Greetings friends & followers.
I’m back and filled with a jumble of hyper emotions. As all Sjoggies do from time to time, I have been stuck in ‘down & out’ mode for awhile now. That included a 5 day stay in my local hospital, followed by several days at home on my back. Now I know that I have declared many times that I think about retirement more & more. And admittedly, I don’t mind the occasional day of getting caught up on talk shows & Dr. Oz. But truthfully, when faced with several days of incapacitation (I think that’s a word)…the truth of the matter is that I love working & would much rather be productive than wiped out. I’m too neurotic when I am sick and focused on how bad I feel.
In addition to my Sjogren’s, I have now discovered that I have a moderate to severe immune deficiency. I mean, it wasn’t a huge surprise..I always knew about the IgA Deficiency. However, my system has just decided to add an IgG Deficiency with it. The more I research these illnesses that plague me, the more I am intrigued at their connections to each other. Apparently, 25% of people with immune deficiencies will develop autoimmune illness(es). Who knew? I always wanted to be the lucky recipient of something..but I had a lotto type thing in mind…not illness. Anyway…as it turns out, the treatment for these immune deficiencies are what they call IVIG infusions. Apparently, one can receive a once a month IV infusion of the replacement antibodies, or they can be administered in a mode that is called, Sub-Q. I think that still involves a needle under the skin with liquid being injected (just on a regular weekly basis instead of once a month). I have now had my first infusion at the local hospital infusion center. Well..I guess I can spare you the ugly details of losing my breakfast and move right on to the week from hell that followed.
What I find incredibly frustrating as a patient with chronic & multiple illnesses is never knowing which thing is causing which thing!! Seriously. We Sjogren’s patients always have a fatigue component to our everyday lives that does not go away. After taking my first infusion, I can only describe what happened to me next, as something akin to being hit by a mack truck. And I am really not exaggerating! The fatigue multiplied to a degree that I can not recall having had since the 1980’s from being treated with a heavy-duty cancer drug (for what I now know was an incorrect diagnosis of Hepatitis C). I suddenly had flu-like symptoms and a low grade fever with chills. As I mentioned before…I found myself trying to figure out what the heck is happening here. Is this a flare? Is this a worsening of all of my chest pains and the pneumonia I was being treated for in the hospital? Or perhaps it has something to do with the Pericardial Cyst that was discovered behind my heart with my recent Cat Scans? Or wait a minute…maybe that infusion did this?? Is this what happens when one gets an IVIG infusion? Of course..I had to go to the Immune Deficiency Forum that I follow & ask those IVIG infusion questions to other immune deficient patients? As it turns out..yes..it is entirely possible and very likely that the infusion of antibodies went into battle with the underlying infections that have maintained permanent residence within SjoDry for so long. Oh my. Is this what I have to look forward to each time I have a treatment?? Yikes! I can only hope that it gets easier over time since this is a treatment that will be required for life.
So that my friends is where and what I have been up to or I suppose I should say, “down to”. But as in most down times… eventually, things look up. SjoDry is up and at em’ again and feeling much better. And I can at least say that the experience of feeling that wiped out, certainly makes me appreciate whatever my “normal” is. Here’s hoping you are feeling you’re best normal@!