pain management</a>,<a href="http://technorati.com/tags/doctors" rel="tag">doctors</a>,<a href="http://technorati.com/tags/multiple+sclerosis" rel="tag">multiple sclerosis</a>,<a href="http://technorati.com/tags/stress+test" rel="tag">stress test</a>,<a href="http://technorati.com/tags/ms" rel="tag">ms</a>,<a href="http://technorati.com/tags/radioactive" rel="tag">radioactive</a>,<a href="http://technorati.com/tags/foot" rel="tag">foot</a>,<a href="http://technorati.com/tags/fractures" rel="tag">fractures</a>,<a href="http://technorati.com/tags/bones" rel="tag">bones</a>,<a href="http://technorati.com/tags/stress" rel="tag">stress</a></div> Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-13976273230956833462013-11-18T06:18:00.001-08:002013-11-18T06:18:40.258-08:00Yes, it has been a while since my last post. I do apologize as it has been a crazy couple of weeks. I am currently working on getting my workout written out for everyone and looking back on the beginning of my own fitness journey. <br />
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Before that I would like to say that as time has passed I have become more convinced that stopping the MS meds was the best decision I have made in the last 5 years. I read an article yesterday about Sanofi Corp being approved by the FDA with a 14-0 vote to pass their new MS med. They did not however agree on the efficacy of the drug, and they say that there was not valid testing results and they still approved this med. <br />
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I am posting a link to this article because there is something I would like to point out. When I say I do not believe there will be a cure for MS anytime soon, I say this because it is not good business sense to cure this disease. By "treating" MS, these companies have made BILLIONS of dollars. Why would you provide a cure no matter the price? What would happen to these companies if they provided a cure for patients? I am not trying to be cynical, I am just stating the obvious here. <br />
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This is the last quarter earnings for said companies. Note I say QUARTER as in one fourth of the yearly total. <br />
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<table border="1" cellpadding="7" cellspacing="0"><tbody>
<tr valign="TOP"><td width="141"><span><span><span><strong>Company</strong></span></span></span></td><td width="142"><span><span><span><strong>MS Treatment</strong></span></span></span></td><td width="142"><span><span><span><strong>Revenue (most recent quarter)</strong></span></span></span></td><td width="141"><span><span><span><strong>Growth (<strong>YOY)</strong></strong></span></span></span></td></tr>
<tr valign="TOP"><td width="141"><span><span><span><strong>Novartis</strong></span></span></span></td><td width="142"><span><span><span>Gilenya</span></span></span></td><td width="142"><span><span><span>$518 million</span></span></span></td><td width="141"><span><span><span>64%</span></span></span></td></tr>
<tr valign="TOP"><td width="141"><span><span><span><strong>Sanofi</strong></span></span></span></td><td width="142"><span><span><span>Aubagio</span></span></span></td><td width="142"><span><span><span>$59 million</span></span></span></td><td width="141"><span><span><span>N/A</span></span></span></td></tr>
<tr valign="TOP"><td width="141"><span><span><span><strong>Biogen Idec</strong></span></span></span></td><td width="142"><span><span><span>Tecfidera</span></span></span></td><td width="142"><span><span><span>$286 million</span></span></span></td><td width="141"><span><span><span>N/A</span></span></span></td></tr>
<tr valign="TOP"><td width="141"><span><span><span><strong>Biogen Idec</strong></span></span></span></td><td width="142"><span><span><span>Tysabri</span></span></span></td><td width="142"><span><span><span>$403 million</span></span></span></td><td width="141"><span><span><span>0%</span></span></span></td></tr>
<tr valign="TOP"><td width="141"><span><span><span><strong>Biogen Idec</strong></span></span></span></td><td width="142"><span><span><span>Avonex</span></span></span></td><td width="142"><span><span><span>$733 million</span></span></span></td><td width="141"><span><span><span>0%</span></span></span></td></tr>
<tr valign="TOP"><td width="141"><span><span><span><strong>Teva</strong></span></span></span></td><td width="142"><span><span><span>Copaxone</span></span></span></td><td width="142"><span><span><span>$1.05 billion</span></span></span></td><td width="141"><span><span><span>1%</span></span></span></td></tr>
</tbody></table>
Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-68118827253664939802013-10-31T19:29:00.001-07:002013-10-31T19:29:38.910-07:00REVISED Warm-Up/ Cool-Down Routine<p> </p> <p>I posted this earlier today but somehow the formatting didn’t transfer very well and I ended up with a mess and half of the pages missing. </p> <p> </p> <p> </p> <p>This is my warm-up and cool down routine that I use prior to and after my workout. This is also a great place to start when you first get out of bed to loosen your joints/ muscles. </p> <p>Some people have benefited from having a yoga block (hard foam block) to start out with yoga poses until they are flexible enough to reach the ground. </p> <p>Be aware of your body. Do not force the poses. Maintaining balance is key to any workout. Don’t be discouraged if you cannot do the whole routine. As I have said, this is the routine I use and your needs may be different from mine.</p> <p>I do 5-10 reps for each pose before beginning my workout routine. Hold each pose for 15-30 seconds while maintaining normal breathing. </p> <p>*** Please note these are not my pictures. Most of the pictures shown below come from <a href="http://www.yogajournal.com">http://www.yogajournal.com</a> which is a great website you can use to track your progress and also has sequence builder you may use to build your own routine around your needs. ****</p> <p>Another great website to check out if you want more info for each pose is <a href="http://www.abc-of-yoga.com">http://www.abc-of-yoga.com</a> <table cellspacing="0" cellpadding="0" border="1"><tbody> <tr> <td valign="top" width="163"> <p><a href="http://lh6.ggpht.com/-K_gVNQosUXM/UnMRvgFowrI/AAAAAAAAArQ/QSu_C3K-_Eo/s1600-h/clip_image001%25255B3%25255D.jpg"><img title="clip_image001" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image001" src="http://lh6.ggpht.com/-HfwfUGU9vKA/UnMRwRqxHBI/AAAAAAAAArU/UnrdxcXC5mg/clip_image001_thumb.jpg?imgmax=800" width="154" height="154" /></a></p> </td> <td valign="top" width="187"> <p>Mountain Pose:</p> <p>Stand tall with your feet together and arms by your side. If you have a hard time balancing with your feet together, widen your stance a few inches so that your feet are hip width apart. As you breathe in, bring in your belly button and lift your chest. Stretch your toes out to find your center. You may also want to rock back and forth between your heel and balls of your feet until you find a comfortable balance. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh3.ggpht.com/-iBwxwELHIjM/UnMRwwygyPI/AAAAAAAAArg/9RG1sIIh3D8/s1600-h/clip_image003%25255B3%25255D.gif"><img title="clip_image003" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image003" src="http://lh4.ggpht.com/-5vlcSnqnIDk/UnMRxVRvHAI/AAAAAAAAArk/KuH6LRi9bE4/clip_image003_thumb.gif?imgmax=800" width="159" height="211" /></a></p> </td> <td valign="top" width="187"> <p>Back Bend:</p> <p>From Mountain Pose, as you breathe in, slowly lift your arms upwards. Interlace your fingers above your head. On exhale, slowly bend your back and stretch backwards bringing your arms behind you. Bring your body back to mountain pose as your inhale. Remember to keep your legs firmly planted and your body centered to maintain balance in this position.</p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh6.ggpht.com/-Gw93Pq_vF3Y/UnMRxl24PzI/AAAAAAAAArs/Gah7b3m6uwc/s1600-h/clip_image004%25255B3%25255D.jpg"><img title="clip_image004" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image004" src="http://lh3.ggpht.com/-CZjR845RsFA/UnMRye1iqrI/AAAAAAAAAr4/UQis_0bqH60/clip_image004_thumb.jpg?imgmax=800" width="129" height="244" /></a></p> </td> <td valign="top" width="187"> <p>Forward Bend:</p> <p>From Mountain Pose, breathe in while slowly lifting your arms upwards above your head. As you exhale, bend from your hips and stretch forward placing your hands on the ground. If you find this difficult, you can put your hands on your thighs or bend as far as you feel comfortable with. Return to Mountain Pose as you inhale. As you become more comfortable in this pose, walk your hands inwards towards your feet until your hands are resting beside your feet. Remember to keep your legs straight and center your body.</p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh3.ggpht.com/-wRutyOB4NoM/UnMRy85I65I/AAAAAAAAAr8/O1IX6DXQi1Y/s1600-h/clip_image005%25255B3%25255D.jpg"><img title="clip_image005" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image005" src="http://lh6.ggpht.com/-CwfyxyRKcIg/UnMRzZ-BhPI/AAAAAAAAAsI/QXe1SQftxYs/clip_image005_thumb.jpg?imgmax=800" width="154" height="154" /></a></p> </td> <td valign="top" width="187"> <p>Wide Legged Forward Bend:</p> <p>From Mountain Pose, spread your legs wide and inhale. As you exhale, bend forward and place your hands on the floor in front of you. As you get comfortable with this pose, walk your hands inwards towards your body until your head and hands are centered between your legs. Keep your legs straight and balance your weight on your feet. Bring your body upright as you inhale. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh6.ggpht.com/-WCaxdrCZwiI/UnMR0AOKMWI/AAAAAAAAAsM/5TtRI4fobj0/s1600-h/clip_image006%25255B3%25255D.jpg"><img title="clip_image006" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image006" src="http://lh6.ggpht.com/-ER4cvPMaXcM/UnMR0WQBk8I/AAAAAAAAAsU/TbMYuchn2eQ/clip_image006_thumb.jpg?imgmax=800" width="153" height="153" /></a></p> </td> <td valign="top" width="187"> <p>High Lunge:</p> <p>From the Forward Bend Pose, turn your body slightly to the left so that you’re facing the left leg and your left foot is pointed outwards. Your right foot will be strong behind you with your toes facing forward. Inhale. As you exhale, push your torso forward so that it is aligned with your left knee and your hands are touching the ground on either side of your left foot. If you have difficulty with this pose, you may place your hands on your left knee instead of the floor. You should feel both of your legs stretching and keep your body centered and elongated. Inhale, bring your body back to a wide leg stance, swivel your body and repeat on the right side. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh3.ggpht.com/-UBbobimPw40/UnMR1BKL3aI/AAAAAAAAAsg/ztf4fUJNCRE/s1600-h/clip_image008%25255B3%25255D.jpg"><img title="clip_image008" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image008" src="http://lh3.ggpht.com/-mQTfxtiixNY/UnMR1gah-hI/AAAAAAAAAsk/yIsXdQOVT7k/clip_image008_thumb.jpg?imgmax=800" width="142" height="142" /></a></p> </td> <td valign="top" width="187"> <p>Low Lunge:</p> <p>From High Lunge Pose,(inhale) bring your back leg to the floor from knee down. Point your right foot forward and your left foot should be pointing outward behind you. As you exhale, bring your arms upward, and lean into your right leg. Inhale, bring your body back into a wide leg stance, swivel on your heels and repeat for the left side. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh5.ggpht.com/-nqJaEkFF1MI/UnMR18ESIGI/AAAAAAAAAsw/DioLhNV3p8M/s1600-h/clip_image009%25255B3%25255D.jpg"><img title="clip_image009" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image009" src="http://lh3.ggpht.com/-YtJIaLYLUr8/UnMR2uGpi-I/AAAAAAAAAs0/0U-1apChPgo/clip_image009_thumb.jpg?imgmax=800" width="154" height="154" /></a></p> </td> <td valign="top" width="187"> <p>Plank Pose:</p> <p>Turn your body so that you are on your knees with your arms directly under your shoulders. Spread your fingers for better balance. Tuck your toes and step back with your feet so that your body is in a straight line. As you inhale, pull in your pelvic muscles towards your spine. Relax those muscles as you exhale. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh3.ggpht.com/-vrBBjKzbmpo/UnMR3Lqr6FI/AAAAAAAAAtA/yiPgee2bh2g/s1600-h/clip_image010%25255B3%25255D.jpg"><img title="clip_image010" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image010" src="http://lh3.ggpht.com/-zhOhZ63Pey0/UnMR3oX5ekI/AAAAAAAAAtI/zKlBvwVQRNI/clip_image010_thumb.jpg?imgmax=800" width="154" height="154" /></a></p> </td> <td valign="top" width="187"> <p>Downward Facing Dog:</p> <p>From Plank Pose, (inhale) walk your hands backwards and bring your hips/ butt upwards so that your body forms an upside down V. Bring your abdomen in towards your spine and elongate your body stretching upwards as you exhale. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh3.ggpht.com/-xr3_fQrwePc/UnMR4ZFme-I/AAAAAAAAAtQ/2miN6zHLD1U/s1600-h/clip_image011%25255B3%25255D.jpg"><img title="clip_image011" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image011" src="http://lh6.ggpht.com/-XidAs-wax0I/UnMR5BB6BOI/AAAAAAAAAtU/GK9b0Pmebm0/clip_image011_thumb.jpg?imgmax=800" width="154" height="154" /></a></p> </td> <td valign="top" width="187"> <p>Child’s Pose:</p> <p>From Downward Facing Dog Pose, bring your knees in to touch the floor. With your torso tall and upright, inhale. As you exhale bend your torso forward to rest upon your knees with your head down and arms on either side of your legs. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh6.ggpht.com/-POaCrdeev5s/UnMR56PvXUI/AAAAAAAAAtg/4ThtXNy7Tz4/s1600-h/clip_image012%25255B3%25255D.jpg"><img title="clip_image012" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image012" src="http://lh6.ggpht.com/-HRjKmFbUVvQ/UnMR6I1q4lI/AAAAAAAAAtk/JF-tMsT_5ns/clip_image012_thumb.jpg?imgmax=800" width="154" height="154" /></a></p> </td> <td valign="top" width="187"> <p>Cobra Pose:</p> <p>From Child’s Pose, bring your body forward so that your stomach is on the floor and your legs are straight and the tops of your feet are on the floor. On inhale, pressing your thighs into the floor and bringing your elbows in towards your body, push up with your arms and bring your torso up off of the floor. