If I believed in reincarnation, I would think that I must have been the most evil person in the world to deserve what I've had to deal with so far in this life. I did some of this to myself, by choosing to stay blissfully ignorant for so long. Some was done to me without me deserving it or asking for it. I have gone from livid, to defeated, to numb and back again! but what's the point of being mad. Anger is just a mask for fear and frustration, so I might as well take the mask off and flaunt my inadequacies. This my friends is how my ill-fated journey began....My MS treatments started in '99 with a horrible neurologist that couldn't care less about his patients, great start! But sadly enough it has been my experience that he behaved like the majority of MS neurologist have through the years, with me at least. I started with Avonex, a once a week intra-muscular injection (into the muscle) that hurt like a mother, and gave me horrible flu-like side effects nearly every week. Imagine having the flu, complete with fever, chills, body ache and headache weekly!! It was awesome, as you may imagine. I suffered through this torture for 2 whole years, never knowing that an exacerbation, or attack did not happen ONLY when all the symptoms piled up together, like they did when I was first diagnosed. Oh no, just 1 minor symptom can constitute an attack. A fact which would have been fabulous for my neuro to share with me, especially since I was completely ignorant about the very disease that I was just diagnosed with! But alas I stayed with Avonex for 2 years, all the while having attack after attack and not even knowing it.
I switched neurologists after that fiasco and also changed my treatment to Copaxone, a daily sub-cutaneous (under the skin) injection. By this point I had 8 sclerosis in my brain (scars or lesions). This medicine was a welcomed change since the side effects were minimal compared to Avonex. I did have painful sight reactions though (bruised, red, swollen like a golf ball under my skin). Needless to say, I couldn't wear short sleeve shirts or shorts without people thinking I was a battered spouse!! Ha! Pretty sure that if I would have continued with this treatment that my skin would have just rotted off!! lol The first 4 months were heaven in comparison to the 1st 2 years of my diagnosis, no attacks, feeling much better simply 'cause I wasn't suffering by stabbing myself in the muscle, and the painful flu symptoms. But after that the attacks started once again, and with it came persistent dizziness, headaches, and of course the evil fatigue began around that time too :(.
The attacks continued every few months so the Dr. again switched my meds to Rebif, a much stronger medication. Rebif is like Avonex but the symptoms are surprisingly a bit less since Rebif stays in the body the whole week vs the body having to get used to Avonex over and over. They're administered differently (sub-cutaneous instead of intra-muscular, and 3 times a week for the Rebif vs. once a week for Avonex). Like the others, this worked for me for a few months but then the attacks started creeping back, and along with them, more lesions. I was on Rebif for 6 years, in that time I moved from Atlanta to Houston and got another Neuro, this one was the coldest of them all! He took me off all the added crap that the last neuro had given me to treat the symptoms though, like Neurontin (usually for epileptics - meant to treat dizziness); methotrexate (chemotherapy!- meant to help thwart the attacks); Effexor (usually for depression-also meant to treat dizziness). It's like these dudes were flying blind!! No wonder I was so bloody sick for so long. No one is meant to take chemotherapy pills, even in small doses, for any extended period of time...again a fact that might have been helpful for the doc to share with me!! Instead I suffered for a couple of years throwing up every week or twice a week. FML this was definitely NOT living! I know what you're thinking "what kind of fool stays on chemotherapy and doesn't even question this?" I was SO clueless for believing in my Dr's for so long and thinking that they knew better! :(
For my many attacks the doctors first prescribed Solu-Medrol which is the go-to IV steroid to treat MS attacks. I also tried IVIG (Intravenous Immunoglobulin) which is made from human plasma, thank GOD I didn't get Aids or Hepatitis! This gem did NOTHING for me and cost the insurance $20,000 for 5 days of painful 8 hour treatments, man did it make my head explode, so much so that they had to put me to sleep w/ Benadryl just so I wouldn't feel so much pain. Then seemingly, a light at the end of the tunnel, Prednisone, an oral steroid, no more painful IV treatments. But surprise, surprise it also did nothing for me, only made my knee joints painful, exhausted me, gave me infections, sleepless nights, made me almost diabetic and the list goes on. My last IV steroid treatment was May '09. This exhausted me SO much that I couldn't even shower on my own, change clothes without resting in between or do anything other than sit and feel sorry for myself. By this point I was facing the attractive options I detailed in my last post and knew that I couldn't allow myself to get worse by letting these Magoo doctors lead me around. It was easy for them to prescribe medicines like they were giving out candy, but I was the one having to deal with the consequences. By the time I had over 30 lesions in my brain, heat sensitivity and facing a change to yet another even more horrible "treatment" I realized I needed to take control of my life.
