OK so obviously the measuring cup I bought to record my peeing ability is wrong. According to the cup I am retaining well over 7 cups of fluid...which I don't think is humanly possible. I am getting ready to go in for the testing. I am so not looking forward to having a cath inserted and seeing how much fluid my bladder can hold before it leaks. This just doesn't sound like fun. And the fact it is to be done so early in the morning only makes it twice as bad.... More later after its all over.
Monday, December 28, 2009
Wednesday, December 23, 2009
Haven't updated in a while...let's see, where to begin? Christmas shopping sucks when you have MS! As I found myself stumbling around like a drunken monkey last night I realized I may have over done it just a little.
I have one more present for the kids to pick up on the way to moms and I will be done. Fortunately this one is at a friend's house and in the same neighborhood as my mom.
Then the kid and I are headed to spend the night at moms then up for Christmas with my sister and the kids tomorow morning then back here to cook and clean for christmas day so that the kids can destroy my house again. And I get to clean again before my mom and his parents come over...and some time between then I have to get my kid packed up and shipped out to go to her dads so she can do Christmas there. See, there is a downfall to having a broken family.
UGH! So for the dreaded MS -> Let's see...oh wait, I can't. Left eye is all wonky again, my legs are somewhere between numb and oversensative, and for some reason my butt is numb. That's a fun one. Still can't pee! Balance is all crazy and the fatigue is starting to set in again.
Swicthed to a new wholesaler and I am trying desperately to get the new inventory set up on the sites which is time consuming and I just don't have the time, plus I have 2 kids here until after New Years, so getting any work done has to be after bed time. I am so looking forward to the time when they go back to school.
Well, i have to get off here and go get some cleaning done. Hope everyone has a wonderful holiday!
Posted by legzzalot at 7:26 AM
Friday, November 13, 2009
August 2008- Small patch of skin felt numb on Right calf inner calf area.
Sept 2008- Slip and fall resulted in 3 broken bones in hand, pulled tendon in forearm (right arm) and entire right leg went numb.
End of Sept 2008- Made appt with Orthopedic Specialist- Several X-Rays/ Reflex tests, determined it was not a pinched nerve, and had nothing to do with my spine as it was of normal size and alignment. Referred me to a neurologist, for possible nerve damage.
October 2008- First appt with neurologist- determined there was a problem in my spinal cord and sent me right away for an MRI. Oct 31- Results from MRI confirm neurologist suspicions of Multiple Sclerosis. 4 lesions found in Thoracic spine. I was then sent in for another MRI of my brain and blood testing and LP to test for any other possible causes for lesions. There was no MRI done on the Cervical spine at this time.
November 2008- Results of all tests are back, 7 lesions found on brain along with the 4 in the thoracic spine. LP tested positive, all blood work indicates no other possible causes. At this point, the left leg is going numb, along with numbness in back, mostly right side form shoulder blades down. Neurologist started a 5 day treatment with IVSM at a gram a day. I became very ill, and very swollen. Weight gain, depression, lethargic, and 6 blown veins in 5 days time. Neurologist administered water pills and a five day supply of Ambien to try to counteract the effects of IVSM. Two days after stopping IVSM, woke up soaking wet, and covered in sweat, shivering, and aching. This lasted for 2 days and then went away.I was on the Medrol dose pack taper after the IVSM. This was followed with extreme pain in both ankles, felt like the joint was locking up. After a few days this too went away. Three days after LP, began having tension headaches, which were accompanied by a burning feeling in both legs. Neurologist prescribed Duradrin to treat headaches. Also prescribed Zoloft for depression and Amitriptyline to aid in sleeping. Neurologist also administered Skelaxin for pain.
December 2008- Began having balance issues when walking. I could no longer walk in a straight line. Also began seeing yellow/white spots in my left eye. Blurred vision in the left eye. Evoked Potentials test revealed “mild case of optic neuritis”. Neurologist administered 7 days of Medrol dose pack. Depression continued, and I was told to up the dosage on the Zoloft. Started daily injections of Copaxone.
Jan 2009- Woke up with severe pain in the spine between the shoulder blades. Called neurologist was instructed to go to the ER. ER docs contacted the neurologist who recommended Percocet and Another round of Medrol dose pack. Followed up the following day with neurologist, was told symptoms were stress induced, and I was sent home. Followed up again two weeks later, symptoms continued to get worse, including electrical feeling down my spine when I would bend my head. We tried another 7 day taper of Medrol dose pack. Vision issues and balance issues continued to progress. At this point I was numb from the shoulder blades down to my toes on both sides. I was once again told it was stress induced and I was told to follow up in 4 months. At this point I decided it was time to find a new neurologist.
Feb 2009- Made an appointment with a new neurologist. For mid march. At this point I was no longer able to drive a car. I could not feel the pedals under my feet and I could not see clearly out of my left eye. Balance issues continued to progress. Called old neuro about worsening of symptoms and he called in another 7 day taper Medrol Dose pack.
Mar 2009- Went to Kentucky to visit family. By the time we arrived from the 12 hour car trip, my pinky and ring finger on right hand had gone completely numb as well as the skin on my forearm down to my elbow. Saw new neurologist who immediately called in another 5 day round of IVSM, administered at home this time. She also sent me in for another MRI which showed a more lesions and growth of previous lesions in the Cervical and Thoracic Spine, as well as the brain. See attached. Called when we returned home, the neurologist on call called in a prescription for Baclofen. To help with the spasms in my back whenever I would lay down.
End of March 2009- I became ill after my fiancé contracted a case of walking pneumonia/ bronchitis. At that point, I decided to stop taking the Copaxone and all other meds while I was on the antibiotics to treat the pneumonia/ bronchitis. Within 3 days, I noticed a dramatic improvement in my balance. By 7 days of not taking Copaxone, I was able to walk in a straight line, I could feel my legs and back, and the pain had subsided. It was at this point I followed up with my neurologist, who recommended I begin Rebif injections. I decided to try to take a more homeopathic approach. Ten days after stopping Copaxone, my vision had returned to normal and the neuro-opthomologist could find no signs of optic neuritis.
April 2009- I decided not to start the Rebif, and to try treating the disease with diet and vitamins. I gave up beef and pork, began taking a daily regiment of vitamins. Vitamins included: Vitamin E, C, B6, B12, D, Calcium, Selenium, Aloe Powder, Omega 3-6-9. Only one of my symptoms remained. I still felt electrical charges when I would bend my head. This began to get worse and I began to have what felt like crawling skin/ pins and needles down my back whenever I would dry off after a shower. None of my other symptoms returned. Another MRI on Brain and optic nerves. Brain shows progressing. See attached.
June 2009- We moved. Numbness, and back spasms returned. I assumed it was from the physical stress of moving, waiting two weeks, when it did not subside, I called the neuro. I was told the symptoms were most likely a result of physically over working, and to give it some time. Numbness continued to get worse, as well as the pins/needles feeling in both of my legs. Spasms started in my back again whenever I would try to lay down and pain in my spine between shoulder blades and in neck returned.
July 2009- Sinus infection brought on the return of Optic Neuritis. Antibiotics administered. Followed up with neurologist. Another 5 day round of IVSM was administered. Started Neurontin for the pins/needles feeling in my legs which is increasing with heat.
August 2009- Finished IVSM and another MRI of Cervical and Thoracic Spine shows it is still progressing and new lesions are forming. Started Avonex weekly injections. Also started Ambien to aid in sleeping and Tramadol for pain. Began experiencing sever depression issues, pain continued in my spine. At this point the neurologist called in a prescription for Ketorolac. After stopping the IVSM, had what felt like a kidney infection followed by a yeast infection that lasted for over a week. Was prescribed Citalopram for the depression. Began having night sweats and not being able to sleep at night.