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh3.ggpht.com/-5JbaOq6tWRM/UnMR6p3B2AI/AAAAAAAAAtw/KU7Y0-jwkpI/s1600-h/clip_image013%25255B3%25255D.jpg"><img title="clip_image013" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image013" src="http://lh5.ggpht.com/-A7UCRjYouQE/UnMR7oE_0HI/AAAAAAAAAt4/nLpvkyDhzKI/clip_image013_thumb.jpg?imgmax=800" width="154" height="154" /></a></p> <p>Cow</p> <p><a href="http://lh5.ggpht.com/-1ufaY1sbKIs/UnMR8JB1jlI/AAAAAAAAAt8/kQSY1uuGF40/s1600-h/clip_image015%25255B3%25255D.jpg"><img title="clip_image015" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image015" src="http://lh4.ggpht.com/-z5pCkhwxav8/UnMR8gNmSuI/AAAAAAAAAuI/YtZgOMF7cXM/clip_image015_thumb.jpg?imgmax=800" width="154" height="154" /></a> Cat</p> </td> <td valign="top" width="187"> <p>Cow Pose & Cat Pose</p> <p>From Cobra Position, bring your arms perpendicular to your shoulders and rock your body back onto your knees with your upper body perpendicular to the floor (also known as Table Top Pose). As you inhale, lift your chest and buttocks towards the ceiling allowing your stomach push down slightly to the floor. Return to Table Top Pose. From Table Top Pose, tuck your head and chest so that your head is pointed downwards. As you exhale, round your spine and bring your spine upwards towards the ceiling while pushing your buttocks inward towards the floor. I combined these two together for a better stretch. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh3.ggpht.com/-0ansPNLJRx0/UnMR9RfODgI/AAAAAAAAAuM/7uRkY0C68lc/s1600-h/clip_image017%25255B3%25255D.jpg"><img title="clip_image017" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image017" src="http://lh5.ggpht.com/-Mom5izFkuaw/UnMR-NlZ_EI/AAAAAAAAAuY/IEjUebnKeMo/clip_image017_thumb.jpg?imgmax=800" width="166" height="154" /></a></p> </td> <td valign="top" width="187"> <p>Mariachi’s Pose:</p> <p>Sit on the floor with your legs together and in front of your torso make sure you are sitting upright with your torso tall and straight (this is known as Staff Pose). Bring your left knee up and place your left foot flat on the floor as close to your buttocks as possible. As you exhale, turn your torso to the left. Use your left hand to balance behind you and bring your right arm over the left thigh. Keep your spine/ Torso centered and upright. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh3.ggpht.com/-maUyMW-9kzA/UnMR-1dw10I/AAAAAAAAAug/3JEWs077yNM/s1600-h/clip_image018%25255B3%25255D.jpg"><img title="clip_image018" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image018" src="http://lh4.ggpht.com/-JMhU3c7qoys/UnMR_sqGEnI/AAAAAAAAAuk/cnbIa4uGkSs/clip_image018_thumb.jpg?imgmax=800" width="154" height="154" /></a></p> </td> <td valign="top" width="187"> <p>Fish Pose: </p> <p>Lie down on your back with your legs straight and your feet together. Place your hands palms down under your thighs. Pressing down on your elbows, inhale and arch your back, bringing your chest up towards the ceiling and dropping your head so that the top of your head is touching the floor. Breathe deeply and keep your legs relaxed. </p> </td> </tr> <tr> <td valign="top" width="163"> <p><a href="http://lh6.ggpht.com/-xZUGuCc0-hI/UnMSAS8lg4I/AAAAAAAAAuw/xwOXclqnreE/s1600-h/clip_image019%25255B3%25255D.jpg"><img title="clip_image019" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image019" src="http://lh5.ggpht.com/-LvAA93w1Fbs/UnMSA33K-6I/AAAAAAAAAu0/2S5nssa4EFg/clip_image019_thumb.jpg?imgmax=800" width="154" height="154" /></a></p> </td> <td valign="top" width="187"> <p>Bridge Pose:</p> <p>Lie on your back with your knees bent and your palms facing upward on each side of your body. Lift your hips up towards the ceiling, squeezing your thighs and glutes. </p> </td> </tr> </tbody></table> </p> <p>At this point I move on to my balance ball. I do 10 reps of each. <table cellspacing="0" cellpadding="0" border="1"><tbody> <tr> <td valign="top" width="162"> <p><a href="http://lh3.ggpht.com/-dYrGZRMCh0Y/UnMSBVOCCHI/AAAAAAAAAu8/InB5gPWEk7Y/s1600-h/clip_image021%25255B3%25255D.jpg"><img title="clip_image021" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image021" src="http://lh5.ggpht.com/-hKdd8rfilbI/UnMSB1n2sDI/AAAAAAAAAvE/15JNVHB0bNo/clip_image021_thumb.jpg?imgmax=800" width="180" height="121" /></a></p> </td> <td valign="top" width="283"> <p>Hip Rotations/ Seated Hip Roll:</p> <p>Sit on the ball with your legs perpendicular to the floor, hip with apart, feet flat on the ground. Roll your hips to the left and back to center. Repeat with right side. Place your hands on your hips and roll your hips in a circle to the left then to the right while keeping your upper body straight and still. </p> </td> </tr> <tr> <td valign="top" width="162"> <p><a href="http://lh5.ggpht.com/-TmIQLkHgsiM/UnMSCdGcnMI/AAAAAAAAAvQ/cbTRbgBRepY/s1600-h/clip_image023%25255B3%25255D.jpg"><img title="clip_image023" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image023" src="http://lh4.ggpht.com/-ieL3pltEbw4/UnMSC-M18kI/AAAAAAAAAvY/fPVLBI96fVA/clip_image023_thumb.jpg?imgmax=800" width="181" height="122" /></a></p> </td> <td valign="top" width="283"> <p>Pyramid Stretch:</p> <p>Lie on the ball balancing on your hips with your head and body stretched outward. With your hands and feet on the floor, pull your hips upward towards the ceiling. </p> </td> </tr> <tr> <td valign="top" width="162"> <p><a href="http://lh6.ggpht.com/-6JyNA7vJwSo/UnMSDmBY3JI/AAAAAAAAAvc/ALYytz40L6w/s1600-h/clip_image025%25255B3%25255D.jpg"><img title="clip_image025" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="clip_image025" src="http://lh3.ggpht.com/-VwFEERSoOWo/UnMSEFDjMPI/AAAAAAAAAvo/lPcrTSMO9pw/clip_image025_thumb.jpg?imgmax=800" width="181" height="122" /></a></p> </td> <td valign="top" width="283"> <p>Ball Arch:</p> <p>Lie with your lower back across the ball with your hands on each side of your head and your feet flat on the floor. Slowly roll your body so that your head is closer to the floor and roll back up to a bridge position. You will roll onto your heels with your toes facing upwards towards the ceiling. </p> </td> </tr> </tbody></table> </p> <p>And that is my warm- up/ cool-down routine. I know in the beginning it seems like a lot, but once you get the hang of it, it is rather easy. </p> <div id="scid:0767317B-992E-4b12-91E0-4F059A8CECA8:f21ca102-3476-4c96-bbe9-738cd48b68c5" class="wlWriterEditableSmartContent" style="float: none; padding-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; display: inline; padding-right: 0px">Technorati Tags: <a href="http://technorati.com/tags/Workout" rel="tag">Workout</a>,<a href="http://technorati.com/tags/Yoga" rel="tag">Yoga</a>,<a href="http://technorati.com/tags/Beginners" rel="tag">Beginners</a>,<a href="http://technorati.com/tags/Multiple+Sclerosis" rel="tag">Multiple Sclerosis</a>,<a href="http://technorati.com/tags/MS" rel="tag">MS</a>,<a href="http://technorati.com/tags/PPMS" rel="tag">PPMS</a>,<a href="http://technorati.com/tags/Weight+Loss" rel="tag">Weight Loss</a>,<a href="http://technorati.com/tags/Exercise" rel="tag">Exercise</a>,<a href="http://technorati.com/tags/Balance+Ball" rel="tag">Balance Ball</a>,<a href="http://technorati.com/tags/Swiss+Ball" rel="tag">Swiss Ball</a>,<a href="http://technorati.com/tags/Stretching" rel="tag">Stretching</a>,<a href="http://technorati.com/tags/Balance" rel="tag">Balance</a>,<a href="http://technorati.com/tags/Core" rel="tag">Core</a>,<a href="http://technorati.com/tags/Strength" rel="tag">Strength</a>,<a href="http://technorati.com/tags/Training" rel="tag">Training</a></div> Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com1tag:blogger.com,1999:blog-5277259792556670982.post-45295983988882484442013-10-28T07:10:00.001-07:002013-10-28T07:10:56.544-07:00Before You Begin A New Workout Routine<p><font size="3">Before posting my workout s and how I have adapted them to fit my needs, I wanted to touch base on some things you should know before you start working out. These are things I have found to help reduce fatigue and muscle pains. </font></p> <p><font size="3">A few things to know before you attempt any workout:</font></p> <p><font size="3">· Stay hydrated!! Before during and after your workout, you need to be hydrated. This is one of the most important lessons that I had to learn the hard way. Aside from maintaining your proper body temperature, when you sweat your body releases toxins from your system and being dehydrated causes these toxins to build up which causes cramping and pain after your workout. Also remember that coffee, tea, and soda actually increase dehydration. </font></p> <p><font size="3">· Take an anti-inflammatory (such as Aleve, Tylenol, Advil) before workout to help reduce muscle and joint pain after your workout. It has also been proven that vitamin C has shown benefits in decreasing muscle aches and helping muscles to heal after a workout.</font></p> <p><font size="3">· “Brace For It”- All of those old injuries will be popping back up if you do not take measures to stabilize the area.</font></p> <p><font size="3">· Stretch/ Warm-up. You don’t jump into your car on a cold winter day, start it up and start doing 80mph without expecting trouble. The same can be said for your body. Just as important as warming up, your body also needs to cool down. Although I do my cool down as part of my routine, I also spend another 20-30 minutes resting and allowing my body to slowly cool off before heading into a warm shower to help relax my muscles. </font></p> <p><font size="3">· Learn to listen to your body. Pushing the limits is one thing and minor muscle discomfort can be expected, this is sometimes referred as DOMS (Delayed Onset Muscle Soreness). Serious pain and pain that lasts more than 24 hours is not normal and a sign that you need to change something in your routine. </font></p> <p><font size="3">· You need to rest between workouts. Your body needs to be able to recover. </font></p> <p><font size="3">· Wear breathable clothing. </font></p> <p><font size="3">· Proper nutrition is vital to maintaining your body. Your body needs to be fed properly in order to burn calories and build muscle strength. Your car doesn’t run without gas, neither does your body. <div id="scid:0767317B-992E-4b12-91E0-4F059A8CECA8:54c1f0e6-9fd5-4e3b-b832-930416b48e87" class="wlWriterEditableSmartContent" style="float: none; padding-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; display: inline; padding-right: 0px">Technorati Tags: <a href="http://technorati.com/tags/workout" rel="tag">workout</a>,<a href="http://technorati.com/tags/work-out" rel="tag">work-out</a>,<a href="http://technorati.com/tags/multiple+Sclerosis" rel="tag">multiple Sclerosis</a>,<a href="http://technorati.com/tags/ms" rel="tag">ms</a>,<a href="http://technorati.com/tags/fractures" rel="tag">fractures</a>,<a href="http://technorati.com/tags/hydration" rel="tag">hydration</a>,<a href="http://technorati.com/tags/tips" rel="tag">tips</a>,<a href="http://technorati.com/tags/getting+started" rel="tag">getting started</a>,<a href="http://technorati.com/tags/inflammation" rel="tag">inflammation</a>,<a href="http://technorati.com/tags/muscle" rel="tag">muscle</a>,<a href="http://technorati.com/tags/joint+Flex" rel="tag">joint Flex</a>,<a href="http://technorati.com/tags/pain+Management" rel="tag">pain Management</a>,<a href="http://technorati.com/tags/pain" rel="tag">pain</a>,<a href="http://technorati.com/tags/injury" rel="tag">injury</a>,<a href="http://technorati.com/tags/nutrition" rel="tag">nutrition</a></div> </font></p> <p><font size="3">I am the last person in the world to tell anyone to listen to their doctor. According to my doctors, I should not be able to walk much less work out. My sheer stubbornness has gotten me this far and I will not be giving up anytime soon no matter what my doctors think is better for me. My doctors do not have to live inside of my body and they do not have to manage the pain, I do. That is not to say everyone should ignore their doctors. I do recommend consulting with your doctor and or a physical therapist beforehand. They can be beneficial in helping you to find the correct position and exercises to suit your needs. </font></p> Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-88981472318327050862013-10-25T11:42:00.001-07:002013-10-25T11:42:17.541-07:0032 Pounds Down 18 To Go<p>I am proud to announce that I am 32 pounds lighter. Even more proud to announce I have discovered a miraculous range of motion in my back that I never thought would be possible again after breaking my T10 to L1 vertebrae. I will attribute this to a combination of chiropractic and refusing to listen o my doctors. There are a few reasons my doctors all seem to think I should not be able to walk much less workout. For starters I have MS… Primary Progressive Multiple Sclerosis. Then there are the broken bones in my back that have resulted in more damage to my spinal cord and more pain. Since all of that wasn’t fun enough, I broke my foot (Lisfranc Fracture) which has left me $45,000 in debt after 3 failed surgeries. I am not looking forward to surgery #4, but know it is going to need to happen sometime in the near future. I share all of this for a reason. After being in a wheelchair for almost a year and being on bed rest I managed to gain 12 pounds. This left me weighing more than I have ever weighed, including being pregnant with my daughter. It was time to take charge and get rid of this weight. </p> <p> </p> <p>Once the weight started coming off, I found a few other perks from my new routine. The more weight I lost, the less pain I felt in my back. I have decreased the amount of pain meds I am on. The increase in energy alone has made this journey worth it; I am getting more done throughout the day without having to plan my day around a nap. I was absolutely shocked and amazed a few weeks ago when doing my leg lifts and deciding to see how much further my legs would go before my back says no; I was able to put my legs on the floor above my head. I couldn’t believe it. I did it 15 more times and then sat there and cried like a baby for 2 hours, not because I was in pain but because I never thought I would be able to do that again. In the beginning, the weight began to come off rather quickly. The first 20 pounds were a breeze; the last 12 have been slow going with another 18 to go to hit my target.