Join the Conversation on
144 people
0 stories
12 posts
Explore Our Newsletters
What's New in
See full photo

So angry

I had an appointment with my neurologist scheduled for today. I scheduled it 2 months ago. This appointment was for figuring out why I get migraines so often.

I ordered transportation 10 minutes early. At the point they were supposed to be here, they called me to say they were still 36 minutes away from me. It takes about 35 minutes to get to the office.

So I had to reschedule the appointment. The soonest they can see me is October 23rd. I'm not happy with that.

I'm so fed up with transportation doing this to me. I am just a very angry puppy right now. I talked with my mom about it and she was angry too. #anger #frustration #CheckInWithMe #appointment #Migraine

8 reactions 3 comments
See full photo

Need some help explaining your chronic illness during medical appointments? I've created a free Chronic Illness Resume that might help.

About a week ago I was reading an article written by a woman with type 2 diabetes who outlined the - all too familiar - problems experienced when explaining your chronic illness to a new doctor or specialist.

She mentioned that someone had recommended using a Chronic Illness Resume and this helped her to better communicate her past treatments, struggles, and personal experience with her illness that she knew wouldn't be represented by her medical history and lab results.

Overall, she felt it improved her ability to communicate & collaborate with the newest member of her medical team and ultimately improved the level of care she received.

As someone with multiple mental health issues, it crossed my mind that it could even just be helpful to have a reminder of important questions that might be easily forgotten during an appointment.

I couldn't find a chronic illness resume template online, so I ended up creating one that you can download for free. It's a single-page, editable PDF that's based on the suggestions outlined in the article and you can download it here:

Free Chronic Illness Résumé | Bearable

If you think there are ways I could improve it, I'd love to hear your suggestions too.

#ChronicIllness #Doctor #appointment #resources #

Free Chronic Illness Résumé | Bearable

Your Chronic Illness Résumé When you're visiting a new doctor, therapist, or specialist for the first time, it can be overwhelming to remember everything
4 reactions

Wish me luck #Mastectomy #appointment #cowdens #plastics #emotional

I have an appointment with the plastic surgeon to plan my post mastectomy reconstruction wish me luck


How to prepare?

This is for folks with EDS, hyper mobility syndrome, or similar conditions.

I have my appointment with my PCP on Monday (11/16) morning. I’ve been keeping a log of my pain and numbness as suggested by them for my back pain. I think I’m going to transfer it to my computer and print it out so it can go in my chart. Since I started the log the symptoms have expanded from primarily back pain to whole body pain and extremity numbness. I also have weakness and hyper mobility in multiple joints that’s causing problems (falls or near falls, dropping stuff, etc.)

I found out yesterday (11/9) that my mom lied to me about not having any hyper mobility as an adult. I told her I was concerned about mine after my wrist gave out at work causing me to drop a 30lb box into my chest and she retorted with “I deal with it everyday you just have to get over it.”

It’s already been documented that she doesn’t have any problems so they “ruled out” EDS but now this comes about. How do I correct this info without looking like I’m lying? I just want answers and tools to cope. I know there isn’t a cure, but having a diagnosis would make me feel valid in my struggle. I would be able to ignore my mom when she says I’m imagining everything.

I go to PT, a chiropractor, use an ankle brace, limit strenuous activity (most of the time), ordered a wrist brace with thumb spica (its enroute last I checked), document the more troublesome symptoms (it would be pages long if I documented everything), attempting to eliminate gluten (not so successful so far).

What else can I do to prove what I’m dealing with is real? A diagnosis would help if/when I decide to apply for disability again because sadly it would be one more thing to add to the list of problems.

I guess this kinda turned into a rant/vent, so if you made it this far thank you! My question still stands though, what else can I do to prepare for this long awaited appointment?

#EhlersDanlosSyndrome (?) #Undiagnosed #Hypermobility #appointment #Prepare #Anxiety #Depression #Comorbidities


12 hours...

In 12 hours, I will find out when my surgery will be scheduled. If this surgery works, I might be able to get a job, become a wife, have children. So , please! Please let me fall aslee tonight with as little fear and anxiety as I can, let me wake up just one morning without pain and nausea. Let me make it to this appointment, let this be my saving grace. I am becoming exhausted, I’m losing hope. I need this, I need this more than anyone could understand, and I want it so very badly. #Hope #appointment #Surgery #Undiagnosed #Pain #chronic #betterdays #GettingHelp


Does anyone ever have trouble keeping appointments?

So I have been forgetting doctor appointments or sleeping past appointment times, is this the depression, ptsd, and anxiety? Or is it laziness? Could it be my dyslexia? FeFealing pretty bad about myself....
#appointment#appointments #PTSD #MajorDepressiveDisorder #GeneralizedAnxietyDisorder #missed #Doctor #dontknowwhat #dontknowwhattodo


How do I get through to my psych that Im struggling but it's not all grief

I'm in the midst of a really depressive period (months) I've got my psych appt next week. My little brother died just over 2 months ago and how do I get through to my consultant that not all of my feeling are grieving? #Psychiatrist
#MightyTogether #appointment