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.

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

Is it Live or is it Avonex?

Lab Rat Coordinator #1 called today to have me answer a few questions about my first Avonex experience. I had to rate the Avonex related misery on a scale of 0-10, 0 being no problem and 10 being the worst imaginable. Soon after she gave me the run down on the rating system, she had to briefly take another call. When she returned, she immediately began to ask me to rate from 0-10 certain side effects of the Avonex. I most often gave her zeros with an occasional 1 or 2 thrown in, the 2 being the rating for exhaustion, which I honestly think was as much about my husband and I spending the weekend in NY state celebrating our anniversary as it was about the Avonex, but I had to let them have at least 1 side effect. (We spent the weekend at a ski resort in Findley Lake, NY, returned home on Sunday night and then left for the clinic Monday morning. I had a fair amount of blood siphoned out of me over a 15 hour period and didn't sleep very well, so you decide. Was it the Avonex or was it just life that made me tired? After this week's injection I had no apparent exhaustion at all. )

As I began to answer her rating questions, she started to laugh. I said, you think I don't understand the rating scale don't you? But I do. She laughed again and said that I had told her I was "opposite lady" and that honestly, she hadn't really believed me. She believes me now!

I told her to give the dancing neuro a message for me..."I told you so!"

Number Two

On Monday night I gave myself my 2nd shot of Avonex. Throughout the day I made an effort not to think about it so that I didn't get myself stressed out.. At 7:00 I took my Extra Strength Tylenol (We are supposed to take it a couple of hours before the shot). At 9:00 I headed upstairs, placed the shot and the "extras" (gauze pad, alcohol wipe etc) on a towel, popped on the needle and just DID it! No hesitation, no thinking about it, I just did it. It again, wasn't actually so bad. I did squint my eyes a bit, like I do when I see road kill on the highway, just to keep from seeing the actual needle puncture my skin. Hey, whatever works! It was all over in a matter of minutes.

I again had no significant reaction to the drug. I had a mild headache throughout most of the following day, but again, nothing too bad. I am feeling very fortunate since so many people have such a hard time with the medicine.

The Waiting

After the MRI, we were off on a shuttle ride to the main hospital. You know you are at a big hospital when you have to ride a bus from one section to another. It can't be just any bus. There are colors that coordinate routes to different buildings at the hospital. If bigger is better, this one should rank right up at the top. (By the way, it is ranked among the top 3 hospitals in the United States, which says to me that it is ranked third, because if it were ranked first or second, wouldn't it be in its best interest to advertise itself as being the top ranked hospital in the US or in the top two ranked hospitals in the US.)

The dancing-neuro had given me my walking papers while I was at the hospital, so after dropping my bag of groceries and reading material on the hospital bed, (which by the way was another one of those bad bad inflatable beds that try to rearrange you all night long because it has a notion that you are uncomfortable) hubby and I went to the International something or another place at the hospital where they have all the food. You're still thinking about my bag of groceries aren't you? In the paperwork for the research study it indicated that they would be serving dinner to me from their "pantry". That could translate to many different things, but all I could think of was that they were going to bring me a lunch meat sandwich with mayo on it which I would never ever eat. I packed a few snacks, just in case. I also figured I wouldn't likely sleep much, so I brought reading material.

After dining at the International something or another (maybe Food Court?) we went back to my room, which by the way was the cleanest hospital room I have ever been in. It was almost time for my first shot of the MS medication, Avonex. My nurse/instructor bordered on being a stand up comedian which truly worked out well for me. She basically said, if I didn't get the shot in my leg, she would jab it in for me. LOL I had it in my hand all ready to go and just needed to take a deep breath before inserting it. I told her to give me a minute to get relaxed. It isn't everyday you stab yourself in the leg with a super-sized needle. She stepped back and started talking to my hubby and by the time she looked up again, I was pretty much done. Although the needle looks huge, it wasn't really so bad. Once you puncture the skin, it just feels like sliding a knife in butter. That probably isn't an analogy that everyone will appreciate, but truly, once you get it through the skin it is no big deal. The only thing that bothers me is that little "crwk" sound and feel as you puncture the skin.

