September 2nd, 2005 - Injection #5

So today is Friday again and how sweet Fridays are. I was actually at work until 7pm finishing work that had been backed up from upgrading our servers for the last two days. Why I stayed, I have no idea? I just did. I never go home before I am supposed to. Always a half an hour or more later than the time I am supposed to leave. I gave another two bills this week to our HR guy today to reimburse for health insurance.

Running totals for this year since March:
In network deductible remaining: $237.68
Out of network deductible remaining: $810.28

Fortune Teller Say: "I see a deductible met here very near in the future, give me five dollars". My 5 days of IV treatment and two MRI's haven't even hit the numbers yet. Geez, medical stuff is outrageous. I took off finally at 7pm, packed some bags for the boyfriends house and off I went. I'm so happy this week is over. Between taking care of a petting zoo while my sister is out of town (2dogs, 2 ferrets) and trying to keep my professionalism and my calm this week, I'm exhausted. I actually only stopped for a bit to drop off my bags because I was off to some pre wedding festivities with some girlfriends. My friend Jillene is getting married tomorrow so I have yet another wedding to attend tomorrow. They just keep coming! So many weddings, so little summer. I played sober cab to a few girlfriends who were enjoying the festivities (Crissy and Robin were so cute all giggly) and finally hit the sheets at 2:00am. Before I hit the hay, I maneuvered injection #5 in the left leg. I just figured I'd rotate my sites in clockwise order so I don't get confused. (It does happen, ask my mom.) So far, that routine is working well. I did it and I think there's a little less phat, er fat in my leg than my tummy and it bled for a little bit. I did it when I came home at 2:00 am because I forgot earlier during my bag drop N' run. Oops. It seemed to smart in the leg a little, too. I'm going to have to check my chart and where/how to measure distances for injections again. That's twice now it's hurt and the last 3 times there wasn't anything. Maybe I'm overthinking. It's been known to happen. I slept like a brick tonight. Plop, bang, done, out. I probably should have been to bed a bit sooner, but how often do people you REALLY like get married? I'd bet in all honesty, of all the weddings we attend in our lifetime, only 10% are people we REALLY like. The rest are obligations. Not that I don't wish people well, just saying... Anyone have any thoughts on this?

September 1st, 2005

Today I took off for lunch and made a run to Joann fabrics to get some yarn to finish a baby hoody project that I've been putting on hold for the last three weeks due to my little episode. Still upset about "el raiso", too, so I needed to get out of work for a bit. Oh well, I'm a little less upset about it each day. Just keep doing your job I tell myself. I noticed that my spot where my injection was last night is turning a bit red and is getting more sore. I think for sure I injected in the wrong spot now. Oh well, I sure won't try and do that again. My feet feel so good today and especially tonight walking across the cold hardwood floors before bed. I feel like dancing. Yum. I went to bed early tonight and slept completely through again. Three out of five nights a week is definately more than I could have asked for a month ago, so I'm not complaining one bit. Be thankful I tell myself that things luckily have returned to normal after my attacks. Some people are just not that lucky. FOOTNOTE: My room looks like it BLEW UP. Some people are just not THAT lucky, either. From the looks of my tornado, er room disaster, you'd think my hands were numb!

August 31st, 2005 - Injection #4

Ah, today I have a headache and rightfully so. It turns out after four years and asking for a raise they "feel that my salary is adequate for my position". Meaning either they can't afford a raise for me let alone a cost of living increase, which is crap, or they think I'm meaningless. I'd say they are just a bunch of cheap asses. What a slap in the face. I think that a cost of living increase is at least in order after four years and not one dime more increase than when I started. I realize money doesn't grow on trees, but I've also put in my time as well. I'm very frustrated. Paying for medication, additional prescriptions and little medical expenses here and there along with gas rising faster than my mom's beer bread, has put me in a position of health vs. skipping luxuries. By luxuries, I mean things, like groceries, haircuts and shampoo. Grr. I take a deep breath and try not to think about this today. My boyfriend calms me after I break the news. I go to lunch with a coworker, also named Mike and we have a nice chat. Not about any work stuff, but just a nice chat. I calm down. I try not to let anyone see that I'm indeed upset. I know that I do good work and that's all I have to remind myself of. Things work out in the end and sometimes in the most mysterious ways. On a lighter note, my guestbook on this site went wacko and then magically fixed itself! Yea! (NOTE TO SELF: Do back up of guest book entries). Today I must say that in spite of everything, I smile a little smug knowing that I am a good person fighting my own battle and that I with my mind and head high will beat anything that comes my way. I'm just THAT stubborn. I get it from my mother. She says Pollacks are indeed the most stubborn people on earth. I believe her. Sometimes not in a good way, but most of the time we stick to our beliefs, morals, and ethics. My family is just good like that. Plus, in a mean game of Polish Golf, also known as ladder golf, I'd take them as partners any day... Injection #4 today and I did the stomach fat area, I mean hip area, and I think I didn't get the fatty enough part, because it smarted a little during my injection and it had a little blood. I'll have to measure and pay more attention next time. Good thing is though that I had a minimal prep talk (seconds) and away I went :o) I think next time, I'll just do an "AND GO!" On an icky note, I was up last night with the weirdest dizzy/nausea combination. I did take my ibupro- excuse me, WALprofen, but it felt like I was awake and dreaming and the same time all while feeling like I was going to throw up. Well I was awake, but I wasn't dreaming. I really did feel like I was in a stupor of sorts. I was up for around 40 minutes then off to sleep with no problems. I think it helped just to ignore it and close my eyes. I'll remember that next time. Close eyes. Don't think. Try to sleep. Ha, same protocol when someone is talking to me I don't want to talk to. *wink* That's easy to remember. I'm horrible sometimes, but you gotta do what you gotta do, right? *smirk*

August 30th, 2005

Ah, and I slept so good last night that I didn't want to get up either. I ran a bit late on my leaving for work time, too. With dogs in tow, I made my way to work. I brought them with me and pulled into work right at nine, just in time. Sometimes I feel likes it's so hard to get out of bed and just get ready. Half of the time I shower every other day or at night to save time. I also feel horrible for walking in the door right at nine or a few short minutes after. My boss hates it if I'm even 2 minutes late. It's very frustrating when other people will walk in or sneak in fifteen minutes or more late and in jeans to boot which is not even up to dress code Mon-Fri. I ignore the double standards and we're all happy, sort of. Ok, enough complaining today. Sometimes I wish I was a stay at home bum or mom (in due time) working on my accessory designs and my knitting. Mike, my super nice boyfriend (yes, that's his name), picked up the puppies from my work about 45 minutes later and dropped them off at my house. I was grateful. He put my mind at east for the time being and met everyone in the office. Up until today, they thought him to be friends with the Easter Bunny and Santa Clause. Yes, he exists. LOL. Today I found a site online called Multiple Sclerosis Sucks. Very funny stuff. I got their permission to link today via email. I've placed them under MS links. Check them out if you need a laugh, two or ten. They also have a forum for MS'ers to chat. I also got a nice email from Jenny who has linked me on her site and wrote a very nice entry titled Inspired about my blog. I must thank her because I too, went from laughter to tears all in one read. People who stop by and keep saying nice things about my blog is so inspirational. They are definately things I can look back to when I am having a not so good day and your comments keep me lively. I still have a headache today. I've taken aspirin and nothing works. I think maybe I'm dehydrated. Ok, yes, I am. I never drink enough water and I'm positive this is my problem today. I started a new knitting project this week, I'm super excited. Takes my mind of my headache, or should I say lack of water? I retire at 10pm tonight because I am exhausted. A little bit of lassitude, I might even say. I didn't even brush my teeth I was so spent and lazy. Phooey... I slept good though, so that makes up for my stinky choppers. (MOM: Please do not give me crap, I already know that is gross.) ;o)

