Stranger Than Fiction

I am one very weird science experiment! I have been taking Avonex shots every week since April and overall my side effects have been minimal. On Monday night I took my shot as usual. I often skip the Tylenol/ibuprofen step since I seem to have very little side effects from the medication. After about an hour, I noticed that I was feeling slightly achy so I took a couple ibuprofen. I have found that as odd as it may seem, Extra Strength Tylenol makes my stomach hurt. I know, I know...Tylenol is supposed to be easier on your stomach than ibuprofen. Someone forgot to tell my stomach!

Within a few hours of taking my shot, I began having chills. I have never had chills from the Avonex. Not even once! The makers of Avonex state that when you take the medication over a long period of time, the side effects lessen. Maybe as the amazing opposite girl, mine are going to increase. Who knows? I am just one strange biological specimen!

A note to other MS patients who may be taking Avonex...
After several months of injecting that huge needle into my leg, I read in the paperwork from my pharmacy that it would be easier to inject if I iced the spot first.

Well DUH!!!!!!!

I have spoken to a multitude of people from the drug company. They have nurses and case workers and all kinds of people who contact you. I initially injected at Cleveland Clinic, surrounded by health professionals. Why, oh WHY did not one of those people give me that information? I had to change pharmacies (insurance company junk) to get this little hint that certainly DOES make injecting easier. You would think that would be one of the first things on their To Do List...Inform these people who have just been told they have an incurable disease and will have to be poking a long needle into their leg once a week for the rest of their lives, that there is a way to make it a little easier, a little less painful and certainly less stressful. Just ice the injection site to numb it BEFORE you shoot!!!!!

Recently someone from the drug company called to check in with me and I gave them this information. Low and behold, they already KNEW this and even have gel packs that they will send out to you for FREE for you to use on your injection site. AGAIN...WHY did no one mention this?

So, if you have to take Avonex shots, just call Biogen Idec and tell them you want one of their nifty little gel packs to ice your injection site. Then ask them why no one told you about this from day one. My take on it is, that if they offer the gel pack, they are saying...Hey, this is going to hurt! Well, it does hurt and if you can make it a little easier on us, then DO IT!!!!!

Something else you may want to know...You can buy a smaller needle to inject with. It is 20% smaller than the one that is packaged with the Avonex. Whatever...Why not just GIVE them to us to begin with. The darn medicine is $1,856.00 a month! Can they not throw in a smaller needle for that amount of money?

By the way...it is snowing in Ohio on this beautiful December morning.

"Twinkle-Twinkle FLASH"

(Once again, Blogger will not let me format this post so forgive the weird spacing and squished together paragraphs)

So the Happy Tree is back up again, making me smile through another holiday season. Last year, my Happy Tree was responsible for helping me make it through the horrible days after my first IV Steroid treatment. (See posts from November/December 2006)

[I want to add a note here...I have noticed that some people stumble upon my blog while searching for info on IV Steroids for MS. Please know that my experience with steroids is not the norm. I tend to be "opposite girl" and have different reactions to drugs than most people have. Steroids usually make people bounce off the walls...They make me sleep. Don't let my experience with IV Steroids make you afraid. Everyone is different and they may just give you back your super powers!]

What a difference a year makes. It took me days last year just to assemble the tree. I would hang a branch and lie down, then hang another branch. This year, I assembled it in one short afternoon and had it completely decorated by the next, in spite of the lighting fiasco. I am actually feeling better right now than I have felt since last November. I still have issues...balance, weird mush head and some weird unusual pains, but overall, life is good.

