I got one of those phone calls last week. You know, the kind that you don’t want to have. The background to this phone call is that I’ve had a lot of strange symptoms for YEARS that no one has been able to figure out. Mostly, the sypmtoms of hypothyroidism like fatigue, dry skin, adult acne…then, I had other weird things, like an elevated liver enzyme last year, elevated erythrocytes periodically, and back pain/leg aches, and body twitches when I’m exhuasted. Nothing has ever been diagnosed, so I stopped looking, really. Then a few weeks ago, my knee started hurting. Badly. No reason why. Then a few hours later, my other knee started hurting. Slowly, the pain spread to other areas including my left hip, and it felt like I had bruises on my arms (but, no bruising was seen!). After two weeks of this, I visited the Dr. during a few hours I had off before work. They ordered blood work and I made an appointment two weeks out to follow up with a different Dr.
Then, a few days later, I received a message on my phone at 7pm. It was the PA who ordered the blood work, not even the one I’m following up with. She told me that I needed to call the office ASAP in the morning. YAY! I instead, opted to call back the number that called my phone. No one answered, so I hung up and resolved to call in the morning. At 7:30pm, she called me back again. On her personal phone. Great…
I was told that I have a significant finding, a positive ANA test. Grouped with my symptoms, I need to see a Rheumatologist as soon as possible, and even before the rest of my results come back. Lupus. Rhematoid Arthritis. Maybe something else? Maybe?
Considering that my grandmother has lupus and my symptoms line up, I’m thinking that’s the most likely cause of my pain and the positive ANA. I’m slowly beginning to learn about it, though I’m holding off on doing a lot of research until I see the Rheumatologist. In the meantime, I hurt. My hands hurt. My calfs hurt. My eyes hurt. My back hurts. I’m exhuasted, which makes the pain worse. Thank God for Ibuprofin which does help take the edge off! Thankfully, the symptoms come and go, although they’re coming a lot more than they’re going right now. 🙂
And then, today, this is what I read about Lupus:
In the past, lupus was not well understood. People who had lupus died younger, usually of problems with vital organs. Now that the disease can be treated more successfully, life expectancy with lupus has increased significantly. Up to 90% of people with lupus live at least 5 years after diagnosis. Nearly 70% live at least 20 years after diagnosis. (WebMD)
HAHAHAHAHAHA! Nearly 70% live at least 20 years after diagnosis?! I will be 48 in 20 years.
Forty-eight years old. Now, I’m not saying I have Lupus. I’m not saying I’m freaked out about any of this, beacuse I’m not. But reading about this “great” life expectency thing has made me think about this: if you knew you weren’t going to have a “normal” lifespan, how many years do you think you’d need to feel peaceful about leaving this world?
I think 20 more years would be ok for me. I don’t need a whole lot to feel peaceful about going to Heaven, because let me tell you, I am really excited about seeing Jesus face to face. The things that I need are pretty simple: I want to watch my children grow up, and I want to know that I’ve trained them to provide for themselves and make good decisions. I want them to be self reliant. I want to see my grandchildren. If I’m to die young(er), then I’d like my husband to still be young enough that he finds a wonderful new wife to be his companion while he ages (come on, I’ve done the single thing and it’s really not great).
How long do you need? What would make you feel peaceful about being given a life-expectency less than “average”?
Your research might be outdated. Everything I have read says that 80% of lupus patients have a normal life span.
Just a painful normal life span.
I don't worry too much about it. However, I am buying long term care insurance so my kids don't have to be caretakers and I can be in a decent nursing home.
Agree, that research sounds very outdated. I have an aunt who is in her late 60s and she was diagnosed very young (from what I recall) with lupus and this was back when treatments were a lot less effective.
I too have an autoimmune disease and went through the panic when I was first diagnosed six years ago. I have an uncle with the same disease and he spent years on awful steriods that gave their own lovely side effects. But the medications that exist now are far better then what existed even 20 years ago.
Lots of hugs.
I am praying for you!!!
Agreed! Thanks, everyone. 🙂 My Grandmother actually has lupus and is still living and I think nearing her 80's…We're still searching to figure out what's going on with me. After doing more bloodwork and seeing the Dr. specifically about this, he is thinking this is directly related to the lack of sleep I have. GA!!!!!