Monday, August 31, 2015

Day +28: Progress, Downfalls & Gratitude

It's so great to be home.

While sitting around waiting to heal isn't necessarily my cup of tea, I'm so happy to be home. Sleeping in my own bed, listening to the birds fight over seeds in the backyard , having friends do drop offs and chat outside for a few makes me happy.

We had another loss in our CIDP community this week. It's the 3rd passing in 9 mo. that I know of. This may come as a shock to many reading this. We have a disease that attacks our nervous system. At times patients have attacks on more than just peripheral nerves. Vagus nerve: control heart rate and stomach digestion. The diaghram: run by nerves, controls breathing. There is also damage from the medications we are prescribed (steroids, pain meds, anti depressants, IVIG). They can damage our kidneys, liver, brain, cause diabetes....just to name a few. It's breaking my heart to watch these diseases taking away good people who were already suffering, struggling, exaughsted. Please say a prayer for her family and friends.

I feel grateful to have been selected to be part of this trial in an attempt or to halt my CIDP. My hope is that recovery will come with the "added bonus" of nerves healing the damage already done to my body. I did go into this knowing that I may suffer with some or all of the damage for the rest of my life, just hoping that my body is in a healing mood. The goal of the treatment is to halt the disease, everything else is a bonus and blessing.

This past week was better for me strength wise. While I am still numb, fatigued and have nerve pain,
I can tell my strength is better in my PT. The best thing I can do is keep up with my exercise, eat right
and get plenty of rest.

My new physical therapist comes Wednesday to design a PT plan. I have been able to ride 15-25 minutes at a time on the bike. When I got home, 5 minutes was a struggle. It leaves me sore and fatigued the next day, but it's great progress. I am also up to 0.8 mile laps around the block. Hoping to get to 1.2 or more miles in a day.

My white blood cells were back in normal ranges in my labs this week (5.2) but were high when I was in the ER. I redrew labs today to make sure they have come back down. More on that next week.

Had a little setback, with a trip to the ER on Friday morning (by morning I mean 3am). At the advice of the Chicago team, I needed to get checked for possible gallbladder or pancreas issues due to severe abdominal pain and becoming very ill very suddenly. Was home by 8 am and all is well. They think I
had some sort of stomach virus. It hasn't returned so that is the hope anyway. Thanks to Chad and my father for being my ER taxis.


Decided to test out having Duke home. He was a little excited. Enjoy the pics and the video.....forgive my super annoying voice on the video. It's so good to have him home.


Retried to upload video........hoping it works


  1. Awww Duke! Clearly so glad to be home with his human!

    You remain in my thoughts! Love you!

  2. I was thinking of you and there you were this morning! Is Duke a permanent thing or just a trial? Boy is he happy to see Mommy!!!

    You are doing so well, just remember every day, every hour is a progression and you have to be thankful for that. Unfortunately with all diseases comes the bad sides so please, while making you sad, don't let it get you down as that is not an issue for you. All your warrior friends will not allow anything like that to happen to you!! Keep the faith - happy to come by this weekend for some girl chat if you are up for it and can have company....just ping me. Love ya! Virtual hugs! xxooxx!

  3. Sorry all about the video. Not sure why it won't play. I will keep working on it

  4. Steph - SO glad you are home and healing. Miss seeing your face at work, but I look forward to you getting strong and healthy and having you back with us when you are ready (with thick curly hair?! :-)) Glad Duke is there to keep you company. I am sure he missed you!! Lots o' love!!!!!!!!!!!!!!!!!!!

  5. You are one amazing woman....your letters to us, belong in a book of "gratitude for daily living". Your a heck of an inspiration and a fighter and a half. Couldn't admire and respect you any more than I already do. Your a beauty in every sense of the word. Thank you for gifting our lives with your presence, wisdom and friendship.xxxxx