They had me take Extra Strength Tylenol a couple of hours before the first shot to prepare for the side effects that may or may not (translate to likely will) happen. The side effects should begin about two hours after you have your shot and may last for up to 24 hours. I took my shot at 7:30. At 9:30 I started waiting to feel something bad. At 10:30 I was still waiting. By 11:00 I was sleepy and just couldn't wait any longer. I took another dose of ES Tylenol, just in case the side effects crept up on me later, then I fell asleep. Several hours later I woke up and just lay there quietly in the dark accessing the situation. Aches? No..Fever? Don't think so...Chills? Nope...I did have a mild headache, but nothing to fuss over. I swear I woke up all night long just waiting for the ax to drop and it never did.

When morning rolled around, they came in to draw blood again and as soon as that was over I was allowed to leave. The nurse had a bit of trouble siphoning out my blood (See Memoirs of a Lab Rat) and while she was trying to coax a trickle of blood out of my arm, a doctor came in and started to speak to me. She, I think, was French. I seriously couldn't understand anything she said except for "Thank you for participating in the study" or research or whatever she called it. I at least got the thank you part. She grabbed the tubes of blood that eventually dribbled out and was off to the lab to play. (She was a very nice doctor and it isn't her fault that my ears don't hear French.)

Hubby came to retrieve me. We walked back to the hotel, had breakfast and headed home. I was a bit fatigued throughout the day and the headache remained for most of the day but that was it!

Just a little side note......
I told my hubby the night before I went to the hospital, that I had a feeling I wasn't going to get the bad side effects. He agreed. We just had a feeling and were trying hard to be optimistic. When I was being accessed by the dancing-neuro, I told her that I had made up my mind that it wasn't going to make me sick. She gave me her best serious look and let me know that yes, I was likely to get the side effects. That most everyone does.

All I can say is...Always the Rebel!

And another note...

I talked to someone at Biogen Idec today. (The drug company) She suggested I use my magical powers to cure something or solve the problem of global warming. LOL Alrighty then....

Magnets and Needles and Xanax, Oh My!

Part II

So, I managed to make it through the IV fiasco with my sanity intact. (See previous post, Memoirs of a Lab Rat) Although, while having a needle dug into my arm, Lab Rat Coordinator #1 and Lab Rat Coordinator #2 realized that they did not have me check off boxes on the consent form giving consent for them to save my blood for future research. So, while a nurse is asking me to clench and unclench my fist in hopes of pumping up a third vein, I am asked to read and give my approval for my blood to be frozen. (Cari on ice!) I asked them nonchalantly if they realized they were asking a person with MS to do two entirely separate things at one time. I'm sorry, but my lesion-laced brain can only take so much. I had already played their little games (run though their maze) and my brain was still tired from the memory math game. I'm telling you...Whoever decided to give that test to a bunch of people with holes in their brain is the DEVIL!

Before the blood letting, I was examined by a neurologist who shall remain nameless, which is only fair since I have to remain nameless. (Afterall, I am just a lab rat.) One hint, she used to wear a tutu. She had to evaluate me as if I were not her patient. P'shaw! I'm sorry, but I took cream cheese pound cake to her on my previous visit. Let her just try and forget me! She did a bunch of tests on me, all of them more pleasant than the stupid make-me-feel-like-a-loser math game. I had to walk for her too, five laps up and down the long corridor of the Mellen Center. I had already taken a Xanax to prepare for the MRI before the walk, so if she had waited a little longer to have me walk, it may have been a lot more fun to watch.

Next on the agenda was an MRI. This time, the MRI was only of my brain (no spine) so it lasted about 25 minutes. The MRI guy (I don't really know what his title is), encouraged me to wear headphones and listen to music to help block out the clanging noise of the magnets. I opted out of that. There is far too much Georgia rhythm in this girl's blood and I could just see me start shaking my groove thang in the MRI coffin and mess up the whole darn thing. I thought it safer to just listen to the magnets so I would only have to do it once. I'm thinking, at only 25 minutes, I could probably do it the next time without the help of pharmaceuticals. But then again, why would I want to? I mean really, if I can ride that X- train for 25 minutes, why not?

Next Stop, The Hospital

To be continued...