That's when I finally had enough with the pain and uncertainty that seemed to be all that the neurologists could offer me, and that's when my CRAB-drug free life began. That's a term used for Copaxone, Rebif, Avonex, and Betaseron, the latter of which was the only med I didn't try. Re-reading this brings tears to my eyes, just seeing how much I endured and how long I had to suffer unnecessarily before wising up. As if MS isn't painful enough on its own right?!
Stay tuned to hear about my life changing alternatives and becoming a "hippie" as I am sometimes called....no I do NOT smell of patchouli and I DO wear deodorant!! ;-) Sorry so long but there was much to say.
8 comments:
Gisselle, this made me cry. God do I ever understand the constant up and down of stupid neurologists - we've been through them all with Whitney's epilepsy. It makes me so angry when I think about how they play with people's lives! If it were THEIR lives, would they act so carelessly?! NO. ARGH!
I'm SO proud of you for sharing your MS story! I'm finding it incredibly informational; and I THANK YOU for opening my eyes to this condition and how it affects your and others lives. You are, indeed, a strong, beautiful lady! :-)
I didn't want to make you sad Mandie, this is my unfortunate truth which can be downright sad. :( I'm sorry that your sis has to deal with the mess of neurologists too, I think that to become a neurologist they have to pass the "desensetize test", if they feel nothing then they can be neurologists, lucky us. :( I agree with you completely, I know it's wrong but sometimes I wish that God would give them a glimpse of what our life is and see if they're as cruel after that!
Thank you for your sweet, encouraging words Mandie, it means a lot to me. :)
I've been on Copaxone for two years, had hard red lumps under my skin which made me feel like I was in a horror movie. I've tried the Swank Diet and eliminated fat, which makes me lightheaded. I've tried a few things, had a few failures, but have never been subjected to the roller coaster you have been on. It is very sad to hear how much pain you have suffered and how the drugs may have contributed to the disease, not helped you. You have been hit harder than many with MS, myself included, but you still have such optimism and fortitude, and been so sharing of ideas for treatment with myself and my sister. God Bless You, and I hope in the next life or the hereafter, you get what you deserve, which is an absence of pain, nausea, and lesions. Big hugs, my new friend.
Aww thank you SO much Adriana, that made me cry. :) I'm blaming it on aunt Flo! lol This life has not been kind to me, the only thing I can control though, is my attitude and the way I choose to allow this to affect me. It's a bit empowering to know that if I don't let this disease get me down, that it won't...hasn't so far at least, here's hoping I don't have to eat my words one day!! Muchos hugs to you 2 :)
Oh, Gisselle. I knew you had MS, but didn't realize you were in so much pain through the years. Most of the time this has gone on I haven't seen you as we were out of highschool and on to our new adventures and different states. I think of you often as you were one of my best friends in middle school and a good friend still. I miss you terribly and feel awful that you had to go through this. My cancer scare pales in comparison to what you have gone through. I was fortunate that a surgery took care of it and it hasn't come back. I will pray that they find a cure for it or at least something that helps and won't cause more discomfort then the illness itself.
Thank you so much for your sweet words Stacie. Your cancer scare was not a little thing, I was definitely scared for you through that time and I'm SO glad you are cancer free now. :) :) It's true we lost touch and didn't reconnect until FB gave us the opportunity to find each other again. To tell you the truth I didn't realize all that I'd been through until I started reading what I wrote. And even though sometimes it DOES get to be too much and I do break down, God's always there to pick me back up and help me go on. I do have 1 thing that might be the answer to my prayers, not a cure but the closest we got right now. I'm going to talk about it on my next post, so keep coming back to check ok? :)
prima, que lindo y que interesante que hayas decidido compartir esas experiencias con más gente. te quiero ♥
Gracias prima, queria compartir esto con mi familia y amigos para que sepan todo lo que a pasado en los ultimos años. Ojala que el futuro sea mejor quel pasado a sido. Uno nada mas puede rezar que asi sea. Te quiero! :)
Post a Comment