Sept 10-12 2009- Awakened with severe pain in right lower rib, pain spread to include left lower rib. By the end of the day the pain also included my back, it felt like there was a band around my body squeezing. I informed the neurologist the pain subsided after 2 days.
Sept 24, 2009- Had Tubal Ligation surgery. There was excruciating pain afterwards, mostly in my spine and abdomen. The pain increased as time went on, and I began running a low grade fever . Left eye began to have fuzzy vision, numbness in my right hand (pinky and ring finger down to my elbow). This also caused both of my legs to go completely numb. The depression issues continued along with MS related fatigue. Began to have injection site reactions to Avonex, including swelling, and redness. Skin was hot to touch. Was advised to stay on the Avonex at this point. Night sweats continued, to the point I was soaking through my pajamas and my sheets.
Sept 30, 2009- Diagnosed and treated for a sinus infection and inner ear infection.
October 2009- Injection site reactions with Avonex continued. Also began breaking out in hives on both legs and chest. Regained some feeling in my legs, pressure can be felt but the skin is still numb to the touch. My right leg has bouts of hypersensitivity. The skin is either numb or feels like there is electricity buzzing through it followed by a crawling bug feeling under the skin. Began having sever cramping and severe periods from the Tubal Ligation. I was put on birth control pills to counteract this. Follow up with neurologist, it was decided that we would be stopping Avonex and switching to Tysabri. Due to a worsening of pain and cognitive issues, we did another set of MRIs where they found more lesions in my brain and determined the lower back pain was from Degenerative Disk Disease and there was mild bulging in every disc of my lumbar region. I decided to stop taking Avonex on 10/24/2009. The injection reactions were getting worse with the hives and the night sweats, and the fatigue and depression were also increasing. Was diagnosed and treated again in October with another sinus and inner ear infection.
November 2009- Gained 13 pounds in two weeks time. Swelling, and cramping in lower abdomen, strange smelling urine, constipation, lower back pain, and mild grade fever resulted in another trip to the doctor. Testing found glucose and protein in urine. Because it tested negative for white blood cells it was determined this was not a kidney infection. Blood work was tested, and I was sent in for ultra sounds. Nothing found. Was prescribed Avelox and Vicoden and told to follow up with my neurologist.
This has been my life for the last year....
Posted by legzzalot at 6:42 AM
Saturday, October 17, 2009
You have to love my life. It is never boring anymore. One would think my not working and being home and rarely leaving my house would get boring. But no, my body finds ways to entertain me.
I was told that if I attempted to carry another baby to term it would most likely paralyze me. From all of the very large and scary lesions on my spine, the doctor is baffled that I am walking as it is. When the time comes to switch out my IUD I am ready! Except....my insurance will not pay for contraceptives. It will, however pay for a tubal ligation. After much deliberation, a few tears shed, and an acceptance that I will never have another child, I agree to have this surgery.
I go in, get the surgery. Which I am told was a success. I wake up from surgery in excruciating pain with a nurse shoving ginger ale and graham crackers at me because my blood sugar is low. Well duh I wasn’t allowed to have anything to eat or drink before the surgery. They refuse to take me to the recovery room until I eat these crackers and drink the ginger ale. I ate the ginger ale felt great on my dried up throat (they had a tube in there) and they wheel me to recovery. A few minutes later the projectile vomiting starts. Man I love my nurse. LOL
After about an hour of excruciating pain and sitting in a bed smelling puke I tell the nurse I am ready to go home. I can lay in pain at my house just as well as in the hospital. So they send me home. Well, I made it to my moms. No way I was going to make it back to my house some 65 miles away. The pain was torture and I could not get comfortable. The Percocet did help that a little.
Spend the day being pampered by my mom. Sent the man home to take care of the animals. Made it back to my house the next evening. It was good to be home. Still in pain, and that’s when the uterus decided to try to run away. A whole new kind of pain.
Then I woke up and my legs were completely numb again. YAY I have MS! First thing you do when new things arise is take your temp. I had a slight fever and decided to call my doc. Of course, he needs to see me before he can call me in an antibiotic. And he can only see me around the time my DD is getting out of school. I have to leave the man here, get in my car and drive the 60 miles to the doctor’s office. Mind you at this point I have a fever, my legs are numb, I cannot feel the pedals and I have stitches in my belly that are showing signs of infection. Oh yeah, and my uterus is still spasming which feels like contractions and my left eye is acting up…and I am driving!
Get to the docs office who tells me to treat the stitches topically and that he does not feel comfortable giving me an antibiotic because I am on immune suppression therapy for the MS. He then offers me another prescription for Percocet and tells me to have a nice day. He gets cussed out at this point and I am ready to stab the man in his testicles with a scalpel. I then get to drive back home in the same condition. I hate this man.
Two days later my daughter comes home from school in a particularly foul mood and I discover she is running a fever. This is the same day my head got all stopped up. I take her to the doc and find out she has a sinus infection….which means another trip to the doc for me. Turns out I have a sinus infection and an inner ear infection. Two weeks later I am still fighting the sinus thing.
Then I get my monthly friend who I haven’t seen in 3 years…which is why I loved the iud so much. This friend comes with uterus spasms again and massive amounts of yuck. Call back to my OB/Gyn office. Talk to my favorite midwife. We go over a checklist of symptoms. Sounds like I have Post Tubal Ligation Syndrome. But we can’t be 100% sure because most of the symptoms are also MS symptoms which I was having before the surgery. And how do we treat this? Birth Control Pills! The same pills my insurance would not pay for when I wanted to get my IUD replaced. They will now pay for them because they are not being used for contraception, but instead for hormone replacement. You have got to be shitting me right?
I am now taking not one but two birth control pills a day to counteract the effects of getting my tubes tied. The MS symptoms are getting worse by the day and when I go in to see my Neuro on Monday I get to request another MRI because I am pretty sure I have grown two new lesions on my spine. I shall name them Bubba and Earl. This is my life. Welcome to it.
OH OH and as if this story isn’t bad enough…. My daughter comes bursting into the bathroom the other day at the MOST inopportune moment (while I am trying to clean up the yuckiness) and proceeds to freak out that mommy is bleeding and tells me I need stitches! I was then forced to have a very serious talk about menstruation with my 5 yr old. That was fun. Almost as much fun as getting a call form the school nurse the next day. My darling daughter went in for her hearing test and she asks the nurse “I understand when you get old you have blood in your belly for the baby and if it doesn’t come out it makes you sick, but WHY DOES IT COME OUT OF YOUR COOCHIE??? Shouldn’t it come out of your belly button?? Because my mom’s coochie is bleeding!” So we had to have another talk last night. This is fun.
And does double the protection mean I get to have double the sex? Hell no. I can't stop the bleeding from getting my tubes tied. Moral of the story here: Don't ever think that it can't get worse because it will find a way!
Posted by legzzalot at 8:52 AM
Tuesday, October 13, 2009
Depression, frustration, and anger. These are some of the things the doctors warn you about when you have MS. They warn you about a lot of things in hopes of preparing you for what life has in store. But there really is no way to prepare for any of it, and this is the case with life in general not just with MS or any other disease.
