My Story: One year after diagnosis

May 2011 (one year after diagnosis)

I’ve been battling the “something” on a tangible (in the physical symptom sense) level for a little over 3 years.The back story is not unusual. I had the frequently cited, less than ideal, childhood but was lucky to have coped by throwing myself into school. I managed to work and survive and get out of dodge as soon as possible. Years, tears, majors, lots of jobs, and a few school transfers later I was in a PhD program. I was recruited into it early in my academic career and the department seemed diverse enough to deal with my crazy background of Film Production, avant-garde studies, postmodern theory, psychology, and political science. awesome! Well things changed in my program and I got sick. I was in this program for 4 years when I decided to transfer since there wasn’t a social scientist that wasn’t an economist in the faculty any longer. I was all but dissertation (abd) but I was still left writing a psychology based dissertation with an Economist as an adviser. In any case, with much support from my professors as far as my academic abilities go, I transferred to a university in the UK without funding. It was a risk financially, since I would be self funded, but the program is perfect and the faculty amazing. I came in with a full proposal written but since I transferred I was/am required to redo some course work. Anyway, despite dealing with what was then an unknown illness (but lupus I was told which it wasnt) I moved to the UK, lived in a dorm at 30, and went to class again while presenting and working on the beginnings of my dissertation. After my first semester their (last spring) I came back home for my best friends wedding. I had been having some serious muscular and cognitive issues before I left but tried my best to ignore them. Took an extension for some finals, doubted my abilities, but finished in time to come home as I intended.  I developed optic neuritis within a week of being home, aka I went blind in one eye. I didn’t see a doctor for 6 days out denial, thinking it was allergies, and lack of insurance. When I finally did see someone I was hospitalized for a week, massive amounts of steroids, lots of MRIs, and was released after being told it was likely MS.  A month or so after that, l had another flare up, seizures and so on, and after a few incidents got my official diagnosis. This is a story I’m sure many of you are familiar with. So I have MS. I had no insurance since I’d been on NHS in the UK and thus accrued thousands of dollars in bills. I took a temporary leave from school though remained registered because I had had a distance contracted job that was not steady pay and otherwise my only income was and is student loans. The contracted research job I had before this happened let me go because I was not able to meet deadlines since I was in and out of the hospital so often. They later asked me to finish up but I did not respond as I was medicated and did not feel comfortable committing since they never payed me for the last attempts at work. There is so much more to the story but when I think about writing I realize its a lot of typical ‘job bullshit’ that everyone has to deal with. So just insert that while reading, I’m sure you’ve lived it.

Back to the summer and my diagnosis without insurance. I felt like I was done. All around. I couldn’t even process the diagnosis because doctors wouldn’t see me without insurance and my bills were exceeding amounts even my student loan money couldn’t cover. Then my friends came to me to tell me their plan. I couldn’t be a luckier person. My amazing friends, including the friend whose wedding I came back for, spent the summer putting together a plan to fundraise for me. Because of them I didn’t have to sell everything I own. I could pay most of the bills and even buy groceries.

I was forced to stay in the states and not go back to school because I wasn’t well enough, had no treatment plan since no doctor would see me, and couldn’t afford a flight (waiting for loans to come even knowing I wasn’t going back). In the interim I tried to find anyone that would see me. I was feeling so awful but had to fight for appointments. My doctors didn’t listen, they blamed my symptoms on a history of anxiety or depression and said perhaps I didn’t know what I was talking about. My MRI’s said otherwise but still I wasn’t and still am not taken seriously (A story, again, you all can understand I’m sure).

I finally got insurance 5 months after the optic neuritus.  2 mo after that I was able to set up treatment. I am so lucky it happened so fast even if I hated the outcome. I started rebif in Dec 2010 and had major side effects.

I currently live off the kindness of two friends who let me live in their spare room for whatever I can afford to give… Friends who let me interrupt their date nights when I come in and out of the door on weekend nights and put up with my all night pain induced wanderings through the kitchen. If I’ve learned anything thus far its that family does not mean blood alone. Its not perfect and though I complain a lot about not having my own space I could not be more grateful for the people in my life.

