I need to step away.
Perhaps get off of my soapbox. But that would be absolutely, positively no fun.
Growing up I was the one who kept their opinions to their self. I had many, trust me I had many. However I just didn’t like to rock the boat. I reserved that for my siblings who had zero issue with rocking the proverbial boat at home. So I stayed quiet and out of their way.
Years later of course I found my voice, this coincided with becoming a parent, going through a divorce, dating again(not recommended) then remarrying(though I guess you have to date to do this part) and having a later in life kid. During this time I realized that I could not keep quiet about what I believed or thought(nor should I have). This of course resulted in me being labeled “nice with a side of bitchy”. Hmmm. I prefer to think of it as “no longer your flipping doormat”.
I’m applying the latter to most everything in my life. The down side is that maybe at times I’ve become a bit too self-righteous for my own good. I often don’t like to back away from certain subjects when I know that my point needs to be taken more serious. Or when I think people aren’t being objective about something and are looking at it from a hard angle rather then from all angles.
The one subject that really has me worked up more and more over the last few years, and increasingly so the last few months is the MS meds life vs the No MS meds life.
There are so many patients out there who like to scare the hell out of other patients by stating that MS is a death sentence and if you don’t take the meds you’re killing yourself even more. Listening to this(or reading this) really can be frustrating. Not all people with MS are alike. Not all cases of MS are alike, and the reactions to meds are not alike.
Sure there are some medications that are nearly guaranteed to provide certain side effects. With Avonex there’s the flu-like feeling that hits the first 24 hours. For some it’s hardcore, with others it’s as if you have a really bad headache & mild body aches. It’s there, just not as bad as it is for other patients.
I won’t even pretend to know what the side effects are with the other medications. They run the gamut. I know that with Tysabri(the once a month IV infusion) you have to be tested for the JVC virus before you can start it due to the early cases of PML that people developed after taking it. Which is an often(not always) fatal brain disease. If you’re positive for it you won’t qualify for the medication.
I’ve always been a bit negative when it came to the medications. For years I would warn people away from them. Well not warn, just let them know that if this isn’t what they really wanted to do and if they were on the fence then they shouldn’t go on them. This has been an unpopular opinion.
However as the years have gone on and my years have gone on in participating with many MS groups and boards I’ve seen a growing contingent of patients who refuse to take the medications, and people like myself who have seen an odd connection with a deterioration that is faster on the meds then not being on them. One of which is that each medication causes side effects. And often those side effects cause another drug to be prescribed. This goes on and on until people wonder why they feel worse on these medications instead of better.
Before anyone jumps down my throat that I don’t know what I’m talking about, I do. It’s been 19 years officially diagnosed, but I had symptoms for several years. As early as my late teens, before the diagnosis. I even had doctors wonder and suspect the MS despite how mild it was. Until the official diagnosis when the lesions were seen was it made clear. So I’m going on 24 maybe 25 years now. Which to many seems illogical that I’ve made it this far without being on meds.
But I have.
I tried Avonex twice. Within a year. I lasted a couple of months each time before the horrible side effects frightened me off for good, nearly ten years ago. My only other experience with any medications has been with prednisone, which is a steroid. I’ve had to go on that at least three times, the last about three years ago. The first time I was put on it was shortly after thanksgiving of 2004. I was married just weeks prior. I had a really bad flare and saw my dr’s partner in his office thanksgiving weekend. He put me on a dosage I would later discover was twice the amount that would have normally been prescribed. Not only did I blow up like a giant moon within two days but I picked fights with everyone around me, in that process I also severed a friendship for several months because of my sharp words and judgement. The steroid is infamous for making people’s emotions escalate, and with my being on a much higher dose then normal, the damage it did to me mentally was off the charts.
From these experiences I decided that the drugs were not the best for me. So I went on without them. Now my MS was always fairly mild the first ten years of official diagnosis. But by the early 2000’s they took a sharp then even sharper nosedive. This is how I ended up on the Avonex. And off of it.
Over the following years I realized I did quite well off of the medications. Though I had flares even my then Doctor told me that I was doing remarkably well considering what my tests showed. And yes, here’s the odd part. Take a look at my MRI’s and I have all these lesions. But when he would have me in an exam room, despite my reporting that I had problems, he would tell me that I would pass the physicals. This often left me upset and angry. I knew what I was feeling but why was I passing these exams? The Doctor always found my case to be an enigma, and he was fascinated with my strange, conflicting exams.
It was then one day when he told me that it scared him. I had officially failed a physical exam. This was a year after my daughter was born in the late 200’s. He brought up the medications once more to me in a manner that conveyed “I’m not going to push you, but you’re not getting any younger or healthier”. I refused once more.
Now we come to several years passed, and why I’m writing this:
My condition has deteriorated to a point that I finally have agreed to go on the medications. Keep in mind this is way past the years of when most people are on meds. Nowadays they have patients on medications within weeks. I’ve lasted almost two decades.
Since I started writing this a few days ago some things have drastically changed.
Next week I was supposed to start the injectable Copaxone. It’s the one inejectable medication for MS that doesn’t have such horrific side effects. Though from what I’ve read online on my groups, this opinion varies. Some have said that while it doesn’t give you the flu-like symptoms that the interferons give, there are some side effects such as hair thinning/loss and weight gain associated with it.
I admit this was somewhat frightening and off-putting to me. I’m in my early 40’s and I still have a very vain side that has no desire to deal with the above. I would like to keep my hair, thank you.
I called my Neurologist two days ago to talk to her about an issue/question regarding a drug my dentist wanted to use for a procedure. Something I have an extreme reaction to.
While talking she asked me about the Copaxone and noticed I hadn’t started it. I informed her it was in my fridge and the nurse was set up to come out next week to start the dosage. She said to hold it. The new drug BG 12( Tecifedra) that had been out in Europe for several months, and approved in March here in the US, was available and she thought it would be the right time. When we initially discussed it over two months ago, it was yet to be approved by the FDA. She said at the time that she would hold off several months until it was on the market for a while.
Something happened though that made her feel it was the right choice and the right time. She told me she was pushing it through to insurance NOW. It’s an oral drug that’s taken twice a day vs the once a day shot via Copaxone. The side effects are reported to be minimal compared to most every other MS drug on the market. Plus reading some of the daily reports on the message boards I’m hearing some amazing progress. People are saying they have more energy, less spasms, vision problems practically repairing themselves.
This really has been heralded as this miracle drug for people like myself. Patients close to that edge or just going over that edge. My doctors never thought I’d get this close.
I never thought I’d get this close to really question my own mortality. The last few weeks have been frightening and have pushed me to a point I never hope to go to ever again. I’ve honestly looked at the fact that with my sight problems and cognitive issues, there just may be a time I may never see my kids. Or just not be able to drive them to activities and appointments. The little things that sometimes we all take for granted. I realized that I don’t know how much time I had left. I just watched two women(Annette Funicello & Chrissy Amphlett) I grew up admiring from afar die within weeks of each other due to complications of MS. This impacted me far more more then you could ever imagine.
I became depressed. I lashed out today and said enough is enough.
I jumped off that box I stood upon so proudly all these years. I decided that now is the time I try something new. So as soon as it’s approved by insurance I’m going to try this new miracle medication and hope it helps.
I’m still going to deal with the depression problems. Today was an eye opener for everyone in our family. I may go on meds for the first time ever. We’ll see. I do know it’s nothing to be ashamed of. It’s something I need to take my time on.
I just want to keep living. I don’t want to give up who I am and what I believe in. Yet, I don’t want to let this take me over for good.