Wednesday, August 31, 2005

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*

Tuesday, August 30, 2005

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)

Monday, August 29, 2005

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...

Sunday, August 28, 2005

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)*****

Saturday, August 27, 2005

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.

Friday, August 26, 2005

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.

Thursday, August 25, 2005

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)

Wednesday, August 24, 2005

August 24th, 2005 - Injections Start


*****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.*****

Tuesday, August 23, 2005

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)

Monday, August 22, 2005

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...

Sunday, August 21, 2005

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.*****

Saturday, August 20, 2005

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.

Friday, August 19, 2005

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!)*****

Thursday, August 18, 2005

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. *****

Wednesday, August 17, 2005

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.

Tuesday, August 16, 2005

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.

Monday, August 15, 2005

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.

Sunday, August 14, 2005

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.

Saturday, August 13, 2005

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?

Friday, August 12, 2005

August 12th, 2005

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

Thursday, August 11, 2005

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.

Wednesday, August 10, 2005

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.

Monday, August 08, 2005

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.

Friday, August 05, 2005

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.

Thursday, August 04, 2005

August 4th, 2005

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

Tuesday, August 02, 2005

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.

Monday, August 01, 2005

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.