Just existing and watching time go by.

Thank you for all the kind comments left on my blog. Sorry that I haven't written or updated in quite some time, I know how frustrating that can be when you've invested time in checking for updates. I've fallen into a bit of a depressing routine as of late. I wake up, check my SSD status, take my meds, eat something, fiddle around on the computer until it hurts too much and then nap until dinner or until Steven gets home at 1 a.m.
I know it's because I'm depressed. I know it's because I'm in constant pain and I don't know what to do about it. I do have hope. I have a new doctor in Syracuse who seems to be a bit better and more responsive than the dipshit I saw in the hospital. She does have some doubts on me taking cellcept though. She said if I ever plan on having children (which is something I can't even fathom at the moment) we will have to consider an alternative treatment. She has agreed to continue the rituximab treatments or at least until she can talk me into taking tysabri. I don't care which drug so long as I'm not the one doing the injecting.
I do have to have another treatment of solumedrol because she thinks my face and bladder issues are due to some inflammation. If that's the case, if it's a home infusion at least I can watch TV or something while they do it.
I also started therapy. No, not physical therapy. Therapy of the mind, folks. That's right, the hospital determined I'm a wee bit crazy and that I need psychological help. But can you blame me? Look at everything I've been through!
That's all that I have to say because my life has become boring and mundane and sometimes stressful.

I gave up.

I gave up and moved back home. So many relapses, so much illness, just so much. So here I am. Here I am back in New York, living in my parents house and under their rules. At 28-years-old, after being independent for 10 years, I'm trying to let it all sink in.

Since leaving Portland I've had a few stints in the hospital, my most recent being this past week. It left me depressed and untrusting of doctors. The doctor I was forced to see pretty much told me it was all in my head and that I just needed to make sure I was making sure I was breathing correctly. This was to avoid the full-body spasms I was getting. Then they discharged me. Meanwhile, I continue to have leg, back and arm spasms which are worse at night when I'm sleeping. They are so bad that I wake up in the morning and am unable to walk. After all of this, what's not to be depressed about?

The good news is that I have an appointment with a SSD neurologist, which means my case is moving along. Hopefully soon I'll know whether I need to appeal or if I get it. I've been talking to my mother about the possibility that if it's approved, of getting a very small dog to keep me company during the day when no one is home. I have a very hard time getting around lately, mostly due to the spasms, so it might benefit me to have an animal companion here. Although, it might be a better idea to look into an actual service animal. I don't know, it's all up in the air.

Weak

Would ya'll think I was weak if I just gave up and went back home?

A little self-hate. :/

Pain, so much of it. I can feel it in my arms, my hands, my sides. I'm bursting open with all of it and there's no one around that can sew me back up.
Pills are making me tired. I should sleep while I still have the chance but I'm much too stubborn and stupid for that. My fingers are adapting to being frozen in time, acting as if they are surrounded in fast-drying cement.
Tomorrow marks treatment round two in order to get me working again. Meanwhile I go on to short-term disability and get fucked sideways on income.
I'm almost ready to go back to New York. If this treatment doesn't work it's what I am going to do. Just go back to New York and get ready to roll over and die. There's no point to living like this. How can this even be considered or compared to living? I fill out a sheet, honestly, about how I'm feeling mentally and it goes ignored. I know I'm depressed, I know I'm having suicidal tendencies.. it's difficult for me to come out and say it. It's like admitting defeat or showing weakness, something I've never been able to do. That sheet is my cry for help and it's just going to get filed away and ignored. Waste of a perfectly good tree, if you ask me.
Everything has lost it's flavor and luster, I'm too busy worrying about things I can't control. It's just paper. It's just things. None of it matters when you are dead, in that case it just becomes someone elses problem. Not mine. What good is worrying about it? So what if I lose my car? It's not like I can drive it anyway. So what if I lose the roof over my head, will anyone out there actually allow me to become homeless? Homeless and sick, I think there are agencies for that.
The worst part of all of this, this entry took me more than two hours to write. I miss my hands.

-D

Ugh. Again? Really?

My attempt at a brave face during a round of steroids.

I wish I could wri te all of my fruustrations ou t without so much pain. With each relapse I feel like I lose ano trher piece of digni ty and an even larger por tion of who I am. I used to be so s tr ong when it came to figh ing this disease, I've lost that. I forget who that person was. With each bit of steroids my flesh fills out bit by bit unt il I'm just a rounded bit of dough. I'm playdouggh being stretched ou t and slammed into t iny puddles of mush. '

I won' t apologize for my typing and I won' ttake the time to edi t or spellcheck, because t his is wha t his disease has taken from me. My hands are useless. I feel useless. I can't take care of myself. I haveSteven he re taking care of me but how long befor e he grows weary of my neediness, my r oid r age an my anger and bolts? Could I seriously blame him? No, I'm no t sure I'd ghave the heaert to stick around ei ther.

