4 Days of Fentanyl

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.

 

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.

 

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.

 

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.

 

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.

 

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.

 

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: 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.

 

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.

Technorati Tags: MS,Multiple Sclerosis,Pain,Pain Management,Compression Fractures,Lisfranc Dislocation,Morphine,Morphine Sulfate,Fentanyl

Tears of Joy, this is new.

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.

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.

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.

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.

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.

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.

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.

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.

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.

9 blown veins to get the contrast in my arm.

I was bruised from elbow to hands on both arms.

Took forever to get the darn things done.

BUT.......

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.

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.

Been a while since I cried happy tears.

Insomnia Insomnia INSANITY!!

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.

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.

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.

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.

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.

And now he is blackmailing me into making an appointment with my neurologist by withholding sleeping medication. I mean seriously??

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.

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??

I am so frustrated I want to punch someone in the face!

Band Aids and Bullet Holes

Band 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.

When 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.

MSisms

There 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.

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.

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?

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.

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.

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?

"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.

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.

Doctors 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.

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.

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.

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?

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.

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.

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.

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.

It's Over and I Am Alone, Broken and Alone

And 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.
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.
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.
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?
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.
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.
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.
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.

Roller Coaster Ride From Hell

Roller Coaster ride from hell.
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.
But, I thought of my 5 things:
1. Pain pills
2. Coffee
3. A 2 hour head start with school being delayed.
4. My Family
5. He was coming home today
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.

Getting Through A Crappy Day

Getting through a crappy day.
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.
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.
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.
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.
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.
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.
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.
Things I am thankful for today:
1. No snow, schools opened on time, I don’t have to change my doctors appointments around.
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.
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.
4. Knowing that I am loved- loved by my family, my friends, and all of my online buddies who are also battling MS.
5. The house is warm, the coffee is brewed and I am a cute brunette.
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.
I have rambled on enough and I need to get ready to go. I am sure I will be back on later.