updates will be posted at the bottom of the page….
the morning of Saturday September 18, 2010 i woke up like always…. SLOWLY… i am not a morning person at all… i hate waking up… it takes me forever… and talking? don’t even think about it…at least for an hour… i have such a fog in my noggin that i can’t even begin to process a conversation let alone a little short sentence. coach has figured this out… he’s one of those disgustingly happy people when he wakes up… instance bounce… ugh.
i laid in bed for a minute to get my mental bearings when it dawned on me…. gotta pee…. i gradually moved my legs to the side of the bed, and over…. so far so good…. i stood up… and was going to walk into the bathroom… like i have done all the 16,364 (give or take a few) other days of my life…. only one problem… my feet wouldn’t go forward! holy hell… they would only go up and down… like an idiot marching in place and increasingly worried that i would pee right there on the floor…. panic!
but only briefly…. after about 6 or 8 marching steps i moved forward….whew! i make it onto the pot… sitting there contemplating life as usual…. but the main thing i’m wondering was “what was up with that? marching? weird… huh”…. and it then dawned on me that i was holding on to the walls… i was dizzy, and the walls were helping me keep my balance… thank you walls!
i was working at my second job that day… 1 1/2 hour drive away… no big deal, we do it all the time… it’s home… that’s where my other job is…. i have continued working there since i moved away… coach and i left on time and made it without problem…. throughout that day there were a few more times that my feet wouldn’t go where i wanted them to….but it didn’t last more than a minute or two at the most….
my kiddo came to the workplace and brought the grandgirls for a visit…. as we were sitting there talking, i jokingly told her “i have self-diagnosed today…. i think i have MS”…. now why would i say such a thing? with only those briefest of anomalies that day? in the back of mind somewhere….somewhere in my soul…. i knew something wasn’t right… i couldn’t really define it and i was trying my best to ignore it….
work ended that day, coach & i drove back home…we had a nice evening, uneventful. i can’t recall what we did…but most likely we sat around the house playing on our respective computers while watching some TV…it’s what we do…
Sunday the 19th, i had a few more episodes and i fell down. ugh…. right off the porch. no injuries other than my pride. i also had the usual tingling in my hands and feet…. i was getting more concerned and mentioned it all to coach… told him i thought i had MS… we sort of laughed… but we now were both concerned….
Monday was even worse, and Tuesday worse still… i started writing down all of my symptoms…i even put them in a post because i was afraid i might forget them:
• falling down
• legs and arms feeling heavy, warm, tingly sort of
• super sensitive skin… air blowing across them is irritating…no pain
• marching in place
• once i start walking, i take 3 or more quick short steps then a few long ones, then maybe 3 or more short quick ones again
• my feet don’t always go where i want them to go, tend to want to cross over
• posture is leaning forward a bit
• shuffling when i walk
• the TMD thing
• dropping things
• unable to control a pen in my hand when writing, feels very fumbly
• decreased strength
• dizziness occasionally
• increased shakiness in arms and legs, almost tremors
• OK, tremors in my right hand…noticed myself uncontrollably tapping today. had to grab the hand to make it stop
• goosebumps, random. maybe in 1/2 my head, up one side of my back. down the back of one thigh…no cause & very random
• pins & needles feeling across my forehead, down my left forearm and into my fingertips… lasts about 30 minutes, and very intermittent
• more tremors today
• no pain anywhere, thank goodness
• no rash, bumps, streaking, whelps, or any other visible marks on my body anywhere…
• no fever
• don’t feel sick, haven’t been sick
• appetite is normal
when i reviewed this list, as i wrote it all down, i realized that something really is not right at all… i needed to go see a doctor….
thankfully, i had already made an appointment several months previously for a check up…. i had a mammogram back in April and the first shot in the hep a series… the timing of this appointment couldn’t have been better…. i mean, you know how hard it can be to get an appointment… near impossible… and my list of stuff was growing and i was getting pretty worried….
on September 23rd i went to the doc… pulled out an index card with my list on it… handed it over… he said “hmm” a few times… then he said i needed to see a neurologist…. great, fabulous. fanfreakintastic…. he gave me the name of a guy and told me to call today…
that’s just what i did. now this was a new experience for me. i spoke to the appointment girl on the phone. she told me how it works “give me a list of your symptoms, and your primary care doctor’s name/number. after the neurologist reviews it all, we will call you back and let you know if you can have an appointment.” um, okay…. if i can HAVE an appointment? she went on to tell me that i should hear something within 48 hours… this was on a Thursday… i hung up thinking i wouldn’t hear from them again until sometime the next week….
but hold on… the phone rang… less than 45 minutes had gone by…. “Ms. Stakes? can you come in now? the neurologist wants to see you today…” crap. not a good sign. at all.
