← Return to Sarcoidosis Treatment: Tips for an effective path to better health

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@becsbuddy

@shani Wow, Wow, I love your attitude!! I have a different autoimmune disease and fatigue seems to follow me everywhere. Ive been getting exercise but I think I need to get more. What do you do on days when you’re just too tired?

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Replies to "@shani Wow, Wow, I love your attitude!! I have a different autoimmune disease and fatigue seems..."

Short answer.I REALLY try to never be over-tired as it’s poison, but if that happens and it does, despite myself, I quilt, make papercuts, chat on skype, email or simply take a short nap. You think you need more exercise? exercise only means movement, not heavy gym workouts so if you are sitting or standing do something...rearrange your pantry as a 5 lb bag of sugar in your pantry or a a half gallon jug of milk weigh the same as a 5 or 8 lb free weight. WHY are you fatigued? Disease process? Answer honestly with a focused solution...bored? not enough sleep? Why? Overworked yesterday? Meds issue? take a SHORT nap followed by a walk with a friend, walk around a mall or offer a neighbor with a baby to push the stroller (having something to hold on to assists your walking, thus increasing your endurance), go to your garden and pull a few weeds /re-pot your plants, do some balance exercises while standing at your sink , clean your house😖, rearrange your closets, IOW ...MOVE! Change your perspective, remember to rest before feeling exhausted and that rest doesn’t always mean sleep. If you are tired of standing, sit and if you are sitting, stand, but always to YOUR tolerance.

@becsbuddy, @shani, and all...For some reason, I followed your line of messages from today's notifications to this line of chat. I want to ck in with Becky anyway, so I'm sending you a special friend notice! Hope all is well and you're perking along. The Sarcoid is quiet at the moment. My lungs are better in some ways, but worse in others. Asthma is far worse now. I'm on oxygen at night with the bi-pap and it's such a great improvement for me. My sleeping is so much improved due to this change.

I'm also no longer using the 1:1 marijuana tincture before bed. I don't want to spend the $250 every couple of months to visit the doctor for a prescription up-take. And, the drugs are very expensive...my retirement years are longer than I expected or planned....so, I've found something that does a better job!

One day I was playing around on my laptop and found a lovely make-up fashion site for gray hair, for those she calls the ferocious woman, the older woman with naturally gray hair. It's Nikol Johnson, a model, and career-long make-up artist and cosmetologist. I really had fun changing some things in my make-up and colors since my hair is now silver with some black left in the back. Changes my inner attitude, my inner self. I really enjoy this and it's awakened part of me that was on hold...the making the best of myself no matter how the body says no.
Being pretty again, such as it is.

She recommended a woman-owned company, Winged Wellness, that's designed to help us as we age with post-menopausal symptoms, other types of discomfort and pain, anxiety, and such...it has products with CBD with herbs and such. I now take a couple of CBD and herbal gummies. They do the job fine. I also take something they call Relief. I tried a small amount and it worked so well that I use it daily now. It's wonderful!!!! It has no marijuana at all. It's made up of herbs and spices, curcumin, aswandwa???, and other goodies. Things I'd heard of but never taken seriously.

This capsule is better than the prescription meds I took for pain and discomfort for decades! I can truly have relief without the side effects, no foggy brain, etc. It's a miracle in my life. I'm thrilled and having much better days. The Sarcoid pain, bones issues, great help for arthritis. My comfort level is so much better now, it's truly amazing.

I'm passing this along to all of you friends with daily and frequent pain. It's changed my daily activity level. I still rest most of the day, off and on and sometimes more on, but I have good relief now for the first time in decades.

I'm 76 now. For the first time since Sarcoid diagnosis at 40, I'm working with an endocrinologist addressing my bone issues added to by decades of steroid use. Another thrilling improvement. I kind of feel like I'm too old for these improvements, but I'll take it! I may begin having an annual Reclast infusion. Along with my iron infusions every few months, and so on...addressing the bone damage from early, 35 years old, osteoporosis, and worsening
bloodwork numbers. I see a new hematologist Wednesday for the numbers regarding iron/ferritin issues. All good things from Mayo Florida. I'm so thankful for that group of doctors and staff that have lengthened and improved my life drastically. I hope and pray for all of you to find the same. Blessings all, Elizabeth