Yesterday, I decided that since it was forty degrees, I should try to get the front porch decorated with lights and garland. Little did I know that it may have been forty degrees out but the wind was flying at 40 miles per hour! This time, I remembered to first plug in the lights to check them. What I didn't do, was leave them on long enough to see if they were steady on or flashing lights. So true to form, I hung the icicle lights on the porch rail, attached the garland and just as the sun was setting, I plugged them into the porch outlet only to discover that ONE STINKING STRING OF LIGHTS WERE TWINKLE-TWINKLE FLASH LIGHTS!!!! All I can say is there is NO WAY I am going to redo it! No way! I will just look at it as one more thing to make me smile. Every time I look out and see that little string of lights twinkling, I will pretend they are laughing and dancing with happiness. They are happy that for one more year, in spite of the MS, I am able to climb ladders and stools to hang Christmas lights. That is something to be happy about.

Yesterday I was telling my sister about them...The way they mock me by flashing. And I started to laugh as I thought about the neighbors, the people in our area who know me and my perfectionism with all things visual. They will see those lights and think...Bless Cari's heart. The MS must really be hard on her. Did you see those pitiful lights she has on her front porch this year? They don't realize that my lights are laughing.

What I am Thankful For...

As the holiday season approaches, I have a huge smile on my face. Tomorrow is Thanksgiving, and more than ever before, I have much to be thankful for. It has now been over a year since my diagnosis, and generally speaking, I have felt better over the past couple of months than I have felt since last November's devastating steroid event.

My precious hubby offered for our family to have Thanksgiving dinner out this year, but I opted to cook. I decided that for as long as I am able, or at least have the desire, I will still cook our Thanksgiving dinner.

So, on this day before Thanksgiving, as I bustle about the kitchen, I do it with more joy than ever before. I have two brilliant healthy children who are blossoming into absolutely amazing adults. I have an adoring husband who shows his love for me in a million ways each and every day. I have siblings who are my best friends forever. I have a beautiful home (OK, realistically, part of it is beautiful...Thanks Jackie...and part of it looks like crap, but I will get to the bad parts and eventually it will all be beautiful again) and I have a wonderful garden filled with things I planted with my own hands. I have furniture that I painted with my own hands and curtains I sewed! I have an identity and joy through my photography and art. What more could I possibly want or need. Yep, Life is good!!!

Woman Stuff

So, if you are a man and you are squeamish about woman stuff, you might want to hit the back button and back your way out of this post right now, before I put images in your head that you can never ever erase. You have been warned!

There is something humiliating about going to the gyne. I dread it far worse than going to the dentist, even if I am having a tooth filled! I mean, seriously... What kind of man chooses a career that has them looking at crotches all day long every day? I mean, even people who work in chocolate factories get tired of chocolate.

I visited my new gyne today. He was the doctor I went to for some other woman stuff back in February. He's a nice enough guy, what I saw of him. After all, he is pretty much hidden behind that all-concealing thin white paper sheet they give us to help us maintain a tiny bit of dignity. His office staff is MUCH nicer than the office staff at my former gyne's office. I fired the old gyne for not taking my comment about an issue I was having seriously enough. Then, when I called his office to ask a question, his "I've got way too much power" nurse scolded me for trying to follow up on my issues. At the time, I was still very fragile emotionally from all the new MS stuff and the last thing I needed was to listen to the IGWTMP nurse get sassy with me.

As I was sitting in the waiting room at the OB/GYN's office, I realized a couple of things. First, someone needs to order a subscription of MORE magazine for his office. I really don't need to see Child magazine or Pregnancy magazine or even Family magazine. I am way past all that stuff. I also realized that some people just don't NEED to be parents! I don't really even feel like getting into that. Just trust me. Sometimes, birth control shouldn't be left up to choice!

OK ladies, we all KNOW what happens at the gyne ...stirrups ...tongs ...glaring lights. I've got an image for you...I'm lying there in the most graceful of positions, trying to maintain a minuscule amount of dignity while my legs are flying high, when what does my gyne decide to talk about? Turkey! Yes ladies, turkey. Honestly, I kept hoping it was an inside joke between the gyne and his nurse, you know like "Hey, watch this! I am going to have this patient in the "position" and then get her to talk about turkey." And if just the talk of turkey wasn't enough, he asked me if I was going to "stuff" my turkey!!!! I wanted to laugh hysterically at the absurdity. I am lying there on the table, pretty much like a trussed turkey and he wants to talk stuffing!!! If you are not howling at this moment, you either A. Aren't a woman, or B. Have NO sense of humor! It was like something from Saturday Night Live!!! I shudder to think what we would have talked about were it Christmas!