</p> <p> </p> <p>There have also been a few pitfalls of this new routine. For starters, I have to force myself to take the time each day to work out and I have to remind myself often that I need to continue with this plan. Because of all of the injuries I have to suit up in order to start my workout which is a workout in and of itself. There is a mid-lower back brace, an upper back brace, and a foot brace. Most days I do not mind the muscle pain, as it reminds me of how far I have come, but I had to learn how to judge the difference in workout ache vs. a real injury and I have learned that the hard way more than once. Also because of all of the injuries I have had to adapt my exercises to not put too much pressure on certain parts of my body, there isn’t exactly an exercise routine on the net that takes into account all of the physical limitations. After my last experience with physical therapy, I refuse to go back. I was sent to PT when I broke the first 2 vertebrae, a combination of a worthless doctor and inexperienced physical therapist who was fresh out of the Marine Corps resulted in an additional 2 broken vertebrae. Coming up with my own routines and adapting them accordingly has taken a lot of trial and error, and has also caused a few injuries. One of the other issues I have had over the last few months is my own stubbornness. Recently I had the flu, when I was feeling better I decided to get back on the horse. Unfortunately, I forgot that it took me weeks to work up to the level I was at and going back in full throttle was an excruciating reminder that my body is nowhere near where it used to be physically. Both my muscles and my joints joined together in protest to force me to take a few more days off and then start back at the beginning. </p> <p> </p> <p>Ironically enough as I write this I am overwhelmed by the scent of Joint Flex and Arnica Gel. For those who haven’t heard of Arnica Gel, I will tell you this is a little tube of awesomeness you can pick up at your pharmacy for around $10. A friend told me about it after I tore a few ligaments and ripped a muscle and had massive bruising. Within a couple of days I noticed a dramatic improvement of coloration. Also Joint Flex doesn’t work for crap on my joint pain, but it does work pretty well for muscle aches. Some people have found help with a foam roller. Personally, I question if these people are masochists. The few times I have used the roller (under the advice of my Physical Therapist) it has caused more pain than help. Before my foot injury, the greatest piece of equipment I ever owned was my inversion table. Some people hate them. With the spinal compression fractures, it really did help to alleviate the pain in my spine. Though it did take a lot of getting used to (inversion is a lot harder than I looks)I also discovered it was a great workout for your core muscles and was indeed worth every penny that I paid for it. Sadly, after I fractured the foot I was released from doc to start using my inversion table again and discovered the bar that holds your feet in place went right across the middle of my foot where the fracture was. I looked into the “gravity boots” and the adapter piece for the table to use them. The boots and the adapter bar costs more than the table. I would have been willing to come up with the money for it. However, a friend had the same set-up and allowed me to give it a try before I bought it. The boots also cut around the same area as the original bar which would put all of my weight on a bar across my foot where I had just had fusion surgery. There was no way I was going to be able to use this. I ended up selling my beloved table after the third failed foot surgery. </p> <p> </p> <p>I have been asked to write up the exercises and routine and how I have adapted each to accommodate for my injuries, which I will be starting in my next post. I wanted to give a bit of a background and a warning beforehand. I am not a doctor, I am not a physical therapist, and I am not a physical trainer. I am a housewife, a mom, an MS patient, and a person who has worked her butt off (literally) to get to where I am today. I also wanted to share some of the other things I have learned along the way and things that I have found to help. You don’t need a lot of specialized equipment, or a gym membership. The only equipment I use is a stability ball and a set of resistance bands that I have accumulated over the years. Also I would like to ask for suggestions, if you have any tricks or secret weapons that have helped you along the way. </p> <p> <div id="scid:0767317B-992E-4b12-91E0-4F059A8CECA8:fb5aa56d-22f9-43ad-8c79-f3e1de0c45f9" class="wlWriterEditableSmartContent" style="float: none; padding-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; display: inline; padding-right: 0px">Technorati Tags: <a href="http://technorati.com/tags/exercise" rel="tag">exercise</a>,<a href="http://technorati.com/tags/work+out" rel="tag">work out</a>,<a href="http://technorati.com/tags/MS" rel="tag">MS</a>,<a href="http://technorati.com/tags/Multiple+Sclerosis" rel="tag">Multiple Sclerosis</a>,<a href="http://technorati.com/tags/pain" rel="tag">pain</a>,<a href="http://technorati.com/tags/weight+loss" rel="tag">weight loss</a>,<a href="http://technorati.com/tags/Arnica+Gel" rel="tag">Arnica Gel</a>,<a href="http://technorati.com/tags/Joint+Flex" rel="tag">Joint Flex</a>,<a href="http://technorati.com/tags/Chiropractic" rel="tag">Chiropractic</a>,<a href="http://technorati.com/tags/spinal+injury" rel="tag">spinal injury</a>,<a href="http://technorati.com/tags/Lisfranc+Dislocation" rel="tag">Lisfranc Dislocation</a>,<a href="http://technorati.com/tags/Stability+Ball" rel="tag">Stability Ball</a>,<a href="http://technorati.com/tags/Core" rel="tag">Core</a>,<a href="http://technorati.com/tags/muscles" rel="tag">muscles</a>,<a href="http://technorati.com/tags/yoga" rel="tag">yoga</a>,<a href="http://technorati.com/tags/pilates" rel="tag">pilates</a>,<a href="http://technorati.com/tags/disability" rel="tag">disability</a>,<a href="http://technorati.com/tags/range" rel="tag">range</a>,<a href="http://technorati.com/tags/motion" rel="tag">motion</a>,<a href="http://technorati.com/tags/fractures" rel="tag">fractures</a>,<a href="http://technorati.com/tags/spinal" rel="tag">spinal</a>,<a href="http://technorati.com/tags/vertebrae" rel="tag">vertebrae</a>,<a href="http://technorati.com/tags/injury" rel="tag">injury</a>,<a href="http://technorati.com/tags/recovery" rel="tag">recovery</a>,<a href="http://technorati.com/tags/wheelchair" rel="tag">wheelchair</a></div></p> Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-26388904551688057962013-07-21T16:24:00.001-07:002013-07-21T16:24:07.934-07:004 Days of Fentanyl<p>Day one began after 2 hours of sleep and 4 hours in the car which was a culmination of 2 very emotional doctors appointments. I met my new pain management Dr. Though I have come to hate all things MCV over the years I will say I was not unimpressed with the new doctor. He actually spent 2 hours with me going over every pain issue and reason for it and every pertinent medical fact of the last 5 years. And he tolerated my tears and seemed to understand my frustrations. He also decided that continuing to increase morphine was simply not an option. Yes, I would most likely benefit from increasing the dosage however he knows the insurance refuses to pay anything above 120 mg a day. Plus as my medical records have suggested, I have built a tolerance to it that isn’t going to get any better. </p> <p> </p> <p>At this point he decided the next option would be to try Methadone or the Fentanyl patches. He did not want to prescribe methadone based on my age and the fact that 95% of my causes of pain are inoperable and will not be going away anytime in the future. More about that appointment and the other 2 appointments in those 2 days later.</p> <p> </p> <p>So I started the patch that afternoon. Put it on, fought the heat while cooking dinner on the grill. Took about 4 hours before I noticed a decrease in pain. All was well until bedtime. I took my meds and was in my room getting ready for bed when the nausea hit. As soon as I laid down, I was jumping back up to run to the bathroom because my dinner refused to stay down. Finally managed to fall asleep but was extremely dizzy and very nauseous.</p> <p> </p> <p>Day 2  I awoke with a splitting migraine and an already scheduled follow up with my primary care doctor. I couldn’t say for sure that is was the new medication making me sick because there were a LOT of other factors to consider. There was the lack of sleep, the heat, the emotional roller coaster ride, and yes, I already mentioned the lack of sleep, but the lack of sleep is enough to make anyone sick. Day 2 was yet another insanely hot day and the heat was not helping. The headache went away as did the nausea… until I ate lunch. The nausea came back with a vengeance and I attempted to lay down for a nap. The room began to spin and I had to get back up. The rest of day 2 was spent fighting the nausea. I had a handful of Nauzene tablets and some dry cereal for dinner as it was all I could stomach. One thing I will also point out that I noticed on day 2 was an intolerance to light. I am usually the person who insists on turning on the lights in the living room when it starts getting dark out (My kids prefer to sit in the dark, unless they are leaving a room which which case the light is guaranteed to be on), but I could not stand the light, and even reading a text message on my phone hurt. </p> <p> </p> <p>Day 3 came with both pain and you guessed it….nausea! But worse than fighting the urge to puke was the pain that had come back. I began to feel a little better that night. I did spend the day complaining that MMJ is still illegal in Virginia as I had a feeling it would work a heck of a lot better than those disgusting cherry flavored tablets. </p> <p> </p> <p>Day 4 I woke up in as much pain as when I started the patch. Figures since it was time to switch it for a new one. Took more than 1 cup of coffee to talk myself into putting on another patch. This time I did change locations. It’s been 8 hours since the swap out. So far the pain has gone from a 10 to a 7. But the biggest improvement was the ability to eat dinner and not have to take nausea meds before and after. </p> <p> </p> <p>All that being said, I will say what I believe may have been the issue from the beginning. Neither the doctor nor the pharmacy informed me of one of the most important pieces of information I found in the tiny words on page 3 of the medication info pack: <strong><font size="4">Avoid hot showers, hot tubs, sunbathing, exercise, or anything that would cause an increase in body temperature as it will cause you to absorb the medication too quickly.</font></strong> </p> <p> </p> <p>I do believe that is why I was so sick and why it stopped working after 2 days. Which makes absolutely no sense to me why the doctor who prescribed this medication on the hottest day of the year thus far did not bother to warn me. So for anyone out there who is about to start Fentanyl… please be advised… stay away from heat.  Also the patches do not stick very well, and I was smart enough to ask my doctor about swimming with the patches on before I left his office. He recommended Tegaderm, which is both 100% waterproof and LATEX FREE! They work great for keeping the patch in place. I have not tested the waterproof factor other than a quick shower, but so far so good. </p> <div id="scid:0767317B-992E-4b12-91E0-4F059A8CECA8:dd196a86-c438-4bff-96e6-352fbc262879" class="wlWriterEditableSmartContent" style="float: none; padding-bottom: 0px; padding-top: 0px; padding-left: 0px; margin: 0px; display: inline; padding-right: 0px">Technorati Tags: <a href="http://technorati.com/tags/MS" rel="tag">MS</a>,<a href="http://technorati.com/tags/Multiple+Sclerosis" rel="tag">Multiple Sclerosis</a>,<a href="http://technorati.com/tags/Pain" rel="tag">Pain</a>,<a href="http://technorati.com/tags/Pain+Management" rel="tag">Pain Management</a>,<a href="http://technorati.com/tags/Compression+Fractures" rel="tag">Compression Fractures</a>,<a href="http://technorati.com/tags/Lisfranc+Dislocation" rel="tag">Lisfranc Dislocation</a>,<a href="http://technorati.com/tags/Morphine" rel="tag">Morphine</a>,<a href="http://technorati.com/tags/Morphine+Sulfate" rel="tag">Morphine Sulfate</a>,<a href="http://technorati.com/tags/Fentanyl" rel="tag">Fentanyl</a></div> Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-62840975942562082692013-07-08T22:53:00.001-07:002013-07-08T22:53:02.369-07:00Tears of Joy, this is new. <span style="font-family: Georgia, "Times New Roman", serif;">I have spent the last 8 months kicking myself and second guessing myself wondering if I made the right decision to stop the Tysabri. I couldn't take being sick 2 weeks out of the month. I had to spend at least 4 hours at the hospital per infusion. When I got home (I had to have someone with me or they wouldn't release me), I would go straight to bed and crash for hours. It was the one day of the month I had to have someone else take care of my kids, cook dinner, and help with homework, etc. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">I stopped the Tysabri last October. At the time I stopped because I had the flu, and they told me not to come in until it was gone. I started feeling better before my daughter came home with a second strand of the flu, it was the end of November before I was over it. It was around this time I met with the new surgeon who decided my foot needed another surgery and he scheduled it for January. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">Against the advice of my neurologist, I didn't get the November or December infusions because I didn't want to compromise my immune system prior to going in for surgery. This was the third surgery in a year and they told me it would be more invasive and involve a hospital stay. The surgeon agreed with me not to get the infusion. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">I had the surgery, I then had to wait until the incisions healed to get another infusion. Of course there was an infection in one of the incision sites, which wasn't seen until the hard cast came off 6 weeks after surgery. Like every time I have come off of the infusions, I began to feel better. I began feeling stronger and I began to appreciate not being sick every month. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">My doctors on the other hand, all felt the need to make me aware of the dangers of stopping Tysabri. I was warned repeatedly that the MS was going to go crazy, I was going to grow new lesions, I was going to only get worse. I was told that getting a sinus infection, and bladder infection every month was a small price to pay for not growing new lesions. I was told I was being ignorant and jeopardizing my own health by refusing to go back on the Tysabri. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">I felt I was making the right choice to stop this treatment. My body was feeling better, I stopped most of the other meds I was taking. I went from 13 medications a day to 5. That was an easy choice though the week of withdrawals made me wonder if I made the right choice. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">I didn't know if I made the right choice. I second guessed that decision every day. It became a daily struggle. I felt better, but was I making it worse? This battle raged, though I stood by my decision to stop it because my body was finally allowing me to feel some sense of normalcy again. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">My pain management doctor was fired and her replacement was a man who bragged of his Harvard Medical Degree. We met once and upon looking at the file in his hand he stops when he sees MS... and it was at this point he tells me my case is too complicated for him and I need to go to Richmond to be seen at MCV (WORST HOSPITAL EVER!!!). And Upon booting me out of his office he hands me an order for MRIs for the fractures in my spine. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">I ended up calling the neurologist to let them know I have these orders and she will need to add the brain and the contrast. And of course this means getting doc #1 to rewrite the order with contrast and going to pick it up, then going to the other side of the hospital to pick up the second order from doc #2.Then getting the MRIs.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">9 blown veins to get the contrast in my arm. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhskKAAXfEgCSyCUJUVR_V9ShYMcWbDTqE7EflUwNNg1nYgfPjRvsKBZ7U1rq_1W2sjnLyRPIR31VjyE5rYcqq9WRc2FLMil_9_zMhM03GBo_TXzEGHgnr6WFT6tPaB4tv1z8AUvGajLV4/s1600/20130628_202106%5B1%5D.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Georgia, "Times New Roman", serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhskKAAXfEgCSyCUJUVR_V9ShYMcWbDTqE7EflUwNNg1nYgfPjRvsKBZ7U1rq_1W2sjnLyRPIR31VjyE5rYcqq9WRc2FLMil_9_zMhM03GBo_TXzEGHgnr6WFT6tPaB4tv1z8AUvGajLV4/s320/20130628_202106%5B1%5D.jpg" /></span></a></div>
<span style="font-family: Georgia, "Times New Roman", serif;">I was bruised from elbow to hands on both arms. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">Took forever to get the darn things done. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">BUT.......</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">I picked up my results a few days later and I began to cry as I read them. The nurse came over to ask what was wrong and I told her these are tears of joy and relief. She being my favorite nurse of all the ones I see, hugged me and cried with me right there in the middle of the lobby. I have NO new lesions, 2 of the old ones are significantly smaller, and no signs of active demyelination anywhere. My MS findings are all stable. And when I read those words, I felt the weight of the world lift off of my shoulders and I realized I can stop second guessing myself. I also realized that I am still going to refuse to go back on Tysabri and I have no desire to try the new pill. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">On the not so great side, there are more herniations around the fractures and the discs are pushing into my spinal cord, which they believe is the source of most of my pain. But even that wasn't really bad news. Seeing as I have to see a new pain management doctor, it helps to have proof to show there is a valid reason that I am there and I am not some addict trying to score pills. </span><br />
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<span style="font-family: Georgia, "Times New Roman", serif;">Been a while since I cried happy tears.</span> Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-50148137116367642022013-06-25T03:52:00.001-07:002013-06-25T03:52:48.858-07:00Insomnia Insomnia INSANITY!!<p>I am so done with these damn doctors! I went to see my Primary Care Doc last week. This was a follow up to two weeks before. He got the results of my blood tests and he sees that I am both vitamin B and vitamin D deficient. Well DUH I have MS!! The good news, my thyroid levels are normal. None of this explains my sleeping issues.</p> <p>So he started me on B12 shots and added a high dose vitamin D supplement. B12 shot… excellent idea! Except of course for the fact that giving me super energy boost when I have been complaining for months about sleep issues seems to be a pretty logical bad idea. </p> <p>I have been on Ambien for almost 3 years now. It stopped working and when it does work, I sleep less than 4 hours. He added Elavil a while back. That was also not working. Then there was the lovely issue where my congressman decided that I was no longer allowed to have the 12.5 mg of Ambien CR I have been on for almost 2 years. Some moron wrecked her car and blamed Ambien so congress decided no one was allowed more than 5 mg. So I didn’t sleep for 3 weeks. I was then able to be bumped back up to 10 mg. Still not working. I am trying to explain to him that after 3 years on this drug my body has grown immune to it. </p> <p>I have tried every other sleep aid he has to offer. I was then told to double up on the Elavil. Did this for 2 weeks prior to last week’s appointment. Still not working. And at this point I am out of both Ambien and Elavil. </p> <p>My doctor in his infinite wisdom has decided that he isn’t going to write me a script for anything to help me sleep until I follow up with the neuro I haven’t seen since last October when I stopped Tysabri infusions. I don’t have a reason to see her. The only medication she was prescribing for me was Tysabri. I am PPMS. I have had no new symptoms since then that she can do anything about, thus what is the point?? I was also told to wait to follow up with her until he got the results of the blood tests. </p> <p>And now he is blackmailing me into making an appointment with my neurologist by withholding sleeping medication. I mean seriously?? </p> <p>This is the same week my pain management doctor was fired, and I was passed on to the new doctor at that office. This man is a graduate from Harvard Medical. He decided my case is too complicated for him (i.e., I have MS) so he has passed me on to the worst hospital I have ever dealt with which is in Richmond, a good hour and a half drive each way from my house. </p> <p>I have been awake since 9 a.m. yesterday morning. 27 hours of being awake and the insomnia is causing more frustration than I can handle. I am also bipolar…which ALL of my doctors know. Do they not realize that not sleeping is a trigger for people who are bipolar, and the stress from all of this is a trigger for MS symptoms?? </p> <p>I am so frustrated I want to punch someone in the face!</p> Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-14320572920201185472013-06-05T11:23:00.001-07:002013-06-05T11:23:26.709-07:00Band Aids and Bullet HolesBand Aids and Bullet Holes
There is a saying you will hear me say a lot. Treating the symptoms, and then treating the side effects of one drug with a second drug makes about as much sense as slapping a Hello Kitty Band Aid over the hole someone just shot into your chest. It will not fix the hole, it will not stop the bleeding, but it will cover it up if only for a second or two. You can still bleed out behind the Band Aid.
When it comes to Multiple Sclerosis every doctor I have met has his own approach to Band Aids and bullet wounds. One gives me medicine to treat the symptoms of MS and another gives me medicine to treat the side effects of the first drug. None of it actually fixes the problem, and before you know it you find yourself taking 30 pills a day and you have no idea what pill treats what. Then you have the doctor who decides you are on too many pills, cuts you off of most, and within a year you find he has written you at least 6 new prescriptions, all in the name of science.
I ended up cutting myself off of most of my meds and got to go through the ever so pleasant experience of withdrawals because I could no longer take the amount of poison I was dumping into my body each and every day.
Another sad discovery I have made recently; when it comes to doctors and MS patients, the drug companies have convinced the doctors that you need to be on something to treat the disease. If there was any drug on the market that came with more than a 35% efficiency rating, I would possibly agree. However, this is not available. This also leads me to mention that although the great doctors take the time to diagnose the proper form of MS you have, most refuse to actually write it on your chart. There is a very good and bad reason for this. If you are not RRMS, your insurance will not approve any treatments because the FDA has not approved any treatments for any form of MS other than RRMS.
There are 4 different categories of Multiple Sclerosis you can have.
• RRMS- Averaging 85% of people diagnosed is RRMS (Relapsing- Remitting Multiple Sclerosis). This is where symptoms come and go or get worse and then improve over time. RRMS patients tend to respond well to not only steroids but also most of the DMDs (Disease Modifying Drugs).
• PPMS- Effecting around 10% of the MS community is PPMS (Primary Progressive Multiple Sclerosis) I speak from experience when I say symptoms hit you like a freight train and never let up, though certain ones can come and go, and when you think it will not get any worse, it does! Doctors will tell you this is a slow and steady incline of symptoms; I will tell you that is bullshit! I will also mention PPMS is characteristically known to cause more damage in the spine than in the brain and one of the classic tests that determines this form is that you do not respond to steroids as it is not inflammatory. Well, you do respond, just not well.
• SPMS- (Secondary Progressive) this one is a bit confusing, it starts out as RRMS and about 50% of people with RRMS will end up with a SPMS diagnosis within ten years. This is kind of like a combination of RRMS and PPMS. I feel this is more due to dr error as they are so quick to point to MS but not take the time to figure out exactly what type you have before they put you on drugs.
• PRMS- 5 % of people who have MS are later diagnosed as PRMS (Primary Progressing Multiple Sclerosis). With PRMS, you have a steady increase in symptoms with the added unpleasantness of exacerbations (flare ups). I am not sure how the determination is made between PPMS and PRMS. Personally, I have PPMS (or so I am told) yet, I still experience exacerbations; somehow I am not in the PRMS category.
My most recent trip to the doctor was as always, a major source of stress and frustration. I am not sleeping, when I do sleep I move constantly and I wake u p in pain. On a good night I get 4 hours of interrupted sleep. I have been on every sleeping pill they offer, and was on Ambien CR at 12.5 mg and was still ending up taking more than one if I wanted to sleep. Which of course lead to the other problem…running out of pills and not sleeping for half the month because they can only give you 30. If that wasn’t ridiculous enough, some moron in California wrecked their car and blamed it on the Ambien. So Congress intervened and decided no one was allowed to have more than 5mg. Dr changes my prescription to 5 and I slept for 6 days before I was out of meds. He was then able to increase it to 10 mg...woo hoo. Then he wanted to put me back on 12.5 but of course since Congress knows better than any of my doctors… my insurance denied it. I have been on this medication for over 2 years, my body has gotten used to it and it no longer works. I made the mistake of asking for something else. I was told no. Not because I am on too many medications, not because the next step is highly addictive (mind you I have been on morphine for 3 yrs), but because I refuse to go back on Tysabri. It does not seem to matter that Tysabri made me sick 2 weeks out of the month, and it ran a risk of killing me. None of that seems to matter because it stopped me from growing new lesions.
I am not saying that all doctors are idiots and I am not saying do not try the DMDs. What I am saying is that you need to listen to your own body. You need to be able to determine for yourself if something is helping or not. This is a decision that you and only you have to live with. At the end of the day the doctor gets to take off his lab coat, go home and have a nice evening. You get to go home with not only this drug and all the effects of it, but the MS comes with you. It sucks, and there is not a damn thing anyone can do about it.
Some people do great with the DMDs, and some do great with Tysabri. I hear stories all the time of people looking forward to their next infusion because it made them feel great and gives them energy. I was the opposite. I went home after an infusion and crashed, and then I spend 2 weeks fighting both a sinus and urinary tract infection. And any time anyone came near me with germs, I got sick. This is not an easy way to go when you have two children to take care of. I stopped the TY when I was sick almost a year ago with my 3rd round of the flu. Then I broke my foot and ended up getting surgery, then I broke that, and on and on for a year. I got 2 infusions between the 3 surgeries. And I got sick both times. I have finally come to the conclusion I would rather not spend my time being sick and I will just deal with whatever this disease throws my way.