August 29th, 2005 - PART B: My Day & #3

At lunch today I found that syringe needle snips from B&D at Walgreens and it was only $4.99. The nurse from Rebif, Karen, told me about them. I have had a couple of you readers ask me about them and since the Rebif syringe are the same gauge as diabetic syringe you can use them. No more ugly sharps containers or figuring out where to dispose of them and they fit right into your serono travel bag they send you. [P.S. Rebif people - your nurse was A-W-E-S-O-M-E!, if I didn't say it before). I also picked up some WalProfen and stuck it right into that bag, too, so I won't forget to take it when I do my injections. That's Walgreen Ibuprofen for those of you who didn't figure it out by now. So creative those WalMarketing Team members are. I have had this craving for tomato soup for lunch lately and it's the only thing that tastes good. I've had tomato soup like four days in a row now (besides my Mexican exursion last week). I'm weird somedays. I just get these cravings for food like I am eating for two. I'm not, mind you, but I feel like it when the "crave" sets in. I went for ice cream tonight at Dairy Queen because it was another "crave". I wanted this S'more Galore Parfait they used to make with marshmallow cream, hot fudge, graham crackers, and lowfat vanilla yogurt. Tell me THAT doesn't sound yummy. Yea well, apparentely they don't make them anymore. I improvised. Marshmallow cream, hot fudge, vanilla ice cream, and Oreos Blizzard style. It came out similar only like chocolate s'mores instead of regular. For those of you who don't know about this secret phenomenon, they now sell chocolate graham crackers. Yes, for lack of a better phrase, you got screwed as a kid, but didn't we when we were kids. There was always something we couldn't have. I highly recommend my concoction. Oh, and order the small NOT the large or you won't eat for two days and you'll be high from sugar. I got dizzy after I finished the overgrown beast of an ice cream cordial. Probably because my blood sugar was high as a mensa IQ. This afternoon I was perusing blogs and I found an interesting entry from Say It Isn't So about family history. It made me think about my family history. My mother has Myasthenia Gravis, also an autoimmune disorder. My sister Holly always jokes she wants one for Christmas. I think she's funny, mom not so much I don't think. She was diagnosed on Thanksgiving weekend in 1991. I told her it's funny how that diagnosis date is emblazoned in your head forever, forever, forever, echo, echo.... Injection #3 went well tonight. Again, in the back fat, er...hip on the opposite side. I've been lucky so far as I've not had any site reactions where my injections are. Tonight we're down to a two minute pep talk. No stabbing yet, but I don't care. It doesn't hurt just pushing it in, so I don't ever feel the need to "stab" myself. My fears will never have to be confronted [ha, ha, ha, I'm laughing, cuz I can!!!] I've noticed today all day that I have had a headache again, but it's pretty dull and unnoticeable. I've noticed that my dizziness is starting to go away as well as my clutziness so maybe I just had a touch of something that is healing on it's own. If it worsens, I'm off to the doctor, I promise. Slept again through the night, oh how sweet it is :o)~

August 29th, 2005 - PART A: Thank You

I too have had the opportunity of being spammed by auto comments as well as some other bloggers such as Camille. I am turning on word verification for future comments. Hope everyone is ok with that! Also, thanks to those of you who are part of my growing fan base. I have over 20 daily readers on average and counting since I launched this blog on August 17th (although I have backdated entries from my other journals since the beginning of my diagnosis). Also, big kudos to those of you who took the time to sign my guestbook. Your words of kindness are my inspiration to keep doing what I am doing by documenting my daily journal. Hopefully this blog is helping some readers as much as it is helping me on my journey and that makes it worth all the while...

August 28th, 2005

Sunday. The weekend is shortly coming to an end and SO SOON. Grr. Where does time go? I spent the whole day today doing nothing, but knitting. I sat outside, enjoyed the weather and planted my rear end in a chair. I'm not even a teeny bit guilty for it either. I almost finished a project I've been working on for a monthy. A lovely baby hoody for my friend Suzanne. I feel so peaceful today. My boyfriend and I just hung around the house alone and spent time together. Well, he tackled a little lawn work, too, but I wanted nothing to do with that. I was too busy holding down the chairs to keep them from blowing away. Oh, I did do one more important thing today. I did go look for a syringe snipper at Cub Foods Pharmacy and Snyder Drug Store, but I couldn't find them at Cub Foods in the general pharmacy area and Snyder Drug and the actual Cub pharmacies were closed for the day. I'll have to venture out tomorow and see what I can find. B&D makes them and I'm sure they are everywhere, but unfortunately everything was closed. I don't think maybe I'm just clutzy, because I shut my eyes and stared at the ceiling. I almost fell over. I tried three more times. I think I may have a bit of an ear infection, which doesn't surprise me since I've been such a clutz the last two days and have been asking my boyfriend to repeat everything today. I ate a little more today again. I snarfed a couple of tuna croissants, with tomato of course, and I got this HUGE craving for chocolate chip cookies. My boyfriend was kind enough to comply with my urge and ran and got both! I baked them up just before bed and snarfed them down with some milk and off to bed I went at 11:00.

*****I think they were therapeutic because I didn't wake up once tonight during the night. I'll definately have to try that sort of therapy again. Soon. Like maybe tomorrow night. And the night after maybe, too. (wink)*****

August 27th, 2005

I slept in until 10:30 am. Hmm, yummy...that's all I can say. I feel like a million dollars today. Although I am still as clutzy as ever. I forgot to mention that yesterday I did the following:

1. ran into a cupboard 2. dropped and broke a bottle of nail polish 3. accidently slammed the oven door and sent everything on the back of the oven sailing onto the counter 4. dropped my make up bag and exploded eyeshadow everywhere 5. fell down the stairs 6. hit my elbow like 5 times.

I think that I am getting used to being back in "checks and balances" with my equilibrium and sense of depth perception. I feel like I need some goalie pants and a helmet. (You can laugh, it's VERY funny.) Today I dropped a bottle of foundation, took out a row of books at borders and tripped a couple of times. I feel like a I should have a warning label somewhere on my forehead. On an even funnier note: I went shopping today with my friends Robin and Crissy. We were picking up a gift for another friend and stopped at Don Pablo's for lunch. They were offering Carnitas on special for $9.99. They sounded awesome and not much food does these days, so I ordered them. She then asks me if I want chicken, pork, or steak? I asked her if this was a trick question. I always thought Carnitas was pork, but I said ok, I guess I'll take the pork-pork. She laughed. My dogs were a little more sore from walking today, but I didn't care. I was up, dressed, had full make up and was out of the house. I even threw a little styling in the hair for the first time in 3 weeks. I stayed up until midnight tonight lauging with some friends as they played poker together. I knitted and relaxed, but it was a blast. It feels so good to feel so much better and it shows in my face now. Ah, the things we take for granted.

August 26th, 2005 - Injection #2

WAHOO it's Friday. I am so, so happy to say that. I feel great today. I feel like my feet are just heavy and half asleep. My legs are almost back to normal and my back and rear end as well as far as feeling goes. I'm still continuing to lose weight. Maybe that dimple is NOT coming back until winter. Again, I'm not complaining. Today I had my other MRI at 12:45. I am also leaving at 3:30 today. I'm so excited. I'm taking that last Friday's other 1/2 of a 1/2 day of vacation. Say that three times fast. I drank down a can of tomato soup for lunch and I got there right at 12:45, I figured I already filled out what they need for paperwork on Tuesday, so hey just be on time. I was right. I walked right in and tada! into scrubs. Speaking of scrubs, I stole two pairs on Tuesday when I was there. The nurse said she was "looking away and didn't see a thing". LOL. I figure that if they are billing me upwards of 1400.00 for an MRI, they can bill me if they really want for a 10.00 pair of scrubs. *laughs* All went well this time. It wasn't 15 minutes as they suggested, but an hour. Oh well, it was lunch time. I left today at 3pm, grabbed by bags, and animals and headed to my boyfriends house to relax. I luckily remembered to grab my medication, too. I almost forgot that AND my DiGornio pizza. Either one would have ruined my evening if I had to go back and get them and/or replace them. I threw in my pizza, knitted a little and got out the little Rebif needle again. Injection #2 today. I narrowed my pep talk down to 4 minutes. I figure by next week, maybe 2? Anway, it wasn't so bad. I gave it to myself in my right hip area. They call it the right hip area. I call it back fat heaven. For some reason, the fat has crept up there as I age. Good thing that's my only problem area. Wouldn't it be nice if you could say...relocate your fat to places more useful? Like, um, your chest? Now I think I'm just wishful thinking. My headache has been here since Wednesday even with Ibubrofen. I also forgot take some after my injection. I was up in and out of sleep all night tossing between two temperatures: freezing and sweaty. Oh well, serves me right for forgetting. Next time, I'll lay them on the counter with my medication so I remember. At least I went to bed at 10 so I got some decent sleep after all.