Memoirs of a Lab Rat

Yesterday was the big day. I began my Avonex injections. I am here to tell about it, so I think it safe to say, it went pretty well. Since my last blog entry, I agreed to be in another MS research program. The new one is about MS and proteins or something or another that really makes no sense to me, so I won't even try to explain it. All I know is that it required me to have a bit more blood drawn while I was playing lab rat.

Once again I am sporting not one, but two blown out veins in my arm. My veins simply do not like the invasion of an IV. If all you want to do is draw blood, my veins cooperate just fine. But try and stick an IV in them and they start to play hide & seek. We eventually had success, only to have it shattered by 8:10. Since they were going to draw more blood for the research studies, they decided to leave an IV in to make drawing the blood less difficult. Translate...They SERIOUSLY thought they were saving me pain by putting in an IV for the blood draws because I was going to have blood drawn around 5:00, another at 7:20 another at 8:10 and one more the following morning at 7:30. If you add them up, that is four sticks of the needle to draw blood. I told them from the beginning that I didn't mind needles for drawing blood, but they insisted it would be much easier with the IV.

Easier for whom? Let's do the math! If you count all the sticks above, that is four sticks of a needle to draw blood. Hmmm, let's see...It took three stick attempts and some serious digging around under the skin for them to get the IV in. Then, they still had to take it out last night after the last blood draw because it was malfunctioning. This morning, it took two more sticks to get a good vein going for the blood draw because they had already completely used up my right arm trying to make an IV work. That makes FIVE STICKS. So, if they had just taken the blood with a needle as needed, I would have had four punctures. But because they were trying to make it easier, I got stuck FIVE times (six if you count jabbing a needle into my own leg, but we won't count that one since it is not about the blood letting.) Hey you guys, thanks for looking out for me! Next time, listen to me. And to think, they gave MEEEE a math test!

TO BE CONTINUED....

The Day Approaches

Finally, after seven months I am going to start treatment for MS. On Monday, I will return to the Mellen Center in Cleveland to begin treatment. Hopefully, this time I will go to the Mellen Center without being a big cry baby. MS is what it is, and no amount of whining about it or getting sad from seeing others in wheelchairs is ever going to make it go away. I can still walk, I can still talk, so I just need to quit whining and be thankful for what I am still able to do. It's not cancer. I didn't lose a child.

I have a little bit of fear at starting the medication. The last time I took medication for MS, I spent the next three months just trying to get back on my feet. Coincidence or not, my mind still remembers having to lie on my side for two weeks, so in my tiny non-medical lesion-laced brain, there is a connection. This is an entirely different medication. I talked about it in my last blog entry. It is called Avonex. Its job is to help reduce the chances of me getting new lesions and to hopefully reduce the number of flareups that I have.

Flu symptoms are the most common side effect of the drug and they may last for up to 24 hours after receiving the shot, which by the way I wasn't all that worried about until yesterday when I watched the DVD from the drug company. That sucker is big and I have to poke it into the muscle of my own leg once a week. I was expecting a tiny little needle like my husband uses for his insulin. Needles, shots, IVs, blood draws...None of that has ever been a very big deal to me. I just pick a point and focus and it is over. However, it is going to be hard to pick a point and focus when I have to focus on shooting myself in the leg. I feel the tension rising!

(For some reason, that sentence, each and every time I read it, makes me start to sing CCR's song Bad Moon Rising in my head. I see a bad moon a rising, I see trouble all the way. I hope it's not an omen!) I am curious to see how the flu symptom side effects (fever, chills, aches, headache) will effect me. I seldom get a fever. Even when I am seriously sick, a fever seldom accompanies my illness.

I am going to be a part of the bio marker study for Avonex. I will have to complete a couple of tests, putting pegs in holes, walking (and just for the record, you never walk the way you really walk when you know someone is watching you. OK, that was a hard sentence to put together, but you know what I mean, right?) and I have to listen to a CD, all the while adding up some numbers. My ability to hold onto things in my slightly holey brain may cause me a little problem there. If I can see it, I do OK. However, trying to hold onto some number as it slips and slides around in my less-than-perfect brain might be a problem. I guess that is the whole point of the test.

