Hi everyone- I'm in the middle of the California wildfires in Santa Rosa CA- you may have heard. The fires are massive BAD out of control, smoke and air quality is just the worst. Its been stressful but we are okay! and haven't been forced to evacuate so are hanging in. I so appreciate the thousands (8000) brave brilliant firefighters who have come to help- its so incredible to see them. I actually think they may have gotten a bit of control on the fires today. yay! The Air Natl Guard has come in and firefighters from 1000 fire depts all over the west. gotta love 'em!
Anyway- On Sunday the fire burned through the north end of town forcing two hospitals to evacuate all of their patients. It also destroyed the cancer clinic where I get treatment. Today I was scheduled to get Nplate. The clinic has a message that just says "we will call you when we can get you in". I have no idea where they are or when they will get up and running again.? I imagine it would not be easy to put together a cancer clinic. I'm okay without Nplate and not worried because I have an emergency bottle of prednisone- about 25 tablets of 5mg. I saved back these pills because I didn't want to ever be without something. Now I'm glad I did! I think its really important that we ITPers are able to take care of ourselves if we can. Many have it much worse than I, so feeling grateful for my health and safety as it is.
ps. I was diagnose with Sjogrens and Lupus recently. omg I really see how STRESS triggers those autoimmune disorders! Such a clear correlation- as we were told we might have to evacuate, I went into kind of a full body pain, achy muscles/joints. Not so bad and it didn't last long- I was able to calm myself down, but it really showed me how sensitive my immune system is to stress. Prednisone helps with those problems too- 5mg takes the edge off for me. Not my favorite drug, but sometimes its good to have around.
Oh my Posey. Hopefully they can isolate the fire soon. Excellent planning with the backup Pred. Is there something one can do to minimize the stress, like Yoga or meditation or something? White noise even?
Stay out of trouble, errr ahhh I mean, stay safe !
Thanks Hal! Hope you are well and having success with your treatment. Yes, I do meditate some, not as much as I should of course. I do a kind of energy work and have for 15 years. Its visualizing energy in channels to clear tension or whatever. I was able to use the technique to clear the body pain I mentioned. So what the doctor is calling a Lupus flare did not last long, about an hour. The techniques don't do much for the Sjogrens symptoms which is dry mouth, eyes. I can't really avoid stress, life just gets really stressful! Plus I like having an active busy life with some excitement. I wouldn't want a stress-free life. But I think being able to turn the stress up and down is helpful and healthy. The "energy work" techniques can turn the stress responses down at the end of the day- or whenever I get a quiet alone space (and am not too lazy or distracted). Sometimes the techniques work well, sometimes they don't do anything- then I go to drugs! haha
Overall, I guess I'm trying to identify and understand the stress link in my auto-immune issues. Though I don't really see how stress affects ITP- I mean I've never seen the connection in the lab numbers. But it must be a factor, if its such a clear factor in lupus symptoms. I am beginning also to look at how food makes a difference in my personal wellness and energy levels, and probably auto-immune stuff. I've gone vegetarian (mostly) and that helps me feel better, plus lost some weight. I quit sugar- that is awesome. And I went for a while without bread- I felt much better, better energy, less bloaty sluggish. But now I've gone back to bread- argghh well, I'm working on that one. Potatoes and pasta do not work at all for me. They drag me down just as white bread does. So at least I am looking at it and making some better choices, if not perfect. Take care- be well.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
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Oh wow, Posey, I'm so sorry! My daughter lives in CA (San Diego) and I know the fires are not there, I worry about her all the time. They hit pretty close to her last year. That would be a very stressful situation!
I also have Lupus and Sjogren's and have not had a break since diagnosis (12 years)r. It just keeps getting worse. Hopefully you will be able to keep yours under control; you are doing the things that I wish I had done from the beginning. I let them talk me into all of the strong drugs which only caused more damage. I've done them all (except Benlysta which I refuse). I didn't eat well because I didn't believe in the food connection. I do now, and after watching a documentary on Netflix the other day, I am going to start a plant-based diet on Monday. If I don't do something soon, I will be totally dependent in a few years. That's my worst fear. I also never knew how to manage stress, still don't, and have had ten very stressful years. I'm a hot mess. My point is, you are doing everything right so keep it up!
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