My MS Story
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 “hmmm” 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.
Sherri Abendroth....
I'm a gypsy, romantic, music-lover, book-lover, creator, mother, daughter, lover, friend. I have lived in many places and had many experiences both good and bad. I love knowledge....learning new things and teaching others. I believe in a higher power...for each of us that may be something different but for those of us who believe, it's all the same. It doesn't matter what you call your maker or that high power...the most important thing is to believe - and that believing makes you a better person. I do my best to fill my world with loving kindness and compassion. And now I'm learning to live with multiple sclerosis... 
Hi Sherri, my name is Kasey Davis, i’m 16 and i’m doing a project on diseases and chose MS because my grandpa died of it a few years ago. I’d really like to know more about what life is like with MS and what some of your daily struggles are, so if you could email me i would really appreciate it, thank you for your time. kas3fac33@gmail.com
Love your blog — I think it’s crazy how we MSr’s make these life and death decisions every day – what pill to take – what injections to give / what side effect can we live with . We are warriors without the credit!
Oh Kaira! What warriors we are! I hate making the decisions. Hate it. I wish neither of us had to do it ever again. But we will… again and again and again.
Im scared. I just took a minute to write it all down. I have 7 symptoms. I’m praying that they are symptoms of anything other than MS. Great, I can’t take care of my kids if Im in a wheelchair.
Hi Meghan,
I sincerely hope that it’s not MS as well. That being said, should it turn out that you have MS, you will find a way to manage. There are so many wonderful bloggers here that are mothers of children from newborns to grown… somehow we all find a way to make things work. There’s no choice.
Being a mom in a wheelchair doesn’t make you any less of a mom… it only means that you will have to adapt and do things a bit differently. And kids are so very resilient. They will adapt to whatever it is you need and how you do things.
But I sincerely hope you do not have MS….
Sherri,
few thoughts…
1. Your site is genius.
2. Love your photos.
3. still blows me away how similar, but different everyone’s stories are.
4. your story has inspired me.
5. so glad you have a rock like Coach in your life. I have one too…has made all the difference, huh?!
Hi Sherri
I found your link on Nicole’s blog (also a great read!) – similar time line for me – hit me in August 2010 and diagnozed December 2010 – Your Coach sounds like my Annie – MS is tough on the spouse as well but I am so pleased she is there. Glad you can laugh – I don’t know where we would be without the laughter. It is hard to find time to drop into blogs I know, but my MS blog is designed to give a few laughs each week. I can tick so many boxes on your list from no pen to no pain. The skin sensitivity comes and goes (luckily!) – it is so hard to explain to Annie that while I would mentally like a cuddle, physically try that and you’ll have to prize me off the ceiling! Anyway, will stop the ramble now and will drop in again soon if that’s okay!
thanks for dropping by Ian! so nice to have you here…. i figure we have to stick together, us MSer’s
it’s funny how so many of us have very similar processes, yet they remain very different… I’m going to check out your blog!!