- Personal Health Information & Self-Help
Who Would Have Guessed?
It's in Your Genes
It Was a Shock
When I started my Battle Begins hubs, I was focused on my diabetes. Imagine when a foot issue took me to ER and then to a PA (physician's Assistant). My sugars were still crazy, my guess would be in increase in insulin.
Not what she suggested at all. She suggested I might have lupus. I laughed. I'd been tested for it in my late 20's be cause I have Raynaud's Syndrome a major symptom of lupus. It came back negative. What I didn't know is if you are not in a flare up, it usually does. No wonder my doctor at the time was scratching his head. He also noted I had a rash on my face. I replied most of the time.
So for 51 years I have been undiagnosed. We ran a battery of blood work. T.he waiting began for the results. I had to wait a week and a day
The Results Are In
The New Was Bad
The test for lupus came back really bad. My A1c was 14, it should be around 6. And my kidneys are in trouble.
It took a minute for all this to sink in. I have many symptoms for lupus. When I looked them up it explained my entire life. Yet I still test negative. Bring on the rheumatologist, they are specialists in lupus.
Yes, I will see an endocrinologist for my blood sugars. I am writing down everything I eat. So, even if I wanted a chocolate candy bar I'd write it down. I chose to skip buying it altogether as I knew I'd only end up angry with myself in the long run.
No, I cannot take ACE inhibitors. They give me dibilitating headaches. Where if I blink, I cry. And Lord forbid I should try to move. I cannot live my life as a vegetable.
I now have a list of all my med allergies and what my reactions to them were. Hopefully I will find some relief.
Sharing the News
I shared the news first with family and friends. It was hard as I don't like being a burden to anyone. I also have trouble asking for help. I tend to be very independent.
My daughter is willing to donate a kidney. We are not there yet. I hope to put off getting there. My boyfriend really stressed out. He is calmer now. The rest of my family is taking it in stride. I am keeping them updated on what I learn as it pertains to them.
Next came the group from my Bible study on Monday nights. Immediately one of them said I had to meet Brandy at church on Sunday, she too, has lupus. She is also a nurse.
A plan is coming together. People are checking on me on the days I have nowhere in particular to be. I am trying not to be a bother to anyone. I get a text and reply all is good. They know I'm okay and it's easy for everyone.
Brandy has become a lifeline. In talking to her, I shared some of the issues I've had. Yep, I have lupus. She got me into a Facebook lupus support group. I can hardly keep up with them. She told me I needed The Lupus Encyclopedia, so I ordered it. (It came today)
I now have added a dermatologist to my list of doctors and an allergist. Am changing rheumatologists before the first appointment, so waiting to get it scheduled. Also waiting to get the dermatologist scheduled. Referrals have been made.
I feel like a load has lifted from my shoulders. I know I'm not crazy, there truly is something wrong. While there is no cure, there is a treatment.
I am adding to my list of do not eat foods. I am logging my minor flares. I have photos of me with the malar rash and my mouth flare up a year ago, well, it was a lupus flare. Too bad the person treating me when it happened had no clue what it could be. I'm guessing mouth sores in the past which have been blamed on the diabetes were lupus flares.
Oh, and my foot? The podiatrist sent me shoe shopping, while it helps most of the time, shoes were not the issue. It too is related to the lupus. I cannot undo 51 years of no treatment, but I can start from here and hopefully we can correct some of the damage already done to my body.
I always said I was allergic to my body. I guess maybe I was right.