I have to admit I am not much of a blogger, obviously. I have though, for many years, frequented several blogs of many MSers. The thing I like about reading others thoughts in regards to MS, is that I can sometimes leave with something. I am either touched, challenged, engaged, enraged.....long story short of it, I feel. I have actually been encouraged by several people to start my own blog. I have been told that I would get a lot out of it....basically, I should blog the shit out of my life. While I am certainly not going to blog the shit out of my life, (I am a hard to get to know, private type person) I am certainly going to blog the shit out of my MS. I am going to bitch, and vent, and laugh, and cry....all via blog. I may like it. I have to be boldly right up front with you and say that a lot of people with MS piss me off. Granted, I am still dealing with a little anger at my situation, but I'll get to all of that eventually. I was diagnosed in 2000. I am one of those jerks that hates going to a doctor, and puts it off until I cannot anymore...so, it started with headaches, and mild fatigue. After a couple months of some seriously cranium splitting migraines, I started to ask my mom for some of her super ibuprofen. ( I don't like pharmaceuticals....) so, I dealt with the headaches, and the fatigue. I really didn't know why I was so exhausted. But, I kept working. About 50-60 hours a week. (self employed, yee haw) then, the headaches and the fatigue seemed to fade. I started noticing that my left lip and parts of the left side of my face had patchy numbness. Again, here is where I should have made an appointment, but alas, I am stupid/stubborn. The headaches returned and the numbness spread...and I began to sleep like a champ. Seriously, if there were any awards handed out for sleep, I would have taken home the blue ribbon. I just slept, and slept. And worked, and slept. I noticed I was getting dizzy, which would cause nausea. I made an appointment with a local GP. I told her my symptoms, and she told me I wasn't drinking enough water. I shit you not. So, I drank more water. My head was pounding, and felt like a pressure cooker. My face and neck and thigh were numb on the left side....and I still didn't go to a doctor. What a dipshit. ( in hind site, I wonder if I had been proactive and seen a doctor at the earliest signs, if I wouldn't need my wheelchair now....) 1 st bit of unsolicited advice: if you think you have any MS symptoms, go to a doctor. I mean, if they are persistent. Don't be all hypochondria-cal and histrionic about your body. But seriously, if you are pushing on months of symptoms....go see someone. Cripes. Keep in mind, during all this time with these symptoms, I was continuing to work, play tennis, mountain climb, take my little brother and sister for long bike rides, borrow my moms dog and walk him on the nature trail, etc... I never stopped. ( here I am gonna enter a little word jumble touching on my above statement about how some people with MS piss me off. The REASON some people with MS piss me off is because I read their blogs and see them whine about MS ruining their lives, yet finish the sentence with them running a 25k the following week. Or hiking, or biking, or....whatever living mobility unassisted life they live. Please.) ...it angers me. Anyhow....continuing on, in addition to my marathon sleeping, skull numbing headaches, and numbness, I realized the dizziness was getting more aggressive. I would have to sit with my head between my knees, like bracing it firmly, as I felt the room whip around me. It would eventually subside, and I would be able to go about my day. Months pass with the above symptoms....then, the pants pissing. Like a toddler with a micro bladder, I kept peeing my pants. Not drenching them, mind you....but just enough. Ya know? Just enough to make you feel like total crap about yourself. At this point, my boyfriend and mother were trying to convince me to see a doctor....but I just thought I was prematurely in need of depends. at this point one would assume i would make a beeline for the nearest doctor, and i actually did. At the local hospital, where they obviously don't deal with much MS, i was seen, treated and released. their diagnosis? vertigo. They gave me some anti nausea meds and sent me on my merry way. Numbness, migraines, lack of bladder control, dizziness, and fatigue all summed up and fit nicely into a neat little vertigo box. voila! well, it got worse, much worse. one night, driving to work with my boyfriend, i almost killed us. i had been having double vision for a week or so, and hadn't said anything to anyone about it. mainly because i am not really the type to, and because i thought (with all of my medical knowledge. HA!) that it was somehow related to the omnipresent headaches i had been having. at that point, my boyfriend forbade me to drive...cant say i blame him because i had nearly just killed us both, and he drove me home and asked me to call my mom so that she could take me to an ER. I thought that he was being severe and a bit dramatic. i should have been severe and dramatic, eh? My mom took me to the ER...different hospital this time....i actually had gotten so bad that i couldn't stand straight up, my coordination was way off, all of my existing symptoms had staying power and kicked it up a notch. my pounding head...my loss of vision in my left eye....i sat on the examination table, in my 20s, and a somewhat attractive young doc came in...i proceeded, with no warning, to piss myself right there on the table in front of him. ugh. really. A neurologist came in, gave me a mini evoked potentials test, asked me to walk, hop, etc. i was bummed because of the whole peeing my johnnie....my mom was crying, and asking what the hell was wrong with her daughter....and then, there....there it was. my first time hearing to those words. multiple sclerosis.
maybe i had heard them before, i just didn't cement it in my head. i didn't have any reason to. but now.....the cement was out of my head, and ensconced my feet....i might have MS.
the neuro asked me if i wanted to stay overnight for observation, i declined the invite, but was firmly talked into staying. the overnight night stay turned into a week in hospital. MRIs, spinal tap, 24 hour urine catch, blood work. did i mention i was in a wheelchair?
i vaguely remember the 2nd or 3rd night, after everyone went home after visiting hours. I pulled myself out of my little uncomfortable hospital bed, and attempted to do some power squats, apparently thinking that would benefit me. sometimes i blow myself away with how stupid i am.
the saga continues....so, i got the bona fide MS diagnosis with the MRI scan of my pea brain littered with white spots. My blood count from the spinal tap joined the MRI. my urinalysis con fired i was pissing out B12 like it was water. I had MS. and i was scared shitless. sitting on my puny hospital bed, watching my family shuffle in and put flowers on the stupid roll table....*sigh.
