As I have been saying, I am currently relapsing, almost 6 months after my first round of Lemtrada and 7-8 months after I started Aubagio and it’s been getting worse by the day. I am supposed to get my Acthar (alternative to IV steroids) today a couple weeks after my doctor ordered it because come to find out, all his nurse had to do was dial a number and get my doctor to verbally approve the prescription, a 10-minute task at the most but she was “too busy”. Well, my dad did a shift change so he could go into work later and went to my doctor’s office with the phone number and had them call and hey! Instant medication… What a difficult task! I only continued to slip downhill for 2-3 weeks but this is how healthcare is supposed to treat a Multiple Sclerosis exacerbation right? It’s not like it’s time sensitive or anything.… Anyways, as I have been getting worse by the day I have pretty much been resting and doing a lot of thinking. I am angry.
I am not sure where these thoughts came from, perhaps a dream? I am not sure but I have been thinking of life while I was on Tysabri and life before my major relapse in 2012 that left me with a lot of “permanent” disability. I was physically capable of so much! I mean before 2012 I was still going on crazy hikes, climbing on huge logs reaching 20 feet over a rocky river flowing downhill, riding motorcycles and just so much more! Now? I feel like walking down the stairs is as much of a challenge as climbing across that log; living on the edge! Walking down the stairs, I am just such a risk taker! It makes me mad because I am only 25, there is so much I want to do in life, so much that I did that I want to be able to do again. I am not ready to “let go”, it’s not like I had 20 years of doing that stuff and now it’s time to turn in… I want it back but I feel like I am running out of options here!
I need something that will not only stop progression but help reverse it but nothing like that is out yet; clinical trials. I have to do more research but I know I can try to do stem cells but the procedure everyone is talking about right now involves full-blown chemotherapy, wiping out your immune system or bone marrow or something, I don’t know, but I do know that I am not sure I really want to do that. Again, it’s not something I have really researched so who knows… All I know is I can’t live like this. I want the “spinning” to stop. The fatigue to improve. The strength I once had. This is not the life I picture myself living just a few years ago when Tysabri was working great; it gave me my life back and now it’s been taken away again.
I am so angry. I feel (as many of you surely do) “robbed”. And I recently realized that in the last year and a half or so it seems I have lost the “fight” in me that I once had. The will power to just not give up. But now? I am just so wiped out. All I really do is wake up, drink my coffee and look forward to going to sleep later at night where in my dreams I do not have any sort of disability; a short “break” from life. I am slipping… I often find myself just sitting there thinking, “What the hell happened?” and that is not the mentality I need right now. I feel almost hopeless because I don’t have any sort of “plan” in mind.
All I know is that I need that “fire back, that motivation, that mentality that I will figure this problem out. All problems have solutions; we just have to discover them. Hopefully, I will start feeling better in the next few weeks after Acthar slowly does it’s thing because maybe then it will be easier to start rekindling that fire and get up off my ass and DO something about my life. I am just so tired…