Fatigue, optic neuritis, balance issues, pain, insomnia, numbness, depression, hypersensitivity, bowel and bladder dysfunctions, sexual dysfunctions… These are all common symptoms with Multiple Sclerosis. You can read about these symptoms, you can research treatments, but you cannot prepare for any of it, until you experience it. And most of the time the doctors don’t tell you what to expect because there is no sense in getting you worried over something that may or may not happen. And I have not read anything in a book, or online that has prepared me for any of this.
One of my biggest challenges with this disease is the frustration I feel when I am no longer able to do the things I enjoy. In the beginning of summer, we were hitting the beach almost every day. We were at the park, we went hiking, we played and we laughed and although I had this disease life was good. By July I couldn’t step outside without the heat causing my legs to crawl, and causing my eyes to act up. I couldn’t pick my daughter up from the bus stop when school first started without taking my air conditioned car. We live 3 houses away. I knew if I attempted to walk down and stand there for the 10 minutes or so that we wait for the bus I would not be able to walk back home. And although you learn to adapt to these changes in your body and in your life you cannot help feeling frustrated.
I have a very aggressive form of this disease, and the only way to treat an aggressive form is with aggressive therapies. So I pump these toxins into my body each week. I take pills for the MS symptoms, I take pills to counteract the symptoms of the medications. I inject myself every week with a drug that tries to shut down my immune system. I get sick, and I stay sick because my body cannot fight these attacks. And your entire life becomes one big science experiment. This drug makes it worse, this drug is effective for most people but not you. Let’s try this one. Let’s try that one. It’s all one big guessing game. What works for some doesn’t work for others.
There is such a thing as “MS Fatigue”. We have our own class of fatigue, and until you have experienced it, you have no idea. I can tell you there are weeks at a time where I am completely useless. It takes every ounce of energy I have to get dinner cooked. I can’t get off the sofa, and when I do it’s because I am going to get into my bed. But even sleep is terrifying, and painful. Am I going to be able to see when I wake up? Am I going to be able to walk? Is the crawling bugs feeling on my leg going to let up so I can fall asleep? I look around my house at the laundry piling up and the floor needing to be cleaned and I cannot find the energy to get off of the sofa and take care of these things. Mommy doesn’t want to play today sweetie she is so tired. And you lay here and watch life as it passes you by and this is the fatigue they talk about.
People can see that you are having a hard time walking. And even if they can see the physical impact and they can understand the cause of these symptoms. But no one can see the emotional impact that this disease has on you. No one can feel what is going on in your mind when you realize you cannot walk across the room. No one feels your heart sink when you look at your shoe collection and you remember the days when you could actually wear them. No one can see the disappointment in yourself when your body refuses to respond to the drugs. Or the absolute feeling of hopelessness you feel when you look into your child’s eyes and you don’t know that you are going to be here to watch her grow up. You can no longer run around the yard with her, and you don’t know if you will even be able to walk with her tomorrow.
You see people who take life for granted and it makes you angry. You used to be one of those people. You worked too much, you didn’t take time for yourself, or time for your family. And now you can’t get that time back. And it makes you angry.
Every day isn’t a bad day. And you do learn to appreciate life a lot more when you have something threatening to take it away. Every day is a battle in the much bigger war called life. And every day that I wake up I awaken with the knowledge that I am alive and this disease didn’t win, and this war is not over.
But, some days, like today you just don’t want to fight anymore. Some days you just want one day where you are not reminded that this thing is here and it’s kicking your ass and there is absolutely nothing you can do to stop it. These are the days when you have to fight harder. These are days when you have to use that anger and that frustration to push you through to tomorrow. And you cannot worry about what tomorrow has in store because even if you do there is no way to be prepared. Life happens, and there is nothing you can do to stop it.
Posted by legzzalot at 9:58 AM
Monday, August 31, 2009
Sleep is a blessed curse that taunts me in the night. She is an ellusive creature who shudders at the thought of our togetherness. The traps I set are futile as she finds a way to escape me every night and I am left a shadow of my former self. I miss her. Like the love I feel, or the air I breathe, I cannot seem to function without her. Why does she torment me so? Does she not see how I long for her company? Can she not feel the pain that is caused by our broken bond? Oh dear lady sleep, please come back to me. As the sun sets and the moon shines from above I long for you. If you come back to me, I promise that I shall love, honor, and cherish every moment we spend together.
OK, so I have decided sleep is obviously a woman. And somehow I have managed to piss her off. They say hell hath no fury like a woman scorned, so obvioulsy she is one pissed off little lady!
Sometimes you are damned if you do and damned if you don't. Tramadol... supposedly a great pain killer as it is supposed to block the pain receptors in your brain. WRONG! For me, it gives me a headache and makes my neck hurt. BUT... if I take an Ambien afterwards, it makes everything stop hurting and I turn into a zombie before I fall into the bed and sleep like the dead. The only problems of course being that it's addictive and when I wake up I feel like there are weights attached to my arms and legs and my brain hurts. It feels like my skull is shrinking and there is just not enough room in there for my big giant brain.
Doc decides to add Ketoralac, an NSAID. (Non-Steroird Anit-Inflammatory Drug) which by the way has about the same effect as taking two tylenol.
This leaves me with 3 options:
* Drug up before sleep and feel like crap all day
* Just take the ambien and get a few hours of sleep but no enough to function
* Take nothing and skip sleep all together.
Yesterday I decided the pain was not unbearable, it was still there but not that bad. So I decided to take and Ambien and get some shut eye. Ambien and I have a Love Hate relationship. On the one hand, it shuts my brain off and puts me right to sleep. On the other hand, it only stays in your body for a few hours. It does not make me groggy in the morning and I don't sleep through my alarm going off. These are very good things. Except... I no longer sleep through my fiance's alarm going off either. And once I awake, that is it. Sleep is over, time to get out of bed before the pain in your back renders you immobile. I love that it puts me to sleep, but I hate that it does not allow me more than a four hour window of sleep.
A lack of sleep does many things to a person. I forget words, I have a hard time forming sentences, and most importantly, I feel an overwhelming urge to just kick the living shit out of anything that moves. Especially those people who feel the need to wake you from a much needed sleep. This morning I was woken up by a hand shaking me and asking me to do something (I assume "roll over" as there was a shaking hand on my stomach and some grumbling between snores coming from the other side of the bed). Three minutes later the alarm goes off. This is about the time my bladder reminds me it's time to get up. I get up, I make coffee and 45 minutes later the grumbling snoring shakey hand man come stumbling out of the bedroom. YAY! It's time for him to go to work. I can finally get my bed back.
I go crawl back into my bed, pull the covers up around me and.... And I lay there, then I turn this way and that way and no matter what I do I cannot get comfortable. Sleep left my bedroom at 2:45 this morning and she has no intentions of returning. 3:30 this morning I decided to have a cup of that coffee I made. I have been up for over 5 hours and it is not even 8:00 AM. This is ridiculous. On the plus side, I stopped crying. I think I am too tired to cry.
Posted by legzzalot at 3:23 AM
Wednesday, August 26, 2009
And the MRI shows once again....IT'S PROGRESSING!! I now have 12 lesions on my spinal cord ranging in size from 9mm to 74.7 mm. The doctor is worried because it is progressing so fast and I am terrified of life right now. I really don't know what is worse, the idea that this disease is trying to kill me or the idea that it may not succeed and this is the quality of life I have to look forward to.
Every time I am alone, I find myself having crying fits, which is highly out of character for me. I am not a crying kind of girl. But I can't seem to shake this sinking feeling. Each day this disease seems to get worse and worse. I never even thought MS was even possible until I was diagnosed last October. Then I was told it is relapsing remitting and it will go away and come back. Then I was told it's looking like secondary progressive and now I am being told it is progressing faster than should be possible. Neuro started me on Avonex, but already believes it is not going to work and has already planned to switch me to Tysabri in 6 months.