August 25th, 2005

Hmm, carpet on the feet is niiiiiiiice :o) Got a little feeling in the bottoms of my feet today. I have had a headache since yesterday afternoon though. Maybe from the injection, I'm not sure?? I don't know if the dose was big enough, but my stomach also did a couple 180's about two-five hours afterwards, too, so maybe it was. About my MRI from Tuesday. I don't mind MRI's, just to clarify. Thanks for the pointers from everyone, I totally agree. Tune out and blare up the music. I minded that my neck hurt so bad from being in a crooked and/or weird position for an hour that I was literally tearing up from the pain. My neck has been sensitive since a car accident that I had in 1998. The panic claustrophobe thing set in after I realized how much pain I was really in and if I moved it would only take longer. OH, and P.S. they called back again today (the imaging people) and they need me to come back tomorrow again for yet, more MRI! I ate the biggest meal I've eaten today in over three weeks. It wasn't a whole lot in overview, but for me it was huge. My friend Kris took me to my favorite Mexican restuarant near my work. He was on a business lunch so I was treated to a FREE lunch*lol*. I had my usual chicken chimichanga with chips, salsa, rice and guacamole....hmm, yummy. I probably didn't need all that salty food with being dehydrated, but I just didn't care. My injection site healed over nicely. Not a lot of swelling at all, just a couple of pinpoint size scabs from my um, "test stabs" (if there is such a term). I've heard some theories on viral and/or viruses maybe being a potential cause for MS and started doing some investigating on this. I was late on my childhood diseases. I didn't get the chicken pox until 4th grade and they were horrible. I've always wondered if anyone else was a "late bloomer" on any of the stuff you run the course of when you are little? I passed on dinner, snarfed some Strawberry Newtons and went to bed tonight at 10:30. It was the earliest I have been to bed in awhile. I only woke up twice and once was for a nice soothing rainfall which put me right out again. Two things I love to fall asleep to: 1) a nice steady, rain and 2) small airplane engines humming (I live near a very small airport). Yes, I'm aware that may just be a little strange. Oh well...par for the course :o)

August 24th, 2005 - Injections Start

REBIF INJECTION TRAINING DAY


*****I must say that today I feel a whole lot like Michelle and not some weirdo named Michelle trapped in some idiot's body. I have feeling back in almost four toes on each foot. I will even go so far to say that I even feel a little bit pretty today as well. I drank a LOT of tea yesterday and I think that helped with my skin. The nurse came today a bit late, but so was I back to my office because I went on a last minute milk run up the road. It was the second jug of milk today, I might point out because I took a big swig before I left the gas station and the first one was sour. ICK. A swig of sour milk will make anything, especially injection training, something to look forward to after. Anyway, I made my way back to office and Nurse Karen was there about ten after 1:00. She went through all the basics [injection technique, rotation of injection, prepping the site, my autoinjector, disposal]. It turns out the pharmacy is supposed to send you what is called a titration pack. It's sort of like a sampler platter, if you will, of different doses to work your way up to the full one. You start at 8.8 mcg for two weeks and then 22 mcg for two weeks. After that box, then they send you a full 44 microgram dose box. Lucky for me, it seems as if they screwed up. They are sending me a titration box tomorrow by Fed Ex Air and guess who gets a month's worth of free medication with no copay. That's right! Moi! I feel like singing. [Singing: "Luck, be a LAAAAAADEEEY toniiiiiiiight...":End singing, spare readers.] And so when all the explaining was done and she got to the needle part and it was time for the first injection, I just couldn't stab myself. I asked her to give me a saline injection so I could feel what a "stab" would feel like, she said no and that I had to get used to it and do it myself. Again I tried and no quick stab. Just could NOT bring myself to do it. I poked myself a couple of times. After that, I just pushed hard enough and it went in. Success for me I was thinking after my hate relationship with needles. I was a little freaked out, but managed to get my first injection in without a hitch after ten minutes of "prep talk"with myself. I do have a slight headache tonight and my stomach keeps turning suddenly sometimes, but the for the most part, I feel good. My injection site looks similar to a minor skeeter bite. If you are from Minnesota like me, mesquitos are nothing. State Bird, if you will. As for me, I don't have much of a reaction to them. They barely even bite me most of the time. Maybe I smell horrible enough after being outside sweating that I even smell horrible to mesquitos *laughs* If this is all my injections entail, I can handle this. We'll see how I fair after the doseage increases to the full amount. Was it anxiety or curiousity that killed the cat? I forget. P.S. I still hate, er, dislike needles. Better word after today? Yea, probably. Now onto the frogs.*****

August 23, 2005

I slept like a log last night and today I still look like one (bonus!) dry skin and all . Today MISS FORGETFUL [that's me for those of you who didn't read yesterday's entry yet] did indeed remember to call the nurse from Rebif. The nurse comes tomororow at 1:00pm. I get the luxury of training how to do my injections over my lunch hour and at work yet! Apparently they don't do evening appointments for some reason, but I will make it the best of it. Less room for freaking out, I guess. I can't wait. Ok, I'm being sort of say, sarcastic, when I say that. I hate needles. Hate is such a strong word....hmm, let me think of one more suitful. Yep, I HATE needles. I'm not sure why. Maybe it's because when I was five and I went for kindergarten shots, they nurse stabbed me good and I in turn kicked so hard I snapped the needle off while part of it was still in my leg. From there, I was strapped to a backboard and given the rest of my shots screaming absolute bloody murder. Nothing like a little trauma for a five year old. My phobia of frogs I just cannot explain. Maybe I think sometimes they will whip out some frog jujitsu or frog judo and kick my ass? Yea, maybe not. I'll have to work on the cause of that one. My MRI was tonight at 7:30 or should I say 8:00 since they didn't get to me until then? Ok, my 8:00 MRI was decent. My boyfriend met me there and went with me. I was very grateful. My neck hurt so bad during the MRI from not moving that I was making myself sick. I started to do the panic, claustrophobia thing. I wasn't feeling too hot during the last part. Maybe the veggie burger and 1/2 a cup of ice cream I ate today just wasn't enough food. I started to meditate to clear my head and finally, after an hour, it was over. I finally got out of there at 9:30. I tried to look at the scans quick before I left. I didn't see a whole lot. I thought I had seen a couple of lesions that were there before, but the tech will never tell you anything. So I'll wait til Dr. Francis takes a peek and calls me. She'll probably call me fairly soon, she's just a good doctor like that. My sister Lacey stopped me when I got home and was finally eating. The conversation went like this:

LACEY: "So, did they find anything out?"
ME: "Yep."
LACEY: "What?"
ME: "They think I may have MS."

She rolled her eyes at me. (I thought it funny, lol.) She chuckled, then rolled her eyes at me again for good measure. I Finally ate a really good and decent size meal after that and settled into bed to sleep like a log again and with an ounce of good luck to hopefully not to look like one when I awake ;o)

August 22nd, 2005

I'm a tired girl after today. Why is it that getting up in the middle of the night to pee 3 times makes you SO tired? It's like my $64,000.00 question today. Anyone? Anyone? Buehler? I finally felt like myself a little more today. I don't really look like me, but I feel like me. My skin is still horrible and continues to break out from those "damn steriods". I am going to call them that from now on. I don't think "steriods" just does them the complete amount of justice. After seeing everything under the sun in my dreams the last two days but purple elephants, I can call them what I want. "Damn Steriods" IT IS! My appetite keeps getting better, too. I actually had three meals today and some snacks [Dimples, come back!]. The nurse finally called from Rebif to set up injection training for my preventative shots. Guess who forgot to call her back? Hmm, give you one guess? That's right, MISS FORGETFUL, otherwise known as "MOI". I guess tomorrow is another whole day that I can pretend to lose my mind *wink*. My MRI was rescheduled from today to tomorrow so they can scan my brain, neck and spine at 7:30pm and see if I do, indeed, have something in my cranium. Like brains. *laughs* I'm off to bed and way too late again. Keep staying up this late this week and I will be on a first name basis with those purple elephants...

August 21st, 2005

Today, UP AGAIN AT SEVEN! What the heck is wrong with me? Through all of this, I'm becoming a morning person! That is amazing since before I would never venture out of bed before 10 on a weekend. I got up again, did some laundry and decided that I need to make myself take another nap. The way I looked at it, I thought I may not sleep later, so I would try while I thought I could. I succeeded. I also finished my dose pack today (YEA!, last dose) but I think the steriods are really creepy sometimes and tend to alter your body more than you think until they are gone. I had the following dreams this morning between 9 & 11...

