Interstitial Lung Disease

I was diagnosed in 2018 at age 46 with idiopathic pulmonary hemosiderosis via lung biopsy. I’ve been accepted into the undiagnosed network to try to find cause but everything has been on hold due to covid . I am being treated for mixed connective tissue disease currently as well as oxygen dependent. #IdiopathicPulmonaryHemosiderosis #InterstitialLungDisease #RareDiseases #Rare #MedicalZebra

I am now 73 and was diagnosed with UCTD about 3 years ago, but have had symptoms of extreme exhaustion, migratory arthritis and a very low WBC (1.8-2.0) since my late 30s. I’ve never met anyone like myself. I’ve been fortunate that one nightly Aleeve works like a miracle on this bizarre kind of arthritis, which can be excruciating and ean loss of use of the joint invovled for about 48 hours. I don’t mind it because it goes away. wMy doctor tried to treat the exhaustion with plaquenil, but I had an adverse reaction to it. I otherwise go untreated except Aleeve and prefer the symptoms I have to various strong meds. I do have scar tissue on my lungs, and work with a specialist at Cleveland Clinic for that (Interstitial Lung Disease), but the doctor said it’s to early to start steroids, much to my relief! Anyone have migratory arthritis or lung scar tissue with their UCTD? #UndifferentiatedConnectiveTissueDisease #MigtatoryArthritis #InterstitialLungDisease #LowWBC #LowWhiteCellCount

My podcast was featured on a blogroll at number THREE!! I got on Twitter and saw this -
“Your podcast has been selected as one of the Top 20 Chronic Illness Podcasts on the web by
@_feedspot

Top 20 Chronic Illness Podcasts You Must Follow in 2020 blog. blog.feedspot.com/chronic_illness_podcasts

Link to my podcast
podcasts.apple.com/us/podcast/chronic-wellness/id1477731488 #ChronicIllness #chroicpain #Fibromyalgia #MyalgicEncephalomyelitis #AutoimmuneDisease #InterstitialLungDisease #sjogrens

Because of my migraines (due to meningitis) I have to sleep with ice on my head, at a 45° angle. This has been true for more than three years now. It requires a small army of pillows and means that I am never snuggling, spooning, cuddling, or even laying eye to eye with my wife.

Last week, because she had a shoulder injury, I suggested she try sleeping propped up - like me. I gathered the necessary cushions and pillows and that night, when she laid down - there she was, next to me. Her face on the pillow right by mine for the first time in years. I just started to cry. I didn’t even know how much I missed looking over and seeing her next to me, the closeness, the intimacy of having her right there instead of being separated by my “sitting up.”

It’s time. My headaches aren’t going away. This weekend we ordered an adjustable bed. I acknowledge how privileged I am to be able to do so. How hard it is to accept it as something I need.

I look forward to seeing her head next to mine. #Migraine #Meningitis #sjogrens #Polymyositis #InterstitialLungDisease #CheckInWithMe

After a decade of illness, my sex life is almost nonexistent. There were times that my illnesses have been life threatening and it was all we could do to get through the day. At the moment my health is more stabilized but my orgasm seems to have disappeared. Sex requires oxygen (the very unsexy concentrator sounds like Darth Vader) and it’s hard to maneuver with a cannula (the plastic tube that goes in my nose).

Then there’s factoring in the pain (before, during, after) and fatigue. There is so much recovery required and my wife thinks of that fact so much during what sex we do have that it makes it hard for her to find pleasure and not just feel like the whole endeavor is selfish. She’s been rejected so many times that she’s hesitant to ever initiate (who can blame her?!) and I am too. What if I get things started and then get too tired or hurt too much to finish - one more disappointment. Is it better to still try?

I miss the intimacy. I miss the release of orgasms. I miss sex. How do you all handle this? I thought I could just amputate this part of me but it turns out I can’t....
#Migraine #Polymyositis #InterstitialLungDisease #sjogrens #RareDiseases

Okay, confession time: I was sort-of diagnosed just under four years ago with fibro, RA, and interstitial lung disease. I am also bipolar. The first year or so, I fell into a great depression, and after being on steroids for nearly two years to beat the lung disease, I gained significant weight. I had given up.

Then, for some reason, my will to live switched on. I lost 125 pounds and used my exercise bike on a regular basis. Of course I was still in pain, but I was doing something about it, right?

Unfortunately, this last year has swung back to depression and giving up. Is this experience something others go through? It would be great to know I'm not alone, and that perhaps there is a way to cope.
#ChronicIllness #Fibromyalgia #RheumatoidArthritis #BipolarDisorder #InterstitialLungDisease

#BipolarDisorder #BorderlinePersonalityDisorder
#CheckInWithMe #MultipleSclerosis #Scleroderma #InterstitialLungDisease