My Life as a Zebra

12/07/2026

05/07/2026

"Take a treatment." I was told this morning. I hate those words just as much as I hate taking nebulizer treatments. I grew up taking treatments. Can't play..need a treatment. At camp every 6 hours..take a treatment. Can't go to school, needed treatments all day... and so on. Sometimes I felt like my life revolved around taking treatments, coughing up mucus and postural drainage. Yuck. Then after the treatments are the albuterol jitters and that nasty taste in your mouth. Ugh...it goes on and on. Can you understand why I hate taking treatments? Do you?

I wasn't diagnosed with CVID until age 39. Sine then my asthma and lung infections have been better controlled. I think I even went a year with only one lung infection- which for me at times was an ongoing experience.

So this morning I took a treatment. Then I took some tylenol for my asthma headache. I cleaned my aching ears out because they get waxy and itchy from whatever is bothering me. O, and I still wheezing. Sigh. Dr tomorrow?

05/05/2026

This is so normal when you have CVID like me. I'm on an antibiotic for an abcessed tooth, then along comes the thrush. Yeah. That living like a Zebra there! Sometimes. I hate all this.

17/01/2026

So I'm feeling really tired this afternoon. I'm wondering why I'm so tired. To me, I haven't really done much, but my husband thinks otherwise.

So my morning included getting up an hour earlier than usual. We drove an hour and a half to see my husband's doctor. Then we drove home. I went to the pharmacy to check on a medication. Then I used the hedgeclipper and helped clean up for about 20 min. Then I sat on my but and played on my phone. Oh, I also finished darning in ends on a crochet beanie I finished yesterday.

So why am I tired? Did I over do it again? Am I starting to crash again?( I'm 5 days from my ivig that I get every 14 days)

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.