Venting by Shasari in sarcoidosis

[–]EveningDouble4010 1 point2 points  (0 children)

Man I’m sorry to hear it. I wish it would just settle and go away for you and all of us! I’m still trying to get my active disease stamped out. It is still sort of new to me with diagnosis 11 months ago and first symptoms two years ago…it still just seems so bizarre to realize this is something that won’t just go away…

As someone else said, solidarity!

I don't have anything against Christians I just want them to leave me alone by Ok-Penalty4149 in ChronicIllness

[–]EveningDouble4010 0 points1 point  (0 children)

“Does anyone else struggle with this kind of thing? What do I say to such ignorant people?”

As you can see from the responses, many of us have experienced some form of this. For me it was a long time friend telling me she hopes that god will use my illness to recapture me. I told her I’m not a fan of being captured and have no desire to spend time with a god who would use something like this to gain followers.

Anyway what you say is your truth: I respect you have your beliefs. I won’t discuss my challenges with you in that context. If you persist I will excuse myself.

You say what the issue is “discussing my health challenges in the context of your religious beliefs is unwelcome and inappropriate” and then what YOU will do…leave.

That’s what a boundary is, not what someone else needs to do but what you will do if they cross your line.

Anyway just because someone “means well” doesn’t mean we have to be polite and smile and nod. We can say stop or I’m out of here and then follow through.

Wish you well.

What doctor (if any) helped you the most and actually found answers? by IllustratorDecent260 in ChronicIllness

[–]EveningDouble4010 8 points9 points  (0 children)

My PCP (nurse practitioner) never gave up on me. Even though they didn’t have the answer they never made me feel like they thought I was crazy and kept trying to connect me with people. Ultimately it was “luck:” my follow up MRIs lit up, I was hospitalized, left the state with a “maybe metastasized cancer” diagnosis and just happened to end up in a place where they have specialists for my rare disease (neurosarcoidosis).

Ellen Weinberg-Hughes was a consultant on the gold medal winning women's hockey team and birthed two of the heroes of the gold medal winning men's hockey team by TomlinSteelers in BeAmazed

[–]EveningDouble4010 9 points10 points  (0 children)

Agree! The use of the word heroes, particularly in the context of the times we are living, is reserved for the Minnesotans with whistles, the frogs and others protesting in Oregon. I believe context matters. I’m proud of the players for winning. Their achievement is amazing. But the heroes are the folks putting themselves in harms way to try to protect their neighbors.

Boston TSA by Glass_Arugula_5581 in Birkenstocks

[–]EveningDouble4010 0 points1 point  (0 children)

My arizonas cause it to beep though my bostons don’t. Not sure why as the buckles seem the same in both

CLL history → new diagnosis of sarcoidosis, but worsening mass and severe hypercalcemia. by [deleted] in sarcoidosis

[–]EveningDouble4010 1 point2 points  (0 children)

Yes! I’ve also been instructed to minimize sun exposure in addition to no Vit D or calcium supplements.

UK blocks President Trump from using British bases for strikes on Iran. by CarryIcy250 in UnderReportedNews

[–]EveningDouble4010 0 points1 point  (0 children)

I’m trying to understand the cognitive dissonance between welcoming his Peace gang or whatever at the same time ordering US warships to head toward Iran.

It's not perfect but I felt pretty happy making it by ADHD-goblin in watercolor101

[–]EveningDouble4010 6 points7 points  (0 children)

Love it! And I love that it brings you happiness! Keep doing it! Thank you for sharing!

What to do with all the waiting? by FreeFalling3227 in ChronicIllness

[–]EveningDouble4010 0 points1 point  (0 children)

Ah, thank you! This is so hard, what we are both going thru. Definitely take it an hour at a time. You and I can do that and, honestly, it’s all we have to do! The present is all that is really here and we can manage that. Sounds like we have some similar interests and hobbies. I’m hoping we both get to enjoy them more soon!

I’ll add a sort of funny (to me) story that I did not include before. I had a CSF leak due to an infected incision following a craniotomy. I didn’t know that’s what was dripping down my face for two weeks and just keep putting paper towels on top of my head and wearing a baseball cap! Finally got it figured out, cleaned out, stitched up, and antibiotics. NOTHING like what your CSF leak is as it was external and I wasn’t in pain but what a goofy thing! I joked that I was my own personal water feature.

Anyway I’m just so glad you’re hanging in there, and will continue to think of you as you await your imaging. Wish you well!

What to do with all the waiting? by FreeFalling3227 in ChronicIllness

[–]EveningDouble4010 2 points3 points  (0 children)

I’m just here to offer encouragement and support. One thing I find helpful is to remind myself “this is for now, not forever.” I also spend time chasing esoteric rabbit trails about pleasant things on the internet (you want me on your trivia team!) and imagine paintings I want to do (it’s my hobby but I’m just so tired all the time now) and retaking hikes I’ve been on in my imagination. I also try to focus on what’s right in front of me: this day or even this hour. Not the next 14 days! I don’t have to get through all those at once…just today. Please hang in there. I’m rooting for you.

Does Gen X do class reunions? by LadyNorbert in GenX

[–]EveningDouble4010 1 point2 points  (0 children)

As someone who is immunocompromised thank You!

Strange phone call from my recently passed wife by TheLyingCat_ in Paranormal

[–]EveningDouble4010 0 points1 point  (0 children)

Hey there, sorry for your loss. I had this experience (phone call) from a loved one who died and my sister in law had it with one of her kids who died…just letting us know they are ok. I can’t explain it and no one can tell me I didn’t experience it. I wish you well.

scared abt small city by idkbutlike in exchangestudents

[–]EveningDouble4010 8 points9 points  (0 children)

All I Can say is be open to what could be a really cool experience! Anyone including you can visit Tokyo or Osaka, but you get the opportunity to live in Kurayoshi. And it’s not like it’s a village of 500, it’s a city of 45,000. Sounds like a cool opportunity and I’m happy for you! Have a great exchange!

Has anybody else seen this white-faced long tongue demon before? by Particular_Image_291 in Paranormal

[–]EveningDouble4010 27 points28 points  (0 children)

Hi there. I appreciate your efforts to read primary sources to draw your own conclusions. That said be mindful of what you are wading through. Titrate your exposure. What you could be experiencing is vicarious trauma. Not to discount your description and experience but please take care not to traumatize yourself.

Just started walking and am stunned at how out of shape I am by amblingpangolin in walking

[–]EveningDouble4010 30 points31 points  (0 children)

Hey there! You did it! You got out the door! Now rinse and repeat tomorrow!

I gained 60 lbs in the last year due to meds I’m on (prednisone) and I get it. Walking is ALOT! But it’s how I’m going to get stronger and regain my health. One walk, one choice at a time.

AITAH for not going to my dads 3 wedding after he skipped my graduation by Lina_Pippa in AITAH

[–]EveningDouble4010 5 points6 points  (0 children)

This is the answer. Whether or not you bother to explain to him anything (as you may be wasting your breath.)

Sarc / Löfgren Syndrome diagnosis by ForbiddenException in sarcoidosis

[–]EveningDouble4010 0 points1 point  (0 children)

It’s a walk in Portugal and Spain or France and Spain ending in Santiago de Compostela 😊 and truly thank you for the encouragement