And I am still not working, and I am at home feeling completely useless. I have no energy to do anything. I am now on Tramadol and Neurontin and Avonex and Ambien. I don't know if it is just the frustration of this stupid disease or the increasing symptoms or self pity or maybe even a side effect of the meds but I can't stop crying. I don't cry when my daughter is here and I don't cry in front of my fiance or my friends and family. And I am alone a lot lately now that my daughter is in school. Which leaves me time to think, and then I can't help thinking how the hell my life has turned into this and I lose it all over again.
What sucks is "You look so good!" yet I feel like I am trapped inside of a torture chamber and I have no way to escape. You can't tell by looking at me that my legs are on fire you can't tell that it feels like my skin is trying to crawl away. You can't tell that I cannot see clearly out of my eye or that it feels like I have three knives sticking straight into my spine. You can't see the torture that my mind goes through when I forget a word, or I forget where I am going or why I walked into this room. You can't seem to comprehend my new phobia of stairs, or daylight, or driving long distances. The dread that washes over me when it's time for bed because I don't know how bad it is going to hurt to try to lay down and I have no idea what new torture my body will invent the next day. You don't get to feel what it's like to hook an IV into your arm and pump yourself full of toxins that make you pray for the mercy of death as you watch your body respond and you gain 9 pounds in 5 days. You don't get to experience the panic that takes over when you get so much as a sinus infection because you know your eyes are going to take the hit. But I LOOK great...when I'm not bursting into tears that is.
The depression is a real bitch. That is one of those side effects they warn you about but you just don't know quite how to prepare for it. And yes, I do realize how much worse it could be. And I am grateful that I can still use my legs, and I can still swallow and I can still get from point A to point B on my own. I do know that it could be so much worse, but that doesn't make it suck any less. That doesn't make the hopelessness fade any faster or the fear subside.
Who knows? Maybe I am just going insane! That is what happens when you obsess over things. I don't think I have spoken to one person with this disease who doesn't obsess over it. It's not something I do on purpose but when you have something attacking your body and you feel the effects of it 24 hours a day you tend to think about it 24 hours a day.
I just felt like venting!
Posted by legzzalot at 11:30 AM
Thursday, August 13, 2009
So it's been a while since I have written. Where to begin..... Well, we moved again. And I cannot get internet access at the new house Thank you verizon!!
Moving caused all of my old symptoms to show up along with a few new symptoms and the fact that ALL of the old problems never went away(all but a few minor ones went away but those few continued to get worse).... the doctor now thinks I am secondary progressive. Wants me on Avonex right away to try to slow the disability and I have another MRI scheduled for tomorrow. Because I have thyroid issues and heart issues already there is a slight chance the Avonex could be fatal. But if this disease continues to progress at the rate that is I am looking at being in a wheelchair in the next year. These are my options. Ignore it and lose more and more functions or try to treat it and hope that it doesn't kill me. AWESOME! So I am a little stressed out which is not helping anything and I am finding myself having crying spells that last from a few minutes to a few hours.
Oh did I mention Avonex causes depression....and I haven't even started the meds yet. In the mean time I am on Neurontin to help stop my skin from crawling right off of my body....and it's not working.
And neither am I. I am still not working. I cannot stare at a computer for more than an hour without triggering the optic neuritis, I cannot stand for more than an hour without my back spasming and my feet and legs feeling like they are on fire and I cannot lift anything over 10 pounds. I have no idea what it is that I am supposed to be doing for a living as every job I have ever had requires at least one of the above mentioned. YET... I am not disabled enough to be disabled in the state of Virginia. But don't stress it makes MS worse.
And to top all of this off my daughter starts school (Kindergarten)in 2 weeks and I have no babysitter out here in the sticks as I don't know anyone and I can't get her on an "as needed" basis with daycare, so her first day of school i get to pick her up early so she can go with me to my neurologist appointment because to reschedule it requires waiting another 3 weeks to get in. I am frustrated and overwhelmed.
On the plus side I finally heard back from Johns Hopkins who sent me all of the required paperwork to schedule an appointment. I will fill that out and see what happens. This year has been a rollercoaster ride and it doesn't look like it is ever going end and I am tired of the hills and sick to my stomach and I really really just want to get off!
Posted by legzzalot at 3:14 PM
Wednesday, May 20, 2009
Let's see, the good news or the bad news first? The bad news is kind of funny so we will start there and end on a happy note.....
Yesterday I managed to pull a bonehead MS move... Falling UP the stairs. Now let's face it, I have never been one to do anything half-assed. Not only did I manage to fall up the stairs, I managed to land on my big toe causing an obviously broken toe and a suspected broken metetarsal too. Which hurts like the devil, but does make a funny story. Especially considering I am just getting over the sprained ankle on the other foot from last weekend.
The diet is going great. I have lost another 3.4 pounds since last week for those who are keeping track that makes 8.4 pounds in the last 3 weeks! I have been craving avocados for the last few days. I have never craved avocados even when I was pregnant, but hey I got 8lbs saying I can eat a few if I want. So that is my update.
No major MS symptoms besides the feeling liek something is touching my back when it is not and the lightning bolts. It doesn't hurt, I can see, i can walk, and I am able to feel my legs so i am still not calling the neuro.
I do NOT regret not trying the Rebif because in general I feel great. And I highly recommend this diet to anyone who wants to try it. Not saying it's for everyone, just saying it seems to be working wonders with me.
Posted by legzzalot at 11:56 AM
Thursday, May 14, 2009
Welcome to the end of week 2. I lost another 2 lbs. I have done great at sticking to the new diet. Except for the dark chocolate chip brownies I made last night. But in all fairness I started working out again this week and DD and I went on a 2 mile hike yesterday and another 2 back and my guilt made me do another hour of yoga last night before bed after I finished all of my ebay listings. Yes, it was 1 AM but I have found I sleep better after an hour of stretching.
Some funny things I have discovered.... Yoga isn't as easy as it used to be and it is going to take a lot of time and effort to get my full balance back. It's also a lot harder to do now that I have a gut and I am not as bendy as I used to be. Yoga used to be my "thing" then I had a kid and a full time job and a hour commute each way and dinner to cook and baths to give and .... you know how it goes.
So in my discovery that yoga isn't as easy as it used to be I found I would benefit greatly from a balance ball. And ode to the wonders of Super Target... The ball I was looking at was $27.99 but then I found the Biggest Loser set with the ball and resistance bands on clearance for $9.98 Can't beat that!
Now let's talk realistic goals. Realistically I would like to tone up, improve my balance and lose no less than 30 lbs. Realistically I will not be able to do that in 2 weeks time it is something I have to stick with. Realistically I would like to be able to make it through my old yoga routine without falling over or getting the shakes like I am now.
The MS updates: I still have the lightning bolts when I bend my head. And a new thing is when i get out of the shower and dry off and hang my towel up it feels like the towel is still rubbing my lower back. This lasts for about 5 minutes. It doesn't hurt it is just annoying and no I am not consulting with my neuro about it.
Overall, I feel better than I have in a year. I am starting to feel like me again and it is so nice to be able to do things again! My daughter and I spend no less than an hour each day doing something fun like going to the park or hiking through the woods or hitting the beach. It is going to suck when school starts and I have to go back to work. But the business although it is doing pretty good still isn't enough to justify not working. I do plan on keeping the business after I go back to work and only plan on working part time. So for now life is good.
