My Life as a Zebra

22/08/2025

I hate rough vampire days. I'm feeling pain and lethargy in a big way. Hope tomorrow I will feel better.

02/06/2025

Yeah, I got married. Boo, I got sick. Yep. My life as a Zebra means that stress, being busy, seeing friends, family - all those social things make my immune system go on vacation. So two days after the wedding I got a sore throat and lost my voice a bit. By Friday I had a lung and sinus infection. Thankfully I have meds on hand over the weekend. I went to urgent care today. I'll feel better soon and still delighted that I got married!

27/05/2025

Just married the wonderful man who has helped me for the past 13 years.

29/04/2025

So, I'm getting married in a few weeks. My fiance and I got out license today. Can't wait to see friends and have fun.

Lately my life has been busy. I have doctor appointments in the morning, work in the afternoon, then meetings and classes in the evenings.

Today is my vampire day. I'm waiting for my nurse to arrive. Then i have a 4 hrs of infusion. After that I nap. Then dinner and the evening with family.

21/03/2025

One.More.Day. ❤️

06/02/2025

I really miss having an Allergy, Asthma, Immunologist Doctor in my area.

Pulmonologist not available. Immunologist can do anything by e visit...his office is 3 hrs away. Now at the general clinic where they can't even assign me a MD just to get checked out because I'm sick and not breathing properly.

01/08/2024

08/06/2024

When I was diagnosed with CVID I was married. During that initial phase after diagnosis my husband left me. He couldn't handle it.

A couple years later I met a man who my medical problems didn't bother him...as he was more interested me, my heart, my personality. We've been together 13yrs now and this spring he proposed. We'll marry next year with family.

22/03/2024

I find it interesting how I bounce back from some infusions without any problems and other times I have a rough infusion and need to hibernate in a cocoon for a day before I feel okay again. Today, it's all achey, bedraggled and listless with my fingertips even hurting. Hmm...

29/02/2024

I have a very sore throat again, like it was in January. So went to see doc today about it. He thinks I have a virus- no bacterial infection at this point. So he is prescribing an antibiotic for if or (more likely) when I get a subsequent bacterial infection. For now it's vitamin C and lots of fluids.

I so hate this constant battle of fighting viruses.

16/02/2024

Today I took my first injection of Tezspire. No reactions. I guess we will see how effective it is verses Xolair on my allergies this spring.

31/01/2024

Saw my pulmonologist today. I'm still recovering from whatever hit me after New Years. I'm still on a prednisone taper and now have thrush. I saw urgent care on Monday to get meds fir the thrush.

My pulmonologist is taking me off Xolair as I may have developed a resistance to Xolair and it is no longer effective. She wants me to try Tezspire in two weeks.

She also is referring me to UC Davis Medical Center to see an asthma specialist. She hopes that doctor can know something else to try so 5hat I can breathe better.