We work hard to research and understand our diagnosis(es). We join forums, we search high and low for a compassionate physician(s) to treat us. I think for me and maybe many of you, we are trying to grasp at maintaining some tiny bit of control. I am not good at giving up control to anything that dictates how my average daily living is executed, nor for anything that robs me of my daily quality of life.
For the last three to four years, I have tried to learn about this probable (and then concrete) diagnosis of Sjogren’s Syndrome and everything that comes with it. For many years I have known that I had an IgA Deficiency (Immunoglobulin). I further understood that it was the culprit of my many childhood respiratory illnesses, that ultimately resulted in having 2/3 of my right lung removed at age 14 y/o, as well as all of the many infections after that age.
I’ve never questioned that and have just (as they say), rolled with the punches. Nevermind, that I felt like Bo Bo the Inflatable Clown getting knocked down every time I wobbled to get up! But this past week can surely qualify as a “slam dunk”. Bo Bo is down! One of the smartest decisions that I ever made (a few weeks ago), was to make an appointment with an Immunologist. https://sjodry.wordpress.com/2013/04/10/hopeful-and-smiling-for-a-change/I am not sure why this idea never occurred to me in 53 years. But I finally did it. When Dr. C showed a real interest in finding answers, I was thrilled (almost weepy in fact) . I did not mind the boat load of bloodwork that was ordered; the CT Scans or even the inconvenient 24 hour urine collection (you know how many times we Sjoggies are up all night). Guess that it never occurred to me that I might not like some of the answers I would get from all of these tests.
The first right hook that Bo Bo took (aka SjoDry), was a call from the hospital telling me that the Chest CT Scan with contrast, had been changed to a scan without contrast due to some of my bloodwork results. I didn’t even know what a GFR number was or that it had to do with my kidneys. But apparently, SjoDry is in the 3rd (moderate) stage of kidney (what do I call it, dysfunction or failure)? What?? Surprise, got cha SjoDry.
Next, as I do with all of my doctor’s visits, I requested a copy of all of my labwork results. The nurse said that she would send me a copy of what they have received so far, though some tests are still pending. Imagine my surprise this past Saturday, when I opened my labwork results and discovered yet another Immunoglobulin Deficiency (IgG) to go with my IgA Deficiency. I believe that this deficiency combo is referred to as CVID ( Common Variable Immune Deficiency). I have not officially heard this diagnosis from my physician’s mouth yet, nor do I know what treatment will be prescribed. Of course, I know a number of Sjoggies on the Sjogren’s World Forum who also have these immune issues along with their Sjogren’s Syndrome. I have followed their discussions about IVIG (once a month Immunoglobulin Infusions) and their $ 6000 – $ 10,000 price tags per infusion, with a sympathetic heart. Now, I am following it with a heart that feels like it was just launched into Tachycardia.
Of course some well-meaning family and friends always say, “Don’t panic”. Hmmm. At what point do I allow myself to panic? Is it when I realize the full mediocrity and limitations of our insurance. Or what those types of medical treatment costs could mean to my husband and I, especially if they are not covered by said mediocre insurance. Is it when I lose my ability to work and am forced to apply for disability (a choice that I desperately do not want to ever have to make). Yes, this is a scary time for SjoDry. At the moment, I am not even sure how to process it. Even SjoDry’s sense of humor has taken a serious body slam.
At the same time, I know that all of it is beyond my control, whether I like it or not. I have always tried to have an attitude of ” why not me “ in thinking that God chose me for a reason and it must be to help others by sharing in this uncomfortable walk of poor health. I have always thought that helping others is one of the most therapeutic things that I can do for myself. You can’t buy the wonderful feeling of helping others. Of course, my efforts at helping others usually involves an infusion of my wacky sense of humor. And that my Sjoggie Friends, is free.
So this is SjoDry gulping my usual liter or two of water and getting ready for round 2.