More Than the Number

CK is oddly still higher than I would like- still in the 900's. It was also in the 900's when we left the hospital which was a little over 2 weeks ago. I am not sure why this is but I feel good and need to wait it out. I really don't know what my baseline was before all of this but normal is 23-300 or so. As I try to ignore the numbers I instead focus on the fact that I can once again see some definition amongst the free flying flab. So I am gaining muscle along with some needed holiday fat and surely don't miss my old hairy Italian self.

Also, ovaries are still working:)

Being able to hold up my part a little better during pool wrestling sessions with Graham has brought back some good memories.

Since I didn't get around to a holiday card this year...here is one for you now.
Cheers to a great New Year!

Energy

I am pleased to report that I have energy! I don't need to take a nap in the middle of the day and I can actually stay up past 9pm. My workouts are actually enjoyable and I don't get slammed with fatigue after them. I notice such a difference...My muscles are still weak of course but I can tell that it isn't weakness from active Myositis. It is weakness from muscle loss/damage that can hopefully be built up. Going to physical therapy was pretty exciting since I was able to show off my improvements. My balance is much better as well.

Graham is very intrigued by my bald head even though he doesn't really see it. I think we will do some Henna on it soon.

I will do a CK today and hopefully get good news. I have waited a bit to let things even out and am trying to focus more on how I feel instead of what the numbers say.

Moving On

So I was looking back and realized how much Plasmapheresis and Rituxan really did help me. There was a point when I couldn't get out of that chair, when I couldn't walk alone or roll over, when I would fall continuously. I never documented that phase and never want to revisit that 90 year old body. That is why I went forward with HiCy.

I do not know if this will put me in remission and for how long. I do not want to think about it actually. I am done being consumed with health and ready to move on; to experience life instead of watching it pass me by.

Everyone has something it seems and all I know is that pushing to get the treatment you deserve is your right. I am so much more thankful now. I started this in such denial, not realizing that running isn't the goal anymore but just functioning. Step by step, day by day.

Having a supportive family and community has been critical. Your positive energy wherever you have been has helped more than you know. Now let's talk about something else!!

Welcome Home!

Strength Comparisons - 3 Weeks After HiCy

Art Therapy

"This is the war between the white blood cells and bacteria. Don't worry the blood cells will win. Get well soon." Thanks Adrian!


"This is a picture of Rapunzel. Get well soon." Thank you Ellawyn!


The latest saber-toothed tiger from Graham.

Rollercoaster Continues

Good to be home to clean air but we were a little disappointed leaving the hospital to find out that my CK jumped a bit from 658 to 910. All the nurses say not to worry since counts fluctuate around after treatment and to wait it out. I am a little concerned that we were tapering from 15 to 10mg of Prednisone and now are going to sit tight at 15mg.
Coming home to an empty house was not ideal, but I will take the time to rest and go through the mounds of papers in my office. I won't do too much holiday prep since I need Graham's help for most of it. When Granny started to explain that Mom took a new medicine to help make her stronger, he replied, "Will she be able to run?"
Slowly but surely Cracker Man.

Home again, home again . . .

Walked in the door about an hour ago. Sure is nice to be home.

Jen spent her last morning in Baltimore visiting IPOP for blood work and getting her Hickman line taken out. She is getting to be such a pro at this that I spent the morning loading the car up with our stuff. The MRI they did earlier in the week didn't show anything new, Jen might have some more detailed information on that. Her white blood count was over 8000 and her platelets were 70 something - high enough that she didn't need a transfusion before the surgery (removing the line.)

Thanks to everyone for sending emails, phone calls, cards, boxes, and all that good stuff! She is upstairs now unpacking her bag and jamming out to the Allman Brothers, which is a good sign!

Going Home Early

We found out today that we could be discharged from IPOP today since my white count is now 2230!
I still have to go in tomorrow for an MRI of the brain to double check some calcium deposits they found in the CT of the sinus. Friday we get some final labwork and some platelets before I get the line out and off we go. Counts should be in the normal range by Friday for sure.

So for those that are thinking of doing this treatment, I must say that the hardships are few and benefits great. Aside from one night of vomiting, one night of a high fever, and one night of some joint pain, it really was not as bad as I was expecting. We will still have to take precautions to stay healthy as one would with a newborn.

We can't wait to see Graham and be together getting ready for the holidays. I did this for you little man!


I hope everyone has a simple and peaceful holiday with lots of singing and dancing!!!

Day 13 IPOP

Today we got more good news.

Firstly, my white count is steadily rising and is 470 (doubling almost every day!) Dr. Brodsky said today that it should jump pretty quickly in the next day or so and we may be out of here by the end of the week! It may get tricky and actually be early next week since we wouldn't be able to remove the cathetar on the weekend. Also, my CPK today was 658! It has not been below 1000 in almost 2 years. This again is the indicator of my muscle enzymes seeping into my blood. So the low numbers means the inflammation is indeed going down!

There have been small changes that I have noticed in my range of motion. The left leg hamstring definately has improved and lifting my arms outstretched from my side to above my head is surely more fluid. The mental fatigue/fog has lifted. Rebuilding the muscle damage will surely take awhile, but now I have some of the energy back to climb that mountain.

Hopefully we will be mask-free soon and the joint pains won't be too bad.

Well the joint pain has started now in the evening as expected in the hip area.