I tried Copaxone, had no effects from that at all until my MRI showed I grew 11 new holes while on it. Then I tried Avonex, which gave me flu like symptoms with every shot and then I broke out in hives because I turned out to be allergic. This knocked Betaseron and Rebif off the list because they contain the same ingredients. So we moved on to Tysabri.
I feel like I have run out of Band Aids and my doctors refuse to allow me to live life the way that I want. Then I remembered that my doctor’s word isn’t law. In fact, last time I checked I pay them to provide a service, thus they work FOR me. And if they refuse to get on board and do things my way, I will replace them with doctors who realize I sign their checks. I do urge everyone to watch out for doctors who are quick to hand you a Band Aid instead of offering relief.
Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com1tag:blogger.com,1999:blog-5277259792556670982.post-49831833172837193872012-05-10T14:31:00.003-07:002012-05-10T14:31:55.114-07:00When most people think of Hell, they think fire, and demons, and little red men with pitchforks. That is not what I think of. Right now I feel trapped in my own version of Hell, a personal Pergatory. I feel useless and utterly broken. I find myself questioning those I love as they have betrayed me once before and I don’t know how to bring back that trust. I don’t know how to stop the suspicion that he is hiding things from me. I don’t know how to release this hurt. I find myself trapped in this broken body andf no matter how strong my will, no matter how strong my spirit I cannot escape this prison. Its been 17 days since I broke my foot, 16 days since I turned in my crutches for a wheelchair, 14 days since the surgery. It feels like a lifetime has passed and I have another 70 days trapped in this prison that is my own body. I have been confined to one half of my house. There is nothing I can do but wait. Wait for the healing, wait for the aftermath, wait for others to step up. Sit by and watch the bills pile up, watch life pass by. My child is ill and I feel helpless. I cannot “do” anything around here.
I am waiting for the fallout. I am trying to face these demons and keep my emotions in check. For someone who is sentenced to be home alone, I haven’t really had alone time. I haven’t had time to grieve the loss of a father figure. I missed his memorial service, I found out about his death on my daughter’s 8 year old birthday. It wasn’t a shock. We found out the day before Valentine’s Day that he was dying. The cancer had been everywhere by the time it was discovered and a man that was the love of my mother’s life for 40 years was fading fast. I didn’t make it down to see him before he died and for that, I will have to find a way to deal with my own guilt.
The biggest fear I have had since the day I was diagnosed with MS was that I would end up in a wheelchair. The day I was diagnosed as Primary Progressive, I had to face the fact that there was a 95% chance I will have to face that chair. To some, this is an aid to help them remain mobile. To me, this is a death sentence. This wheelchair may as well be an electric chair.Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-74842251735331570132012-03-06T16:00:00.000-08:002012-03-06T16:02:54.031-08:00MSismsThere are some MS sayings that simply either annoy or amuse you, I refer to these as "MS"isms. Some of the MSisms I have encountered have struck a chord and stood out over the years. Thought I would share some insight as to how these things effect me. I am not speaking for other MSers. I am speaking for me and my opinions. please do not be offended. I know that one of the biggest things I have learned from having MS is that educating others is a necessity. I am not picking on anyone. If ever I have been offended by the following comments, you can rest assured I have pointed it out to you. That is one thing about me...I don't hold back. <br /><br />For starters there is "I have MS, MS doesn't have me", that is the biggest load of crap I have ever been fed by anyone with this disease. Please share with me your secret to beating this disease and stopping it from ripping apart your life and your relationships and your body. I have yet to figure out this magic formula. I wake up with the aches and pains as a painful reminder that this disease is still here. I take a handful of pills to force my body into sleep every night because I have lost the ability to do it on my own. If the disability, fatigue, and depression are not kicking me in the ass, I am still consciously aware of my limitations and my inability to make any plans that do not involve doctors or needles. No offense to those who carry the "I have MS" torch, but I cannot say I have a grip on this disease. I can say it has a grip on every aspect of my life. <br /><br />And there is the ever thoughtful "But you look so good!" myth. This disease must only effect pretty people who naturally look so good. I never got so many compliments on how good I looked before this diagnosis. Now I can leave the house with my hair in a bun and in jeans and a t-shirt with no makeup on and still I am told how good I look. It's nice to know I look better than I feel. I may look good, but I honestly feel like I have been dragged into the depths of hell and the devil is refusing to let me go back. This my friends ranks up there with "well, you don't look sick". You don't look like a moron, I guess that old adage is true after all "looks can be deceiving". This is also one of the hardest aspects of dealing with the Disability idiots when it does progress to the point that your doctors ban you from returning to work. You look perfectly fine, how on earth can you be so disabled?<br /><br />You're my hero. Really? Those years I spent as a medic, my devotion to my community, my children, my family... these things didn't make me a hero. Being diagnosed with this crappy disease, fighting to regain the tiniest bit of the person I used to be, being treated like my doctor's personal lab rat... this makes me a hero? There are times when you feel like you are fighting for a longer and more painful death and sometimes it really isn't worth the fight. Believe me, I am no hero. I don't do heroic deeds, I am no longer able to help people other than myself because of disability and fatigue. A good day for me involves scheduling the entire day around a nap and then being surprised when I actually stay awake and can accomplish small tasks like cleaning the house. I sure as hell don't feel like a hero, but thank you. <br /><br />Have you tried.... *insert random idea here*? Because I saw this thing on TV, or Youtube... I am not trying to be a pain here, I do realize you are trying to help. However, according to Youtube you can unlock your car with a tennis ball and make Mountain Dew glow in the dark by adding baking soda. Think about it. Do not take medical advice from Youtube. It is a bad idea. They also have how to videos on how to swallow swords, charm snakes, and breathe fire. I do not recommend trying these at home either. <br /><br />Personally, I didn't know anyone with this disease before I was diagnosed. But it seems everyone knows a guy who knows a guy. Just because your mailman's brother-in-law's baby's momma's aunt has MS and she "cured" it by riding horses does not mean this will work for me. This same line of thinking goes along the same lines as telling me about your cousin's momma's uncle Stan who died because he had MS. This doesn't make me feel better! How the hell is this supposed to make me feel better?<br /><br />"It could always be worse". Yes, this is very true. It could always be worse, but that doesn't make it suck any less. The thought of it being worse does not shine a light on today's sad truth. As one of the 10% of MSers who are unlucky enough to receive a PPMS Diagnosis, I know it could be worse. I know that I have a whole lifetime of getting worse to look forward to. There is no "up-side" to this. It's not going to get better, it is going to continue to progress and the only thing I can do is try to slow it down and hope for the best. <br /><br />At least you aren't in a wheelchair yet. Yes, and being your father's son, I guess I can say at least you aren't bald yet. Maybe you should try some of those growth hormones now, I saw this video about it on Youtube. Yup, it has about the same effect, except you get to be offended and I don't.Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-61540625199393389672012-02-19T10:30:00.000-08:002012-02-19T11:41:37.310-08:00Doctors Doctors and more Doctors!!Having Multiple Sclerosis is hard enough, but trying to manage this disease without a good team of doctors is a nightmare. In 3 years I have been battling this disease, I have met almost every specialist in this city, and this is NOT a small town. I have had my share of bad doctors and I have heard horror stories from others about their own doctors. <br /><br />What I have discovered is this: YOU are your best advocate, and the doctors work for you, you should not feel insignificant and your doctor should not try to tell you what you are feeling. No one knows what is going in inside of your body other than you. Your doctors are here to help you manage your symptoms. If they cannot do so, or they try to tell you that your symptoms simply cannot be what you describe, then it is time to find a new doctor. <br /><br />This was a lesson learned the hard way for me. I was completely dumbfounded when I was hit with the MS diagnosis. It was not something I expected, I was not prepared for it and I honestly knew very little about this disease when I was diagnosed. My neuro who diagnosed me assured me that this disease was treatable, and manageable. Every new symptom that popped up during those first few months were dismissed and I was told it was all a result of stress and I needed to relax. While I do agree that stress does indeed have a physical impact on those with MS I also felt belittled and ignored. <br /><br />During my first round of IVSM, I had gained 11 pounds in 2 days and was so sick I wanted to die. He told me this too was a normal result of the IVSM. When I went into withdrawal after my 5 day round, I was told this too is normal. A few months later when I started having Optic Neuritis (ON) issues, he brought me in for EP testing and confirmed that I had ON. He then ordered a round of oral steroids which did nothing to stop the ON. At my follow up he says, and I quote "I'm sorry the steroids didn't work, nothing else we can do at this point. Come back to see me in 3 months". THREE MONTHS?? Seriously, I cannot see out of my left eye and you tell me to come back in 3 months? <br /><br />It was at this point that I began to lose feeling in my hand, I could not control my balance, I could not feel my feet and I still couldn't see out of my left eye. I decided it was time for a second opinion. I made an appointment with a new neurologist who ordered a full set of MRIs, another round of IVSM, and started me on Copaxone. She listened to my symptoms, prescribed medications to treat the symptoms, and scheduled a follow up appointment 2 weeks later to check my progress. I have been seeing her ever since. I have failed on Copaxone, I was allergic to Avonex, and I have now been on Tysabri for a little over 2 years. I have had over 32 MRIs in 3 years and I know that my doctor stays on top of the progression of this disease and how it effects me. If I have a question, or I need something taken care of, I know that I will get a call back that same day and if I need to come in, they will do what they can to fit me in. This is how your doctors should treat you. <br /><br />My primary care doctor has been the best person I have ever had on my team. He keeps track of all of my other doctors, he keeps track of all of my medications and he keeps in close contact with my neurologist. If he does not know the answer to my questions, he admits it and then researches until he has an answer. He was detrimental in my disability case and treats his patients with respect. He is the reason I was able to meet so many specialists. He has had me tested for everything he can think of to see if there are underlying causes to my symptoms that may not be related to MS instead of trying to dismiss each and every symptom into the "well, you have MS" category as so many other doctors tend to do.<br /><br />On top of MS, I fell and fractured 2 vertebrae in my spine. I made the mistake of going to a local ortho, who had a sterling reputation. Unfortunately this was the biggest mistake I have ever made and I will live with that decision for the rest of my life. Instead of passing me on to someone who knew what they were doing, he prescribed physical therapy. I followed the doctors orders for 6 weeks even though the pain continued to get worse. I continued following up with the doctor and told him each time that the pain was getting worse. After 6 weeks, I ended up asking my neuro to order another set of MRIs because the ortho failed to do so and could not find anything on the XRays to explain the increased pain. The result of the MRI was that I now had 4 broken vertebrae. Going to physical therapy caused another 2 fractures. At this point the doctor proceeds to tell me there is nothing he can do about it and that I should continue with physical therapy. I found a new doctor at this point. Unfortunately, due to the new fractures and the time elapsed from the original injury, I was no longer a candidate for surgery. The fractures developed Schmorle's Nodes. Essentially, it means I have 4 herniated discs between the fractures that had herniated on the inside against my spinal cord and there is nothing we can do about it except for prescribing narcotic pain medications and I get to live with this pain for the rest of my life. <br /><br />This is why any time I have any injury I now consult a minimum of two doctors. A second opinion is invaluable even if you insurance does not want to cover it. I am not saying you should not trust your doctors, but if you have any doubt that your doctor may not be the best person for the job, then it is time to get a new doctor.Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-17047691854246438752011-01-15T12:15:00.000-08:002011-01-22T12:16:34.439-08:00It's Over and I Am Alone, Broken and AloneAnd today we were having dinner and he just told me he would never be happy here. He loves me but he is not in love with me and he has decided he is moving home in June. He couldn’t handle the burdens of me and this disease.<br />He loves me but he is not in love with me and hasn’t been for a very long time. We are two different people and we want different things in life and this is for the best for both of us. I deserve more than he can give me. I deserve a man who will love me like he is supposed to. I have been his best friend and his only friend for 4 years, I have been a mother to his child and he hopes I can continue to do so. I am the best girlfriend a man could ever ask for but he needs to be at home. <br />Yes, this is two days after he held me and kissed me and vowed to work this out. Promised to try to work this out. Made love to me afterwards. Apparently none of that meant anything to him. <br />I am an emotional wreck and all I can think about are our kids. This isn’t fair to them, this isn’t fair to me. I am the only mom his child has ever known and he has been a father to my child for over half of her life. And he is going to walk away. And who will be there to pick up the pieces of the shattered hearts?<br />I deserve a lot of things but I don’t deserve this. I have been faithful, open, loving, caring, dedicated to him. I have been there for him, his daughter, my daughter, our family. I cleaned the house, did the dishes, took care of the animals, and did his laundry, ran his errands, and there was a hot meal waiting for him each night after work. I was there sexually any time he wanted me, I worked my ass off to please him. <br />I spent 4 years of my life falling deeper in love with each day that passed for a man who doesn’t love me back. His daughter thinks she is coming here in june and she is going to come to live with us and she will finally have the family she has missed out on for the last 13 years. And he is going to take that away from her. Snatch the heart out of her chest and she is going to hurt the most of all of us. <br />He said we reached a point where neither of us gave a damn enough to fight for this. He was wrong. I would have fought to the death for that man, I would have gladly given my life for him and our family. And he didn’t love me enough to be honest with me when he began having doubts. He kept it inside until it consumed him. This has cut me to the deepest depths of my soul and I don’t know if I will survive this. <br />He doesn’t love me enough to fight. He doesn’t love me enough to even try to work this out. He doesn’t love me enough to stay. Our family and our life doesn’t mean anything to him because his mind is made up and I have no say in the matter.Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-62741336914750253692011-01-12T11:58:00.000-08:002011-01-22T12:05:39.052-08:00Roller Coaster Ride From HellRoller Coaster ride from hell.<br />Today was going to be a good day. I was determined. I pushed and I pushed and boom, it all blew up and fell into a million pieces around me. I woke up alone. I woke up in pain. Not your regular kind of I am getting old and aches kind of pain, but the kind of pain that reminded me that my back is still broken in 4 places, and I had become such a wretchedly horrible person that the one time in almost a year my boyfriend took more than a day off and he chose to leave me behind and go off with his friends to get the hell away from me.<br />But, I thought of my 5 things:<br />1. Pain pills<br />2. Coffee<br />3. A 2 hour head start with school being delayed.<br />4. My Family<br />5. He was coming home today<br />So I got up, made my coffee, took my pills, and started my day. I fed the dogs, I watched an episode of stupid pointless TV to get my mind elsewhere and I waited for my kid to wake up. She got up, we hung out, she watched TV, enjoying her 2 hour delay. I got her breakfast ready, I did my makeup, did my hair, and I got ready for my day. I got her off to school, washed a load of laundry, and headed out to my doctor’s appointment. Got a text on the way there from the man, he is an hour away.<br />I got there, checked in, and saw I had an email. From the man. In it, he told me he loved me, but he was torn between me and his life at home in KY and he misses his daughter and he wants to move back home. He doesn’t want to leave me but he is miserable and he wants to go home in June when the semester is over and school is out for Madi and the lease is up. BOOM! Did my world just crumble down around me? Did everything I have worked so hard to keep together just fall shattering to the earth like the shards of glass that used to be my heart? Yes, yes it did. I got through my doctors appointment. I sat in the parking lot on the phone with my mom for a good half an hour. I pulled myself together. I refused to fall apart. I refused to let the hurt and the anger in. I just refused to feel anything for a moment.<br />It was like my daughter’s dad all over again. I was emotionally dying, but I would not let it show. I would not lose my composure, not for him. I would not let him see the tears. I came home, a volatile cocktail of emotions. I stopped and checked the mail. SSDI… oh thank God, the answer to my prayers. The letter I have been waiting on for over a year and a half. A decision about my disability claim/appeal. My 7 specialists including my psychologist all say I cannot go back to work. All say I am disabled. In fact, SSDI tells the state of Virginia I am disabled enough to receive Medicaid for the medical costs. I open it…. YUP, Bastards denied me again! No specific reasons other than they agree with their last decision and feel it is lawful. Are you fucking kidding me?? 37 holes in my brain and spine, 4 chronic broken bones in my back, organ failure, bipolar disorder, graves disease, hyperthyroid… a monthly infusion, 15 doctors appointments a month, over a quarter of a million dollars billed to Medicaid last year… and I am denied?? You ever feel like waking up and screaming WHAT THE FUCK at the top of your lungs?<br />I just sat in my car for a minute, trying desperately to search for the last crumb of my sanity. Is this really happening? Please wake up from this nightmare.<br />I came inside, and I could not face him. I could not look him in the eye. I couldn’t look at him. I walked passed him and pretended he didn’t exist. I locked myself in the bathroom and tried to clear my head. He came in here and waited, then he left. He went back into the living room. I grabbed a cigarette, walked back passed him and out to the garage. On my way out he asked if we could talk, I ignored him. I came back in and he was in the bedroom, I made a cup of coffee and decided it was time to face this elephant before my daughter got home from school.<br />So I went into the bedroom. I sat on the bed, and I looked at him. I didn’t know what to say, I didn’t know what to do, and I didn’t know what to feel. So I told him that. I asked what he wanted from me. Did he want me to scream? Did he want me to cry? Did he want me to throw things? What the hell did he want from me? He said “I don’t know”. So I decided to tell him about my day. How my day started off sucky, got better, the bomb of him wanting to leave me exploded and how I had tried so hard to reinvent myself. I told him about the call from my shrink this morning; calling to check on me because my Primary Care Doc was afraid I was about to kill myself. I told her that I already had. I had killed the miserable person I became and replaced her with a woman who could no longer carry the baggage. Then I asked him again what he wanted from me. And again, I got no answer.<br />His whole email was about the promises he made to his family, to come home after the Army, to be there for his daughter. And I reminded him of the promises he made to me. Promises he made to my daughter, to his daughter to us as a family. For better or worse, that was the promise. Forever and always, it used to mean more than four years. And what about our children? How would this affect them? I am the only mother his daughter has ever known. He is the full time dad figure in my daughter’s life while her father is the fun guy who buys her stuff.<br />He finally broke down. Told me he was caught in the middle, torn between the two and he asked me what to do. He begged me to tell him what to do. I cannot make him stay. I cannot tell him what to do. I can only offer my honesty. So I did. Honestly, I think his daughter being so far away is his choice. He has promised her and I for years that she is coming here. Our whole life since we moved in together always included an extra room for when she came to live with us.<br />Life with me is not perfect. This is not the life we planned. No one ever plans on having MS. No one ever plans on their body shutting down and making them incapable of working. No one ever plans on facing their own mortality at the age of 30. No one ever plans to have to be the breadwinner, or to have to depend solely on the other person. If we planned for this, we would spend out entire adult lives depressed and afraid and this is why these thoughts don’t come to the average 30 yr old.<br />He wanted my opinion of what to do. If it were up to me, I would bring his daughter here, she would live here, we would get married, and he would finish school and we would have a life. We would have a family. We would have each other. Then again, if it were up to me, neither of us would have this disease, we would both be working, we would both be paying the bills and we would be equals. But I cannot make that happen any more than I cane make him stay so it is not up to me. It is up to him. I hate not being in control of things, I hate that I cannot control my own life, my own destiny. I hate it but I have to deal with it. I don’t have the option to walk away. I cannot pack up and leave and not look back. I am the one that is fighting to live.<br />He finally opened up. The walls of responsibility are closing around him and he is suffocating. He cannot pay the bills as it is so he doesn’t want to bring his daughter here. He cannot keep on top of things no matter how much he works. He works so much to pay the bills because I cannot. He doesn’t blame me, he cannot blame me. He loves me, but he feels so overwhelmed by pressure that he is drowning. He works 12 hour days, goes to school on his days off and he cannot keep the bills paid. It’s killing him. He doesn’t think I am happy or that I ever will be happy because he cannot give me attention when he is home. He doesn’t have anything left to give at the end of the day. <br />I feel horrible for that. I feel horrible for this whole rotten situation and I don’t blame him for wanting to leave. He works so hard and he never gets a break, never gets a day off where he can just be. Stuff piles up at work or stuff piles up at home and he is constantly running this rat race with nothing to show for it at the end of the day. At the same time, it’s just money. We will always have bills, it is a fact of life. I don’t know what to do anymore. We decided to try to work things out. All we can do is try. But now I live with the fact that I don’t know if he is going to be here tomorrow. I don’t know how to accept that. He has always been here for me through it all, and the idea of him not being here is killing me, but the idea of him continuing this race alone and trying to get the bills paid is killing him, so no one is happy.<br />I am so lost right now. I am trying to find this happiness in my life that doesn’t seem to exist and each time I think I am getting close I hit a landmine and it all blows up in my face. I don’t know which way to turn. But I know that going straight on the path I have been on will end in disaster.Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-59691192756158974422011-01-11T12:12:00.000-08:002011-01-22T12:14:16.694-08:00Getting Through A Crappy DayGetting through a crappy day.<br />How do you get through the crappy days and remain positive? I am finding it hard to do today but determined to make it work if it kills me.<br />So I woke up at 2am. Had a dream about my fiancé, who is off with his friends in the mountains somewhere, hopefully having fun and “clearing his head”. I woke up and he wasn’t here. He didn’t text me to let me know he was alright. (I know they have no signal up there and his battery was dying when he got there). But I also know they stayed at the hotel last night, he has his laptop and was supposed to charge it and let me know he was ok. It’s not a big deal, but at 2 am it is a big enough deal for me to get out of bed and try calling him with no answer. It sucked. I was alone, I was worried about him, and a part of me was pissed at him. Not because he didn’t call, but because this is the one time he has taken time off from work and school and instead of doing something with the family, instead of doing something with me, he ran away and I am alone and I know he will not get time off again for months. But, I know that he needs this break, and I need to be understanding. And I need to deal with this on my own, even if it sucks.<br />Finally fell back asleep, and then my alarm goes off. Text message from my mother, cannot respond because my phone has been cut off because the man who is away and can’t figure out his phone is not working didn’t pay the bill before he left. Awesome.<br />On a chance, I decided to email him. Hoping he has his computer and will get the message. He did. Phone problem straight, bill paid and he is okay. He may be coming home tonight he may be coming home tomorrow. He doesn’t know. I don’t know. But what is new? I don’t know anything anymore. Everything I thought I knew was wrong, so what can I do about it? Not a damn thing.<br />I have a doctor’s appointment today… as usual. Primary care guy this time, time for our monthly chit- chat session. I tell him what’s wrong he tells me nothing he can do I say I know, he says here’s an antibiotic, see ya next month.<br />I like this guy. He is brutally honest, doesn’t believe in false hope. He stays on top of my other doctors, he doesn’t promise cures that don’t exist. He fixes what he can and he moves on. He is the only one of my team of specialists who hasn’t told me it is going to be okay because he knows it isn’t. He is the only one that has never seen me cry, but he knows the emotional turmoil I am dealing with. He is the one that told me it is only going to get worse and I need to prepare for that. Surprisingly, that is why he is my favorite. Some days, I wish for false hope, but that is what my neuro is for.<br />It’s about to snow and sleet here. Schools may be closing early. So far, this day is a bust. I am not feeling the hope or the self love, but I will fake it till it comes. So I got up and did my makeup. I am drinking my coffee and I am writing. I am able to control some things and I will make it through this day.<br />Things I am thankful for today:<br />1. No snow, schools opened on time, I don’t have to change my doctors appointments around.<br />2. My kids- Last night I went out to dinner with the youngest and watched her scarf down a half a rack of ribs. While I was there I got a text from the oldest who tells me she loves my hair because it makes me look more like her, then on the way home, the youngest one tells me that Hello Kitty is Jewish. She meant to say Japanese, but it was funny as hell.<br />3. My man- even if things don’t work out between us, he has been a big part of my life for the last 4 years and he has been my sole financial supporter for the last 2. If nothing else I have to give him credit for that.<br />4. Knowing that I am loved- loved by my family, my friends, and all of my online buddies who are also battling MS.<br />5. The house is warm, the coffee is brewed and I am a cute brunette.<br />Yes, I dyed my hair yesterday. It came out a great color that I love, but I have been a blonde all of my life, so it is a little strange waking up as a brunette. At least I didn’t go off of the deep end and chop it all off and dye it pink. I thought about it, but I think I am getting too old for pink hair. Besides, my shrink would probably try to have me committed if I did. But it did remind me of the whole Brittany Spears thing, I think I can fully understand why she went nuts and shaved her head one day. She was just tired of being herself, and it is so much easier to change the outside than to change the inside.<br />I have rambled on enough and I need to get ready to go. I am sure I will be back on later.Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-25409240191240404542011-01-09T12:09:00.000-08:002011-01-22T12:12:18.847-08:00Today is a new dayWell, a lot has happened in the last few days. I was able to share my last two entries with my fiancé. And I learned that he is overwhelmed, frustrated, and filled with resentment for me. He doesn’t feel he can fulfill my emotional needs and he is just too stressed out to find himself. It was harsh. I cried for days. I felt every emotion under the sun. I felt like he just didn’t want to be here anymore. I think I finally hit the bottom.<br />And then, something amazing happened. I realized that I had spent the last year of my life filled with regret and guilt and sadness, and grief. And I realized that my lack of happiness had nothing to do with the people in my life, with my fiancé. My lack of happiness and my insecurities had nothing to do with the fact that he doesn’t want to be with me, that he doesn’t give me his attention. And I realized that my lack of happiness is probably the cause of all of this. I have been a miserable person and made him and everyone else in my life miserable to be with me. I need to change me. There is only one person in this world that you have the power to change, and that is yourself.<br />I have been so focused on getting through the days, on what I have lost and what I have missed out on that I forgot to be grateful for what I have. I forgot to enjoy what is still there. I was presented with a challenge. Now, my mom, though crazy, sometimes has good advice. She challenged me to think of 5 things I was grateful for every morning when I wake up. Instead of waking up and dealing with the pain and the frustration, she challenged me to first think about what it is that I am living for.<br />This morning I thought about my kids, my mom, my fiancé, the fact that I am still able to walk, and the cup of coffee I was about to make. Yes, I am thankful for coffee. I am thankful for being able to get out of bed and go make the coffee, even if the coffee is used to wash down the pills that make me able to get through the day. I am thankful that I have the doctors and the pills and the insurance to cover them all. I am thankful that even when times get rough, the man is still there for me, still by my side. I am thankful for so many things.