Now She Hardly Recognizes Herself At All

Update from the doctors: we’re apparently waiting out the full six months on my current dose of CellCept. It should get better by then. I’m praying it will get better by then. Because, if my symptoms ever dip, the neurologist from Duke suggested another small burst of 10-15mg of Prednisone. I literally started crying upon hearing that. And, if it’s not better in six months, then we talk about two other drugs, cyclosporin or azathioprine. The names aren’t overly important (if you know anything about drugs, aka Imuran). And I really don’t want to go on those. The side effects of the cyclosporin aren’t too good and can cause kidney problems, seizures (apparently uncommon.. but I’m good with the uncommon stuff) and the Imuran can cause infertility and extreme fatigue (I already have problems with fatigue…). I’m sorry, but I really want to have kids when I’m older. I can’t go on those. And I can’t be put of Prednisone again. I don’t care how much for how long.

Nothing’s Greater Than The Risk

I was talking to my brother and realized that how much things are already improving. I’m not sure when it happened, but the double vision has stopped coming back in the mornings. Gotta bask in the little victories. I hope that this small improvement foreshadows how the CellCept is going to work in the near future. Maybe, in three months, I’ll be completely normal again. I’m beginning to have more faith in this, though I probably should have had faith to begin with. It was just easy to get discouraged when treatment after treatment failed.

And now I’m so much more optimistic about returning to NY. If this works the way it should…I don’t even know what to think. I’ll have my life back. I can’t ask for anything more.

The More I Know, The Less I Understand

Can you tell me how we got in this situation? I can’t seem to get you off my mind. All these ups and downs, they trip up our good intentions. Nobody said this was be easy, right? After all, we’re only human- always fighting what we’re feeling.

Good song.

Sometimes I have a really hard saying goodbye. See, I have a hard time trusting people. It hasn’t always been that way, it was acquired pretty recently. When I used to trust, it was all-out (for lack of a better adjective). I trusted quickly and I put all of my heart into those I truly trusted. Then, simply put, I learned that you can’t just rush into something like that. So, I’m a lot more apprehensive to trust. I don’t want to lose everything and pick up the pieces again. I used to be afraid of judgments. I still am, to some extent, but some of the people I’ve met recently have reminded me how much good is in people. And, now that I’ve met these people and begun to trust them, I hate saying goodbye. I don’t know if it’s out of fear of losing them or if it’s because I like their company and who I am around them.

I really wonder what it would be like if I never came down with this. Everything would be so starkly different. I would be a different person, to some extent. I’m talking about beyond the wiser aspects. But, the thing is, I can’t imagine the type of person I would be. I hope I wouldn’t be much different than I am now because I like this person that I’ve become now that I’ve matured more. Situations would definitely be different. I wouldn’t be home, though I definitely think it was a wise decision. I don’t think I would have met half as many good people as I have met, that’s for sure. I truly appreciate the types of people I’ve been able to meet.

And, as I work on my transfer essays for schools on this bus ride, I don’t want to leave these people. I can’t. I thought that I could, but now I really don’t think so. It’s not as simple as I thought. I thought that I was going to transfer closer to home to be closer to my medical care, since this is all still really preliminary. It’s barely been a year and there’s still no finite treatment yet. There are absolute ways to treat other diseases, but this one is completely patient dependent. And, in case anything really bad happens, it would be so much easier to be home. But, my heart’s not in transferring. I want be able to do what I want and not be controlled by this. I don’t want my life to be dictated by this stupid piece of crap. I don’t even feel like I’m sick. I’m just a little impaired. But that shouldn’t hold me back. I want to be back there. And I don’t think I’ve really be as sure about the transfer idea as I am right now. Maybe because I’m indecisive or unsure of what I felt.

I used to be afraid of my feelings, so I suppressed them. This time around, I think I’ll wear my heart on my sleeve and not be afraid of the consequences.

Just Go Ahead, Let Your Hair Down

Dearest, Darlingest Lo/Kay/Whoever may be reading this for the first time,

You don’t have to read any of this. I really won’t be offended at all. I just figured that you guys are some people that I wouldn’t mind telling this stuff to, but I don’t like to bring it up because I feel as thought it’s unnecessary attention and all that stuff. So, I started this around the beginning of the year because people from home kept asking how things were and I didn’t like to talk about it.

