Chronic Compromises – Three months in Zombie Land

It is not lost on me that the last post I wrote here was on October 13, 2019. It talked about my doctor’s appointment where I finally found out one of the underlying reasons I have been so sick all my life is a very treatable diagnosis – a gamma globulin deficiency which was putting a strain on my immune system.

However, the first treatment turned into an almost 3-month nightmare. After the first couple of weekly infusions, I would be very fatigued and have an elevated headache the day of and one or two days after. Then I would feel much better and could get things accomplished.

Then I hit a brick wall.

• I was sleeping all the time. Now that doesn’t sound so bad considering I have been an insomniac for years. However, when I say “all the time” I literally mean it. I missed our family Christmas on December 22, because I had another infection and I was in bed. Then I missed the real Christmas day except for maybe two hours.
• I was nauseated all the time and whatever food I could get down would more often than not come back up.
• My IBSD symptoms were also constant with cramps that went far beyond my pain threshold.
• My house was a mess, even more than usual because I just couldn’t do anything. My hubby did the best he could but is working two jobs at the moment. I also currently have no care worker so that meant that not only was housework ignored, I didn’t have personal care as well.
• My vertigo was worse than I think it has ever been and I fell or almost fell several times.
• My “normal” headache became a horrid migraine which I endured most of the time.
• I could barely spend 15 to 30 minutes on the computer before I was too tired or nothing made sense. It also took away my ability to write which is why my blog went silent after a couple of attempts to revive it.

While not all of this can be blamed on the immunoglobulin treatments, much of it can and other symptoms were triggered by the fact I was so run down.

The doctor was away, but my nurse, husband, and I decided that after 10 weeks something had to be done so I stopped. It took about 3 weeks for me to start feeling better. I then saw my doctor and she agreed with the nurse that we should try another product.

I had pretty much decided that I was not going to try another brand but my wonderful nurse let me know this other one was processed a little different.

So the next adventure to the land of better health starts anew.

I have had two infusions last week to a total of my normal 10 ml per week. This Friday I start doing it myself again and I am nervous, but so far so good. I have been exhausted every day up until today. I had a huge panic attack last night but it was probably intensified by the fact I had to take prednisone the last three days for a cough. I find that the pred elevates my moods and the infusion brings me down so they were working against each other. Today that was better as well.

I really hope that this treatment will work and eventually the coughs, infections, even allergies, might lessen or even go away altogether!

Lydia!

Photo by Nathan Wright on Unsplash