Record keeping is so important.

I know that once I feel better I'm going to leave this blog as a side thought and proceed through life until I need it again. I've got to stop doing that. I need to make the most out of this blog as a way to keep track of things, such as: what sets off a replase, how am I feeling, is there anything important about the study of this disease I should share.
I originally started this blog with the hopes that it would be a way for those seeking information to find it. Thus far, I believe I've been rather unsuccessful. The primary focus of this blog has turned into a sounding board for my complaints about doctors, insurance, employers, etc. Which, in a way, can be helpful to those who want to understand the difficulties some of us face. But alas, readers, I feel in many ways I've abandoned what I initially set out to do, to be a source of information, to record everything that's important both personally and medically. So, from here on out, that's my main priority. I will attempt to write everyday, even on days where the sun is shining and I'm out living life. I think these are the most crucial of days to document anyway, to further show that there can be light at the end of the tunnel.
Now on to the good stuff. The prednisone is making me feel like my eyes are glassy and everything is a bit blurry. I can't recall if I've ever had this side effect before, so I'm willing to take comments from other MS sufferers out there who have experienced this or know someone who has. It's making seeing difficult overall because everything is just so darn blurry.
The good news is that earlier I experienced a wee bit of double vision, which means something is working. If I cover my right eye and attempt to peer out with my left I can almost make out the shape of my hand but I have yet to see any defined details.
I called around today and found out information about applying for state medical insurance as well as food stamps to help me out until I can look for a job. Jan, Chrissey's mom, is bringing me home the applications because said eye complications are getting in the way of seeing the app online.
At their insistance I've begun to take Vitamin D and Vitamin B12 daily in order to get the vitamins I need according to MS recommendations. I know the B12 is supposed to help in the healing process of the optical neuritis. I can't say either way because I've been on the solu-medrol and that usually complicates research.
I've put on about five pounds since this process began last Thursday, which for anyone who has been on solu-medrol this is a small miracle. Usually at this point I'm bloated, retaining water and all swollen. My pants feel slightly tighter than usual so I know I'm retaining some fluids. I'm also incredibly thirsty thanks to the heartburn the solu-medrol and prednisone makes me have. I think it's one of the reasons I slept so terribly last night, the heartburn just would not quit. At this point I know adjusting my diet won't do anything for it so I just have to suffer until my body adjusts.
My mood is better today. Yesterday I had a bit of roid rage followed by a complete breakdown of tears and sobbing. I hate to get to that point but it was an overall emotionally draining day and I know, again, the meds don't help. In the end, it all worked out like Chrissey said it would and now I've got my oral meds and I'm a happy young woman. Each day is another step towards recovery.
Since this flare-up hit me so suddenly as I arrived, I really haven't had the chance to reflect on my life back in Syracuse or even had the chance to explore my new surroundings. I have to investigate how I feel about leaving my husband and my old life behind, but I think that can wait. I have the feeling it's going to be a difficult situation to think about but I'm not blind (haha) to the fact that I know I made the right decision. I'm craving the chance to get out and really see things. I've been taking brief trips with Chrissey when we have the opportunity and being so blind I just feel like I'm missing everything. I'm excited to get to the point where I will be able to drive again. I think that's the part that makes me the most miserable, the not being able to drive bit. I love to drive, it's where I go to think and get away and right now I'm getting some serious cabin fever.
All in all, despite everything, today is turning out to be a good day. Even when you're sick you're entitled to those moments where everything is calm and at peace. I like that.

My thoughts are not empty and hollow atm..

I'm a little scared that I haven't had any sign that my vision may recover. What makes it worse is when I look on the internet and read all the stats about the recovery chances at this level of progression. I know.. that someday I'll probably be completely blind, since with each flare-up I manage to get optical neuritis, but I'm not ready for it yet. Please, don't let it be now. I'm so fearful that I'll never be able to see out of my left eye again and that I won't be able to drive.
Chrissey would say I worry too much, but I think in this matter, I have a right to worry. What can I do if I go blind? How depressed I would be if I could never gaze on beautiful works of art or some cinematic piece? I know it happens to people, but after 27 years of seeing, I don' think I could cope. It would more than likely mean flushing a lot of my dreams down the toilet. There's one dream I don't think I could ever give up though. I think, despite it all, even if I was blind and unable to function with my own limbs, I'd still try to go for my dream of being a disability lawyer. I want to help people like me. I want to help others inflicted with MS so that they may have the chance to live a better life than I ever could have! I want to make sure that these people are treated fairly in the workplace, unlike I was by certain higher ups that I won't mention here. No one should ever feel like they aren't good enough because they were born with a disease like MS.
I think the real problem lies in the fact that someone knows at least one person with MS. They then say, oh yeah, my Great Aunt Shirley had MS and lived a long, healthy life. Hunny, I'm not your Great Aunt Shirley. The thing with MS is it affects people differently. You can't group all MS sufferers into one large category and expect the definition to fit. It doesn't work like that. For me, I have to keep my immune system weak because the moment it gets too strong I know I'm in for a relapse. Therefore, I catch every germ you bring to the office. I catch every bug that goes around. I'm a connoisseur of sickness! Mention what's going around lately and more than likely I've had it, far worse than you will ever get it.
But, I don't think I'm jaded. Although, I will say, I do shrug it off a bit as if it were my lot in life that I have to face. But beneath that shrug, I'm terrified. Terrified of where I will be in five years, in ten years and if I'll make it another twenty years. I know that if I ever find myself stuck in a bed, using a respiratory to breathe and just existing I will not allow myself to continue that way. Never. I don't think that's anyway to live. That's one of the reasons I moved to Oregon is because I know it's a state that allows assisted suicide for those who are capable of doing it. I want to be able to have that option! The option of choosing to live my life how I want to, not how the government says I am to live.
I didn't mean to go into such a dark place with my thoughts, but this is what I think about when I'm given a moment alone. A moment of self reflection like I had so much of when I was on the road. Sure, I want to be like everyone else and have the freewill to do anything I want, but unfortunately, I'm not able to at the moment. The thought brings tears to my eyes that I'm so bound by this disease. When will I ever get my chance of freedom? I thought moving to Portland was my chance at discovering myself and my freewill but how quickly that all can change in a day or two.
Bah, perhaps I'm just being foolish or throwing my own pity party. It's not like I mean to, but this just happens to be the place where my mind wanders too. I also desperately want to wash my hair and take a shower, but with this IV in my arm, it's not the easiest of chores. Therefore, I'll stick with being scummy!
Scummily yours,
Desiree