Heard from an Old Friend

I heard from a dear friend whom I actually 'met' on an online MS (Multiple Sclerosis) forum. She has been struggling for years with symptoms of MS with lots of clinical evidence, that is, objective evidence her doctors can observe, but without abnormal test results to meet the set of criteria needed for diagnosis. We are in the same boat in this way. The boat is uncomfortable, has no captain, and is going nowhere in particular. We're drifting at sea.... and not coordinated enough to stand up, tie on a life jacket and jump out!

Well, this dear friend just told me that she had a recent MRI and her internist called to say there was evidence of demyelination!! Yea!! Go girl!! So happy for you!! Whew!

Wait a minute....that just doesn't sound right. Her doctor found something awfully wrong with her brain. Evidence of a degenerative disease with no cure. I should not be happy. And I'm not. I'm not happy that she struggles with being in a body that does not work as it once does. I'm not happy that she struggles with fatigue and weakness. I'm not happy that she is an energetic woman trapped sometimes in a body that has betrayed her.

I AM, however, happy that there is a test result for her now which says to her internist, "See? THIS is the reason for all the symptoms I've been reporting to you." I AM happy that her doc has referred her to a neurologist, an MS specialist, so that she will HOPEFULLY get a diagnosis, once and for all. I AM happy that IF this specialist gives her a diagnosis, she can finally, finally get treatment.

So, Yea!! Good luck, and God bless you, my friend!! Prayers up!

Weak in the Knees!

I'm excited to say my 20 year old son, Beau is home from college for a short visit, as he has a break from school. We had a lovely dinner together last night, all 7 of us at the dinner table! It was fabulous! My husband was a goofball, as always, keeping us laughing, and Riley sat next to Beau, savoring our time with him and doing his best to impress and entertain him. We lingered over dinner, but I can't be certain it wasn't because no one wanted to tidy up the table....

I got to bed at a fairly decent time last night, but awoke this morning in such a panic. Instead of waking to my alarm so I could wake David at 6 to shower, HE woke ME up, saying, "Chris! It's a quarter to seven!!" I'd slept through THREE alarms. We rushed around and got everyone showered (barely) and out the door, but it was a disastrous morning.

After the boys were off to school, I collapsed on the couch and realized I was scheduled to work at 11:00 a.m. If I'd have had the energy, I'd have cried. The thought of getting into the shower myself and drying my long hair and even sitting to apply my make-up overwhelmed me. So, I sat for a bit, and worked myself up to prepare for work.

It was at that moment I realized that the fatigue I had was what kept me from waking up to my alarms. I was so dreadfully fatigued my alarms didn't rouse me. I've felt this before, many, many times, and wondered if one of my 'episodes' was beginning. Before I got into the shower, I went into my bedroom and set an extra alarm clock for tomorrow at 6. I really dislike the sound of this alarm, so I never use it. I will need it tomorrow.

After my shower, I sat again, and then went into the bathroom to blow dry my hair. My hair is curly, but not pretty-curly, or beautiful-curly, It is dysfunctionally curly! I have to blow it dry with a round brush, or I run the risk of frightening small children. So I began my routine and immediately needed to sit. My legs were trembling. My weakness was returning. I had tried to dismiss it in the shower. Now there was no denying it. I got my stool from the kitchen and finished my hair.

I rested some more and got out my bag of magic tricks. I slapped my war paint on and did actually start to feel like I could last the day at work. It's not how you feel, dahling.....

Work was fine. It was busy, but I'm able to sit. We're in fact nearly chained to our desks. I brought some fruit and protein snacks with me so I wouldn't have to walk to the cafeteria. The time flew.

Beau dropped me off so he could use the car today, being home from school, and I was SO glad to have someone pick me up. The walk to the parking lot would have been daunting.

So, the fatigue is back, and my leg weakness is setting in. I guess the question now is whether I'll get better quickly, or if this is going to turn into an acute episode of...whatever it is I have. Can I get through it without high-dose Solumedrol? Would I want to try?

I also am wondering what doc God has in mind for my treatment. Now that Dr. B is retired, who will care enough to pursue my case? I wonder what plans He has for any diagnosis for me.  I wonder if He is proud of the faith I have in Him. I do. I don't doubt for a minute that He will take care of all of this in His time. I know He loves me and I know how very lucky I am to be as healthy as I am. Working at the hospital helps to give me such perspective on how truly blessed we are.