1. I dreamt that my little 7 pound dog Isabelle was paralyzed from the waist down and I had to pick her up and carry her everywhere like a purse. She was like a floppy muppet. 2. I flooded my boyfriend's basement. How?, I have no idea 3. I was winning prizes in multiples, nobel peace prizes, microwaves. Don't ask, cuz it's just too weird.

I shook those off when I got up and chalked them up to weaning off steriods, almost like Nyquil dreams if you will. NOTE TO SELF: If you think you are crazy, you may end up that way! :END NOTE. Today was a great day. I can feel my little toes on the outside, like two on each toe and my legs feel good against of all things, clothes. I did a little more laundry today, knitted a little, had coffee with my friend Erin for two hours [greatest conversation, EVER! :o) ] and I planned a little barbeque at 7pm. I was a busy girl, who in more than a month, felt like a little more like herself...oh, and considering I ate pretty much all the leftovers of the barbeque, I guess I now have an appetite like the girl I used to know as well. Maybe I'll get that lost dimple back.

*****About not sleeping, I hit it on the head. Up four times again. LOL. I must be psysco, er psychic, I mean.*****

August 20th, 2005

Today I woke up so early. I woke up at around 8:30am and totally full of energy. Then I cleaned my room, checked email and back to bed I went. I guess that burst of energy didn't last too long. At least I did something useful before I retreated back to bed for some zzz's *laughs* I slept in until 1pm, got up, ran to Target, colored my hair, and started to get ready for another wedding today. My old roommate Melanie is getting married to day and the guy I'm seeing and I are headed again to another historic restaurant in St. Paul to enjoy, this time with dinner (hmm, yummy). I fell today getting in the shower. I'm lucky that I didn't smack my head full on, only grazed my forehead and that my rear end took the brunt of the fall. I'm also lucky that my boyfriend was outside my door when it happened (without the keys, he forgot, once again). He thought he may have to break in, but I emerged from the shower, a little hysterical and I opened the door for him dripping wet [picture, say a wet rat...]. Things my sister took for granted: you have to rinse out the tub when you are done shaving. Things I took for granted: my sister now lives with me, the tub may have been shaved in and slippery. Either way, I can't feel my feet, so down I went. At least I emerged unscathed and with a minor ache in the arse. The wedding was beautiful today. St. Paul is such a beautiful city with it's history and mansions. The weather was so crisp and late summer. It was good to stand outside with a minor breeze and chat with old friends. My boyfriend and I did a bit of chatting as well. We ventured through Minneapolis on the way home and made a quick stop at my favorite restuarant, The Capital Grille. We stayed for an hour or so, but managed to talk about life, my health, where life was headed, and it indeed, was a good chat. I feel a lot better knowing that maybe sometimes, with everything going on, he just doesn't know what to say to me to help. I told him that being there was all I needed, he didn't need to say a word. He agreed. I made my way home to pack a bag, ventured to my boyfriend's house, traded up to some nice, comfy sweatpants and a tee shirt and served myself a big helping of solid night's slumber at 11... sometimes a good chat just does a body good.

August 19, 2005

Today I took my medication home from the work fridge and took 1/2 of a 1/2 day off of work to get ready for a wedding I'm going to with the guy I'm seeing. It should be fun. I need a night out and probably need some time away to let loose a little bit, so it should be good in that aspect, too. Today I am starting to feel a bit back to normal. I could use another 3 days of sleep, I think, but I'm not complaining at all. I noticed today I've lost a little weight. I used to have these huge beaming dimples. I lost one and one is on it's way out! Hmm, reminds me of the line from Romey and Michelle's High School Reunion:

ROMEY: Hey, Michelle!
MICHELLE: Yea, Romy?
ROMEY: Remember that time you got mono?
MICHELLE: Yea, that was like the best diet EVER. I tried to get it again, but just couldn't.

Sorry, I find that movie line hilarious. Guess I've lost a little weight, but hey who ever complains about that? I'm just happy that today I feel a bit more up to par. My feet today now, just feel like they are cold and wet. Kind of like if you were traipsing through woodlands hunting and it was time to come in, your dogs (feet & spaniels) are spent, and the sun was going down. Did I paint a good enough picture for all you guys? I tried. Now you are all thinking about hunting opener, I just know it... Maybe I should have taken another career path as a outdoor writer.

*****The wedding was fun. I got to spend a little time chatting with my boyfriend's family (they are very supportive of my situation) and a nice glass of Chardonney. It was at an old mansion in Historic St. Paul. It was beautiful. I was getting really tired at 11pm though. Made my way home and grabbed a nice helping of internet. HA HA. I stayed up until around 12:30, but none the less researched a little more on people who blog their mulitiple slerosis or document online things they experience. Of note, a photographer named Amy Davis. Her book, My Story, focuses through pictures how MS diagnosees put on positive spins on their disease. I may have to pick it up. Where did I put that Borders coupon? (Yes, I'm cheap!)*****

August 18th, 2005

Today work is a lot easier to handle. I am still very tired and my body is out of whack, but today is looking up. It's much easier to walk today, just a little dizzy is all. More than normal, I mean. I talk to my friend Suzanne and she calms me by email. She's so awesome. I'm glad to have her. I get a comment yesterday from a girl named Twinkie, who has fibromyalgia. She writes:

" i'm so sorry about you having MS. my best friend from high school got diagnosed with it about four years ago. and though i'm not trying to compare my struggles with yours (you by far have it worse), i have fibromyalgia and can emphathize a bit on having a disabling disease. you have great days and you have really really bad days. i've had this now for about five years and i'm finally get the hang of it. i look forward in reading more of your blog."

Good to know sometimes that you aren't alone. That comforts me. I came to work today and found that my first round of injection medication (Rebif) had been shipped to me. The first dose box of 12 injections. My boss was nice enought to store my perishable box in the fridge for me knowing I was out. I was grateful. I read the invoice and my little 12 injections are 1437.00. Can you believe it? Did I miss something? What the hell are they made of? Titatium? If so, I'll melt them down into something pretty to wear. LOL.

*****I fell asleep at 7:30 tonight, man did THAT feel good. Up again at midnight, but off to bed again at 1:00am. Up at 4:00 and back again at 4:40am. I don't even care that I was up. That was the best sleep I've had in 2 weeks. When I woke up I had the weirdest feeling in my feet. It felt like if you wet your feet and put them in wet plastic bags. I must say it's quite interesting. Now I know how my dog feels with those "dog shoes" on, haha. My nerves must be on the mend, because tonight was a lot easier to walk and the sheets felt nice and cool on my legs instead of irritating. The doctor noted yesterday that something may be going on in my spine around T6 or T8. Maybe this would explain that when I lay in bed my back has been hurting the last couple of days. Nothing excruciating, just a little irritating when I want to close my eyes and sleep. You know sometimes you just keep thinking and your head won't shut off? That's when even little distractions become big ones. *****

August 17th, 2005

Today I have had it. I can't go to work. My kidneys hurt and I can't even get flip flops on. My skin is horrible, I haven't sleep in days soundly and I am so bloated and have an enormous headache. My body has had enough. I stay home and sleep and pound water down in hopes to get back to some normalcy. I succeed a bit. I have an appetite today as well :o) I go to see Dr. Francis at 3pm. She checks me out. She states she wants to see me in 3 weeks and follow up on a dose of IV steriods in 6 weeks to normal everything out and suppress my immune system again. She sets up a lab screen for baseline for my now approved Rebif injections and I go to the lab and have blood drawn. She also schedules an MRI with contrast for next Monday, the 22nd at 1:45pm to see if she can see anything new that is going on and help see what has been progressing or perhaps causing my flareups. I fall asleep at 11pm, but manage to drink a lot more water today and get my shoes on finally. I fall asleep with something on my mind that has been plaguing me for 2 days. I've been seeing a guy now since January. He has been there for me through two attacks, but is that enough. Do I have enough energy to continue a relationship throughout all my stress? It seems like he just isn't there for me right now and I really need him the most. I wonder if it's best to take a break until he can be there if that is at all possible. I finally forget about it and drift off.

August 16th, 2005

Everyday is getting better and easier to walk. The numbness has moved down my trunk from just above the knee now and is subsiding day by day. Today I start a second dose of pill pack steriods to wean off the IV dosage. I get an autoinjector today for my Rebif by Fed Ex. My sister meets me at my work, has lunch with me and we check it out. We have a great lunch and I go back to my day. The pharmacy calls and tells me that my injections will ship today and should arrive in a day or so.

