Day +28: Progress, Downfalls & Gratitude

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 minutes......it 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.

PROGRESS
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.

DOWNFALLS
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.

DUKE IS HOME

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