<br />I am thankful that I was able to see just how miserable I had become and how it was effecting others. I know that may sound weird but it is true. I took a step back and realized some of the idiotic things I had been doing. Nagging about dishes not being in the sink, nagging about laundry not being in the hamper, angry that he didn’t want to be around me when the truth is, I didn’t even want to be around myself.<br />It is time to find my happiness. That part is easier said than done. I don’t know where my happiness is. I am determined to find it. I need my own happiness, and no one else will ever be able to give that to me. I need to find my joy in the little things in life, and I need to learn to let go. There are things in this world that I cannot change. Life is not fair, sometimes it sucks. But life does go on. I need to believe in this. I need to go on and stop getting stuck and caught up in things I cannot change.<br />The man is leaving me for a few days tomorrow. Finally taking some time for himself, to go hang out with the guys and just get away. I am so glad he is finally taking a moment to himself. I don’t know how things are going to be in the future, I don’t know if he will find his happiness, I don’t know if he will be here for me. But I know that in the same way he cannot give me happiness, I cannot give him happiness. Neither of us are ready to walk away from the life we have together, and I sincerely hope we find a way to work together. But that is not something I can force, it is not something I can predict and it is not something I have control over, so I need to take it one day at a time.<br />I am not cured. The depression is still there and probably always will be. I have a lot of insecurities and I didn’t grow up in a home with a normal or stable family atmosphere, so this is all new to me. A lot of times, I don’t know which way to turn and I question myself a lot. But these are things I need to work on for myself. I have always had control of every aspect of my life and that has all changed in the last 2 years and it is scary. There are times when I am going to be scared, I am going to be insecure, I am going to be sad, but I need to find a better way to deal with it. I need to stop wishing that I had the option to get away for a few days, because this will never happen. My problems are inside of me and they come with me wherever I go. So my new goal is to figure out how to live with it.<br />Writing seems to help. I think it is because I am forced to sit down and actually sort through my feelings and focus on them one by one. So I will probably be writing a lot more. And I will probably be doing more girly things. Like wearing makeup and doing my hair and nails. Not because I feel the need to impress anyone but because it makes me feel like a girl. It may seem like a small and stupid thing, but it is something for me. I need to stop bumming around the house in my pjs all day and I need to be more productive.<br />At the same time, I need to recognize the triggers and I need to deal with them. I need to not overdo things and end up fatigued to the point of exhaustion. I need to let my body heal what it can. Yes, I realize this whole thing is I need, I need, I need. But at least I am starting to figure out what it is I need. Hopefully, from there, I can begin to tackle the needs and in the end find my happiness, which is what I want.Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-3297799130893319562011-01-05T12:06:00.000-08:002011-01-22T12:08:21.023-08:00Tornado In my HeadI don’t know where to begin. So many things inside of my head, so many emotions spinning around and so much left unsaid. How do you explain your feelings when you can’t understand them yourself? I feel lost. I feel scared, angry, happy, sad and hurt all at once. I feel utterly alone because I cannot share these feelings. I cannot deal with these feelings so I bottle them all up and walk away from them. I pretend that they don’t exist and I get through the day. Day after day I become more alone and more scared and I cannot find my true self. I cannot find my happiness, I cannot find me and I am lost.<br />I cannot say I have a horrible life. I have a house, I have a car, 2 kids, 2 dogs, a man, a fish, a frog. I have people who love me, I have a family. My life isn’t bad from the outside looking in. I do have a lot to be thankful for and I know this. And I know that things could be so much worse and I should stop my pity party and move on. If only it were that simple. If only I could I could find the OFF button for the self destruct machine that lives in my head.<br />I don’t feel sexy, I don’t feel pretty, I don’t feel wanted. What I feel is that I am trapped in this body that isn’t mine and I cannot escape from it. I feel needy and clingy. I feel like I need his attention and I am not getting it. He would rather watch TV or play video games than talk to me and the only time I can get his attention is when we are having sex and I use that as much as I can. And then it is over and he goes to sleep and I lay there wishing he would hold me. Wishing he would want me the way that I want him. Wishing he needed me, wishing we were equals. I have spent so much time alone in this house that it is become both my prison and my fortress. <br />I am not the person I used to be. Because of this stupid disease I have lost everything that made me me and I have been forced to start over, but each day I feel I have to start over again because each day brings new challenges and new symptoms. I am trying to accept this disease but I cannot accept the unknown. I can accept what is here today but I know that it will change in the blink of an eye and I will be forced to accept what happens tomorrow.<br />There are things that do not change. The numbness, the pain, and the emotional whirlwind that is so hard to stop that I feel like I am going insane. And yet I fight this disease. I fight with all that I have because I want to be there for my family. I want to see tomorrow even though I already know tomorrow is going to be worse than today.<br />This disease is trying to kill me. It is killing me. And I am going through the testing and the poking and prodding, the needles and the drugs, and for what? Every month I have to get an infusion that could kill me and it could save me. I would not invest money in the drug company’s stock, yet I have to rely on them to save my life. And I deal with the emotional turmoil of that every month, by myself, alone. I feel like I am fighting for a slower and more painful death. I do this because I have a family that needs me, I have two children who need a mother. I have a man who needs… well, who knows what he needs.<br />He doesn’t talk to me. He hides things from me. I have to snoop on him to know what the hell is going on with him and when I do I find out he is talking to the one person who has ever caused a problem in our relationship. A person he has sworn to me he will not talk to anymore. I see that he is giving his phone number out to another ex girlfriend. I see him deleting pictures off of his phone that he took at work, pictures he never sent me, and I wonder who he took them for. If he talked to me, if he told me what was going on I wouldn’t be so hurt and I wouldn’t feel the need to spy on him. But I feel like he is constantly hiding things from me, and I wonder if he is faithful, I wonder if our whole relationship is a lie. I wonder why he doesn’t care that it hurts me so much. My friends send me links to websites like online fuck buddy and adult friend finder and he is on there, and I am supposed to trust he would never lie to me or hurt me, I am supposed to trust that he is being open and honest with me. He works so hard to take care of us and our family and I know a part of him resents me for it. A part of him hates me because he is here and his daughter is in Kentucky. A part of him hates me because he has to work so damn hard just to provide for us. And I don’t blame him. Maybe that’s why when he come home at night I get one or two sentences before he shuts me out and turns on the TV.<br />I know that he loves me. I don’t question that. But I do sometimes question if he stays out of a sense of obligation or if he stays because he actually wants to be here. And that is a scary place to be. Maybe he shuts me out because he is scared and he doesn’t want me to see that side of him. Maybe he shuts me out because he is just going through the motions of life and he doesn’t want to feel. Maybe he puts his emotions in a box and walks away too. I don’t know. I really don’t know anything anymore. I just wish he would talk to me. I wish I knew how he was coping with all of this. I wish that we could have an actual conversation like we used to do back in the days of yore when we were open with one another. We have both hurt each other with stupid mistakes and I don’t know what we need to do to gain each others trust again. I find myself not trusting him, and its not his fault really. I have been hurt so much in the past by stupid men and I find myself feeling that way again. Like something isn’t right, like he is hiding things from me. I hate the way that makes me feel. It makes me feel small and petty, it makes me feel like I have to find whatever it is and I don’t really know that I even WANT to know what is going on when he is not here. Maybe I am making something out of nothing because I am insecure and I feel like I have lost everything and I am waiting to see if I lose him too. A part of me feels like I already have. And I cannot talk to him about it without it being a huge fight. I just don’t have the energy for any more fighting right now.<br />I have two kids that are wonderful, one is mine and the other was the greatest thing that Alex ever gave me. I never thought I would fall for his daughter and she would have such an impact on my life. But it kills me when she comes to visit and I have to give her back. Especially knowing she doesn’t want to go back. She wants to stay here with us. She has never really had a mother and I am closest thing she has to that. This does put a lot of pressure on me, to fill shoes that have been empty for so long. And I love her. More than words can describe. I am sometimes saddened that I have become her confidant as she tells me things that I do not know how to deal with. My heart breaks when she is hurting, which is happening a lot now a days and I am the only one who knows. She doesn’t see her father the way I do. She sees a man who does not stand up for her, who does not fight for her and she feels unwanted by him. I have no idea how to comfort her when her heart aches because she wants to be here and she has to go. I don’t know how to get her to see the man that I see. Yes, he has his faults but he is here anytime that you need him. He works everyday to provide for us, he goes to school, he takes care of us, and she doesn’t see that because she is not here and that is a decision that he and his father made. It kills me when she is not here. If feels like a part of the puzzle, a part of the family is missing and it is not the same. When I put her on that plane it felt like someone had ripped the heart right out of my chest. It hurt to the point of physical pain. I do realize that a part of me wants her here for selfish reasons, because I love her and I want her close. I want to do what is best for her. <br />Yes, I do think his parents are financially in a better place than us and they can afford to give her opportunities we cannot. But she has been forced to be an outsider, to be different because she lives with her grandparents and not her mom and dad. She wants a mom and dad, she wants a normal family. I want to give her that, but it is not my choice. I don’t know what hold Alex’s father has on him, but I know that his father has a way of making him feel like nothing, and cutting him to the core and he cannot stand up to him. I don’t understand their relationship and I probably never will. It is very different from my relationship with my mother.<br />My mother: well, what to say about her? She is there when you need her, she is there when you don’t and she is there when you don’t want her. She is dependant on me because I am the only constant in her life. I love my mom, but I find myself comforting her because I am in pain. I comfort her because I have a disease. I had to comfort her when I found out it was primary progressive. I am her kid, yet I feel like her shrink most days, sometimes I feel like her parent. But she is my mom and I love her. She is crazy. We all know this. Our whole damn family is crazy. If I can say nothing else for my mom, she is there for me when I need her. I don’t tell her a lot of things. I hide a lot of things from her, and I feel guilty for that, but at the same time, I know it is for the best.<br />I wrote about my father the other day. It was liberating to finally let that out. But it brought back a lot of painful memories and wounds that never healed. It brought back a lot of feelings about my sister that I would rather not have. But it had to come out. I have been living with this pain and this shame for far too long. And now that it is out, I don’t know how to turn off the emotions from it. And I cannot talk to anyone about it, except my shrink who only knows part of the story. I opened a closet of ghosts and skeletons and I cannot figure out how to shut it.<br />My mind shut out a lot of things that happened with my father, and I know it is for the best. But there is that side of me that feels like I need to know the truth before I can move on and put that behind me. I will never get over what he did and I will never get over the betrayal I felt from my sister. I know that he is dying and I know that until he is dead I will never heal from this. Yet, I somehow feel guilty to wish death upon him, to wish death upon anyone. That is simply not me.<br />Some days it feels like my entire life has become one big fight. A fight to live a fight to survive, a fight for my relationship, a fight for my kids, just one big fight. Days like today that fight becomes too much. I lose the energy, I lose the will to fight. I pretend the battle isn’t there. I focus on mundane tasks like cleaning or crocheting and I take my mind to another place, another time. I run away from the fight because it scares the hell out of me.<br />I have an average of 15 doctors appointments/infusions/mri’s/lab tests each month. I see my friends… about once every other month. They all have their own lives and they are all so far away. I miss them. I miss date night with Curtis. I miss Funny Bone Wednesdays with Bryan and Jen. I miss shooting pool with Nichole, I miss just hanging out. I would gladly trade all of that for my family. I live for Sunday nights when we all get to sit down for dinner together. Do you know how pathetic that is?<br />I need to find something for me, something that gets me out of this house, some place where I am actually needed. That is what I miss about working. I miss having people depend on me to get things done. I miss the chaos, I miss the responsibility. I have tried to make a business of my own, and I have failed miserably at it and it is hard. I gave it all that I had and it wasn’t good enough and that is how I feel about my life right now. I don’t know how to describe it, and maybe it will get better if I ever get approved for this stupid disability thing and I can have some money of my own and I can start doing things. Right now I think the finances are killing me. I have enough money to put gas in the car, buy cigarettes, and get groceries. That is it. There is nothing left after that. I don’t have the money or the gas to go do things, and it isn’t right to ask Alex for money. I hate asking him for money. I hate that I can’t help with the bills. I hate that he works so much and never gets time off. I hate that I am stuck in this place that I can’t get out of. I hate that my emotions are haywire and I hate that I only get one hour a week with my shrink.Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0tag:blogger.com,1999:blog-5277259792556670982.post-25859707575794012812010-12-13T07:32:00.000-08:002011-01-11T07:38:16.434-08:00Ghosts of my pastWhen I was growing up I was taught that the man my mother married shortly after I was born was my father. He turned out to be a child molesting asshole. Fortunately I do not remember the time I spent with him and I can barely remember what he looked like. What I do remember of him were the countless psychologists with their dolls where they asked me to tell them what my father did to me. I remember he went to jail and that is the last I saw of him until I was 18, and that was by chance that he happened to come into a store I worked at. And by chance, I was able to hide in the back of the store until he left.