Living Daily with Chronic Invisible Illness

Myelofibrosis and Fibromyalgia

Dealing with Fibromyalgia and taking care of your spouse who has Myelofibrosis can be complicated, but taking things one day at a time; one moment at a time, is the best approach. 

Seven years ago my husband was diagnosed with MDS-Myelodysplastic Syndrome. Four years into that, a bone marrow biopsy changed the diagnosis to include MF-Myelofibrosis. This has been quite a road we’ve been on! Our family played bluegrass Gospel music through most of those years. Click here for more info on our family band.

Two years ago, talk of a Bone Marrow Transplant began. A failed clinical trial in 2019 and Covid-19 later, and we are now on that path. 

On June 14, 2021 he began Chemotherapy to prepare for the transplant. It was a rough week, but honestly, the week after and the week after that has been worse.  Today is July 3-18 days after his first dose. I am currently sitting in a Cancer Hospital in the city while my husband is being treated for Neutropenic fever. We have been here for 3 days so far without an end in sight.

(Being a holiday weekend, I made arrangements for our oldest daughter to take care of our youngest three still at home. She is planning to make as memorable a weekend as possible for them.) 

My husband is still running a low grade fever and coughing non-stop. They have tried everything. He has two inflamed lumps under his arms they have been treating with multiple antibiotics. He is worn out, constantly needing transfusions and wanting to be at home. My heart hurts for him. I fear this is going to be a long summer…

As a Fibro sufferer, I have had to really take care of myself through all of this.

Easier said than done! 

I need to eat healthy at the cafeteria, walk the halls often, rest when I can, and not let the stress of concern affect me. I have to give each little thing over to God and take it day by day. It takes practice, but it is the best way for me to manage the pain I constantly have in my joints and body (an occasional Aleve helps, too).

I always think that how I feel is nothing compared to what my husband is going through. While this is true, I still have a medical condition and need to take care of myself so I can take care of him.

He needs me to help him because I need him to help me!

One day at a time; one moment at a time. 

That is my “road to transplant” motto.

Blessings to you-The Fibro Momma of Ten

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