Those were the days. the blissful ignorance of chronic illness...now, myopic. so, i was immediately prepped for steroids. they drilled a hole in my arm, and gave me a week of IV steroids....followed with an oral taper. gross, dude. nothing is worse than steroid mouth. that taste, wicked. while i was pretty determined to hate the steroids, i was amazed at the effects that they had. as though concocted by some great wizard, this solution coursing through my veins was putting the kibosh to all of the little nasty symptoms. the numbness subsided, i could stand up straight, my vision returned in my left eye, my headache was gone like magic. wow. fucking wow! I got discharged, with follow up appointments already on schedule. i rode home with an armful of MS pamphlets, my new prescription for my newly diagnosed illness, and went to sleep. there is just no sleeping in a hospital. not for me, anyway. if you can sleep in a hospital, hallelujah. more power to you, cos i can't. once home, my routine slowly returned. i admit, as badass as i sound, i was still scared. until i educated myself on MS, i was even nervous about exercise. I was ignorant enough to think exercise might cause another attack. dumb dumb dumb dumb. So, I took a home course in Multiple Sclerosis, and got my masters. Having a hyper vigilant, paranoid immune system sucks. But, hey, thems the breaks. So, I resume my life. I am back to working 50-60 hours a week, i hike, i take my bro and sis for long bike rides, play tennis, swim.....
did i mention i felt so awesomely normal that i cancelled my scheduled appointments? I had gone to a couple...but i felt fine, and i was determined to avoid medicine and doctors. so, i cancelled them. That was 2000-2001. Up until 2009, i continued to do just that...live my life. MS was rarely mentioned, and at times, when symptoms relaxed, I would ponder the possibility that the diagnosis was wrong. or, perhaps my RRMS kicked my ass that one time, but that was it. it was done. since 2000, i have experienced tons of MS related shit that i never bitched about, never told anyone, never allowed to interfere with my life. I had a lot of numbness, i was getting charley horses, crawling bug sensations, incontinence, headaches....i worked with a catheter in my arm, i just kept going. Then, in 2009, MS delivered a crippling blow. literally.
it had started back up with weird sleep, headaches, fatigue, numbness, burning sensation, le hermettes, weird coordination issues....so, MS reminded me of its residence in my brain....so, i called my neuro. My NEW neuro, because my old neuro had refused to see me again dude to the fact that i had cancelled so many appointments with him. so, i go see my new neuro. She puts me right on steroids, and starts me on beta seron. the MS stuff kind of subsides....a little. The side effects from beta seron sucked. yuck. flu like symptoms, and to boot, I had another new attack after being on beta seron for a few months. I got off beta seron. finni.
My boyfriend and i had decided to open up a used high end clothing boutique. In addition to our own business, I had been selling clothing online for years. We discussed it, and decided to launch a brick and mortar store. see how it did. My sister worked with me. She dealt with customer sales. I am not what you would call a 'people person'. I am shy, reserved, cynical, and very private. My sister is like sunshine, unicorns, and fairy shit. She excels in dealing with people, she enjoys it. So, she dealt with customer service, and i dealt with all of the paperwork and buying, the grunt work. Months into the launch of the store, which we were please with the success of, I was driving to pick up my sister to go to the store. I hadn't been sleeping very good that week, for whatever reason, and at a stoplight, i noticed my right leg was bouncing a little bit as i depressed the brake. I apparently blew it off, handpicked up my sister. I also noticed i was lacking the usual pep in my step. my feet felt like they had weights on them. very heavy. when walking up the stairs, i would get slower, and slower....i told my sister it felt like the stairs were made of marshmallow fluff, and that i was trying to get to the top, but it seemed like i couldn't do it. My sister talked me into calling my neuro. another round of steroids later, and my body was going downhill fast. like a big, icy mean assed looking snowball hurled at your face. I couldn't walk without holding onto something...someones are, a wall, etc. I couldn't wear flip flops anymore, because my feet were so numb i couldn't feel the actual shoe and it would fall off/trip me. I was pretty much numb from the waist down. The steroids weren't concocted by magical wizards this time. *snort
My lack of coordination was becoming a total bummer. My fatigue was ridiculous. Lack of balance. I could NOT drive. Me! me not drive? ridiculous. But, true. Cant feel my feet, can't feel the pedals. lack of coordination=not having the ability to operate the pedals. Nystagmus in my left eye, shitty bouncing eye vision thing. Incontinence was back.crawling bugs was back. Spasticity was new. brand spanking new. i feel like a mexican jumping bean sometimes. So, long story short. I could walk without assistance, i couldn't drive...so, i closed the store. MS killed that for me. In hind site, I could have hired and worked it out...but, it is the way it is. I can't change anything now. So, in addition to losing my ability to drive, and walk unassisted, I also could not work alongside my boyfriend and help with our business.
I suddenly needed a wheelchair to even get to my doctor visits.
Ill end it here and get into some of my psychological, emotional stuff in a different post. this one is long.....go blog me.
My symptoms presently are:
nystagmus, spasticity, crawling bugs, le hermettes, ataxia, loss of coordination/balance, optic neuritis, numbness, burning sensations, incontinence...etc