Sometimes, I don’t know

What I should be writing about. I don’t want to scare you into thinking that ALL the things that have happened to me -will also happen to you too.

But they might. And that’s why I continue to tell my story. You need to know – that if I made it through – so can you.

Until exactly 20 years ago – I was the picture of health ( with a few exceptions) I was working out- in perfect shape- working full time as a VP Sales and after work teaching fitness classes. I imagined my life as being exactly like this as the years rolled by. I would go walking gently into my senior years – feeling good, exercising, spending time with family and friends, traveling- you get the drift.

On a business trip to Tucson- I went hiking in the mountains one morning before my meetings that afternoon. I felt TERRIFIC! So full of life and good health – nothing was going to stop me. I was woman- hear me roar!

I got home and felt unwell. I developed a rash ( one that looked like leprosy). I was coughing and my chest hurt.

My Dr did a chest X-ray and called me late FRIDAY NIGHT and left a message – one you never want to hear. She said – Carol, call me first thing Monday – your X-ray showed nodules and we need to biopsy for cancer. I HAD TO WAIT THE ENTIRE WEEK-END! (I know you’ve had similar calls). Waiting is a slice of hell.

It turned out to be Valley Fever ( Coccidioidomycosis). I was in bed for 1 full year with fungal pneumonia- and when I wasn’t getting better – Dr sent me to Mayo. That’s when I was diagnosed with Primary Immunodeficiency. I started SubQ daily push ( off-label) immediately. Within about 3 months my Valley Fever was in remission.

Fast forward, about 5 years- I started getting several autoimmune diseases. At first, they were relatively mild. ( I know many of you have autoimmunity with your PI).

Because the IgG therapy was helping me so much – I continued to work and fly nearly every week. I was on a mission- spread the word about PIDD. Teach the sales people how to interact with patients and physicians. Meet our Drs, Pharma and Specialty pharmacies. I loved meeting patients and helping them.

Somewhere – in the midst of all of this – I went for annual skin check – oops – I had melanoma. Next step, surgery on my leg to remove all of it. Then, check-ups every 3 months.

Didn’t see that one coming.

Then, 4 years ago – I was living my dream. I was scheduled to attend ALL of the IDF walks. I had all my travel scheduled. Excited way more than any adult should be.

First trip was to Boston ( oh- how I love Boston). I walked over 15 miles that week-end- including the IDF walk.

The following week-end- I was in Philly. It was also when the volunteers for the IDF were meeting. I got to see so many friends. That week-end- I walked 18 miles exploring and the IDF walk.

During the week- I had my annual flu vaccine ( didn’t want to take any chances with all that flying).

Within 3 days – I could barely walk. I had no idea what happened to me. I cancelled my trip to LA ( thinking I would be just fine in a few days). It just kept getting worse – inflammation attacked all of my joints. This lasted for 6 months and finally, my rheumatologist put me on methotrexate. NO MORE VACCINES FOR ME – NONE! About the same time, I developed a reaction to ALL IgG products too.

So now – no IgG- but I’m taking methotrexate (immunosuppressant). 3 years into methotrexate treatment – it was not working well. My rheumy upped my dose to the highest level. Within 2 months – I was suddenly very ill. I happened to be at the Mayo Clinic when this happened. I was rushed to hospital and immediately diagnosed with Sepsis. For 60 hours – it was touch and go whether I would survive. My medical team saved my life.

Now- 9 months later – I’ve not only NOT recovered fully – in some respects- I’m worse than I was on discharge.

Post Sepsis Syndrome is REAL. And it’s a bitch.

Please – tell me if/ what you would like more information on.

My previous posts about sepsis started August, 2018.

Please feel free to scroll through them.

Later,

C