I realize this could change at any moment so I am going to live it up as long as I can.
Posted by legzzalot at 7:07 AM
Wednesday, May 6, 2009
Tomorrow marks one week since I started my new diet and became a fish-etarian. I have cut out caffeine except for the ONE cup of coffee I am allowing myself to have in the morning. This was a HUGE step for me. Before I would drink no less than 4 cups of coffee and probably 4-6 glasses of super sweet Iced Tea. And any trip to the gas station warranted a Pepsi.
I force myself to eat breakfast now. I don't eat eggs, haven't since I was a kid and that is not changing now. Breakfast is pretty easy, a bagel and cream cheese or one of my many varieties of fruit smoothies with yogurt, and my cup of coffee. Followed of course by my 8 oz of aloe powder/ water mix which I normally use to wash down the first of my three part vitamin ritual. (Omegs 3-6-9, B12, Selenium)
Lunch is raw veggies, normally a salad which I use a variety of things in to create different kind and flavors. Yesterday was Spinach with mushroom, tomato and onion. Today probably citrus asparagus mix with apples. Followed by part two of the vitamins (Omega 3-6-9, Vit C, Zinc, Calcium).
Dinner is the only time I eat meat and by meat I mean fish, maybe chicken. If I eat meat at all. Last night I made the BEST manacotti with spinach, mushroom, onions, zucinni, cheese and topped with creamy pesto basil sauce. I also have some kind of salad with dinner as I am increasing my veggie intake. Again with the vitamins (Omega 3-6-9).
I also keep an herbal tea concoction in the fridge which I drink throughout the day. Green tea, Chamomile,Elder Flower, Yarrow Flower, Peppermint, Rosehip, Cinnamon, Ginger, Safflower, Licorice, mixed with Honey. Which has replaced my Iced Tea. yes it's a lot of stuff, but really it's only 4 different kinds of teat that I combine when I make it.
I have also increased my water intake, forcing myself to drink those 8 glasses a day. And I snack on fruits with cheese or yogurt when I want something sweet.
The lightning bolts when bending my head are still here but barely noticeable. I have actually increased my food intake I am eating a lot more than I used to... but I lost 3 pounds in the last week. None of the other MS symptoms are back. I feel more energetic, which could just be the psychological effect of putting good stuff in my body. And the one surprising thing... my face is clearing up! I have been having breakouts since my first round of IVSM. I feel amazing.
The only downside is that I am still cooking normal foods for my daughter and fiance. He doesn't like fish, she doesn't like anything with spices so she won't eat my fish.
Posted by legzzalot at 9:29 AM
Friday, May 1, 2009
What happens when you have some random disease that keeps kicking your butt and your best friend is a nutritionist? Well, eventually you turn to them for help. Now I have followed the research on the gluten/dairy free diets. In theory this is a great idea. But in the real world not so much. I mean is life worth living without pasta and cheese?? Not in my house it is not. When I get stressed out, I make bread. Sometimes I make cheese filled bread. And no, I am unwilling to give these things up.
I am willing to make a few changes. I was even convinced to start drinking aloe juice. I have replaced my giant bag of medications with a giant bag of vitamins and my tea drawer is now stocked full of teas and herbs as the way it used to be before I was diagnosed with the MonSter.
I have decided to go back to a mostly vegetarian diet. I didn't eat meat for 3 years. I was far from vegan, like I said I like my cheese too much. Note that I said mostly vegetarian diet. I don't see myself going back to strictly veggies and fruits. But with summertime approaching and the abundant sources of fresh fruits and veggies I see no reason not to center my diet in this department.
I am doing this for two reasons. I want to lose weight and I want to feel better. When I gave up meat before it was because my stepfather had cows and I became attached to these cows, I fed them and pet them and named them. One day my favorite one was sent to be slaughtered and that is when I gave up meat. Obviously I got over this and went back to thick juicy steaks. I have also gained a lot of weight since then and with the added weight and now the MS crap I just don't feel healthy. It is time to make a change and since I am refusing the Rebif for now I need to find a better alternative.
I did discover something last night that I thought I would share. You know what helps build myelin? Omega fatty acids. Yes, these too have been incorporated into the diet.
And my little girl turned 5 today! She will be starting kindergarten this year. Where does the time go?
Posted by legzzalot at 7:09 AM
Monday, April 27, 2009
Well, it has been an interesting couple of weeks. Seems they messed up MRI #6 so I got to go back in this morning for a retake... yeah that makes #7. Wasn't so bad though they got me in and out pretty quick.
Yesterday was my Darling Daughter's birthday party. We all had a great time, my house is trashed I will be spending all day cleaning up but it was worth it. The whole family came out, even the adopted/extended family. My ankles started protesting last night since I was on my feet all day.
So here is the deal.... my vision has returned to normal, I have no numb spots, no more lightening bolts down my spine, no more back spasms, I am actually sleeping at night time, and I have not been on ANY meds in over two weeks. I feel like I have my body back. Other people are noticing too. There is color to my face again I can walk in the middle of my rooms where before I was always within reaching distance of a wall. My daughter and I are enjoying the warm weather and playing outside and walking and I can see/feel to drive. I no longer feel like a prisoner in my own house.
I spoke to the pharmacist about the Rebif. He tells me that only 3% of people who take it develop thyroid disorders. What about the people who have already been diagnosed with thyroid problems?? How does it effect you then? For that I am told to consult my neurologist before starting the drug. The more I think about it the less I like the idea of being on this drug. So I have made the decision not to take it, which is something the neuro and I will have to discuss when I follow up with her next week.
One other note... The latest MRI showed the giant lesion in my brain is active again. Not that it really makes any difference seeing as there is no drug to effectively treat it or stop it from growing.
For now I have decided the doctors know plenty about this disease but it is true that it effects each person differently so when it comes to my individual case they are clueless. Symptoms were unbearable before I started the Copaxone... the new symptoms and increased intensity of all symptoms I got from the Copaxone and the steroids was enough to make me want to give up. Had I known how much worse it would get I would have chosen to live with the symptoms I had to begin with. You see the symptoms were unbearable when i started the Copaxone because I had no idea they could get worse.
Hindsight is 20/20 and I can say the "unbearable" symptoms that started all of this was nothing compared to the person I became over the 4 months I was pumping my body full of useless medications that did nothing but make it worse.
I also know that this is not a disease that is just going to go away and to think I will never be on meds again is ridiculous to say the least. I know that it is going to come back I know that it could be worse than ever before. But I also know that for now, I need to do what I feel is best and that does not involve injecting myself with a drug that will make me feel sick.
Posted by legzzalot at 9:36 AM
Wednesday, April 22, 2009
Man I am starting to fear walking into my kitchen because I am scared the utensils will start flying at me! This is MRI #6 since October. This time it was to look at my optic nerves and my brain. Doctor is concerned now about the ON which is of course going away now that I have stopped the Copaxone. I feel like me again!
The neuro wants me to start Rebif.... I am having a really hard time with this decision. I am feeling so much better now that I have stopped all of the meds and now she wants me to start another one which has had nothing but poor results to go along with the negative side effects. And the side effects are astounding! I really don't think I want to put my body through all that for something that has a 35% success rate. If they printed that it has a 65% failure rate nobody in their right mind would try it.
So I am looking into more holistic approaches to this disease. You see before I had MS I was able to treat any illness or insomnia or ache with a simple tea therapy. The only time I ever went to the doctor was when I had strep throat. It's the only thing I couldn't cure on my own. Even the majority of my pregnancy was treated herbally.
