The Transformation: Part 2
Last updated: April 2023
Well, here I am again...wishing I could be telling you all about a miracle that happened and made me all better. Indeed! That is not what I'm reporting. This seemed to be a good time to write since there is a piece on Prednisone. Like cancer, prednisone is a drug that no one, knowing in advance what it would do to them, would hold out their hand to the Dr and ask for it. The first thing I noticed was how the slightest poke from a stick or a chair leg would constantly become a huge hemorrhaging pool beneath the skin.how do you address having IBS when interviewing for a new job with a new company?
"Stuck in the prednisone trap"
Prednisone...my son was saying that we are stuck in the prednisone trap. We try to avoid taking it due to the horrible side effects. But then we also know it is the only thing that will help. So taking it is our only option. I take it every day. When I have a flare, I increase the dosage, I hate doing it, so I only take the increased dose as long as it takes to ease the symptoms. A vicious cycle for sure. The bruising/bleeding side effect is horrible. I have to wear long sleeves to hide the marks.
Hair loss and headaches
Then there's the hair loss...I am a redhead who had such thick hair. It has fallen out to the point of my feeling like I need to have a wig made before I'm bald. I cry nearly every time I brush it and see how much more has fallen out. I have terrible headaches. Sometimes the medication I've taken for migraines for years helps, mostly, it doesn't.
Weight gain is a huge concern for me. I've always been slender, but since taking the prednisone, all traces of the thin lady are gone. My clothes don't fit. I go to wear stretch pants, which present their own set of issues. During a flare, which for me is almost weekly, the excruciating pain in my arms doesn't allow me to pull my pants down to use the toilet. Sitting down is a real issue too. My legs and back hurt so badly, I feel the best solution would be to wear nothing and stand to pee. Of course, that is not feasible, so the pain it is.
Rolling over in bed, trying to get to a sitting position, and taking a deep breath is impossible. It feels like my chest has been crushed. Each day, with/without a flare, my extremities go thru it. The lupus warrior is out scouting a new spot that it has not yet struck. My arms hurt so bad, and then suddenly, as if a bullet from an invisible tiny gun, a pain in between 2 joints of a random finger, hits me so hard, so severely that I'd beg someone to cut my hand off to rid myself of the pain. About the time I massage and pound and try to manage that pain, it will feel like a stabbing or a gunshot in my back that will drop me to the floor. No one knows why it is so random or why it acts like this, but I seriously know that I can not live my life like this.
The symptom list grows every day. There will be something every day, and there's nothing I can do to avoid it. I have become a recluse, something that is the polar opposite of my life "before" this dread disease. I try to go out, to have some semblance of normality, but I usually end up going home early or suffering miserably till the end. My daughter, who I usually go places with, has started to tell me to stay home; I don't want this disease to rule my life, to change me so much as to have no life at all. I get so bored sitting at home day in and day out. I do not want to become that old lady that never goes out of her her house. I am an active go-getter...at least I was...
How are you most likely to respond when someone offers you unsolicited advice about your lupus?