I am new to all of this. I have systemic lupus and a very rare lymphnod disease called Castleman’s Disease, both diagnosed 15 years ago. In the last 12 weeks, my life began down a very slippery slope including being diagnosed with over 35 food and environmental allergies, gastritis, and now my mouth and eyes are dry. I am having nasal and ear problems. I am taking pilocarpine, plaquenil, a low dose of predisone and some clonepin to calm my high level of anxiety. I am very stressed out, as I teach and am trying to manage this hell on earth. I have had the eye test and it is not showing sjogrens yet, nor is my bloodwork. Awaiting to have the salivary flow test and lip biopsy in the next few weeks. I am taking vitamin b 12 folate, Vit. d, Omega 3 - not the fish kind as I am very allergic to fish, vit. c and zinc carsonene for my stomach issues. I do work with a homeopath. I do not drink coffee, alcohol or sugar. I am fifty four years old and went through a very traumatic time that probably triggered this, and my dad had Sjogren’s as well. I just need encouragement. I am doing a fairly good job with my diet as I have gone glutten free, no sugar, and tons of veggies. I am also allergic to many nuts. I eat a lot of flax, chia and hemp seeds. I just need someone to tell me that maybe this will get better. Feel hopeless and sad at this joyous time of year.
So sorry to hear you are going through all of this. I too suffer from allergies and multiple diagnoses, though I have no idea how many allergies I actually have. I’ve considered going gluten and sugar free (gave up coffee and soda years ago)- just haven’t done anything more than read about it so far. May I ask why you’re having the salivary flow test and not just going for the lip biopsy? I never had the flow test myself and my blood work did not confirm, it was the biopsy that did it for me. I share your fish allergy, for me it’s seafood and shellfish, a few years ago I could handle a little bit of tuna though I don’t dare even try it now as more and more allergies seem to be popping up every time I turn around.
Will it all get better- no, it won’t… what will happen is you’ll learn your new normal and you will offer words of advice soon to other newbies. As this happens you’ll become a new you, you’ll manage your symptoms better, you’ll get a bit better at saying no, you’ll find time to simply rest and you’ll focus on staying hydrated.
Feeling hopeless and sad- knock it off, I don’t want you to feel hopeless and sad. This will actually only make you feel even worse. You’re going to meet a lot of new people on this site, we understand a lot of what you’re going through. People like me are impressed that you’re still working, that you have the strength to manage multiple illnesses, and that you are still noticing the world around you.
Do you celebrate the xmas season? I’ve been using any bit of extra energy I can find to decorate the heck out of my house- I love to see it all sparkly and fun. I try everyday to find something to laugh at, things that put a smile on my face, try to encourage others to smile and no matter how I’m feeling I’m always up for a hug. You’re not here so I’ll have to send you a virtual hug, hope you get it. Now- about that smile?
Good advice from Rae. Just to say though that Sjogrens does have flares, and then things can settle for a bit, so you might find that happens with you- hopefully! As Rae says, you’re doing really well to manage work & the AI diseases, but make sure you take time to rest if you can. And good luck with the new diet, hope that it helps
Thank you, ladies. All good advice. I know rest is important and having this much needed winter break will help. Am taking time to enjoy the holidays, friends and joy! Wishing you both a joy filled holiday season.