I sort of wish they wouldn't call them tests. Maybe they should call them evaluations or anything besides TESTS. The 11th grader in me who was always good with numbers yet struggled in trig (bad bad teacher) comes sashaying out in her Gloria Vanderbilt jeans, swinging her Farrah Fawcett hair and asking "What need will I ever have for this in the REAL world".

I will also have a neuro exam (again a word that really means TEST) from the dancing neurologist (who I am determined to show that I am not really a basket case about to take a dive off a bridge over raging waters), and an MRI. We all know by now how I feel about MRIs. Just bring on the drugs!

So, wish me luck. I'll update as soon as it is behind me.

[On a side note...I have spoken to many people associated with the Avonex drug over the last few days and they have all been wonderfully kind, knowledgeable and helpful. Score 1 for Avonex!]

$50.00

Today I have another appointment with the hematologist. It is a follow up visit. He wants to check my white blood count to be sure that the white count is, at very least, not increasing. Each and every time I walk through his doors, it costs me $50.00. That is more painful than the lousy blood sucker his office has employed who can't seem to draw blood without administering pain. I am no baby when it comes to having blood drawn. It is no big deal to me. I have had so much blood sucked out of me since September, that I am a pro. Nowhere, not the local hospital, not Cleveland Clinic, not the family doctor's office has anyone hurt me as much as the blood sucker at his office. Irony? I think so. This is a HEMATOLOGIST 'S office. They specialize in BLOOD! For goodness sake, hire a decent blood sucker!

The hematologist has given the OK for me to finally begin the MS medication Avonex. Ah, a double -edged sword. I want to start the medication. I certainly don't want the MS to get any worse if I can help prevent it. However, the medicine itself is a bad boy and will likely give me flu-like symptoms during the first 24 hours after I take my shot each week. Hopefully, with each week I take it, my body will become more accustomed to it and the flu symptoms will decrease. Avonex is an interferon which can cause depression, so if any of you who read this think I sound like I'm ready to jump off a bridge, give me the heads up before I jump so that I can spend another chunk of money every month to buy an antidepressant. I quite frankly, think the two should be packaged together with one drug bill for the month. Here you go Ms. Spano. Here is your Avonex and here is your bridge-diving prevention medicine. Makes sense to me!

On the bright side, maybe all this medicine buying will help me lose weight. How will I have money for groceries after buying all those drugs? Being sick is expensive!

I'm Not Dying Today...

So, yesterday I had another appointment with the infamous hematologist. During my previous visit he wrote a prescription for a few scary blood tests that had to be performed at a hospital. Yesterday I received the results of those tests. Two of the tests were leukemia tests. The results for one of the Leukemia tests was back and thankfully it was negative. Although the results for the second test for leukemia wasn't actually back, (the Philadelphia Chromosome test) the doctor said that based on the other results, he didn't anticipate there being a problem with it. This is all excellent news. For three weeks I have had to walk around knowing I was being tested for Leukemia. Not fun!

There is however, still no explanation for my elevated white blood cell count. The doctor suggested a CAT Scan on my abdomen and pelvis to eliminate the possibility of a problem there. I swear, I am just their science project! I think I will talk to my gyne and see what he thinks of that! Why shouldn't he be in on the fun.

The Mellen Center at Cleveland Clinic called yesterday regarding the research program for the MS drug, Avonex. They are still trying to get everything lined up, but it shouldn't be too long now before I begin the MS medication. Even if they decide they don't want me in the research program because of the WBC issues, I should still start the medication relatively soon. If I am chosen to participate in the research program I will have to stay overnight at Cleveland Clinic the first time I take the medication so they can monitor me closely and do blood work 12 hours after the injection. Avonex is only available as a weekly injection at this time. REALLY LOOKING FORWARD TO THAT!

I just wanted to give everyone an update. Sorry it isn't very clever. Not feeling extremely clever today.

The Dancing Neurologist

OK, I confess. This entry isn't really about my dancing neurologist. I just like the title and since it is my blog, I'm allowed to use any title I want and I want to use The Dancing Neurologist.

Yesterday I had my second appointment at the Mellen Center for MS at Cleveland Clinic. We awoke to a fresh layer of snow and as a result decided to get an early start to Cleveland. We stopped for breakfast at the Waffle House, which in itself was almost worth the trip. Can you say scattered, smothered, covered and capped? If you don't know what that is, you need to find a Waffle House quickly!