I don't know. I ramble. But there has to be a better option.
Posted by legzzalot at 7:22 PM
Tuesday, April 14, 2009
What bad could come from an MRI you ask me? Normally I would tell you nothing. It's the least painful procedure I have ever had at a hospital. Yeah, I get a little tensed up after more than an hour in the machine, but it's really not that bad.
My fiance on the other hand, tells a different story. He went in to have an MRI of his leg done. Should have been a simple thing. After waiting for hours for the Army doctor to get him in the machine, he was finally surfing the tube. Mind you, he has a steel rod in this leg from a previous injury. He comes home in pain and says his throat hurts.
So begins the case of walking pneumonia. His MRI was on a Saturday evening and by Sunday afternoon we were in the car on the way to the emergency room. Two EKGs, a chest X-Ray, Bloodwork, mouth swabs, nasal swabs.... We were there for 6 hours! He didn't care they had given him morphine for the pain, he was out like a light. I was finally able to take him home with a diagnosis of bronchitis or walking pneumonia and a z-pack.
Of course by Monday night I was getting the yucks and by Tuesday morning I was a mess. I ended up calling my mom to come take me to the doctor and take my DD to her dad's house. Hey wouldn't you know? I have walking pneumonia says the doctor. Awesome! I also had a fever of 103 and wanted to kill any living being that came within a 200 yard radius of me.
Fortunately the antibiotics seems to be working, even thought I am still not "cured" of the crud. During my fever induced psychosis I managed to skip a few doses of my Copaxone. I was about to inject myself one day and decided that my body had enough stuff going on and it didn't need anything else to fight it off. I made the decision to stop the Copaxone until after I finished the antibiotics. Tomorrow is my last day of the antibiotics and today is my follow up appointment with my neuro. Boy is she going to be happy when I tell her I stopped taking the Copaxone and I don't intent to start again.
Since stopping the C I have regained feeling in my feet, I no longer have lightening bolts flashing down my spine every time I bend my head. I can lay in my bed without my back spasming, and I can actually fall asleep before 3 AM. I still have numb spots in my legs, and I am still having Optic Neuritis issues, but I am feeling better than I have in months. Now I know this could be a coincidence that after eight months this "flare-up" is finally subsiding but I don't think so. I think it was the copaxone making it worse.
Posted by legzzalot at 4:12 AM
Wednesday, April 8, 2009
Actually I found 2 perks.
One I got a really cool t-shirt. Reminded me of the fight I had with my ex when he told me "well, you don't look sick" My response of course being that he didn't look like a Moron, but looks CAN be deceiving. I was playing online the other night and ran across a T-shirt on zazzle that says "I may not look sick but you should see my MRI." For some reason at 4 a.m. this gave me a case of the insomniac giggles and I decided I had to have it. I even customized it and added a pic of one of my MRIs it's a really cool shirt that my mom thinks is completely sadistic, so see even more oolness points there.
And perk number two... Well, not so much a perk as a ha ha I win! My fiance went in to have an MRI on his leg (you know, the one with the steel rod in it) Can't imagin why that hurt so bad. So he comes home and proceeds to get sick, and sicker and sicker until Sunday afternoon when i put him in the car and drove to the ER. An IV of morphine, 6 hours and about 20 tests later... He either has really bad bronchitis or walking pneumonia. Well wouldn't you know it started kicking my butt on Monday. I ended up at the doctors office on Tuesday begging for death to claim me now before it gets any worse. yes, me with a 103 fever makes a sick pathetic girl. He gives me a different antibiotic than the fiance and he decided another course of oral steroids would be in order. well it seems to be doing the trick aside from a sore throat i feel fine. Poor fiance can't get out of bed without getting dizzy. He is headed back to the Dr tomorrow. So ha! Sucker you give me your crap and I will get over it before you.
So yes those are my two perks... better drugs and t shirt.
Posted by legzzalot at 5:15 PM
Thursday, March 26, 2009
I got the results of my MRI. As i suspected they were not good. The radiologist used the term progressing three times and considering it has only been 5 months since my last MRI it is a little scary and I am a little freaked out.
Started Baclofen to help with the back problems. So far no luck it works for about 20 minutes then wears off. Did I mention my body hates me??
I emailed the head of MS studies at Johns' Hopkins today, something I have been putting off for some reason and today I discovered that reason. I was waiting for more time to pass to see which direction the disease would take with the treatments we had tried. I sent him what seemed like my entire life story and begged him for help. I am waiting to hear back from him.
I am also waiting for my neurologist to come back from vacation. And I am waiting on the repair man to come fix my sink and my light in the kitchen. Seems my entire life has become one big game of waiting lately. I am not a patient person, waiting makes me over analyze any and everything.
Back to my title, while I was on the JH webpage I managed to find the page to sign up to be an egg donor. I am wondering if I can donate eggs for research, or if they would even want my eggs seeing as I have the whole MS monster attacking me right now. But, how great would it be if I could donate my eggs for something useful that could potentially save lives as opposed to sitting here mourning the fact that I am not going to have any more children? I made this decision a while ago, that if I am able to do it, i will. Even if it doesn't help me, if it can help someone else it seems worth it.
Posted by legzzalot at 3:18 PM
Wednesday, March 25, 2009
So I have pretty much been banned from NT. Which sucks and was the one place I actually found some sort of balance. Unfortunately there is a certain moderator who has it out for me, and no it's not all in my head.
I even posted a goodbye to everyone telling them they can find me on myspace or yahoo and that message was also yanked by said moderator. Apparently I am not allowed to say that the reason I am leaving is because I am tired of having my hand slapped every time I post something. It seems I am too offensive for the MS community.
So for those of you still allowed to post on NT, if you could please pass the word I am still around on yahoo. Legzzalot there too. Same name on myspace.
Posted by legzzalot at 7:14 AM
Saturday, March 21, 2009
Spent two days getting new MRIs. Resulting in massive bruises and more blown veins. You know, it's kind of funny. When I was in High School I really got into body piercings. I had 3 holes in each ear, an eye brow ring, a nose ring, cartlidge pierced on one ear, a belly button ring and even the little skin between your thumb and forefinger. Of course I had the platinum blonde spikey hair and neon pink bangs with cotton candy pink highlights throughout to go with all my metal. When I turned 18, I got a tattoo. Yup, I thought I was a real badass!
Now I give myself daily injections and every time I so much as look at a nurse I blow a vein somewhere. Nowadays if I want to rebel and be hardcore I leave my house without my giant bag of prescriptions. Driving to the grocery store is now an adventure and the highlight of the week. I find myself agreeing with the republicans and wanted to hold teenage boys down and cut their hair, and buy them pants that fit!
Last night was a fun adventure. My back started killing me. And by killing me I mean I can feel my spinal cord rubbing against my spine. So I decided to bite the bullet and take the percocet. Which I hate doing, I have always hated drugs and up until being diagnosed we didn't so much as own a bottle of asprin. But last night I simply couldn't take anymore pain. Percocet is a brilliant idea in theory.... unless in a pain riddled half blind from the Optic Neuritis moment of insanity you take a water pill instead.
I realized this mistake about an hour later as i got up to pee for the 5th time. It is now 3:00 in the afternoon and I am still awake. I think the water pill finally wore off. I moved my laptop upstairs to my bed and have been trying desperately to fall asleep since 11:00 this morning.
2 percocets and 4 ibuprofins later... my stomach is doing somersaults and I am having more hot flashes than a 50 yr old woman.... And my back is still spasming. I get my MRI pics monday. Doctor has decided we are going to try the IVIG since the steroids only managed to make me sick and aggravate the symptoms I was having.
Oh yeah I am adding pics from the two IVs they did for the MRI. So you can imagine the thrill I am experiencing at the idea of anoter 5 days of IVs every month.
Posted by legzzalot at 11:39 AM
Wednesday, March 18, 2009
Hi everyone! I know I am MIA again. I promise I am not ignoring everyone. I did my 5 days of IVSM and I have been tying to recover ever since.
The good news is this round wasn't as bad as the last one. Doing it at home was a lot easier, but I did have some issues that will probably prevent me from doing it at home again. The bad news is, all of my symptoms are worse. I have been in my house for a week and today was the first time I was home without a babysitter.
This one unfortunately is going to be short I am trying to type with one eye closed and squinting out of the other. My right eye decided to go kuput since it's been over compensating for the left one since Dec. Balance is actually worse, but I was able to high five my best friend the other night in celebration of the fact I have not fallen down the stairs in over a week.
I even got to deal with my old company for two days while I was in the midst of steroid rages. I paid my Cobra payment and THEY didn't pay the insurance premiums. (I am not surprised) They have a habit of not paying their bills, I am so glad I don't work there anymore. Took me threatening a lawsuit and about 30 phone calls to get all of that settled.
Tomorrow I have the back to back MRI scheduled for the spine pictures and then I get to go back Friday for the brain. Now seeing as I cannot see clearly or feel the pedals to drive, I get to rely on my mother again, which makes me feel a little pathetic, but I am glad she is here.
Ok, I am going to go get some sleep...Well you know what I mean, I'm gonna go drug myself with enough muscle relaxers to tranquilze a horse and hope it stops the spasming long enough for me to get the 3 hours of sleep I need to prevent me from becoming dillusional.
Posted by legzzalot at 8:35 PM
Thursday, March 12, 2009
I am starting another 5 days of IVSM today. Which reminded me to go to the store before the nurse gets here and pick up all of the things I remember needing from the last time I did this. And then I thought I should share this for anyone who is about to go on IVSM. These are things my doctor didn't tell me I needed.
1. Gatorade! Lots and lots of gatorade!You will need all of the electrolytes you can get.
2. Hershey's chocolate bars!Big ones! Why? Because the IVSM causes your blood sugar to go haywire and they best solution is a little bit of chocolate to help regulate it.
3. Cranberry juice. The last time I was on IVSM I ended up on water pills because I was retaining fluid so bad. i gained 7 lbs in 3 days! You need to be able to pee to flush some of this out.
4. Mints. IVSM leaves a horrible taste in your mouth. The mints help you to make it thru the infusion without being nauseated.
5. True Lime water flavoring packets. These are very strong and normally don't taste very good. If you are not hydrated it increases your chances of blowing a vein. My last 5 day round resulted in 6 blown veins. I couldn't drink water because of the taste from the IVSM. The true lime is very strong and helped to override that taste so that I could drink water.
6. Excedrin. Migraines normally hit me when my blood sugar starts spiking and falling. Excedrin helps.
7. Make sure all of your prescriptions are refilled. You are not going to want to leave your house to go get medications if you run out.
8. Movies. I rented a bunch of movies this morning because I know I am going to be home alone and not feeling like moving.
9. Fruit, Veggie, and Cheese trays. I buy the little ones. It helps to be able to eat a little bit every few hours. These are very filling, they help settle your stomach and regulate your blood sugar. they are also a lot more nutritious than popcorn or candy while you are zoned out watching movies.
I am sure there are more things to add to the list, but these are the ones I remembered today. And if anyone else has any suggestions please feel free to comment. Input is always welcome.
Posted by legzzalot at 8:54 AM
Wednesday, March 11, 2009
And I get to look forward to 5 days if IVSM again! BLAH! And I am scheduled for next
Thursday for spinal MRI and I get to go back Friday for another brain MRI. She wants to see how many new lesions are there and/or if the existing ones are growing. She did use the p word today. Fortunately she's not ready to sign that death warrant just yet.
She did agree that my last doctor was a moron for giving my the medrol dose pack and hoping it fixed the Optic Neuritis, and for not doing anything else when two tries with it didn't work. Or, as she put it "like putting a band aid over a bullet wound" I am seeing 60/80 out of my left eye....with my contacts in! That's a little freaky. I can see perfectly out of my right eye.
The good news is, I should be able to do the IVSM at home this time instead of having to drive to the hospital every day, go thru registration, and go to another building for IV therapy where they still managed to blow up all my veins.
The new doc seems pretty cool, even if she is a lot younger than expected. I don't know why I have a prejudice against young doctors, I guess I see them as inexperienced. But on the plus side she is not too far out of med school so hopefully she is a little more up to date than Dr. Idunnohaveanotherpainpill.
Oh and the weird electric current going down my spine when i bend my head is not me going crazy it is apparently a rather ordinary symptom in most MS patients. See I'm not as crazy as I look.
We are taking bets on the MRI results. So far the pot is up to $50. I am betting there are 5 new lesions. Some bet more, some bet less (they obviously have no idea how this disease works) and one person is betting no change. Let's see who's right.
Posted by legzzalot at 1:42 PM
Tuesday, March 10, 2009
Why you dare ask would I approach this horrifying topic? Because it is 4:30 in the morning, I am wide awake and once again this disease has found a way to make me miserable.
Somewhere along the trip from Virginia to the far reaches of Kentucky my legs decided being numb wasn't enough and they needed some company. Now my butt, both hips, two fingers on my right hand and my nether regions have joined the numbness wagon.
You have to love the irony here. I sell sex toys for a living..... it's kind of like an impotent man selling condoms...it's downright disturbing!
One lesson I learned over the years in past relationships was that as a woman we have the ability to do many things. We can create life, we can have multiple orgasms, we can bleed for 7 days and not die, and we can even fake orgasms. The latter is a very bad trait we inherit as women. I have learned the hard way why women should not do this. Think about it. Men are simple creatures. They need direction. If you are faking an orgasm when he is obviously not pleasing you he will interpret this as a job well done and he will continue the unhappy maneuvers.
My fiance and I are very open to one another, and very honest with each other. Therefore, I choose not to fake orgasms with him. If something he is doing is not working, I find it best to let him know so that we can do something else.
Now here is the problem. I have NO feeling in that area right now. This happened once before. We tried, it didn't work. We stopped. In fact, I think this was one of the few times he has seen me cry. Yes, I cried. It's a horrible feeling when you lose your feeling.
I know I am not the only one who has gone through this so I thought it was time to share this story. Ok, so being the moral young lady I am I will tell you the moral of this story: Faking orgasms is bad, numbness in your nether regions is worse.
Posted by legzzalot at 1:20 AM
Monday, March 2, 2009
You know back around Thanksgiving when I was at my mom's house trying to sweat through the withdrawals from the last round I remember making a solemn vow no matter how bad it gets I am never doing IVSM again! NEVER EVER EVER AGAIN!!
You can say my last round didn't go so well. At the end of day one I woke up at 3 AM feeling like superman my powers were restored! I could feel my feet, I could feel my nether regions, life was good.
Day two unfortunately was not so thrilling. I still had the horrible taste in my mouth that one gets with solumedrol. But I arrived optimistic. After the nurse blew another 2 veins trying to insert the IV we finally got it rolling. The motion sickness kicked in as we were leaving the hospital. Then the migraine hit when we got home and I found myself unwilling to budge from my somewhat comfortable position on the sofa.
