ToothpasteForDinner

ToothpasteForDinner

Fuck alcohol as a social lubricant, IV-SM makes me just as alert, friendly and chatty as a “normal person.” I feel like I should have a routine morning infusion, and in order to keep that fantasy alive, I am purposefully not looking up the adverse effects of using steroids as maintenance. I mean, I know it’s not possible, but right now I feel okay.

I hope, at the least, I can keep hold of this optimism when I go up to into full 1ml injections (starting tomorrow). That’s what this month off has been all about, and I’m a week behind because my optic nerve is a douchebag.

Oh well, today I was productive, cleaned the kitchen, began actively teaching myself to slow down, watching my movements as if I were someone watching me and always about to say “wtf, why are are you doing it that way!” Because, really, that’s a genuine problem that I can blame partially on MS, but also on seeming to lack on a certain, functional amount of common sense. The lack of one makes the other harder to perform daily tasks, so I’ve been kinda feeling like I got to learn a lot of things I should already know as an adult, as if I were a child. Gotta do what I gotta do — things have to change about the way I live normally and how I normally do things. Which is pretty weird. But, quoth great prophet Jay-Z:

“I feel like the world is against me, Lord — Call me crazy but strangely I love the odds.”

2008
09/12
CATEGORY
The Dx
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3 Days of Outpatient IV-SM

September 10th, 2008

Last day of IV-SM today, and I’ve been told by yesterday’s nurse just to let today’s nurse know where to stick me… Day 1 and 2 nurses both had 4-5 unsuccessful tries before getting the inner elbow on the left side. That is where I am to instruct today’s nurse to put in the catheter.  I guess my veins just LOOK so juicy and gorgeous under my pale skin.  🙂

September 9th, 2008

Day #2 of 3 (IV-SM) will be today. I can already start seeing slight improvements… in that, I’ve been on the computer for over an hour, and barely any pain. Pretty sweet.

It’s a little unsettling to get my transfusions in the Oncology department… but hey, the chairs kick back and warm your buns. I napped like a champ yesterday!

Got plenty of stuff to be doing, but my walking/motor skills are back to crap again. I ordered a cane today. Just a plain, chrome dealie for $10. Big step. so to speak. But when you get asked on-sight constantly by medical personnel if you need a wheelchair to get where you’re going, a cane will be worth shutting that up. I got just plain chrome because all searches for “fashionable” or “stylish” canes took me to models in bright florals and nautical patterns. Nuh-uh.

Ok, time to be, um, “productive.” Whatever that means for today. 🙂

September 8th, 2008

Leaving shortly for the first of 3 2-hour sessions of IV-Solumedrol. I’ve been pretty resolutely optimistic since my July Dx, but with already being “bad off” enough to take short term disability at work, and now having to start my disability with an unexpected round of IV-SM for optic neuritis, I am feeling pretty low. In addition to my body feeling terrible, my mind and heart are feeling a kind of despair I’m not used to. I know that I have every right to feel depressed and scared — that’s human. But I don’t like how deep these bad feelings are burrowing into my heart.

How do I get rid of all this fear?

2008
09/10
CATEGORY
The Dx
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More Optic Neuritis Begins…

September 4th, 2008

I’ve just had a long 5-day weekend, between my PTO and labor day, and tomorrow when I go in I have to go straight to the HR office and see about getting my short-term disability in place until my titration is done and my body settles down. I want to work through the next week, if possible — I don’t go up a dose again until next weekend, and it’s the end of titration… after that, it’s just about giving my body time to adjust to the constant dosing. Before then, I’d like to make sure I’ve got all the loose ends on my plate tied up, project-wise. I’m still doing alright with dvd covers. 🙂

Last night, I had a bad dream about our HR director giving me mountains of paperwork and circuitous instructions until I was in a panic. I guess I still have some fears about being denied STD (Short Term Disability), despite having paid into it for over 3 years now.

Today? Finishing up yesterday’s list, and keeping my nerves at bay. Let’s hope tomorrow goes well…

September 1st, 2008

Why won’t my Dr. fax me back?!?! It’s been over 24 hours, and I need to have everything turned in by tomorrow. No later. I’m already anxious enough about “taking disability” to need a clonazepam with my morning coffee.

I can barely work this week, and even the thought of one more day is just about unbearable. Yesterday, I lost my vision at work for about an hour. I MacGuyver’d some ice cubes in a latex glove, wrapped it in paper towels, and moved it around my neck, eyes, and back.

Just a half hour in the car / in the heat only long enough to walk in and out of two establishments, and now my eyes hurt again, I see white flashes, and I am exhausted. How do I get this dvd boxcover done if I can’t really look directly at my monitor?!\

This is utter poop. Utter.

2008
09/10
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Betaseron Discoveries, FMLA

Betaseron titration can actually, as I learned yesterday, worsen MS symptoms during “the body has to get used to this shit” phase. Of which I’m really getting into the nitty gritty. Ah, irony. Within another two weeks, I’m moving into the full dose, and after a week into this last titration, I feel pretty rough. Thank goodness for having FMLA in place, possible Short-Term Disability to take, and the ADA on my side. I guess that’s one “advantage” to disability… something’s out there to look out for your wellbeing. I apparently have been underestimating the amount of help I’d have to swallow my pride and actually seek.