I grew up surrounded by Waffle House restaurants. They have only recently popped up in our area north of the Mason-Dixon. I will say this, a Waffle House waitress without a southern drawl just isn't right! ( I wanted to say just "ain't" right for emphasis, but then I thought people would think me an illiterate moron, so I said isn't even though it just doesn't get the job done!)

By the time we finished our breakfast and were on the road, the snow had stopped and the sun was shining. It was a beautiful blue-sky day in Ohio.

We arrived at the Mellen Center much too early for my appointment and as a result we had about an hour to fill. Having spent the last hour sitting in the car, I decided that we should take a walk. Twenty degrees is still cold, even when the sun is shining so I admit our walk didn't last very long.

We stopped in at Citrus, the restaurant in the hotel in which we stayed the last time we were in Cleveland and chatted over a hot cup of coffee before heading back for my appointment.

The Mellen Center is a difficult place for me. When I am at home, living in my own cocoon, I don't have to constantly be reminded of the hatefulness of this disease. But there, at the Mellen Center, every wheelchair, every cane and every walker is like a beacon, a giant neon sign flashing the letters MS right in my face. I tried to position myself in the waiting area in such a way as to avoid the flashing neon signs but one lit up right beside me and caused me to quietly fall apart. When the dancing she-neuro called out my name, I had to wipe away silent tears as I stood to walk down the long corridor to her office. As we walked, she could see I was upset and kindly asked if I was OK. My mouth said I was fine. My head and my heart had other things to say.

The dancing neurologist seems to think I may be dealing with some depression. Seriously, how could I not be depressed? The very me that I am/was, was yanked up and blown apart in the wind like a dandelion. My photography and artwork, the very thing in which I find solace has been stolen from me. Sitting at the computer, editing photos and creating artwork now has to be limited to very small amounts of time. The sitting causes me to have a mushy brain. Since I have been limiting my time spent in the chair at my computer I am seeing some slight improvement. I will take anything I can get.

Sleep has been a challenge lately. I lie awake some nights until two or three o'clock in the morning. Before the MS, the thought of me having an anxiety attack would have been laughable. Last week I'm fairly certain that I had a full blown anxiety attack. It was not fun. It was justifiable. Not only am I dealing with the MS issues, I am also still in elevated-white-blood-cell-count limbo as well as dealing with some unexplainable "woman stuff".

I think I handle all of these changes fairly well most of the time, but once in a while I just have to be sad or angry about it all. I am only human.

The dancing neurologist, while trying to make me feel better told me how there are sixteen year old girls who have an MS attack and their lives are devastated by it forever. She made a point of letting me know that I am 49 and have held it at bay all this time. What she doesn't know is when you are young (and she is very young) that 49 might seem old. But to me, who has a mother who is 86, 49 still seems very young. I still have a lot of living to do. Don't misunderstand, I have no problem with the DN or her youth. She is very bright or she wouldn't be seeing patients at the Mellen Center nor would she have been the recipient of the Sylvia Lawry Physician Fellowship. I already have a great deal of respect for this young doctor. She was just trying to help me put things into perspective. I appreciate her candor.

I went to the hematologist last week in hopes of getting some answers concerning the elevated white blood cell count. Contrary to what I had hoped for, he felt me up again. At least this time I was emotionally prepared for the possibility. And honestly, I have had so many different people handling me over the last two weeks, that I feel like I should be the one getting paid! I won't know any results from the four blood tests that the hematologist ordered until the 21st of March.

There was good news as far as my lesions are concerned. There are no new lesions and the really nasty one in my neck does not enhance in the MRI. There are no new MS symptoms, I am still trying to overcome the ones that presented themselves in November around the time of the evil IV steroids.

Still no MS medicine as of yet. I may get into a research program at the Mellen Center so we are waiting for the blood work results before we start the medication. If the blood work results keep me from being in the research program, I will still be able to start the medication. We are just waiting to see if I can get into the research program before we start it.

I am trying to follow the dancing neurologist's suggestions for getting to sleep faster. We'll see...

All in all, I think I have felt a little better emotionally and physically over the last week. Again, I'll take it!