August 15th, 2005

Last day of IV. Goes off with a minor hitch. The line doesn't want to drip. I hold down my IV and play with it til it does. I don't want to wait for a nurse to come and fix it. It finally goes. All done. Tommorrow I'll start another 6 day dose pack to wean off the steriods. My feet are so swollen. I'm retaining water like a cactus and have fankles (fat, fat, fat ankles). My doctor has set up the paperwork to start Rebif for a preventative injection. The pharmacy also calls me to confirm, set up and get my regular injections started. I hate needles, but attacks are too much for me to deal with anymore and my luck has been running out on not having them so I go ahead and make the financial and mental preparation to start.

August 14th, 2005

Today is my sister's birthday. I throw her a bbq. My feet feel like they are on fire sometimes today. Hot then cold. I think the nerves may be reconnecting. My legs sweat from the calf down. I finish IV number 4. I sleep like a rock tonight at 10pm.

August 13th, 2005

Today I feel a little bit better, but again no major improvement. I do go to a friends bachlorette party, but hobble a little to get through. So far, so good. I finally get to bed at 1:30am. It's a little later than I should, but hey, who's counting?

August 12th, 2005

Day 2, IV treatment. No improvement, but all goes well and I feel a bit better in the fatigue deparment.

August 11th, 2005

Today the IV people are coming at 2pm. I leave work early and work from home until she arrives. The first nurse comes to put in the line. No go. Two more tries later and no go. She leaves and I wait for another nurse. The second nurse comes out at 7pm. Two more tries later and tada, it's in. I start IV treatmend and all goes well.

August 10th, 2005

The pain is getting really bad. I am hobbling now. I wish I had my crutches leftover from the time I fractured my ankle on a really cute pair of shoes. Oh well. It hurts to put clothes on and I've been hiding at my desk trying not to get up. I'm still waiting for my IV. The hightlight of my day? I pick up two little ferrets, one for my sis and one for me. Cute little buggers.

August 8th, 2005

I have put in a request for regular preventative injections and found out it was denied today by insurance. They will not cover Betaseron without prior authorization or trial of Rebif or Avonex. I also finish my oral dose of steriods today and no improvement. I call back the Dr.'s office to see what is on tap now to treat my condition. They call me back and say that they recommend an IV treatment for 5 days of Solumedrol, 1gram over an hour. I wait for the home care nurse agency to call me back to schedule a set up time to put in the IV catheter.

August 5th, 2005

My sister moves in with me today and I don't make the drive to Mankato. I can barely walk, I am numb from the waist down and have been hobbling all day from point A to point B. She luckily understands and has most of the work done. I help her as much as I can when she arrives in Minneapolis. I feel bad, but knows that she understands what is going on right now.

August 4th, 2005

Oh boy, I am crabby today. I knit a little and head to bed. I think I need rest.

August 2nd, 2005

Still no improvement, just worsening. It is starting to hurt to put clothes on and walk. The Dr. calls back with an oral dose of steriods for 6 days to treat. (methlyprednolisone) I pick them up at the pharmacy and start them today.

August 1st, 2005

The numbness, fatigue and pain has not gotten any better. Worse, in fact. It's getting to the point to call and quick. No more procrastinating this time. I call Dr. Francis' office. She isn't there, but someone will get back to me. I wait.

July 31st, 2005

Today I get up and feel like I've been hit by a ton of bricks. I sense something is wrong. I try to sleep. I am offered breakfast, coffee and other sorts of lures to get out of bed. Nothing works. I don't move and stay sleeping as much as I can. I finally get up at 4pm and shower. My feet are numb again and deep down I have this feeling I'm going into another attack. Again, I try not to draw conclusions, especially since I just had an attack 5 months earlier. Is it too soon, I'm thinking? Is it possible?

July 30th, 2005

I am so tired. I have been at a birthday party for my friend Crissy today. I go home for a bit to rest for a nap and go back. I can barely keep awake. I don't drink very much and I am not hungry. I retreat to bed at 12am.

April 1st, 2005

Today is my birthday. I must say that I finally feel back up to par. After a major sinus infection, a couple courses of antibiotics, an MS attack this year, 3 days of IV treatment and a dose pack (running dollar total on steroid treatment = $597.24) I'm quite ready to be healthy again. It's been a long year so far, and I'm ready to spend the night with my friends. I go and make the best of getting older. The guy I'm seeing is out of town, but my friends show me a good time and I have a blast. I toast myself and too many times. I feel a bit hungover the next day, but HEY, it's MY birthday. I think I told everyone downtown it was my birthday. *laughs*

March 19th, 2005

Today I finish my dose pack. I can almost walk without major pain. It seems like the steriods have helped and I am grateful. Again, things like walking should never be taken for granted.

March 15th, 2005

I am so moody and frustrated. My emotions are up and down and up and down with the drop of a hat. I can't walk and am crawling up the stairs now. I take a deep breath more than once today and keep my head up as much as I can.

March 14th, 2005

Today I start a dose pack of methlyprednolisone. It's a six day wean off from my IV treatment. All goes well. My skin looks horrible, but it's worth it. I can barely walk. The numbness has subsided, but it's been very painful to get from point A to point B.

March 13th, 2005

IV day three and all is well. The guy I'm seeing is nice enought to take out my iv and come over for a bit. I fall back into bed at 9pm again tonight. All is well this time with treatment. I usually am so razzed with my steriods it's unbelievable. I've actually been pretty normal this time.

March 12th, 2005

IV treatment, day 2. It is such a quiet day. I grab a lunch with a friend and go home to rest. My phone does not ring all day and I don't care. I spend a quiet night with my IV and I'm off to bed at 9pm. Ah, rest...

March 11th, 2005

Today I started an IV treatment for 3 days. The attack didn't get better, just worse. I start it in the afternoon and snooze. It feels really good and it is one of those naps that you wake up in the sun and feel all fuzzy. Yum.

March 4th, 2005

My feet are still numb. My next youngest sister and I decide to drive to South Dakota to surprise my parents for their anniversary. I'm very excited. The drive is kind of icky, but I make my sister drive a bit for me. That helps.

March 2nd, 2005

I woke up today and my feet were numb. I think I may have learned my lesson on seeing the doctor. I would almost bet that my immune system has turned on me for fighting this sinus thing for so long. I think I'll wait and see what happens for a couple of days before I draw conclusions.

February 21st, 2005

I see Dr. K today. It seems I do have the sinus infection lingering still. She puts me on antibiotics and it seems to clear up within 3 days. No more eye pain. Guess that will teach me. I should have been to the doctor almost a month ago for the sinus infection, but was too stubborn to go.

February 10th, 2005

I have just seen the eye doctor. I order new contacts! Yea! New ones are always so refreshing. It seems as if I may have something lingering from my sinus infection and a full sinus cavity that is causing pain in my right eye muscles. I make an appointment to see my regular PA, Dr. K. She is a super nice lady. I like her.

February 7th, 2005

I have not been able to look over my right shoulder with my right eye. It seems like some muscle is pulled or something. I make an eye appointment with my eye doctor.

January 17th, 2005

I am still sick with what I think is a sinus infection, but has almost diminished. I thank the lord. I have been getting plenty of sleep, but it took forever it seems to go away.

December 30th, 2004

I finally feel good enought to drive home. I've been in bed everyday since the day after Christmas until about 2pm. I drive home and crash early. I still haven't made plans for New Year's Eve because I feel miserable. The thought never crosses my mind to go to the doctor. Man, I'm stubborn.

December 26th, 2005

I wake up this morning. I'm in South Dakota. I'm here for Christmas which was absolutely wonderufl. I am miserable today. I've been starting to battle a cold since Christmas Eve. It seems to be quick and sudden. I'm in bed until 2pm. I decide to just rest today.

May 28th, 2004

I call Dr. Francis. I can't stay awake. For three days I have been fighting fatigue that is too great to handle with sleep. I've been to bed at 6pm for the last week and now am sleeping until 7:30 am solid. I'm falling asleep the last three days on the way to work driving and I was caught falling asleep at my desk, head bob and all. She prescribes Amantadine for the fatigue. I pick it up and I give it a shot. I just can't stay awake.

End of Diagnosis Afterthoughts...

