April & May have been busy. We've put our house up for sale (still waiting for an offer) which involved a ton of work. I think I said last month in my post but I'll say it again, when you are only able to survive day to day, things get pushed aside. Our house sure did. It feels so good to be able to see it how we always wanted it to be.
I've been able to go on walks with the boys, play at the park, keep up with house work, do my job, grocery shop and more!
My body is still healing but I've never felt better. How I feel now, was only a dream a year ago. This is what we all hoped for and dreamed could be a reality.
We are finally making progress with our oldest son. He really struggled with me being ill and him being cared for by everyone else.
He still has his bad days and moments but it's getting better and better the more he sees that mommy is getting better and better.
Next week is a big week for me. It will have been one year (ONE YEAR) since my last IVIG treatment! I never thought IVIG would no longer be in my life. I thought that life was going to be that way forever. I thought that the "red weeks" were going to be a part of my families life forever. I thought that life was going to be that horrible cycle of sickness.
I still can't believe it! This is like winning the multi-billion dollar lottery of life!
The weight/gravity of these past years have started to creep up on me emotionally. When you're chronically ill and facing uncertainty, parts of you turn off in order to survive. I turned off, so did my husband. We are figuring out again what healthy looks like for us, for our family.
Symptoms I'm still dealing with?
-numbness in my toes
-muscle strength (I try to do more than my body is ready to do).
-insomnia (my brain won't shut off at night, I keep thinking about what needs done, what still to do, what could happen...).
Besides that, not much else to report. I haven't seen a Dr. since a cold I had over the Winter! Want to know if HSCT works? Look at my insurance history for the past year, you'll see IVIG, HSCT, PT, then nothing! Absolutely nothing. It's amazing.
I'm headed to Chicago for my one year Followup, June 1-3. I expect that I will be done taking my last medication, I expect them to say I'm still in remission, I expect Dr. Burt & Dr. Allen to say I'm doing great!
Yahoo!!!
2 comments:
Thank you Lord! What a miracle! So happy for you and your sweet family! Happy almost year birthday! Praying that the Lord would restore the years that you endured. Bless you!
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