(I should probably explain the whole dancing neurologist thing. On my first visit to the Mellen Center, during the course of conversation, the dancing she-neuro told us that when she began college she was going to be a dancer. Dancer turned neurologist. Now THAT is a career change! And I am better for her having made this choice. Who knows? One day she may read my blog and a little sucking up never hurt.)

Things To Hate About MS

11. Feeling broken.

10. I can't plan ANYTHING!!!! As sure as you make a plan, that is the day you wake up feeling like crap!

9. Living with the constant fear.

8. IV SOLUMEDROL

7. Now that I know that MS is responsible for the deterioration of my vision it gives me just one more thing to hate about it.

6. I hate that I can't dance. I love to dance. I think I came out of the womb dancing. Having that taken away from me is like suffering the loss of a good friend. It is a huge part of who I am. You just try and hold me still when Twist & Shout is playing! I managed to slow dance with my precious husband at a wedding reception this weekend. Since my left leg now seems to have a mind of its own, it was no surprise at all that for the first time in 26 years I stepped on his toes a time or two, but we managed to laugh it off and just keep dancing. Joseph, you are my hero!

5. I hate when I am out in public and I stumble or lose my balance, that people probably think I have been drinking. I need to have a t-shirt made that reads...I'm not drunk, I have MS!

4. I hate MS because it makes me cry. I'm not a "cryer", I am a "laugher" and now I have to fight back tears every single day. Sometime I succeed, sometimes I don't.

3. I hate the realization that my photography as I have known it, has probably ended. I did a shoot yesterday and when I got home I was so exhausted that I couldn't even carry a footstool up our five back stairs and into the house. One of the things that made my portrait photography unique was my interaction with my models, not sitting behind a tripod!

2. I hate that I can no longer bounce up and down the stairs at our house. I have to carefully maneuver the 39 steps that get you in, out and around my house.

1. I hate that taking a really hot bath makes me feel like a truck hit me! (OK, so I've never really had a truck hit me so I can't be sure about how that feels.)

Update to the Update :)

The word is in from the blood work. My white blood cell count is still too high, so I will have to see the hematologist again. He is so not making me get naked again. At the very least he should have to buy me dinner first!

Update

I haven't updated in a while so I thought I would let everyone know that as of now, I am still hanging in limbo. I had another blood test (CBC) done on Tuesday to see if my white blood count is still wacky. If it is, I will have to visit the hematologist again. I am unable to begin medicine for the MS until they figure out the white blood count issue. It took two weeks to get an opinion on it from my family doctor (something about lost reports) so it has been slow going. I should know later today if I have to see the hematologist again.

I have good days and bad. I still have balance issues and my throat occasionally feels numb on one side. The facial numbness is still there but not quite as bad as it was for a while. I can't sit for long periods because the sitting aggravates the numbness. That explains why I haven't spent much time updating lately. Any available computer time has been spent working on senior photos and graduation announcements.

That is really all I have for now. I'll update when I know about the blood test results.

The Results Are In

My Mellen Center She-Neuro called this morning to let me know that nothing new showed up on my MRI. That is good news! However, she talked a little about "prime real estate" and how my spinal lesion is occupying it. This isn't great news. She said she saw no real point in a lumbar puncture right now, because based on the information she has gathered, treatment would be the same no matter what the lumbar puncture showed. That is good news. She wants to get me started on Avonex. That is good news and bad news. It has quite a few side effects and is a weekly intramuscular injection. I can't start the Avonex until I get the go ahead from my hematologist, other She-neuro and family doctor. She wants to be sure they are all on the same page and that they don't think the elevated white blood count will cause any problems with the medicine. However, once it is in my system it will hopefully stop any new lesions from developing.

I am feeling better. I still get facial numbness when I sit upright, but right now it is at least bearable. That is good news!

Give me a "V"

On Wednesday, I had another MRI. Drugs for the event were provided by my local She-Neuro. I must tell you, Valium is just plain FUN!!! It made an hour and ten minutes in a tomb with a jack hammer seem almost like 15 minutes. Valium is also very entertaining.