Same Hair Since 1976

As I watch the slideshow of my life, I am forced to hysterically realize that I have had the same hairstyle give or take an inch or two, since 1976. LOL (Well, other than those horribly permed 80s, which by the way made my hair look much darker than it has actually ever been.) I am a no muss/no fuss kind of gal and well, no matter how someone cuts my hair, when I turn it upside down and run my fingers through it to blow dry it, when I turn right-side up, it is still going to look the same. That is the extent of how much time I am likely to spend on my hair so...it will probably look this same way when I am 60 and 70. Some things never change...

Back From Cleveland or I Still Hate That Darn Math Test!

The first thing I want to say is, the kindness we are shown by the people who are associated with the Cleveland Clinic & Mellen Center for MS is what keeps me going back. From the Research Coordinator to the nurses and doctors...Everyone.

I make my way through this situation with humor. It is what keeps me going most days. I make jokes about the holes in my brain and occasionally walking like a drunk woman. I play the "UH HUH, Let the Crippled Girl Do It" card with my two dear sisters as they are standing in line at the check out counter reading a magazine, while I (the crippled girl) am unloading the shopping cart onto the conveyor belt.

As I said to the Dancing-Neuro when she commented on me being in good spirits..."It is what it is". No amount of whining is going to make it go away. Of course, I am also fully aware that my emotions could change in a split second. I am also aware that my health could change in a split second. So for today, I choose to be happy that I can still type, I can still use a Rotozip power tool without killing anyone and I can still drive a car on my own. I look at each and every day when I can get up and breathe, walk, laugh, climb the stairs and ugghh, even cook dinner, as a gift. It could all be taken away in a heartbeat. Of course, that is true of any one's life. You could get up one day and be hit by a pumpkin falling off of an overpass and your life and the lives of those around you could be forever changed.

Being told you have a disease makes you feel like you have an expiration date. HMMMM, even milk usually lasts longer than the expiration date. I plan to laugh in the face of MS and do it my way!

Back to the visit to Cleveland...
The Dancing-Neuro got married. It was obvious by the blinding sparkle on her finger. It is a good thing she put on rubber gloves or my eyes would have just followed the pretty sparkle during the entire exam. I wish for her and her groom all the love and joy that my sweet hubby and I have shared for the past 27 years. It will help, if she shares her pumpkin bread with him, but that's another story altogether.

The setup was a bit different this time and I feel it went more smoothly. There was a new Research Coordinator (I liked her) and a new nurse who was very sweet (even though she seemed to think that paying me a lousy $20.00 was going to compensate for the stress of taking that math test. I think not! LOL). Both newbies had a great sense of humor which is totally a prerequisite for me to like you.

I still had to walk up and down the hall like a rat in a maze. (Who can possibly walk normally when you know someone is watching you?) I had to follow waving fingers, poke myself in the nose and try to tell the difference between my own internal vibration (a gift from the MS) and the vibration of a tuning fork pressed against my bare foot. That one was a little tough. I constantly have a low hum that runs under my surface. It is soft and low enough these days that most of the time, I can almost ignore it, unless someone has a vibrating tuning fork stuck against my foot. Then it is a little hard to ignore. I was once again reminded how bad my eyesight has become and tried to bribe my way out of the hot seat on that one. I really do need to make an appointment with a real eye doctor and stop wearing cheater glasses from Sam's Club! LOL

