In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
PCP pretty convinced- Lupus , Taking plaquenil,Propranolol, Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab. Prednisone 15mg daily added 03/09. Mom of 2 boys 1 and 6. Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.
I still have the UCTD dx, with suspected lupus and/or other AI's - and the rheumie continues to test every six months. (Does that seem "usual" to keep testing for all those antibodies that often?) I've been on Plaquenil for nearly 6 mos. and the last couple of weeks (knock wood) have been much better. Still not sleeping very well - and still have pain and stiffness, but the fatigue has improved, my hair stopped falling out, and skin got better. Sensitivity to sun is worse, however. But at least this summer, I've made the connection to the sun (and flourescents) being a flare trigger (thanks to all of you!) and I faithfully apply the sun screen. Even my husband reminds me to get out of the sun now when I forget.
I'm honing my pacing skills - miss the days of just tying into projects come what may and being able to get so much done - but I am getting better at avoiding the bad crashes. My fibro got pretty active as well this past winter - but there was a lot of stress and I tried to resume taking Lipitor in Feb. - which just didn't work and triggered some awful pain and malaise. If I could find a way to eliminate the back pain I would be a changed woman! Found out I also have Osteoporosis. Rheumie wants me back on mega Vit D in order to begin Fosamax.
I've given myself permission to say "no" when I need to. I've been gradually building up my walking time and stretching reps. A slow process, but every little bit more that I can do is it's own reward. My fondest wish is to be able to travel again without flaring, but basically, for now, - it sure feels good (1 1/2 yrs later) to not feel so bad! This forum has been a Godsend, and has helped me CALM DOWN about the whole thing. Really helps to know others understand.
My hat is off to everyone coping w/ these health issues while raising children and/or grandchildren! Good luck this summer, Patty!
Saw my GP (he is great- he requires the follow ups and really cares!)
My ANA was negative, my Sed and CRP were high- he said that bloodwork only helps to dx but doesn't rule out anything. So everything is still fair game. He believes me- nice- I told you he was great.
My rheumy appt is still 2 months away but he is sending my to a derm and says that anything they can find will help the dx process. His office is calling with an appt. See- great!
I am nauseous, rashy (is that a word?) sore and generally feel tired and crappy.
Summer is here. Blue sky, fluffy couds and nice breezes. Through the window- its still nice to see! And central air conditioning- nice!
Started migraines (haven't had them in awhile- years actually) Not nice.
Dr. Great Guy is sending a request to the Mayo Clinic (hours away so no airfare). They don't take everyone so please keep your fingers crossed for me.
Still have to go out of town for training. no dx= no "official" reason not to go. Yuck. Those will be 12 bad days.
That's it in a nutshell! I am trying to keep my sense of humor! I hope this post finds everyone keepin on keepin on! We can outlast these diseases and win! We are stronger.
21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel
Not so hot. I start pulm. therapy today. Wouldn't ya know it the weather is muggy and my breathing is bad. I found out my appt on the 9th is with the surgeon that will do my surgery. Even though they are trying to put it off for two years I know if I get sick I could do more damage and have to have it sooner. I also know 7 to 10% die in the first 3 months. I am afraid of this auto immune problem destroying my chances. Plus It is manadatory to have a support group but I had my heart cath done alone and I am meeting with my surgeon alone. Plus I have to have a fund raiser that pays for everything my insurance doesn't pay and I have no one to help. It's all waying very heavy on my mind right now.
thank you for asking hun
you're a doll