One of my sisters called moments before hubby and I were to leave for the MRI. I was a little slow at picking up the phone so the answering machine came on as I was picking it up. Yes folks, there is a recording of me on Valium. I was laughing so uncontrollably that even I can barely understand what I was saying. I was laughing, because even on Valium I recognized how comical it was to watch me sway my way over to the telephone.

I haven't been told the results. (Of the MRI, I know the results of the Valium, LOL) I'm really not in any hurry to hear them. It's not like they will find something and then actually be able to fix it. They will just find something...

AA

While skimming my last two posts this morning I had to laugh out loud. If you didn't know me, you might think after reading those two posts that just maybe I am going to the wrong doctors. I sound like I need AA more than I need a Neuro. All I can say is, right now, whatever gets me through the day (or night). Tee Hee

Another Day, Another Problem

If you read my blog you know that I was up all night last night. It was around 5:30 AM when I actually went to bed. I chugged a glass of Tormenta, a wonderful Chilean Cabernet Sauvignon before going upstairs to bed. I rarely drink, just an occasional glass of wine with dinner, but MY GOSH...I just wanted to go to sleep.

The phone rang around 10:30 AM, while I was still sleeping. It was the new She-Neuro, Dr. Boissy from Cleveland Clinic. I had blood work done while I was at the clinic and it seems everything came back just fine except for, you guessed it...my white blood count is out of whack again. After some discussion, Dr. Boissy decided that March 7 was just too long to wait to get another MRI, so now I am having one done locally on Wed. (Jan 10)

I am really tired of doctors and loud magnetic fields and spending money.

Sleep Won't Come

It is 3:18 AM. I can not sleep. Sometimes when I lie in bed, my mind just will not shut up. I have a million thoughts dancing around in my head. Getting to sleep is sometimes a Catch 22. I need the TV on to go to sleep. The noise of Will & Grace or HGTV acts as camouflage for the many thoughts that are racing through my mind. I set the sleep timer on the television, and most nights I am in a deep enough sleep by the time the TV turns off, that I don't wake up at the snap and pop of it turning off. Not so tonight. Tonight when it turned off, the buzz and sizzle woke me right up. I was not yet in a deep enough sleep to dream past the sound. I stayed in the bed until about 1:00, then painfully aware that I had missed my opportunity for sleep, I stumbled (no humor intended) out of bed and downstairs to the comforting glow of the computer monitor.

The MS has been cruel as of late, keeping me from the very thing I love the most (other than my children and husband of course). During the days of the IV solumedrol event, when I felt all was wrong with the world, I could submerge myself in a sea of photographs, creating art as a way to drown my fear and pain. This last episode of aggravated lesion which began on Dec 27, has often kept me from the computer. Facial numbness comes when I sit upright and a wiggling internal tremor often comes when I sit with mouse in hand, my very solace from the mean disease stolen from me.

Lhermittes sign is a constant companion, an annoying reminder with every forward movement of my head. Sometimes in a moment of laughter or a moment of quiet, I might forget for a split second that my body is no longer mine. Then in an instant, the MS shouts back at me with the strange warm sensation that shoots down my right leg.

Last night, DH and I went to a restaurant on the outskirts of Cleveland by the name of Abuelos. I have decided to let the She-Neuro know that if she has other patients who are suffering from facial numbness, she can send them to Abuelos and tell them to order the Sangria Swirl. Once they have a Sangria Swirl, they won't really notice if their head is numb! Hmmmm, I could use one right now! It is now 4:00 AM. Sleep won't come...

A Little Better and A Little Better

Just so you won't think I jumped off a bridge or something when you read my post titled "Today" , I want you to know that true to my word, I took that day to be mad and sad and then got myself up yesterday and tried to move on. I did feel a little bit better yesterday, though still not really able to take on much.

Today, I felt a little bit better than yesterday, and hopefully I will feel a little bit better tomorrow. Once one of these lesions has started screaming, it is really hard to get it to shut up. It just takes time, precious time. My daughter will be coming home from her trip to London and Paris soon and it seems I have been in a bad way ever since she left. Hopefully, by the time she gets back home, this episode will almost be completely behind me and she will never have to know about it.

