Been a few days since my last post here, I know. I’ve been really overwhelmed.
Yesterday deserved a post, no lie. The Day after Steroids. It’s like it should have it’s own movie… or at least it’s own warning label.
WARNING: Sudden lack of corticosteroids in the system may lead to the Kryptonite EffectTM *lol*
I was so proud of myself and feeling good yesterday morning – getting up at 7:30, going to work and getting there by 9:30 – getting my 1st paycheck… but I didn’t make it through the whole day before I started having blurred vision, atonic seizures, and MASSIVE fatigue.
See, I forgot that my body had gotten used to getting that IV-SM infusion at 11 am and getting to go to sleep when it wanted to around 12:30. So at about 1 p.m., when it had no more super-juice, my body went, “WHAT THE HELL, SHAPIRO?! WHERE IS MY MAGIC JUICE THAT MAKES YOU ABLE TO FUNCTION!?! AND MY SLEEP! GIVE ME WHAT I WANT!!!” and I simply didn’t have it. So I did what any normal person would do and called Adam to pick me up. He was already on his way – and I ended up being at work the whole time I would normally be there, though, unfortunately, I was worthless for the last hour and a half.
I’ve been really frightened on and off recently about my vision. It’s been blurring a lot, on and off, and I know it’s a totally common problem with MS – but with how much I read and write, and how random it is that the fuzzy happens, I don’t even know how long it’s gonna be before I need glasses. At least I’m not worried about going blind for real – just worried about when it’s gonna stick around. So there’s something! I’m feeling lucky about that.
I’m not feeling so lucky about what’s gone on at Stanford, though. I was really hoping against hope that out of all the locations that are working on the Liberation treatment that I would be able to go there to be a part of the trials, or at least to get the treatment there – but it appears that one of the patients who got the treatment with the stints put in has died – so they stopped the program there. Bleh.
Well, death vs. life with MS. Always choose life, right? Yes. Always life, even when it hurts. Too much good. Too much magic. Too many gifts in this world. Too much love. Too much good to just let go because of fear or pain.
As much as I hate to say it, if I *must* be patient and let other people go through more testing of this stuff before I jump in to get my condition treated or fixed, I can be patient. I just don’t want to get a whole hell of a lot worse. Earlier, the better, you know?
Anyway – I’m feeling TONS and TONS better than I have been in a long time. I’ve got a 5 hr energy in my system and I’m excited about spending more time outside of the house. I’m also glad that I’m at my workstation in the study near Adam and not on the couch in the living room. I have a desire to be living as opposed to wanting to crawl back into bed and escape life. Whether that’s positive attitude, medicine, or some combination, I don’t care. I’m just glad that I’m thriving at the moment.
I’m glad I remembered that there is no objective point to living. We all just do it our own way and try to have as much fun as we can while we’re doing it. 🙂 I’m glad I remembered that I can’t do it wrong… because even if God is judging, what’s he gonna do – give me a 6.5 for couch sitting? “You really could have made better use of that wireless network connection, Rachael!” That’s what God would say. *lol* Yeah, right.
I spend too much time thinking about what I “ought” to be doing or thinking… too much time punishing myself for what I can’t do or what I’m not doing, and not enough thinking about what I am doing. There are actually times where I think I haven’t accomplished anything in the last couple of years since being diagnosed with the seizure disorder. Isn’t that nuts?
But that’s ok. This is a struggle and a half, but hey! It’s life! THAT’S THE POINT! 🙂
Well, that and eating good food. That’s life too. And dammit, I’m hungry. It’s time for food. 🙂