It isn't about waiting for the storm to pass; It's about learning to Dance in the Rain!!!

I came across this quote the other day and it stuck with me like a black-capped chickadee stuck on a Hot Shot No-Pest Strip! (A story for another day. Thankfully, they now put a protective grid over those sticky yellow strips.)

Isn't that all life is about... Learning to dance in the rain, making lemonade out of lemons? No one's life is perfect. Everyone has their own No-Pest Strips to avoid. We choose how we deal. Some days, I dance in the rain. Other days, I drown in the puddle.

Lately I have been, at very least, splashing face down in the puddle and I really don't like it. It is so out of character for me. I am a laugher, not a whiner. I still get angry sometimes that certain things for me will never be the same. And as if having MS wasn't enough, I am now 50 so you can all imagine what stage of life I am fast approaching. What really makes me mad about it all, is that I am not even going to be able to do this midlife thing gracefully. As soon as I get the nerve to call the doctor, I am going to have to have surgery to remove what little bit of hormones I still have squirting out. Then it's all baritone and facial hair for me.

Just when you want to wallow and be mad at the world for your personal aggravation, you get an email from a dear old friend whose husband is terminally ill, or a phone call from a new "old friend" who tells you about a young mother of two, a four year old and one year old who is paralyzed from a car accident.

Then all I can say is, you better get your fluffy butt up, grab your umbrella and dance in the dang rain!

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!

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

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.

Update

Things are still going well. I have been feeling pretty good for almost two weeks now. I did a senior photo shoot yesterday and had very few problems. I was even able to get up on my short person stool with no problem. I didn't exactly leap onto it in a single bound as I used to, but it wasn't quite the challenge that it was a few weeks ago. Hopefully we can keep the symptoms away for a long long time.

I will not likely be blogging over the next week. My sisters are coming to visit from Georgia. Yippee!!!

You can read more about their visit HERE.

Update

I just wanted to give everyone a little update. Nothing clever, I don't have time for clever right now. I have been locked up in a dark room editing senior pictures for the last week so I am far behind on my every day tasks. My two sisters are coming from Georgia to Ohio for a visit next week and I have to get caught up so that I can enjoy their visit.

Last week was a very good week for me physically. No real pain, no real numbness or any other weird thing that MS does to you. The walk is still not perfect but definitely getting better. I had two doctors appointments. One with my hematologist ( he set me free) and one with my family doctor. My family doctor made an appointment for me at Cleveland Clinic. I can't get in until Jan. 2. If I don't get in to see them until then, it will be four months since my attack. It takes six months for any MS medicine to really start to take affect, which means it will be ten months from the time I had my first diagnosed attack until medication starts to help me. That doesn't even take into consideration that in hindsight I suspect I have had MS for well over a year. I don't know if I am willing to wait that long. Having MS is like playing Russian Roulette. You never know when or where a lesion will happen and if it is in a relevant spot it could cause you to be unable to walk or talk or breathe or eat. Do I want to gamble like that? I feel like a walking time bomb! We have a local MS specialist and I am toying with the idea of trying to see if I can get in at her office sooner than Jan 2. These people are messing with my life here!

So far this week I have had a little pain but nothing unbearable. The electrical shocks kept me up all night two nights ago, this time in my legs. Yesterday I had them in my right hand. I stayed up until 3:00 Saturday morning editing pictures for a girl, so Saturday wasn't my best day, but overall it has been a pretty good past 10 days. I have too much work to do to sit here. I will check in again soon.

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A Better Day

Today was a better day. I didn't have to have any torture today. I still had a bit of a headache but felt fairly well for most of the day. This afternoon I have been struggling with balance but over all it wasn't a bad day. I was able to get some photo editing done today. It has been hard for me to edit lately because of my eyes. I started having trouble focusing later this afternoon and that was my sign that it was time to walk away from the computer. This is one of the things I was working on.

Getting Through Today

I am trying to deal with my MS one day at a time. It isn't always easy. Today is the second bad day I have had in a row. My legs didn't want to do their work yesterday and I was in a cranky mood most of the day.

I slept very well last night, the best I have slept in quite a few days, but I woke up feeling sluggish and heavy-headed. I have a headache and my eyes are pulling. My left eye seems to want to be more blurry than usual. I feel a bit dizzy and my facial numbness is back today. I just want to go and curl up somewhere and watch a movie or take a nap. I can't. I have to go to the hospital this afternoon to have a mammogram. Yippee. I am just going to say it...Titty Torture! I can guarantee you that if a man had to throw his penis on a table and have it whacked with a hardback book to screen it for cancer, scientists would have already figured out a kinder gentler way to do that test!

I am so not in the mood for this today!