My son went back to college tonight, after a long holiday break. I wanted to spend some time with him today, doing what moms do...restocking his pantry for the next semester away from home. I managed fairly well, maybe with a little less lift in my step than usual, but still I managed. We had a good day. I even cooked a homemade meal for him before he left, with leftovers to take back to school for tomorrow. The house will be entirely too quiet now, without his X-Box 360 bumping and banging and without the sound of him playing his guitar.


Sigh.....

Today...

Today I am going to wallow.
Today I am going to stomp my feet and scream.
Today I may even throw things and swear.
Today I am going to weep uncontrollably.
Today I am going to be mad at God for giving this to me in the first place. I know it is wrong to question why, but I am human and I sometimes wonder what I did to deserve this. I even think his stupid golden rod is beautiful. Other people dread its arrival, it being the messenger of fall hay fever. But me, I think it is beautiful. Its sunny gold is magnificent late on a glorious fall afternoon, which by the way, I also love. Others might think goldenrod a mistake. I think it is beautiful.

I no longer want to feel broken, this mean disease chiseling away at bits and pieces of me until there is little of me left.

I want to wake and look forward to the day ahead. I want to yawn and stretch as I admire the sunlight trickling in between the slats of the blinds. Instead, I wake up dreading the day, wondering if the tasks I am expected to complete will be more than I can physically or emotionally conquer. I want to roll over and go back to sleep. I am afraid to stretch. Having a doctor tell you that your most recent symptoms may be a sign of a lesion on your brain stem affects your every thought and every move. What if I stretch too far? What if I sneeze too hard? What if this is the day that I can't walk or talk or possibly breathe?

[The newest She-Neuro from Cleveland Clinic, thinks it possible that my newest problems, the facial numbness, the muffled hearing, the tingling lips, the headaches, the wiggling/bubbling under my surface and the neck pain may indicate a new active lesion on the brain stem. Not good news at all. What if someone had started treatment on me in September, as soon as I was diagnosed? Could this have been avoided? Now I wait again. The Doctors at the Mellen Center want me to have a new MRI. I can't get it for two more months. Which means I won't start treatment for at least two more months.]

I feel as if I have a concrete block tied around my heart. As if I am sinking under water, drowning in fear.

I'm sitting in the living room. The Christmas tree still stands. It is wrapped in crystal garland. Bright, low winter sunlight is shining through the window and the crystal garland is showering rainbows in the living room and dining room. Beautiful rainbows are frolicking all over the walls and the hardwood floor. Usually, they would bring a smile to my face.

Today, I feel like they are mocking me. I will close the blind.

Tomorrow, I will get up, brush myself off and try and go about living my life.

But today...

Today I'm gonna cry.

The Mellen Center Gong Show

I am sitting in the waiting area of the Cleveland Clinic's Mellen Center. I am facing the wall, focusing on a painting made by someone named Marvin. It is very green. It has a goldfish/coy pond with waterlilies and lily pads in the water and a few calla lilies painted in the grass that surrounds the pond and it is huge.

There is a man behind me, talking on a cell phone, speaking a language I don't understand. Occasionally there is a "gong" noise. Maybe it is the elevator, or an alert for the automatic doors, because when building a center for MS patients, you have to assume the doors will need to be automatic. The noise reminds me of the clanging of the gong in the old television game show, The Gong Show. I imagine that as patients are filing through this MS center, some are being GONGED! "Nope, sorry, nothing we can do for you. "Bang the gong Chuck" , and an old and feeble Chuck Barris waddles his way to the gong and swings with all his might. I really hope I don't get GONGED!

I refuse to look around me. I will only focus on Marvin's painting. If I look around, I fear I will see things I can never take back out of my head. Wheelchairs, canes...I just can't think about those right now. There are days when I already have to force myself to get out of the bed. I don't really need the images of people in wheelchairs, a community of people afflicted with MS, haunting my waking moments.

There is a man who keeps hacking and coughing. I don't think he himself is an MS patient. I think he is with someone else. Good grief, there is an entire empty section of waiting area. Why must he bring his hacking within a few feet of us. I am trying to stay healthy here!!!

I'll be glad when this is over with. I know I need to be here but I don't want to be. I don't really want to hear one more person tell me that I have MS.

I want a do-over, a Mulligan. I want to go back. I don't want to be this person. I'm simply not very fond of the me that I am right now.