coach was at work, it’s a Thursday which means football game that night…. so i went on my own for my very first ever appointment with a neurologist….
you can continue the saga by clicking on one of the MS categories over there and viewing the posts….
update March 2, 2012
so it’s a relapse… a flare up… and exacerbation… what ever you wanna call it. this go round started on Feb 2nd… MRI’s were done on my thoracic and lumbar spine… i got the call last night that the results for the thoracic are “abnormal” so…. an appt was made to discuss my results and the doc wants to show me some things on the mri studies…. okay… i suppose i will have some decisions to make. i know that he will want to stop Copaxone and start Tysarbi… that scares the holy fucking hell out of me. all the other CRABs have side effects that I’m not willing to deal with right now… but Tysarbi… that is the worst risk i can imagine taking right now… i know… the percentages show not that many people are getting PML… whatever… i am 47 years old… i have 1/2 my life to go still (hopefully)… and quite honestly, i would rather face further disability, possibly ending up in wheelchairs and other things, than face the risk of PML and death or brain damage… coach agrees… daughter agrees….
i hate these types of decisions… i really do… what if i make the wrong choice? what if no treatment is the worst possible choice? but on the other hand, what if i will feel better not pumping a bunch of toxic shit into my body? toxic shit that doesn’t stop or cure the disease…. what’s the point…. there isn’t one other than the money to be made by those who are trying to “help” us
update March 5, 2013
it amazes me how things change. always changing. over the past 8 months i was without work and applied for disability. after out big move, i was in bad shape. the stress of moving, the lack of sleep, the heat, and many other things hit me like a mack truck. it took me months & months to recover. i was beginning to think i wouldn’t get any better. but then… i did. by December i was starting to feel better than i have since i was diagnosed. it’s like i FINALLY recovered from the big relapse of September 2010. all this time…. crazy. so now I’m working again and loving it. i missed using my brain, thinking critically. of course, i was afraid i wouldn’t be able to think this way ever again. I’m grateful each day that i’m able to do it. my work is important to me… and i went through a period of not having a purpose… i think that was one of the worst things I’ve felt ever.
so we’re good now… me & the beast… for now. i realize things will change again. I’m just hoping it’s going to be a while… a reprieve is a good thing.
Update August 3, 2013
Just over a week ago I started taking Tecfidera (BG-12). This is the drug I have been waiting for and watching the research as it went through the clinical trials. Pretty much since I was diagnosed. I was so sick & tired of the injections. I believe the pain & drudge of daily injections was causing me to really focus on my MS… all the time. It wasn’t good for me mentally. I quit the shots in April 2012 and have been DMD free until now. And you know what? My MS didn’t progress. Physically, nothing really changed… same symptoms, same pseudo-flares. But mentally everything changed. I began to FEEL BETTER. I wasn’t constantly thinking about the beast. I was beginning to do things without pre-planning. Odd. And now on to the oral medicine.
The first couple of days I had some nausea and GI unrest. But since then I’ve had no problems at all. Well, except for remembering to take it LOL I haven’t missed a dose but there have been times when I forgot it until a few hours later. I need to set up a reminder on my phone with some really obnoxious sound telling me TAKE YOUR MEDS!
Working is good for me. My job is huge and busy and involves critical thinking, problem solving, research, and tons of writing and document development. All good for my brain.
Update April 6. 2014
So it’s been a while since I’ve posted any sort of update. I guess that’s a pretty good sign, eh? The beast has been pretty quiet for the most part. I’ve had bad days and better days. I continue to work and trudge through when I have to. I think that’s what makes it better for me. I know everyone was is different… and I feel extremely blessed to be working and pushing through the shit.
As for symptoms, yeah, there a few new ones in the past year but nothing major. Sometimes it gets a bit disconcerting but, well, you know. It is what it is.
I tried Tecfedera for a bit. But you know, I’ve come to the conclusion that I do just as well not taking any DMD. Those drugs scare the crap outta me. They haven’t been around long enough for anyone to know the long term ramifications. My body is compromised enough on its own without adding some unknown crud to it.
Update August 22, 2014
…and then there’s this
It has been described as among the most painful conditions known to humankind.
It has been at it’s worse for just over a week but this attack has been more than 14 days total so far. I’m definitely on the upswing as of Thursday 8/21. Break through pain remains a problem as does the incredible swelling.
I pray that I never have to suffer another attack but with the MS I suspect I have many more journeys to hell in my future.
God bless and keep my husband! He has been an amazing caregiver. This has been very difficult on him – he is a fixer and there was absolutely nothing he could do to make this any better at all.
He did however, in his most gentle and loving way, let me know on Tuesday that maybe I should take a shower LOL