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.