<br /><br />My mom had another friend when I was growing up. He was her best friend and the closest thing I had to a father. I won’t use his real name here, in part because saying his name over and over would not allow me to finish this story without breaking down. It is a name that has been banned from my lips and banned form my thoughts. Today, we will call him “Mike”. Mike was an older man, 10 yrs older than my mother. At the time that my mother had me, Mike was going through a divorce from a marriage that resulted in two children and one very psychotically challenged wife. What is strange about this is that I grew up around Mike, and his ex-wife who spent a lot of time at his house.<br /><br />Mike had his own vices. He drank everyday, he hung out with drug addicts, he snorted coke, and in the end, he decided he liked girls much younger than him, but only if they were his children. Mike wasn’t the great knight in shining armor that he made himself out to be but it took a long time for others to see it. Mike’s daughter ran away and got married right after she turned 18. She got as far away as she could and built a life for herself that didn’t involve Mike. Mike’s son… well, let’s just say the apple doesn’t fall far from the tree. He got caught up in drugs and has spent his adult life in and out of jail for one reason or another.<br /><br />I was 9 yrs old when Mike told me he was my real father. I went to my mom and asked her about it and that was when she told me that there was a possibility that he could be my biological father. She never told me this because she didn’t want to hurt me and she didn’t want to confuse me. To me, this was great news because I always loved Mike like a father and he was always there for me.<br /><br />Mike was a fun guy. There was laughter and music. He would start tickle fights. Sometimes his tickles would go in places they shouldn’t but it wasn’t so strange as for it to be a big deal. Mike used to play practical jokes. He used to come up to the window that was above the bathtub and yell “boo” while you were in the shower. This began to happen almost every time I would take a bath or shower. And he never yelled “boo” until you looked up and saw him in the window, staring down on you as you were naked and helpless.<br /><br />There were only 2 bedrooms at Mike’s house. One belonged to my sister. She and my mother could not get along so my sister moved in with Mike, even though he was not her father. Since there were only 2 rooms and “my brother” (Mike’s son) always slept on the sofa in the living room, I somehow got stuck sharing a bed with Mike when I would come over. There were times that I did not remember taking my clothes off in my sleep but I must have because I know I had one a t shirt and undies when I went to bed and I would wake up naked. It was kind of weird, I never did that at home. I believe I was 11 or so when this started happening. Mike used to comment on my body changes all of the time, pointing out that I was getting taller, my hips were getting fuller and I was developing “buds” for breasts. He always paid particular attention to my body.<br /><br />Mike had a house on a lake that we would vacation at every summer. There were times when mom could not get off of work to go with us and we would go with Mike. It was a pretty cool place and I actually had my own room there. One summer, when I was 14, Mike invited my best friend to come with us, and somewhere during the course of this trip he tried to convince us to go skinny dipping with him. We refused of course, being shy teenagers and all. He had no problem stripping naked and getting in the water with us. I remember waking up the next day with Mike on top of me, naked. He had pulled my shirt up and had one hand on my breast and was holding himself up with the other. I drew my knee up into his nuts as hard as I could. I then pushed him off of my bed and left the room. I went out to the dock and sat there, unable to feel any kind of emotion about what just happened.<br />When I went back inside, Mike was making breakfast for everyone and pretending like nothing had ever happened. I spent the rest of the weekend avoiding him like the plague. I barely slept at night for fear he would come back and I was jumpy. I was scared of him, scared of the idea of him. Scared to tell anyone what had happened, and a part of me was scared to lose the only father I had ever really known.<br />We went home. I was too shocked and embarrassed to tell my mother what had happened that week. My best friend spoke up to her mom and told her about the skinny dipping idea and her mom told my mom… you know how the grapevine works. So she sat me down and asked me about it. I cried. I told her about the skinny dipping idea, and I never let her know about the rest. She was livid. She was angry, hurt, betrayed, and she was so concerned about me. She kept asking if anything else had happened, and I kept telling her no. I didn’t want to hurt her anymore than she had already been hurt and I knew if I told her what really happened she would most likely kill Mike. I mean she does have a gun and would literally have killed him. So I didn’t tell her.<br />Mom stopped talking to Mike after that. My sister on the other hand, well she still talked to Mike. She still talks to him. She allows him to be alone with her children, she has all faith and trust that he is a wonderful man and not the monster that I know him to be. When I was 18, I was at my sister’s house babysitting when Mike showed up looking for her. I slammed the door in his face and burst into tears. I was terrified. A few weeks later, I wrote my sister a letter, telling her everything that happened and begging her to please stop taking her children, my niece especially, around that man. She responded by telling me she didn’t believe one word I said, told me that my mother had brainwashed me into thinking Mike was a monster and that she was not going to stop talking to him, no matter that it killed me inside.<br /><br />I still have nightmares about Mike. These have changed over the years. The nightmares that used to haunt me were of what could have happened, what did happen, and a complete feeling of helplessness. My new nightmares involve bumping into Mike and himtalking to my daughter. My new nightmare is that my daughter will find out about Mike and she will know that I have lied to her since she was little. When my daughter asks about my father, I tell her he died when I was little. In a sense it is true. He is dead to me, a part of my life that died a long time ago. It is easier for me to think that he is dead than to know that he is alive and still able to hurt people.<br /><br />It was after all of this took place that I realized why his daughter (my sister) ran away and got married when she turned 18. I found out years later that he had been raping her and she could not stop him. For many years I was angry with her for it. Not angry about what happened but angry that she did not tell anyone. She did not try to stop it, and she knew he was alone with me. She knew he would probably come after me next and she did nothing to stop it. Then I realized my anger was my own cowardice because I had not spoken up. I had done nothing to stop it.<br />My life began taking a nosedive at this point. By the time I was 16, I was getting in trouble at school, smoking weed with my friends, I became interested in body piercings, sex, drinking, all things I attempted to use to cover up my feelings. I tried to take my mind other places because I didn’t want to face the reality of what had really happened. I didn’t want to think about my first period and the fact that it didn’t hurt when I used a tampon. I didn’t want to think about my first gyno visit when the doctor accused me of having sex and calling me a liar when I told her I was a virgin. I didn’t want to think about the things that my mind had managed to block out for so long. I just didn’t want to see it. I didn’t want anything to do with my sister who called me a liar, and didn’t believe what I told her when she was the only one I ever told what really happened. I didn’t want to have that happen with anyone else, so I didn’t tell anyone else and it ate me up inside.<br />When I was 19, I started having a lot of depression, this is when I was diagnosed as being bipolar. I went into counselling to help me deal with all of this. I spoke of my concerns for my niece, I spoke of my heartbreak with my sister. I had heard through the grapevine that my father was asking for custody of his ex girlfriends little girl because she was going to jail for her cocaine habit. I decided it was time to step up and do what his daughter never did for me. I decided to stand up and try to stop it from happening to anyone else. So I met with a police officer who took a report. A week later her called to inform me that I did not have any evidence to support my claim and without evidence no charges could be filed. My father was granted custody of this child, she had an illness that killed her a few years later. For some reason I was relieved that this child died so young because I felt like it was the only way to save her. Every time I would go to counseling after that she would try to dwell on my feelings about all of this and try to make me face ghosts that I wanted to bury. I stopped going to counseling after that.<br /><br />Like I said, my sister still talks to this man. Still relies on him for money, still calls him her dad and still thinks I made the whole thing up. This is the same sister who spent 3 month in jail because Mike caught her writing checks out of his bank account. And who take care of her 2 kids while she was in jail?? It wasn’t Mike. It was ME. Her sister. The devoted sister who stood by her side through all of it. The sister she later called a liar.<br /><br />I know other people who still talk to Mike. They don’t know what happened between us because I never told them. I know that in Mike’s living room is a picture my sister gave him of my daughter and her children. I know that Mike asks about me every time he sees one of those friends and I know that he knows what is going on in my life. <br /><br />Because of this, I cannot forgive my sister. I cannot be friends with her, and I cannot get over my hurt which has manifested itself to sheer rage over the last 11 years. Every time I see her, I am reminded that she picked him over me. Every time I talk to her I realize that I do not like her. If we were not sisters, I would not be friends with a person like this. And I somehow feel guilty that I want nothing to do with her. I do not send her pictures of my kid anymore. I do not chat with her and the only contact we have is when she comments on my facebook posts. I see her maybe twice a year at my mother’s house. She does not know where I live and I do not know where she lives and I am perfectly OK with that. We were never close growing up as she was almost 10 years older than me. Aside from genetics, we have absolutely nothing in common. I feel bad that our relationship effected my relationship with my niece and nephews. I feel bad that I am not there for them when their mom and dad have spent the last 14 years making each other miserable. They finally got divorced. She left him for a married man with 6 children and she has no shame in telling the world she loves this adulterous man. I have absolutely no respect for this woman but I would feel guilty deleting her from facebook because she is my sister.<br />I have never been able to tell her how I really feel about the whole situation. Maybe one day I will be able to, but I do not have the will to start that war and I know my mother will be dragged into it. I know my mother would choose me over my sister and my sister knows this. I think that is one reason she still clings to my father because she knows my mom would choose me. She knows my mom is there for me no matter what and she knows if it came down to saving a life and we both needed a kidney, my mom would give me hers and would let my sister die.<br /><br />I decided to share this story after writing it because I know there are others out there, others like me who have been through this and I want them to know that they are not alone.Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com1tag:blogger.com,1999:blog-5277259792556670982.post-50567188983263604602010-09-14T20:19:00.000-07:002010-09-14T20:52:42.127-07:00Just fix SOMETHING!In the last 2 years, the numb patch of skin on my leg (which lead to being diagnosed with MS) has set off a scientific treasure hunt of every doctor within a 50 mile radius. <br /><br />What they are currently drugging me for/ treating me for today:<br />* MS- I now have 36 holes in my brain and spinal cord, all over 55 mm in size. <br />* Grave's Disease/ Hyperthyroid (which we knew about 10 yrs ago. 6 yr ago we killed my thyroid, but the MS meds have created a zombie thyroid that has come back o life to take over the world.<br />* 4 broken bones in my spine- 2 of which were from me falling a whole 8 inches (7 months ago), the other 2 are from meds/ physical therapy used to treat the first 2. <br />* Degenerative Disc and Degenerative Joint Disease<br />* Osteoarthritis<br />* Optic Neuritis<br />* Neurogenic Bladder (my brain no longer tells my bladder how to empty.<br />* Bipolar Disorder/ Depression/ Anxiety (well, duh, ya think I might be a little depressed?)<br />* Chronic Fatigue<br />* Insomnia (yes, I have both)<br />* Torn Hip Flexor/ Bursitis <br />* Pinched Sciatic Nerve<br />And I am sure there are more dx's to add to the list that I may have forgotten... did I mention I have MS and holes in the brain, so I tend to forget things?<br /><br />And in 2 years time: the countless doctors, nurses, the over 100 doctors appointments, the 30 trips into the MRI machine, God only knows how many needles and blown veins (I would guess this to be around 80 veins, and more needles), and over $200,000 billed to my insurance company... and all of my doctors, specialists, nurses, surgeons, radiology techs, IV Therapy team, at home care... they have all worked so diligently in the last 2 years to...? You tell me. They have been unable to fix the first damn thing! Not a single thing on that list. <br /><br />They have medicated me, infused me, shot me full of drugs, convinced me to shoot myself with needles, my current pill count is 22 a day plus a monthly infusion... ha and I am still in pain, and I am still broken. I have tried acupuncture, chiropractic (which was helping for pain but I have 4 broken bones in my spine and he cannot touch me), dieting, physical therapy, praying to whichever God would listen, everything short of voodoo and believe me, if I thought it would work, I would try it. I have been banned from: bending, lifting, working, drinking, going outside when it is hot, standing, walking, they tried to ban me from sex! They are working so hard to save my life but they have not realized that I no longer have one.<br /><br />At this point, I wish to take this list and attach a reward. The first doctor who can fix one thing... I don't care if it is the back, the thyroid, the bladder, or whatever. But it has to be one of the things on this list... so let's start a collection for the reward. You guys want money? Body parts? I will give you a kidney and two ovaries full of eggs that I am not using! Anything you want. JUST FIX SOMETHING!! I have lost all faith in the medical community at this point. Or maybe it is just Virginia Doctors and I need to move? <br /><br />So, I am scheduled to go in Thursday for cortisone injections in my hip. I am not wagering any money on whether it works or not. I am curious to see if this doctor can do what no man has done before, or if he will be your typical doc who fixes nothing and finds something else wrong with you. I am trying to be hopeful, but this is the same doc who sent me to the surgeon about my back. I set myself up for a huge disappointment with that one. Bouncing off of the walls excited that I would be getting the surgery and it would make the pain in my back ease up some, only to have those dreams crushed and being sent home in tears. <br /><br />Yes, I have become angry, and bitter, and frustrated. I will not apologize for this. I have been playing lab rat for 2 years and it sucks. Oh and that is not the whole list of what they have found in the last 2 years, this is just the list of things that decided to "treat".Alone Time Pleasureshttp://www.blogger.com/profile/06370857284035797265noreply@blogger.com0