Day three was what I considered the tie breaker. Round one was a victory round two I lost to a drug. Day three I had my butt handed to me on a silver platter with the word "LOSER" engraved in the middle. By this point I was sick as a dog and getting worse by the hour. I also managed to gain seven pounds in 3 days which I believe was all fluid and it was all collecting in my face.
Day four almost didn't happen. I refused to go get more. I stomped my feet and whined and screamed until my neuro finally agreed to see me before I went in for more. He takes on look at me, and prescribes sleeping pills and water pills to make me pee before sending me on my merry little way to go get another IV. Another blown vein...this makes 5 in 4 days. What can I say, my body doesn't like needles. I came home and took both the sleeping pills and the water pill. An hour later as i am in zombie mode on the couch I realize this was a bad idea. I am exhausted I want to sleep but now I have to pee every five minutes. I swear to you I would go to the bathroom and by the time I made it back into the living room, I had to go again. This was also the night I wanted to kill my fiance for bringing home the wrong kind of chicken. It was a huge fight. Looking back I may have over reacted just a tad.
Day five was the absolute worse. Day five was also moving day. You see five days after being diagnosed and the day before my birthday we found out we were moving. Seems the landlord was collecting money but not paying his mortgage and he was foreclosed on. Instead of telling us this was happening he continued to fill our heads with silly notions that we would be able to buy the house once our lease was up. And we had continued to make repair after repair. The call from the bank letting us know we had less than 3 weeks to move was a little disturbing. Now mind you my spinal cord is swollen and I am under strict orders not to lift anything over 20 lbs. The really fun part to this was that we could not get into the new place until the Monday after Thanksgiving, which meant putting everything in storage and heading to my mom's for five days. All of which my poor fiance did by himself while I laid there helpless and miserable. This also meant I had to drive my car 50 miles to get it to moms house. It was the longest trip I have ever been on. And at the time I was making that commute every day. My mom lived less than two miles from where I worked.
Two days later after all was said and done and I had a total of 6 blown veins and the meds finally started to work their way out of my body I was feeling a little better. My back started spasming that night and I thought it was because I was attempting to sleep in a water bed. But every time I would lay down my back would got berserk. I finally managed to fall asleep only to wake up soaking wet. At first I thought the bed had busted. Then I realized it was sweat. Enough to make my clothes completely soaked. I get up, jump in the shower and change my clothes and my bed stuff. In the five minutes it took to change the bedding out I was soaked again.And now I am shaking. So I call the neuro... who tells me it's withdrawals and I need to sweat it out. Three days later I was somewhat back to normal.
So now you understand how desperate I am to fix this crap. I am about to go in and ask to go through this again, because I cannot find any other options. Which means sending my daughter away again until it is all over. This is not a side of me that I want her to see. Plus this time I think I am going to let them leave the IV in, even though that didn't work the last time. We will see.
Oh by the way, yes I added music. I needed to find a way to entertain myself...and others. Of course you can always go over to the player and hit pause if you don't want to hear it. I know I know it's all girly. Just didn't think the Rob Zombie fit into the page theme.
Posted by legzzalot at 7:54 PM
Sunday, March 1, 2009
Spring cleaning time will soon be approaching and along with the housework comes time for some soul cleansing. I thought I would take the opportunity to share a few insights about MS. Things that I have learned and things I should be grateful for.
I have learned that my body will do what it wants to no matter how much I fight it. I am grateful that I have a supportive family to help me.
I have learned that our next house will be one story. I am tired of falling down the stairs! I am grateful to still feel the pain of my a$$ hitting the stairs because it means I still have feeling there.
I have learned that worrying over what may happen next week only makes you sick this week. I am grateful that I worry, it means I still have something to lose.
I have learned that one side effect of this disease the doctors don't warn you about is what I call The Murphey's Law Effect- anything that can go wrong will go wrong and there is no foolproof plan. I am grateful that I was raised to be a smartass because I can find humor in the midst of the chaos.
I have learned that I should not tell my mother when things begin to fail on my body as she feels the need to call me every 30 minutes to ask how I am feeling. I am grateful my mother is still around to pester me every day all day.
I have learned what Optic Neuritis is. I really can't think of much to be grateful on with that one other than it is only in one eye for now.
I have learned that sex is impossible when your nether regions are numb. I am grateful the first round of steroids fixed that problem.
I have learned that electric shocks going down your spine when you bend your head doesn't hurt. I am grateful for the patches of numbness it makes the daily shots of copaxone a lot more tolerable.
I have learned not to take life too seriously, you will never make it out alive. I am grateful to still be here to watch my daughter grow.
Posted by legzzalot at 6:08 PM
Monday, February 16, 2009
It's been a while since I have blogged on here. For that I am sorry. I have been locked in my house for the last few weeks battling the random symptoms that come along with this disease. I did start Copaxone back in the beginning of Jan but have yet to see any improvement. If at all possible I swear it's been going downhill lately. The numb legs are back, my left eye has been blurry since December, we have done 3 rounds or oral steroids. There was a day that I was in so much pain in my spine I ended up calling my mom to drive 50 miles to come get me and take me to the ER b/c my neuro couldn't see me. Did another round with the oral steroids which helped the back pain, but nothing else.
I have also started my own company out of my house which requires a LOT more time and energy than I expected but it is finally coming together. I now have a website, 3 different web stores, and the ebay auctions on top of it all. But I have finally turned a profit. Not enough to justify staying home with no job, but enough to make me realize that I CAN do this. And hopefully in a few months I will be able to justify not working elsewhere. I LOVE not having to answer to anyone else and I LOVE that all of my work is done on-line and I don't have to answer phone calls and I don't have to deal with people if I don't want to.
(Insert shameful advertising here ---->>> www.alonetimepleasures.com )
My fiance gave me the best present anyone with this disease can get. He bought me a king sized pillow top bed for Valentine's Day. He figured thanks to this cruddy disease I have been spending more time in bed, and I may as well be comfy.
Posted by legzzalot at 5:59 PM
Tuesday, January 6, 2009
Well thanks to MS I don't think that I want to find another full time job. I have decided to make the investment in myself and start my own business. Here's to hoping I can make it work!
Yes, sex toys!
Posted by legzzalot at 5:57 PM
Friday, January 2, 2009
You have MS! Yes, it is an incurable disease, no we don't know what causes it, and all treatment options are pretty much going to be a guess from here on out. For a 27 year old, this diagnosis was a death sentence. I have found an incredible group of people who are living with this disease and going through the same issues as I am. I have also been introduced to people who's symptoms are a lot worse than mine and it makes me grateful for what I have.
I have been keeping a journal of thoughts and problems I am having with this disease, and I have been selfishly holding on to it. most of it is just bitter complaining about this disease and my body refusing to work properly or notes to ask the doctor. I have also learned a lot about this disease and different treatment options along the way and I thought I might be able to help someone else by sharing my experiences.
If you have this disease, then you already know why I chose the title MSucks. Because it really does. It does help to have someone to talk to who has been through this. your family and your friends try to be there to support you but they have no idea how to help you and they have no idea what your body is really going through. they don't understand the fatigue and the frustration when your legs decide not to work. They will never understand the terror when your body doesn't respond to the meds and you don't know if this symptom is ever going away.
Like I said, I have been very fortunate to connect to a world of people who battle this disease every day. One of my favorite websites which has become a daily source of both information but also entertainment and understanding is http://neurotalk.psychcentral.com/
Ok now that introductions are over, I will start uploading my personal information to share. If it helps one person to realize how this disease effects you or if it helps one person not to feel alone in this battle then my job is done.