Hi everyone! I am in need of your support once again. I'm sorry I disappeared for so long. I get sick of computers quickly, so I tend to not "surf" or "blog" like but I'm going to start just with this blog. It's been helpful to me before, and I know it will be again.
The control panel is not successfully updating my profile, so I'm going to tell you my whole story here:
I was in hospital for 9 days in September, my organs just all went haywire. I really thought I was dying a few times there. The main culprit was determined to be the kidney. So now I have Lupus Nephritis. They want to biopsy, but until just last week, whenever they did a bleeding test, I didn't stop bleeding.
I took a month off work (full time teaching) but am now returned to work part-time. Thankfully, I am tenured, and protected by the union, and my bosses are all supportive of me. They didn't know that I had Lupus until I called them from the hospital. I had never taken one sick day in the two full years I'd been there before this (this is my 3rd year in the school). I know I'm doing a good job at work, though I always think I should put more into it. (But that's teaching for you. I pray for the ability to focus better, and use my time more efficiently, so I can rest more and plan less on my days off)
So now, I work part-time. I'm really starting to worry about money. My husband is concerned that he may get laid off from his job, which does not pay enough to cover half our expenses as it is. But I try to think that we will be ok - I'm very resourceful, and my husband will work two jobs if he has to (though wouldn't that be depressing! To work two jobs that pay hardly anything). He is looking into finishing his degree, and also into finding a job that simply earns more money.
I am 33. Was diagnosed with Sjogrens in 1993, Vasculitis and Raynauds in 2001, SLE is 2004, Lupus Nephritis in 2007.
Drugs: Prednisone is now up to 30 (I HATE this! Want to cut back ASAP, but need to take it slow I know), Plaquenil 400, two new meds for the newly developed high blood pressure (it's under control now, with the meds), and one med to counteract the heartburn caused by those two new meds. OH YEAH, I also now have to do bi-weekly injections of Procrit for anemia.
I'm also taking a couple of psychiatric meds that are anti-panic, anti-anxiety, as the Prednisone, while keeping me alive and acting like a normal person, does not help me to stay calm.
The good news is that the blood tests show that I am getting better in every way.
WHAT I WOULD LOVE ADVICE ON:
1. Staying balanced. One day, I feel and act great and normal, which for me is intense
(maybe too intense) and hardworking. The following day, I am wrecked. And then I'm out of it for a week.
2. Gums. I'm currently having issues with my teeth and gums, probably from Sjogrens. Gum line is receding, and I can't get a graft b/c of the prednisone (wouldn't heal well/quickly enough). ANY PREVENTATIVE/ALTERNATIVE METHODS TO HELP THE GUM LINE? The Ayurvedic Doc I see recommends sesame oil massaged into the gums, so I try to to do that a few times a week, but anything else?
3. Can hair thinning be caused by an increase in prednisone? I'm balding!
4. How do people PREVENT flares? My doctors do is save my life (which is totally appreciated), then prescribe meds and check my blood work periodically. They don't give me a lot of practical, human, advice. What REALLY makes a person better? The meds are just masking the symptoms until my body makes itself better, right? So do I just work on helping my old bod in the old fashioned, normal ways - rest, diet and excercise? Any other suggestions? I just want to get better, and not flare ever again. I want to find some balance.
Thanks for any input.