I Feel Things...

There are days when I don't feel great, for whatever reason...but I make a conscientious choice not to acknowledge it. I choose to say "I am fine", even when I feel less than fine... Even when I feel like I will break if I have to spend one more sleepless night wondering where this will all eventually take me. I say I am fine when I feel like an elephant is sitting on my head. I say I am fine, even when I have to struggle to make my left leg keep up with my right. I say I am fine, even as my face is tingling with numbness. I say I am fine, even when I get that weird choking sort of feeling in my throat. I say I am fine because I don't want to be THAT person who wallows. I don't want to be the person who no one wants to talk to because they will once again have to hear how lousy they feel.

There are things. Things I feel, but never say.

I work very hard to stay in an emotionally happy place. I can't change this. It just is. I wish it weren't, but it is. I wish I could get excited about seeing my family who lives 600 miles away without wondering if they will be scrutinizing me, looking for tell-tell signs. I wish I could go to a family reunion without people saying "You look good" which really means "you look good for someone who was diagnosed with a lifelong disease". I wish I could spend an entire day playing with my art on the computer, bringing a faerie or an angel to life without physically paying dearly for sitting there. There are a million other things I wish, that I won't say out loud.

I have MS. I have no choice about it and the only choice I have in regards to its progression, is to put my faith in the drug company. I don't have the option of simply making lifestyle choices that could possibly have a huge impact on my disease. I can only hope and pray that it doesn't have its brutal way with me. I have no real control over it. I just have to hope the Avonex keeps it at bay.

I feel things...Things I NEVER say out loud.


(Even though diet isn't a major factor for MS, a good diet and exercise certainly won't hurt!)

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.