Denial is wonderful isn't it? Last night seemed like a hot tubbing kind of night. DH turned the heat up on our relaxing backyard luxury, and after dinner the littles, DH and I piled in....

Ten minutes into it, I feel like I've been drugged I'm so tired, and the dizziness slams full force, and the feet burn more, and my chest hurts worse.

I finally give in and come into the house. I lay on the bed because I feel too weak to do anything else and realize my legs are tremoring. 

I feel so violated by these diseases. MS has come to my body uninvited, and violates me day after day after day. The tiny joys of life that I never thought anything about are being stripped from me. 

Pity party much? Why yes, thank you, I'll take a Olympic swimming pool size of pity for myself thank you. And, because I'm on call I can't take my full dose of Gabapentin because it's sedating. So, I get to stay up with my burning feet and chest pain all night long. I layed in bed wishing to get called in so I wouldn't be lying in bed awake all night. Being busy at a birth would distract me from all of this.

After twenty minutes or so of this I finally succumbed,  it's time to do what I like to do least in life, which, is ask for help. DH, will you rub my feet? Rubbing them doesn't actually do anything that changes the burning or aching, but it distracts from the burning and aching. So, he rubbed my feet for about 15 minutes. Then, I called my littles in and asked them if they would rub my feet, and they did, and rubbed lotion on them, and put socks on them. They filled up my water bottle, and just loved their mama who is feeling like a failure, and impotent.

How have I been SO blessed?

Feel the burn...

Found out today that I was taking double the dose of Gabapentin that my Neury wanted me to, and it still wasn't doing the trick.

So, medication numero 7 has just been added to my daily routine. I was feeling so disheartened by my symptoms. Dizziness, loss of coordination, burning and pain. And, knowing I couldn't see my Neury for FIVE MONTHS I was feeling dejected and defeated.

After speaking with a friend today I decided that I deserved better care, and needed an expert in Multiple Sclerosis treating me. So I opened my laptop this afternoon, and within a couple of minutes found Dr. Charles Smith, a nationally renowned expert in MS at Scripps in San Diego, CA. And, he will see me in two weeks, not five months!

Truly in the fog and frustration of this whole experience I feel so blessed right now. I must recognize the nudge I felt in Dr. Smith's direction. Sub-optimal care is not acceptable when you are dealing with a diagnosis like this, and now, I won't only get ok care, I will receive expert care.

So, two more weeks of burning and pain in my feet. Two more weeks of dizziness, and clumsiness at the gym. Two more weeks of chest and hip pain. He may not be able to solve it, but he will have a plan for my care which is so much more than I have now.

I also found out there is a name for the crazy jerky movements I make when I'm asleep. I found it in a book from the library about MS. The movements are called Periodic Limb Movement Disorder, they only happen during sleep, and you usually don't know you are doing it, but partners usually tell you about it. It described in perfection what has been happening. DH woke me last night and said did you notice that. Notice what? So, as I was falling back to sleep, I tried to pay attention, and sure enough as I started to fall back to sleep, my arm jerked, my leg jerked, and my foot jerked. I guess I'm a real JERK!! Snort, snort....

The long and short of it, learned something new today, and YAY ME, won the Specialist Provider lottery. 

Jenn