After all of this, my life is pretty much back to normal. How could it be completely normal with a new journey ahead of me? My vision is better than it was before my attack even started. I have 99% of the feeling back in my hands and really only have a few lagging symptoms here and there when I get exhausted. There are days when for no reason, I get completely exhausted. There are days when I overheat for no reason, sometimes in the shower. I just have to learn to slow down, get some rest, or take a few moments and relax. This is always easier said than done when you like me and always on the go. I learned, or should I say was reminded, to never, ever take things for granted. I cried the time I could feel my hair again in the shower washing it. I laughed when I could pick up paper and feel it between the pads of my fingers and laughed even harder when I realized that I had been braking way too soon following cars with double vision and most likely looked a bit of a moron. I was grateful I wasn’t cursing the wall for jumping out at me and my rear was happy I stopped falling down the stairs.

The valuable thing I learned through this was to keep faith and keep my mind open. I wonder where sometimes it is that fate and faith cross, but most importantly, I was reminded as to why I never stop laughing…

March 3rd, 2003

I want to stay home so badly today as the pain in my back is ungodly. I am SO sore from the doctor poking and prying in between my backbones yesterday. I stay in bed until noon and go to work. I try to take it easy, but I have so much to do before I leave on Wednesday morning for work. I feel fairly good towards evening and Melanie and I grab a bite at McCormick’s and call it an early night.

March 2nd, 2003

I get out of bed and for 25 minutes, I feel good. It doesn’t last the pain is excruciating at this point and I can’t function vertically. I lie in bed and call Dr. Francis’ office for advice. She refers me to Mercy hospital for a blood patch, which includes an epidural and taking blood from my arm. My spine didn’t seal and the fluid is leaking into the area around the sac and causing extreme pain that will, on it’s own, take 3-5 days to heal. I am supposed to be headed to California on Wednesday for work and vacation. I decide to do the blood patch and suck it up. Anything is better than the pain I am in. I go to the appointment. The doctor greets me after I practically crawl to the room for the procedure. I came into the hospital bent over practically in the fetal position and waited, lying down, in the reception are for over an hour before someone came to greet me. He seems like a nice guy and I give him the benefit of the doubt immediately, mainly because I can’t see straight and am the most miserable I have ever been in my life. I lie down in the fetal position still dressed, shirt slid up and pants waist slid down on a gurney table. He cleans me wraps me in sterile papers, etc. and proceeds to start. He tries seven times to put in an epidural. He gives me about twelve shots of local anesthetic and stops and tells me that he is having some trouble with the epidural. He tells me that this is the 2^nd hardest epidural he has done and that there is an unusually small space between my vertebrae to maneuver. I calmly think to myself that I need to stay calm. He is going to try again. He tries two more times and finally after an hour he succeeds. Nine tries and he finally put the line in. He then goes to draw blood. At this point the thought of a needle doesn’t bother me and I just plain don’t care. I just want to go home. He tries to draw blood. He stabs me six times in the arm and can’t get enough blood. It is hurting so bad because I am dehydrated and the needle is a larger one. He tells me he needs to go into my hand to try. I snap. I can’t physically and mentally take ANY more. I am mentally exhausted. I cover my head with a blanket and cry from exhaustion. Melanie knows that I have hit my limit and leaves the room to temporarily escape the tension in the room. Five stabs later in the hand and another three in the arm and I look like a pincushion with bruises from hell. Finally, he has enough blood and puts it through the epidural to seal my spinal sac. I wait in recovery for a half an hour. I say nothing to anyone. It’s finally time to go home and I get up. I can actually stand and the pain is mostly gone. I feel a little better and I thank him and drive home with Melanie. It feels good to not be in pain, but I know that I need to put myself in a healthier place. I am exhausted, tired, pissed, and mentally have checked out today. I am glad Melanie is around to ease the pain.

March 1st, 2003

I spend the day pretty much in bed. I agree to go to a benefit dinner tonight the Minneapolis Convention center this evening for Children’s Crisis Nursery. I feel awful, but go anyway. Half way through dinner, I need to leave. I can’t sit anymore and the pain in my head is making me gag. I almost puke twice, two separate occasions, in the bathroom and decide it’s finally enough. I leave and find that once I stand, my head is not so bad. I wait for my ride home and finally when I am home and in bed, the pain subsides.

February 28th, 2003

I go to work. My back is SORE and when I move certain directions, it hurts worse. I also have a small headache and it doesn’t seem to be getting worse, so I stay at work. When I lay down, the headache seems to go away, so I am worried that the sac around my spine didn’t seal right away this time. I stay at home tonight. I was supposed to go out, but I can’t. My head hurts. Jennifer comes over and her, Melanie, and I watch Sex and the City episodes. I fall asleep on the couch and of course, they laugh at me after I laugh at myself. I head to bed around 11:00p.m.

February 27th, 2003

Today is spinal tap #2. Again, I get to draw blood and have it mindset that I will slap and/or knock out the nurse drawing blood if she messes with me. Melanie drives me to my appointment and she tries so desperately to cheer me up. She succeeds some of the time, but I am still distant, pissed, and fairly quiet. She doesn’t push the issue, she can read me clearly and knows that I am at my limit. Again, I go through the spinal tap, only this time the doctor is an asshole. He doesn’t wait nearly as long for the Novocain to kick in and it hurts like hell at first. I try to tell him I’m in pain and he keeps going. If I didn’t have my naked ass – ass up I’d smack him a good one. The topical kicks in and finally it numbs. He finishes and this time, my back is sore like someone really kidney punched me this time. I lay again in recovery for an hour and Melanie and I drive home, well Melanie drives, and I settle in bed after grabbing something to eat.

February 26th, 2003

Dr. Francis calls today. I am now extremely pissed off as hell. It seems that when they did my original spinal tap, they didn’t test for lyme disease bacteria in my spinal fluid, which means another spinal tap is well, on tap. They schedule one tomorrow and I spend the whole day silently cursing everything in existence. At this point, I have had enough poking and prodding. I call my mother immediately after I schedule the appointment for tomorrow and I break down. I am at my ropes end. I can’t take anymore. I am mentally exhausted and this was the icing on the cake. I go to bed knowing what is ahead and I hate every minute up until then.

February 19th, 2003

Today I was supposed to call MS Pathways to start Betaseron. I didn’t. I can’t tell if I just put it off because I am not thrilled with the whole Idea or that I was busy at work. Probably both, and either way, I should have called. I am nervous about he insurance coverage and how much they will cover. A bill or two has started rolling in at 80% coverage and I know there will be many more. I have a few estimates at around 10,000-12,000 dollars a year for therapy and wonder how much the medication will actually set me back and is it worth it. I wonder if I will ever be able to switch jobs with no hassle in coverage, etc. I decide now is not the time for me to start. I wait.

February 13th, 2003

I finally get another request finished for Dr. M/Dr. W’s practice (more childhood doctors). I don’t know what I expect to find or stumble upon on them, but I imagine it would be a good idea to have them within reach, just in case. I find out there is one more to request from Dr. H, which I put in immediately today after receiving it by fax.

February 11th, 2003

I thought I would start therapy today already and think I could have, but waited too late in the day. I spend the whole day pouring over information instead of working. I choose a drug called Betaseron due to no refrigeration and the frequency of the injection, every other day just under the skin. Ugh, once again, may I mention I hate needles. I haven’t used the Neurontin for a couple of days and my fingers feel pretty good, but my recall memory is awful. Maybe it’s just me, too much on my mind? I finally got a decent night’s sleep last night. I was tucked in at 9:20p.m. and slept solid. It felt good. It’s been almost a week since I slept through the night again.

February 10th, 2003

I go to my follow up appointment today. I talk with Dr. Francis about therapy options and she checks my reflexes and coordination again. She tells me to come back in three months and tells me to talk to Jennifer out front and set the appointment from now. I talk to Jennifer and pick up the last information on therapy options. I am to call her after I look over the information and choose one. I have taken tomorrow off.

February 7, 8 & 9th, 2003

Mom and my sister Holly drive down and stay so that mom can go to my follow up appointment. We go eat with my Aunt Joyce and hit some thrift shops along the way during the weekend. I make a haul as usual and spend too much money as usual on clothes, too. I didn’t get enough sleep this weekend, but I pull myself through it very slowly. I didn’t go out at all this weekend.

February 4th, 2003

Today I sleep in until 7:25a.m. It feels SO good. I am not sore from working out last night. I took about 10grams of ribose before to tease my working out back into my schedule. I slept so well last night. It seems like a long time since I had that kind of rest. Melanie stayed over and we talked about her moving in. Work is busy today, lots of odds and ends. I work out on the treadmill at lunch for 25 minutes. I feel dizzy twice so I slow down and lower my heart rate. I get changed after showering and I have electrical vibrations down my spine. It subsides shortly after. I go back to work and call my mom trying to find my old medical records from my childhood. I find the ones for Dr. S, one of my doctors. One doctor down, one more to go.