I played the peg-board game, which couldn't really hold my attention...pegs in, oh yeah...pegs out. Then I took the dreaded math test and I don't think I did terribly this time. I think I may have sort of mentally cheated, LOL. I figure, if my lesion-laced brain is smart enough to figure out a way to get results, then I am doing it! Hint to anyone else who has to take this test. Keep your eyes closed and just listen. I have difficulty with staying focused on something if there is any outside stimulation. Closing my eyes so that my brain wasn't getting any input from anything but the verbal cues from the audio tape made it easier to stay focused. I share that tip, because seriously...I feel like what better way to make an MS patient feel sorry for themselves than to remind us that we just aren't quite what we used to be upstairs. LOL Seriously...Can't the great minds come up with a better way to measure our brain function than to make us feel totally STUPID? Here, take this math test and here is the Prozac that you are going to need to get you through the depression of realizing that you can't hold on to a number in your brain for more than a split second!

(You didn't really think I would give away my mental cheating skills did you? I mean, I like you guys, but let's be honest...I want to be the winner. So..OK...There isn't really a winner, but as much as I sympathize with you guys, I am not giving away my super powers. I have had to work way too hard to get them back to be willing to give them away. I shared the closing your eyes tip. For today...That is all you get)

Time to Play Lab Rat Again

Tomorrow, I go for my six month evaluation for the MS drug Avonex biomarker study. I am involved in two research study programs that basically involve blood draws and an MRI. I'm not really thrilled about playing lab rat again. I do it, because I hope with all my heart that the research they gather from we lab rats helps to find a way to help future MS patients.

I wouldn't really mind it if I didn't have to take the stupid math test. I'm not looking forward to that frustration. Feeling stupid is simply not my favorite activity. For a person who has always been relatively good at math, this math memory test is HELL!

I will have to stay overnight at the Cleveland Clinic so they can rush in at 7:00 AM to draw blood, then immediately run off to the lab to play with it. The last time I was there for the study, a French-speaking female came in at 7:00 AM to run off with my blood. I couldn't understand a word she said. My still-southern ears just don't do French, especially at 7:00 AM!

Wish for me that my MRI shows no new lesions!

No News is Good News

I'm sorry it has been so long since my last update. I have been keeping busy with my photography and since there has really been nothing new to report, I haven't added a new post. I am still taking the Avonex shots once a week. I still have my MS weird head and numb face if I sit too long.

I went back to the hematologist and my blood count was normal for the second time in a row, so he released me again. That's about it! Nothing else new, which can be a good thing!

Say it Ain't So...

Just when you think you have things figured out, something weird happens. So as you all know, I went to the blood sucker's office yesterday fully expecting "yada yada yada, high white blood count yada yada, don't know why, yada, more tests yada."

Go figure. My white blood count was not only better, it was normal. Will anyone EVER figure me out? I have been on Avonex for 4 weeks now. In all reality, if anything the Avonex should have raised my white blood count. I'm tired of trying to figure me out and I'm ME!!!!!

(We still made an appointment for three weeks and I STILL had to pay him $50.00. Some things never change.)

MS Ain't For Sissies!

Yes, I did! I used the AIN'T word. Sometimes, it is necessary!

For those of you who have never seen the hypodermic needle that an MS patient has to use to give themselves a shot...This one's for you. The larger of the two needles is the MS drug needle. The smaller needle is an insulin needle. The insulin-sized needle was what I was expecting. The larger needle is what I got! I have to poke that thing into the muscle of my thigh. It is no fun to give them to myself, so I just try to get it over with as fast as possible. From set up to finish it probably takes five minutes. There is no room for procrastination. It just has to be done.

I am still having no obvious side effects from the Avonex shots. I haven't even had the slight headache after the last two shots. I was a bit more active today (I had the shot last night) than I have been most weeks on the day after the shot, so I think I did notice that I became tired a little more than usual today (or it could have just been the heat. It was fairly warm in Ohio today and I was out in it a good bit.)

Nonetheless, I still feel very fortunate that I am not having the terrible flu symptoms that most MS patients get from the medication.

Tomorrow I have an appointment with the hematologist again. My white blood count will be up. We won't know why. We will make another appointment in three more weeks. I will pay him $50.00