You can opt to read this entire thing or not, it’s not like I’ll really know either way. What I like about you guys is that you see me for myself, not someone who suddenly contracted an illness… because I feel as though that’s how some people see me. They don’t really know how to act around me and stuff because it gets awkward, and I can see how that can happen. It’s a weird thing. But, you guys don’t ask about it, and that’s what I really like. Because I feel as though I can be myself around you. You all saw me at my worst and acted as though there wasn’t anything wrong. Maybe that’s because you never knew me before any of this but, regardless, I really appreciate everything that you’ve done and how you’ve treated me like a completely normal person… because I know I haven’t exactly felt normal.

Alright, to stop the redundancy, I’m going to stop writing this. Feel free to share this with anyone. That goes for anyone who reads this regularly, too. But… uh yeah. And, for the record, I do feel like a complete tool for having a public blog. I don’t even like the word blog. It makes me feel uncomfortable.

Thanks again for everything. I love you guys.

It’s Hard To Beat The System When We’re Standing At A Distance

Three days in a row. Well, I think that my mood warrants a post, considering I can’t tell enough people how excited I am about life in general. I’m getting the fall all figured out (well, as much as I can currently) and now I’m figuring out summer. I just spoke with some teams, and I’m going to take pictures at Cape League games on weekends! Just on a volunteer-basis, so it’ll be wicked fun! I seriously can’t wait.

So, other than that, I just have doctor updates. I was really hoping that we’d go the route of another round of plasmapheresis, but that’s a negative. Apparently this is how it goes: when I had the pheresis done, my antibodies were completely taken away and at that time I was put on CellCept. Now, CellCept’s purpose is to stop the production of B-Cells that create T-Cells (I think? or the opposite), which make the MuSK antibodies (aka what I’m having problems with). But, since it takes CellCept a while to kick in, B-Cells were probably created between the lull between the end of the pheresis and when the CellCept began to kick in. Which is probably the cause of the problems I’m having right now. Those antibodies have a specific life-span, so they’ll die out eventually. Just not as soon as we’d like, unfortunately

But, since I’m having problems swallowing, we’re going to do a swallowing evaluation done or something. Whatever that is, it doesn’t sound fun. Anyways, my doctor’s going to talk to this specialist at Duke, who has worked with a bunch of people with what I have. Basically, they’re probably going to decide to up my dose of CellCept because I’m only on the pediatric dose. Then, we wait three months, see how it works. Hopefully we’ll see a big effect in one-three months. And if we don’t? Well, then we discuss another round of plasmapheresis and rituximab, which is some IV stuff that targets the T-Cells directly (or whichever cell makes the antibodies). It would be nice if the CellCept worked and we didn’t have to go that far.

If anyone knows anything about digital cameras, your help would be incredibly appreciated.

I’ve Got My Things, I’m Good To Go

So, it’s kind of funny that this is post number two from Florida. This has absolutely been a much needed trip. I’ve finally been able to clear my head and look at things more honestly than before. I feel as though I’m just going to end up reiterating everything I said the other night, but I can’t stress any of it enough. Maybe it’s the sun down here or something, but I’m so much happier. As hard as it’s been, I know that I’ve made some good decisions about how to deal with the Myasthenia and I think that slowing down was the best thing that’s happened to me in a while.

All We Need Is Some Relief

Symptoms update: ongoing double vision strictly in the mornings, very similar to when I was first diagnosed and when everything came back when I was in Tennessee/Fordham; difficulty swallowing, tried to dry swallow a pill (stupid decision) and it got completely stuck, also have had problems with drier foods like pretzels; cheeks are incredibly weak, smile fluctuates between slightly curving up and remaining horizontal — may be be related to heat in Florida, God knows there is none in Massachusetts. But, truthfully, I’m over all of that stuff. I’m just updating in case anyone cares.

Leigh’s going to laugh when she reads this because I’m visiting her this weekend and here I am, writing this while she’s sleeping (or trying to.. I can hear you rustling, ya know). I’m so exhausted, but I have so much on my mind and I can’t seem to sleep. Sometimes I get anxious when I haven’t sorted through my thoughts before I sleep because then I try to do it as I fall asleep and feel like I’m never going to get through it all. I usually end up restless. Anyways.