February 3rd, 2003

I find my right foot dragging today, but my vision is almost back to normal, in fact it is better now than before this attack happened. I had originally thought my prescription was getting worse, but it was the ms taking over that made my vision worse. I, from time to time read the therapy books I grabbed at Dr. Francis’ office after my vision test and I read as much as I can. The therapy is supposed to keep the attacks from happening again and they include, of all things, injections. I laugh to myself and shake my head on this one. What better way to conquer something you despise. I talk with Melanie and go and work out for the first time in months. I spend 20 minutes on the treadmill and do some yoga. I relax myself and hop into bed. It’s 11:35 and I feel fairly good this evening if I do say so myself. I finally start to get around to getting this into my computer with some sort of order. It was taken from my journal, which isn’t always easy to decipher or read for that matter.

February 2nd, 2003

I sleep in until 10:30 a.m. and I sleep from 1:00p.m. -5:45p.m. Some friends stop over to look at my roommate's daughter's old stroller. I find some energy to cook and I quickly find myself completely exhausted at 9:30p.m. I call dad, chat a bit, and head to bed at 10:30p.m.

February 1st, 2003

I catch up on rest during the day all day and go to Zelo with my best friend Melanie at around 10p.m.

January 31st, 2003

I am so happy that Friday is here, but even happier that I finally have slept though the night in over a week. I am still very tired. I look like I haven’t slept at all in days. How appropriate. I plan on going out tonight for girl’s night out. All of us go, but Jennifer, Melanie’s sister. We go to the Local and to Zelo for cocktails. We have a great time as usual.

January 30th, 2003

I finally, after over a week, sleep through the night.

Janaury 29th, 2003

I finally, in a state of complete exhaustion, fall sleep at 4:30a.m. I am so, so tired. I’m starting to hallucinate. I decide to call Dr. Francis’ office for something to help me sleep. Dr. Francis is on vacation, but another doctor in the office prescribes me Ambien to sleep. I notice that I have a dime-sized portion of my right hand with feeling. My vision continues to improve.

January 28th, 2003

I finally, with frustration, fall asleep at 3:30a.m.

January 27th, 2003

I fall asleep at 1:30a.m. I am exhausted.

January 26th, 2003

I nap most of the day.

January 25th, 2003

I feel pretty good today and rest during the day and I go out with Melanie tonight. We have a great time together, we always do. I go to sleep at 1:30 a.m.

January 24th, 2003

I go to my vision test appointment. I sit down and they stick electrodes with glue to my head. I look like a Martian. I joke with the technician that I hear radio from London through my head. She makes me stare at a screen with a red dot in the middle one eye at a time. It has black and white boxes that change patterns and check my responses from my brain. I finish and she wipes the glue from my head. I go back to work and finish the day. I feel really good today and not so tired. Again it’s Friday, so I go out. I have a great time and once again after bar and stay out with Melanie. I don't know where I find the energy, but it seems to once again drown my worries and the obvious situation.

January 21, 22 & 23rd, 2003

I go through the next 3-4 days with the same symptoms and my vision (double) tends to get better. I have a vision test on Friday at 1:30p.m.

January 20th, 2003

Today is my spinal tap. I go to work today around 9:00a.m and am very, very nervous. I head to my procedure with mom. I find out I have to have more blood drawn before the tap. I am so pissed off. Nobody told me about the blood draw stuff. I am about ready to spit needles. I hate them and have been poked enough. The neo-nazi needle nurse stabs me abruptly. I take every last ounce of calm I have left to keep from punching her and my mom reads me like a book knowing I could have snapped at any moment at her. The nice stab she gave me later bruises quite nicely for the next 2 weeks along with the IV bruises from the IV line. I look fantastic. Almost like someone beat the hell out of me. I go to the tap procedure room. I lie there and try to get comfortable. My back spasms and I can’t get comfortable. My mom is there and she calms me. I cry silently. I don’t want to do this. The doctor starts with the cleaning and then the Novocain shot. It stings and it pinches and then it really burns. I hate needles. UGH! My butt and legs go suddenly cold. IT feels like someone is poured ice water down the crack of my rear. The doctor tells me I will feel some pressure. It feels like a dull backache. It’s uncomfortable, but not excruciating or anything. He lets the fluid drip while the table I am on is tipped at a 45-degree angle head up. He says the worst is over and we chat. He asks me of my employment and my family and my diagnosis and recent and past tests. He takes 8cc’s of spinal fluid and tells me about the spine, its fluid, its color and the purpose of the fluid and what you can tell from a spinal tap. He notes my curiosity and he shows me the vial of fluid. It’s clear and acts like water. He finishes about 20 minutes later and I roll over face up to a recovery table and wait an hour for good measure and drink some juice and eat some food. Mom brings me a turkey sandwich and I inhale it. She tells me I should have showed my butt to the cute doctor walking by to ease me up a bit. I finally start to find the situation funny. She makes me laugh again by telling me I am lucky that my father isn’t there to play with anything and everything. She notes specifically the up/down button on the recovery bed for my sake. I wait an hour, get dressed and go home. The drive home is a little uncomfortable, kind of like someone drop kicked me in the kidneys. Mom and I order pizza hut, start a fire and I lie down on the couch and rest in the living room. Melanie picks up my Neurontin prescription that Dr. Francis calls in for me. I eventually fall asleep and rest. I sleep fairly early tonight (10:00pm).

January 20th, 2003

Mom and I pick up my prescription and take it easy throughout the day. I start my oral steroids and have a spinal tap scheduled for tomorrow. I am dreadfully nervous. The Neurontin is out. The samples lasted through Saturday afternoon. I make a mental note to call Dr. Francis tomorrow while I am at it, as my hands are starting to hurt very badly again.

January 19th, 2003

Mom and I go to Mankato, eat Chinese buffet with my sister Lacey and I feel pretty good, just tired. We drive back and I start my IV treatment. I fall asleep half way through. I am so exhausted. I finish the last IV treatment and go to sleep. I sleep until 1pm.

January 17th, 2003

I go to work at 1:30p.m. to set up Citrix, a remote email server, to work from home. Our work IT guy shows up at 3:50 p.m. He sets my computer up and I finally leave work at 5:30 p.m. I go driving and clear my head. I talk to my friend Michael and stare at the city skyline for an hour and a half blankly. It’s Friday, and the girls are coming over before we go out for girl’s night out. I start my IV drip at 7:00pm. After much procrastination and dread that the IV needs to be redone again, it finally all goes well for the first time. I start the drip and I start to get ready. Jen can’t look at me while she is over and I don’t blame her. I say nothing to them about the IV etc. and I tell them to just go ahead at 9pm for downtown and I will follow when I am done. I tell them to put their mind at ease so they don’t have to see me all goofy with wires and IV everywhere. I finish with no problems, flush my IV and finish getting ready. I am so wired. I go down town with the girls and have a great time. I’m not supposed to drink, but I do anyway. I can’t stand being so up. I fell like I am on drugs. I am shaking terribly and go for a drink to bring me down. I lay off the drinks after 3 and call it enough. Michael sends a limousine for us and picks us all up. We stay out all night, after bar, and Mel and I come home Saturday morning. I don't really have the energy for it, but I don't care.

January 16th, 2003

It’s night two of therapy. Mel is with and very helpful. I start to flush my IV and my right arm bubbles up. I try again. Mom calls Accredo Therapy, the IV provider, and they have a nurse call me back. It’s 6pm; a nurse named Deborah calls back and alerts me that it will be 10pm before she is able to come over and fix the IV. Each IV treatment is 2 hours and I know it will be a mere 1:30 am before I get to go to sleep that is if I can sleep. Last night took me 2 ½ hours to wind down from the steroids. I go to the bathroom and break down into tears. I ask “Why me?” and keep telling myself out loud that this isn’t fair. I finally calm down after a few minutes and I go try to sleep. I can’t. I go in the tub for a hot bath until the nurse gets there. At this point, I am livid. I hate needles and really hate life at the moment. She comes over and throws in the IV like a pro and off she goes. I thank God. Everything runs smoothly and I try to sleep. It’s 2am and I finally sleep.