This week, after 4 months on the meds, I told my Neuro that I couldn’t take it anymore. I couldn’t move well or function at all really. I had high fevers and couldn’t form sentences. Those flu like symptoms were no joke for me.  Working on my dissertation was not even close to my mind as I couldn’t hold a conversation on the phone. I was sad and mad and just stopped taking the meds last week.I know thats not a good idea…  Other symptoms continued to exist but this week off of rebif has me feeling amazing  in context heh. My doc again didn’t listen to the list I had prepared for him but heard the overall idea. He has prescribed Copaxone now instead of Rebif so we’ll see how that goes. Daily injections seem overwhelming but if I can get by and actually consider thinking about school again, or you know any sort of activity, I’m happy to take it. I won’t lie, I’m single and 31 and the thought of the weight gain side effect I keep hearing so much about is scary to say the least. I’m tired and if I can’t go back to school I can’t really think of anything I have the skills or stamina to do. In the last four months I’ve taken up running. I’m slow and bad at it but its the only productivity I’ve found I’m able to accomplish, as a few hours every few days is all I had in me. It worked well for the times I felt physically capable but my cognitive skills were in the toilet (most times really hah). I’m definitely lucky to be able to do that, something I never thought I’d even try. Go figure.

I’m still living off student loans that I use to pay tuition for school I’m not even attending but have to pay for or i’ll have to pay back previous loans. I’ve tried to sell some of my hand made jewelry to get by but the shaky hands are making that tough. Tried to sell any electronics I’m not using which has helped a bit. Clearly I can’t go on this way. I have been talking to people with little experience about disability but that seems undeserved and unlikely for me since I can still walk and might be able to find work from home. I’ve been seriously questioning my ability to finish my PhD, the thing I’ve been most committed to since I was in middle school. I’m torn. I can’t imagine the disappointment I will feel if I don’t finish. I’ve dedicated 6 years of my life to this so far and am so passionate about research that I can’t imagine doing anything else. At the same time, I’m just so tired. My experience this last semester I was in school was so difficult, dealing with a flare up (that I didn’t know was a flare up) and general aging issues. Not being able to live up what I used to be able to accomplish was disheartening to say the least. I was always ‘pulling it off’ but now I’m not even able to pretend to.

I’ve worked hard and sacrificed so much of my social life to get to this place academically, again I’m single, 31, with no blood family to speak of. Everyone is getting married and having kids and I’m just on hiatus learning to use needles. So, to now be faced with the idea that I will never move beyond where I am career wise after focusing on nothing else for so long…I just don’t know. I am lucky to be able to walk, I’m lucky to be able to talk, so what am I complaining about? It seems ridiculous, I know. I have so much to be grateful for and yet I’m confused and depressed.  I simply feel like I’m too tired to figure out an alternate course and too tired to move forward the way I was. I fear I’m too tired to try and meet new people and scared I will have no where to go when I can no longer live where I do and no one to call 911 when my blood pressure drops to 50 like it did 2 weeks ago.

So where do I go from here?  I just don’t know. Perhaps I’m just being dramatic. Likely. I’m not sure anymore. I was never a big talker…to be talking this through so much, even in my head, seems wrong and whiny. This is when the literal family would be extra helpful, but I know people have survived and accomplished with less, so again I’m wallowing and being ungrateful.

There’s more I want to say, but I suppose this is back story enough for me to start this blog. I can tell you that i will often be whiny or bitchy. I’m going to complain about medication, side effects, mental health, doctors in every way shape or form, health care, and lots more. I’ll likely sound like a moody freak. Sometimes I hear my internal dialogue and think I sound like my 16 year old self. I feel like putting together a journal with dark themed doodles, pretentious philosophy, and overly dramatic poetry and prose. I counter those thoughts by telling myself that, in a lot of ways, a diagnosis of a chronic illness is like being born into a new world. You have to learn the language, the protocol, accept the circumstances, grow from the experiences, and let it settle inside you, before you stop being ‘obnoxious’ (aka stop over thinking and blabbering about it all the time). So that’s my warning and my story.  If you understand, are interested, and/or actually read this far,  feel free to subscribe.. or read 🙂