I'm just so tired of fighting. What am I fighting for anyway? Resisting the urge to just roll over and die... I don' t know if I have trhge energy for that anymore. I'm just..exhausted.

Sometimes.. your body gives you clues

And it's up to you to decipher them. Sorry I haven't updated in several weeks, as it turns out I relapsed. The doctor said the lesion in my brain had been active for at least six weeks and given my last post, that makes sense!

It all started when I began getting these strange headaches. They started out to be bearable, I would pop some aspirin and then lay down and in a few hours they'd be gone. They started with this slight burning right behind my right eye. I should have known, with the burning, that it was something more. For me, burning always means MS. Then they began to get worse. The burning would spread into my sinuses and the back of my throat. They would bring me to my knees, make me physical sick, I'd sneeze uncontrollably, my right eye would water and I couldn't deal with the symptoms, it was too much.

I took a trip to urgent care, since I don't have a primary in the area yet, and the doctor said it sounds like cluster headaches but since you have MS, we want you to get checked out by a neurologist as soon as possible. That doctor saved my life. I wish I could remember her name because I would send her flowers, a card or a fruit basket, or heck, all three! She made all the calls and she got me in to see a doctor at the Providence Multiple Sclerosis Center. Amazing!

The meeting with the PA was super informative and based on the pain, they wanted to get me in to an MRI right away. I went it for the MRI and as it turns out, I have a super large lesion on my brain that's been active for about six weeks. They sent me to the infusion center the next day and I started solumedrol.

This time around they did not put me on prednisone to taper and it was hell. The first week after I was so tired, sick and miserable all I did was sleep. Finally a few days later the giant boulder had been lifted off of my head and I was able to function. I could stand up without falling over, I could think, I could drive, life was getting back to normal.

I was also told I'm eligible for a clinical trial that will pay for everything, which would be great since my insurance company considers this a pre-existing condition!

I've also started to get a handle on my PCOs. This time I did a little research before going to a doctor and handpicked the one I wanted to see. Dr. Amato was actually recommended on a PCOs forum I troll around a bit. She turned out to be super nice, and put me at ease. She passed my test but only managed to tell me the stuff I already knew. Her solution was also just to give me a “band-aid” treatment of progesterone and birth control, all before getting the results back from my tests. I didn't have the courage this time to ask to have my cortisol levels checked but I have an appointment in a month so I'll bring it up then. Yup, this one didn't scare me away so I'll actually be going back!

And that's all the updating I have to offer. Although, I should send out a public thank you to Steven who drove three hours each way, twice, to take care of me when I was really bad. He made sure I didn't fall and did a wonderful job making sure I was okay. What an amazing man. After five years in a terrible, abusive, demeaning relationship- Steven is breathe of fresh air!

Coordination and my sense of “self” goes out the window.

I’m not sure if it’s a lack of practice, lack of exercise or it’s the MS brain screwing up but I’ve noticed something particularly interesting. My coordination and sense of self is deteriorating. What do I mean by sense of self? It’s the idea of where you are in proportion to things, like walls, chairs, stuff like that. I find myself constantly bumping in to walls or pushing things over on accident. This mixed with a lack of coordination can cause a series of embarrassing moments.

I never realized how bad my coordination was until I took up water aerobics. Simple moves that even the most disabled of people would be able to do, I could not. My brain just could not wrap itself around how they were doing it. And I mean literally, four step movements involving arms and legs. Knee up, arms out, other leg out, arms in? See, I still can’t even do it when I think about it and picture it in my head. I just can’t fathom how to replicate these simple movements. I wish I had done things like these before my first episode of MS so I would have something to compare it to. Have I always been this lacking in the area of coordination? I didn’t think so, but possibly?

Perhaps I was just slightly under typical coordination. I always remember being slightly clumsy but my attempts yesterday were borderline ridiculous! It was getting me to the point of frustration and I debated giving up and calling it a day. But I stuck it out and I’m glad I did. While the exercises weren’t enough to cause me to break a sweat, it’s still exercise and it will eventually help my coordination and perhaps also assist me with my balance issues. Besides, what could be more therapeutic than splashing around in warm waters with a pool noodle?

Now, the issues with my sense of self, that will probably never go away and will more than likely get worse as I lose weight. Mostly because I’m used to being larger so I’ve adjusted to accommodating that size. Ah well, you can’t win them all!

What about you? What do you do to help yourself be more self-aware? How about for coordination? Do you exercise? Practice yoga?

-Desiree