January 15th, 2003

A nurse named Jessica comes to my house. Courier delivered all the supplies earlier today. She shows me the ropes of how to clean and start my IV drips and she inserts an IV catheter. Did I mention I love needles? It doesn’t go in. Imagine that. I think God is trying to get back at me for something. She stabs my right arm and finally it goes. She finally does the two-hour drip and all goes well. No reactions, but after I am wired. Really wired! I talk to my dad on the phone after I am done. He later tells me two days later he couldn’t understand a word I said to him the entire time we talked. I sleep finally at 4am.

January 14th, 2003

My father and Nina leave this morning, still joking about the incident from the night before, and my mom is on her way to see me and to go to my appointment tomorrow. My mother is driving when Dr. Francis’s office calls and asks to reschedule for an appt. today at 12:45p.m.this afternoon instead. It is 10:00am now and I move the appt. to 12:45pm and call my mother to tell her. She asks if I want to wait for her. I tell her that I’ll be all right and will call her when I am done. I go to the appt. before she gets there only because I don’t know if I can keep from breaking down in front of her. Dr. Francis shows me the imaging films from the neck and spine MRI. There are lesions on both consistent with MS and she believes this to be the cause. She lets me digest this. Again my eyes fill with tears and flow down my face. I am so shocked I am not even crying, tearing rather. She explains that I am in the middle of an acute attack. She says she would like to start a steroid treatment of 4 days by IV at home and a 6-day oral steroid follow up. I schedule an appt. for tomorrow the 15^th to come in with my mother again and talk. I leave to go and I set up the IV treatment with Jennifer the admin before I leave. I am in shock again. I schedule the therapy to start on Wednesday, the 15th.

January 12th, 2003

I go out with my friend Michael to talk. In the meantime my dad and his girlfriend try to burn down my apartment. Well, maybe not so much, but when they tried to start a fire in the fireplace, the damper didn’t suck up the smoke and ended up filling the apartment and the hallway, setting off the alarm. The fire department was called, and so was I by two panicking people in the middle of dinner at Morton’s. It ended up being just a bit of smoke and the fire department left shortly after. It helped bring a little humor to the next few days and take my mind off things. I start to think that maybe God has a sense of humor through all of this after all.

January 12th, 2003

My father and his girlfriend Nina drive to be with me and stay a few days. It’s good to see them.

January 11th, 2003

I consciously try not to think about my situation today and during this weekend. I have a follow up appt. set for Wednesday the 15th.

January 10th, 2003

The next day I go to my MRI. It’s a long one, so I brink my Nora Jones cd to relax me. I do fine, but I still can’t think straight. They stop the MRI and inject me (yea! another needle) with dye and we continue. All goes well.

January 9th, 2003

I see Dr. Francis for the first time. She is a darker, foreign lady. I can’t quite pinpoint her accent, but I don’t ask where she is from. She is very calm and has a great presence about her. She talks with me briefly in her office and then tells me to come into the exam room and change into a really hot pair of medical shorts. She tests my walking, my senses, and scrapes my feet, hands, and arms with a broken swab end for feeling. She asks me to get dressed and come to her office for more discussion. She tells me it could be one of three possibilities. 1. A reaction to something I have eaten, etc., but she has ruled this out. 2. A viral inflammation or immuno inflammation such as lupus, lyme disease, or even possibly diabetes. 3. Multiple sclerosis. She talks briefly about the first two and lingers on the last for around 10 or so minutes. My eyes fill with tears. She is sending me to the lab for blood work to rule out the lupus, lyme or diabetes. She also schedules an MRI for my neck and spine with contrast imaging for tomorrow at 11:15 a.m. I go to the lobby and sit and wait for the admin Jennifer to call me. I stare into space already knowing my diagnosis before it has come. I call no one. My phone rings twice and I don’t answer. I wait and she gives me my paper work and sends me down a level to the lab. They draw 10 tubes of blood and I can’t think of anything, at the moment except how much I hate needles. Other than that my mind is blank. Dr. Francis had given me some samples of Neurontin, which I forget when I left her office, so I go back a level to retrieve them. She says they will stop the tingling and pain in my fingertips so it doesn’t hurt to touch things, most of all to wash my hair, but it won’t help the numbness or make it go away.

January 8th, 2003

It’s 1:30 in the afternoon. Dr. Francis’ office calls and sets an appt. for tomorrow the 9^th. I realize that my depth perception is off and I can’t grab things on target anymore. I overshoot my line of sight and my vision is slow to focus. It’s getting annoying, especially when I am driving.

January 7th, 2003

I go to Suburban Imaging in Maple Grove to do my MRI. Akram, my ex-husband drives me; it’s way too early for me to function. Luckily you can most of the time rely on the ex-husband/ex-boyfriend to help you when no one else can (if you are still friends, that is). I bring my Best of Bread cd and the tech (a very nice lady in her 40’s) is thrilled. She asks me to keep it. To her disappointment, I say no. Akram and I grab breakfast at McDonald’s afterwards and I head back to work. My mind wanders aimlessly on my way back to work and I finish the day exhausted from thinking.

January 6th, 2003

It now hurts to put clothes on. It hurts to wash my hair. I cry when I do either and I dread having to do both in the morning. I have tripped up the stairs a number of times and fallen down the stairs twice and landed on my rear both times luckily. My hands are completely numb. I can’t feel anything. I call the neurologist and explain my situation. I ask if there is anything they can do. They call back 10 minutes later and have an MRI (brain scan without contrast) scheduled for 7am tomorrow. Again, my sense of something is wrong kicks into overdrive.

January 4th, 2003

Dr. T tells me to go to a neurologist; my symptoms are out of his realm. I call for an appt. The earliest available appt. is January 28^th, but they put me on a cancel list and will call if anything is open.

January 3rd, 2003

The girls (my friends Jen, Tam, Mel, and Meg) are all together and it’s the birth of Girl’s night out. It’s a long, long, long night as we bond and get to know each other a little better. Again, a much needed break for my worrying. I try not to, but we're just not built without worry in the womb.

December 31st, 2002

My friend Meghan drives down from South Dakota and she meets Jen and I at Fima’s in St. Paul. We have dinner and head to Palomino to meet Tammy and her friends for drinks, free champagne and strawberries and a whole lot of fun. We end up at the Local, as usual, ringing in the New Year all together. It takes my mind of the obvious things that aren't quite in the realm of normal in my body.

December 30th, 2002

I make an appointment to see Dr. T at 3:20p.m.

December 29th, 2002

I get up late today around 1p.m. I am so tired. I procrastinate. I’m starting to get worried. It’s the feeling you have when you know something is definitely wrong and you just don’t have an urge to know what. I go at around 3pm finally. The doctor finds nothing. He tells me to go see Dr. T, my regular physician.

December 28th, 2002

I am home today and my gut tells me something is really wrong. I still have a lot of the same symptoms, but washing my hair hurts and my arms and legs are so sensitive to the touch. It feels like they are asleep with pins and needles feeling. I plan on going to urgent care tomorrow.

December 26, 27 & 28th, 2002

The rest of the week the symptoms worsen and sneak unto me slowly and I decide to go home on not Sunday, but Saturday. I am right now in South Dakota with my parents, and feel it's best if I get back to Minneapolis as soon as possible.

December 24th, 2002

Christmas Eve-what a day to remember. I remember having way too much fun with friends the night before. I remember waking up with my socks, sweats, t-shirt and Columbia sweat jacket. I remember I was cold when I went to bed. I first notice that my feet feel a little tingly. My socks must have been tight around my ankles. I take them off. Sure enough, there are rings from poor circulation. I think nothing else of it. I go about the morning wondering why my feet don’t wake up. I take a shower. As I wash my hair, I realize my fingertips are numb. I think maybe I have partied way too hard since I have been home; maybe I need a lot of water and some more sleep.

Preface...

I’ve always been an optimistic person ever since I hit rock bottom in May of 1996. I swore I would never let anything get the best of who I was as a person and I still don’t. I ultimately try to look for the good in every situation. There is a time in everyone’s life at some point that they think they are invincible and on top of the world. No one can touch them, no one can keep them down, and they love everything in their life, until something on a grander scale changes them. It happened to me.

At the time, I was recently divorced (July), had just sold my house (September) and moved into my new apartment with my dog, Neige (October). I was enjoying my single life and my newfound self once again. I was spending a great deal of time with my friends and most recently, Thanksgiving with my family.

It was the best family get together that I had ever encountered. It seemed as if grudges, once so long and futile, had disappeared. It was the first time in my life that everyone supported and appreciated each other, cared deeply about how or what each other was doing, and most of all were just comfortable around one another even though we are all very different people.

Lucky for me, the calm showed up at just the right junction in my life...