Hi Everyone. Even though I'm still short of breath, very fatigued, and spending 2 to 3 days per week in bed, I blew off my stress test. An ER doc and my internist are still concerned that I might have pulmonary hypertension. I did make an appointment with my cardiologist for next week. I like him and I'll take any test he wants, but if he says just keep taking my BP medication and monitor my blood pressure I'm cool with that too. I did take an Echo of my heart and it was normal.
I saw my infectious disease doc (just like my internist asked) and he wants a CT of my sinuses just to follow-up on an old MRI that showed what may be fungus in my sphenoid sinus. My sinuses give my constant trouble so it would be great to get treatment.
My infectious disease doc also orders and monitors the IVIG infusion I get every month. My rheumy orders my Benlysta infusions each month (and has me on Cellcept). My veins are shot so I had a port surgically inserted below my collar bone and the nurses stick a big needle in it to hook me up to these meds. I've been getting two infusions each month for well over a year. My hubby always takes me on his day off because I can't drive afterward. I think most folks can drive, but I'm foggy and wiped out.
Both of these docs order blood draws and they found that I'm anemic with a hemoglobin of 9.2, so my internist ordered TIBC and ferritin which were low and he put me on a prescription iron supplement daily.
I've now been diagnosed with osteoporosis and between that, Lupus, and Fibromyalgia I'm in constant pain. I try to stay away from my narcotic (Nucynta) because it makes me itch and I have to take benedryl with it. So I take Celebrex twice a day, Excedrin in the morning, and 2 Tramadol with Tylenol at bedtime. Sometimes I take Gabapentin at night, but it makes my brain fog worse.
I'm having lots of GI problems. I become nauseous about 3 times a day and take Zofran. I have constant abdominal tenderness and occasional pain. I was going to get a colonoscopy and even took the prep complete with a night on the toilet, but I ended up at the ER with uncontrollable vomiting, headache, and sky high BP. Anyway, I'm beginning to get up my nerve to try again. I really need to get the colonoscopy and endoscopy because of my anemia. Docs have to know why I'm losing blood. Or is it just Lupus.
You may remember that I weighed 240 lbs, had gastric bypass surgery, my stomach closed off, I got pneumonia in the hospital, was induced into a coma for treatment (husband called twice because I was dying), remained in coma for two months in 2011, was on TPN (liquid nutrition by IV) for the entire year and had the gastric bypass reversed Jan 2012. I weighed 150 lbs for almost 3 years and was at Weight Watchers to keep me in check. Now I'm having nausea daily and weigh 136 lbs. What a roller coaster!
I've recently had more clarity thinking, but it comes and goes. My internist wants me to see my neurologist again because of some terrible headaches I've been getting. I never did follow-up with my neurologist for an fMRI, so I guess I have two reasons to see him.
I guess lastly I still have major depressive disorder and anxiety. I take meds daily. I have a terrific psychiatrist and if all this *% makes me feel suicidal all I have to do is pick up the phone. Yeah I take lots of meds. If you have read all this congratulations are definitely in order!! I will try to post more often, but it's hard for me to write about all my troubles when I know many of you have a rough time too. I love each and every one of you. Butterflake
SLE '05, Sjogrens, fibro, Raynaud's, major depressive disorder, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry