Does anyone have lupus?!
Question: If so how has it affected your body mine has affected my lungs.
Answers: If so how has it affected your body mine has affected my lungs.
Yes, I have lupus. I was diagnosed almost 14 years ago. It started out mostly affecting my joints. Plus I have fibromyalgia and Raynaud's. Now, my rheumatalogist thinks I may have pulmonary hypertension. For the last 9 years or so, I've had a VERY rapid heart rate. My resting heart rate is usually around 105, and it's gone up as high as 130. So, now it's a trip to a cardiologist for an echocardiogram. It's really scary, because my mom (who also had lupus) died of pulmonary fibrosis in 1999. My blood pressure used to be low, but now it's pretty high. I know a lot of the meds I'm on will raise blood pressure, but no one wants to rethink my med routine.
It's a difficult life for lupus patients in more than 1 way. When I first got married, I wasn't as bad as I am now. I moved to Tucson, AZ where my husband lived, and was able to go for long walks with him at night. Then it just got too much for me. I also walk rather slowly now for several reasons...pain in my feet and legs, shortness of breath, heat intolerance, etc. etc. At first he didn't believe me, he thought I was just trying to get on his nerves. His mom also has lupus, and she took him aside and told him he needed to take better care of me. He also was able to see the arthritis is my hands and feet, and now he has arthritis himself, so he can relate.
I feel like I'm very lazy. I can't seem to do anything but sit or lie down and read or sleep. My rheumy put me on Adderall 20mg, which wore off too quickly, so she raised it to 30 mg, then I had this problem with my BP, so I quit taking it. My psychiatrist got me some samples of Provigil, but it too raises blood pressure, so I quit taking it too. My apartment is a disaster, if my hubby wasn't around, we'd never have clean dishes. It takes everything I have just to get out of bed! I know I need to exercise, but walking here in the desert doesn't really seem to be an option for me. I have nerve damage that doesn't let me cool off like normal people do, so I have a difficult time and get physically ill in the heat.
I also know I need to lose weight, as I'm about 100 lbs, if not more overweight. However, due to my fatigue and pain, I don't cook. My husband either brings home fast food, or we go out to eat fast food. Since I got married I have gained 50 lbs!!
My in-laws like to take me to places I've never been. However I hate traveling. I appreciate them for all they do, but I just can't keep up. All the walking and dragging suitcases and rushing through airports...it's too much sometimes. I feel like a 90 year old lady instead of a 42 year old. And, I hate to drag people down. My hubby had a heart attack back in 2005, at the age of 39, and he started on a walking routine. In 2007 I started walking at night when it was cooler (but not much) and I slowed him down sooooo much. I know he wasn't getting his heart rate to the point he needed to.
A friend of mine hired me to work as an administrative assistant in his doctor's office for two days a week, five hours each day. I've been there since 2006. It's a realatively easy job, answering phones and making appointments, filing and preparing charts. Well, last summer I had a horrible sinus infection which lasted into November, and I was unable to go to work. I don't know for sure, but I don't think he believed I was actually as bad as I was. I had the worst headache the entire time, and I couldn't talk as my throat became involved. My PCP tried everything but nothing was working. So, my friend made arrangements for me to see an ENT friend of his. He put me on a round of strong antibiotics and a higher dose of prednisone, and I felt like a new person after a couple of days.
Well, I didn't mean to write my entire life story, and I apologize for this being so long, but I haven't been on here in a while. I just got a new laptop and wireless dsl, so now I can do more here. It's comforting to know there are more people out there like me. I feel like I've found a family member when I run into other lupus patients and we compare notes, because people who don't have lupus don't really understand, and that includes the doctors I see.
Thank you everyone for letting me vent. I hope to get to know all of you better now that I can actually use the internet! Today's actually a good day pain wise...now if I just wasn't so darned tired! I hope everyone else is having a great day!
Pam :)
I was diagnosed about 10 years ago....after going from dr. to dr. for the previous 7 years...all of them seemed to think I was a hypochondriac. Anyway....I have a great Rheumatologist now and am on meds. The Lupus has attached my Thyroid and eyes among other things....do you find it next to impossible to explain Lupus to people who don't have it? I also have days when I can hardly get out of bed and they days when I have pretty decent energy. Taking a number of meds....Email me if you want to chat.... (I'm female, despite my male-sounding YA name)
Im in the process of being dx, mine you its taken almost 3 years for them to figure it out. I've been lucky, compared to some of the stories I've heard, it just makes me really tired and I keep catching pluritsy because of it