I looked at canes for the first time today; it’ll be sooner than I thought, probably, before I’ll need one. If I do end up needing my available, federally-sanctioned time off, it’ll be all about opening up a shopfront at amazon.com and trying to recoup at least some of the financial loss. I’ve got boxes upon boxes of books still unpacked, after three years, in the garage. My aunt does it full-time and makes pretty good $$$, so I’m betting I can bring in SOME kind of money before the STD kicks in.

MS is really starting to affect my life in ways I hadn’t expected. The overwhelming relief of having a diagnosis has carried me this far, but reality trumps relief every time. I never expected that I wouldn’t be able to do my job. A desk job, at that. It’s a tough nut to swallow. Or something.

Oh well, at least we’re going out to a movie tonight! 🙂 I’m still in relatively good spirits, so there’s always that.

2008
09/10
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2 Months after DX

I am definitely feeling a little overwhelmed right now… just 2mos. since the Dx, at least 6mos. into a worsening exacerbation, and I took it all — MS, my chronic symptoms — as “just another thing” to be dealt with. I was confident that going back to work the following Monday was absolutely the right answer — I didn’t want to change a thing about my life. In my mind, my life would still proceed exactly as I intended, MS or not. I guess the IVSM made me feel invincible, gave me a little too much of that “Pollyana” outlook… of course, I’ve spent over a decade shrugging off symptoms like an optimistic, blonde child. But, as per the Wikipedia plot summary, Pollyana’s “robust optimism” hit a downward spiral.

Getting up from (yet another) fall and being blind? Yeah, I’ll call 911 but since my vitals were fine, I figured I just needed to sit it out. Someone said to me yesterday, “You know it’s not… normal… to get up after a fall and be blind, right?”

I realized it had felt normal to me. I’ve been living with this disability for so long without knowing there was a disability there, that I still didn’t really comprehend it until yesterday. Ten years of “oh-I-must-just-be-crazy” to things like horrible nerve pain and paralysis, five years, now, of blaming a bad ER doc’s misdiagnosis. And another three more years of seeing doctors who didn’t assume anything was wrong with that diagnosis. Dismissed by my ENT during the beginning of the last exacerbation with seasickness patches, despite every test for vertigo (nystagmus, etc) clearly showing I was not experiencing vertigo.

Of course I assumed life expected me to just go back to work. My job, where I didn’t even know what a terrible job I was now doing because of my vision and trembling hands. I wasn’t going to let MS change me — “I have MS, it doesn’t have me,” right?

This is the first time I just can’t take comfort in that statement. I’m scared, and I don’t know what to do with my life right now.

2008
09/10
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The Dx
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Catalogue #1 – The week of discovery

04:40 pm July 5th, 2008

I tried to mow the a\lawn,. Within 5 minutes I’d broken the weed eater and had falllen in the street, When I got up, my vision was so blurry that I barely made i t back into the huose. I am on Craigslsit now looking for a lawn service and crying because of course no doctors offices are open and I can baelly see the sccreen to \type this,. I don’t know what’s wronfg but I am not okay.

I’m scared.

09:12 pm July 5th, 2008

Thank you, thank you to all the well wishes I got today — especially for the call from Beth, too. I had to avoid calls while the paramedics took my vitals. Yep, I called 911. And then apologized profusely to the medics while they checked me out. I mean, I knew there was nothing they’d be able to do, nor anyone at the ER. My blood pressure medicine might be at too high a dose now that I’m less heavy — I’ll see my PCP on Monday to get that looked into. A friend came by after the medics left and drove me to pick up a dinner I didn’t have to cook (advice from one medic — “I’ve done weight watchers too, but maybe just today, don’t watch points. Just eat.”).

I have sworn to not mow any lawns, go outside, do much of anything but remain still with my head in one direction. I’d like to spend a lot of time doing that in froint of the computer, but I’m still reading/typing with one eye open. So… movies? I guess I’ll check what’s on Demand.

Again, thank you.

July 8th, 2008

I was admitted to the ER on Monday morning. I had an MRI, and was admitted by Monday afternoon. There are over 40 lesions on my brain, and I am experiencing (broadly) widespread demyelation. The most likely diagnosis will be Multiple Sclerosis. I won’t know for certain until the hospital neurologist looks at the fluid from today’s spinal tap. My parents have already visited me in the hospital (from Summerville), and my best friend is flying down on Thursday to stay with me over the weekend while Ang goes to ABW in New Orleans.

Since Monday night, I’m on a nightly steroid drip, which has already improved my vision (and earned me two insulin shots). It’s running through me now, and I’ll probably be asleep soon re: ambien.

It’s so important for you all to know that I am not upset — I’m happy to finally have a real diagnosis that was neither “psychosomatic” nor a death sentence (by any means), I was not particularly surprised, and more than anything am deeply, deeply humbled by the amount of support and love so many have given so freely, so soon. THANK YOU.

I will post more, openly, later… when I have an “official” diagnosis, and probably only pic posts from me until then. Or, at least until I have a real keyboard in fromt of me. 🙂

Again, THANK YOU. Truly, I feel grateful and am in better spirits than you might expect.

July 9th, 2008

MS is the official diagnosis, but my vision has gotten back to 100% (sans glasses) with the steroid drip. After three days of steroids, my exacerbation seems at an end, so I just signed my discharge papers a day early!!!!!!! I get to leave after I get dose 3 of steroids with/right after dinner. I GET TO SLEEP IN MY OWN BED TONIGHT!!!!!!!!

Ang and Trish will be here between 7:30-8pm to pick me up. W00T!!!!!!!!!!!!!!!!!!!!!!!!!!

2008
08/27
CATEGORY
The Dx
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