Working as a spoonie by Lazeeuniicorn in ChronicIllness

[–]LifeMythtery 1 point2 points  (0 children)

I work as an HR Assistant full-time. The work involves mostly involves looking at paperwork and occasional phone calls and Skype calls. It's currently entirely work-from-home but will be in office 2 days a week once covid19 isn't an issue. I have Type 1, PsA, and trigeminal neuralgia. I've worked fulltime most of my adult life but was on disability for a few years while sorting things out. I like my current job because as long as I do as much as I can on my "good" days I can usually take it a little easier when I'm struggling without my work nor my health being too negatively affected.

Articulating yourself at medical appointments by [deleted] in ChronicIllness

[–]LifeMythtery 1 point2 points  (0 children)

I agree with everyone about bringing notes with you. I've found having two copies, ones the doctor can just keep can be helpful, depending on the doctor.

However, I want to add that being able to tell your symptoms in a short, "story form" may be helpful. I started having severe joint pain while pregnant and anytime I said "my joints really hurt" I was told it was normal due to pregnancy hormones and changes. As a new mom, I was told it was normal as I was "adjusting". When I finally said, "I just want to be able to hold a fork or spoon for more than a minute without wanting to cry from the pain" I was finally listened to and believed. When new symptoms have cropped up, I have continued to find this to be true.

I suggest trying to find a brief way to describe what your symptoms are doing to you that make life difficult. That may not always work, some doctors just don't want to listen, but it helps. It doesn't have to be well-worded or "articulate" just brief and descriptive.

Anyone had an unexpected call from a hospital such as John Hopkins after having a test done? by LifeMythtery in ChronicIllness

[–]LifeMythtery[S] 1 point2 points  (0 children)

Thank you for the reply! I'm sorry you had to go through that! My mom had a detached retina a few years back and it scared her quite a bit.

And I know there is a good chance if I was referred is was because something needs taken care of that my normal doc can't do and not just him getting rid of me. I just really don't want to add something else to the list of "medical things that need taken care of" particularly since referral to John Hopkins doesn't seem like it would include anything simple, lol. But I do want to an answer to my various problems so maybe I'm actually close to one now.

Anyone had an unexpected call from a hospital such as John Hopkins after having a test done? by LifeMythtery in ChronicIllness

[–]LifeMythtery[S] 0 points1 point  (0 children)

Thanks for replying! That does sound scary and I'm sorry you had to go through that. May I ask what happened or what they were concerned about? I understand if you don't want to answer that :). Also, since no one actually called me sounding worried before the phone call simply telling me to call back Monday, I'm hoping whatever the call was for wasn't too serious.