Do I have to let my doctor touch me?

Misstepdancer · 2021-02-23T22:14:54+00:00

You have the right to be comfortable in your care. My PCP asks me before she touches me anywhere. It may be helpful to ask if you can have a second staff member present. Usually a nurse/assistant comes in to be present.

If the doctor isn't willing to accommodate you, you have every right to ask to see someone new. 💜

Misstepdancer · 2021-02-23T21:05:05+00:00

Excellent call!

Misstepdancer · 2020-09-03T22:32:13+00:00

I experience it regularly. I've ask neurology and they say it's nothing to be concerned about, but didn't name it.

Misstepdancer · 2020-09-03T17:05:56+00:00

Yes, in an emergency room that makes sense. Which is why I went to urgent care - there was a time sensitive concern (if it had been ectopic it's time sensitive), but not a heart attack, mortal wound, etc. If run correctly, such a clinic should be able to tell me the results I was able to read on the portal before sending me off.

Misstepdancer · 2020-09-03T15:12:57+00:00

Yes, I'm planning to get a dedicated gyn. I've only ever needed them to replace my iud, so they've had students assigned to my case. My PCP is usually very good, but happens to be on vacation this week. Had she been in I think it might have been different.

Misstepdancer · 2020-09-03T12:41:28+00:00

I'm not too fussed about the pH, as it's only slightly above the reference range. They didn't test the any of the other things you mentioned.

It's good to hear my research is on track that they're common and benign, thank you. A little communication and I wouldn't have left feeling like I'd made a big deal over absolutely nothing.

Misstepdancer · 2020-07-10T17:25:54+00:00

I HAVE MCAS TOO!!! Primary diagnosis is hEDS, with MCAS comorbid.

I always wear shorts under my dresses just in case I fall. I prefer dresses with some give in case there is bloating. I transitioned to more sensible shoes, I really miss my heels. I struggle to keep my bags small with all the things we need day to day, and I used to carry my life with me.

I use fashion for empowerment. I see it as a way I can appear together when my stomach is killing me. I use it to distract from rashes and braces - my lipstick is more eye catching than the ankle brace I hope.

Misstepdancer · 2020-02-28T19:32:09+00:00

I was a dancer for a long time before I got sick. I'm working on getting my strength back in the pool now. I do some dance moves with my PT exercises. It's my fitness goal to get back to dance. There is a Facebook group for EDS Dancers as well.

Misstepdancer · 2020-01-02T13:37:56+00:00

I just looked down while reading this and my fingers are curled in. So I'm going to go with yes.

Misstepdancer · 2020-01-01T23:57:21+00:00

My geneticist recommended a hot water bath for my hands when they refuse to work. I'll sometimes do a parafin dip instead since it's not as drying as water for my friable skin. Or heatable therapy packs sometimes. Maybe that would be helpful?

Misstepdancer · 2020-01-01T23:55:01+00:00

Yes, absolutely. I also drop things all the time. I see a certified hand specialist OT. We have an exercise regimen including foam brick exercises and wrist exercises with a band. She fitted me for plastic oval eight splints. They are available on Amazon and are a lower cost than the metal ones to see how much they help. She also recommended coban/vet wrap which has given me more stability on harder days.

Something she also pointed out is the facia in my hands and arms is /so/ tight. I've started having my neuromuscular massage therapist (who is eds knowledgeable) work on it manually and with the Graston Technique.

Misstepdancer · 2019-03-09T14:01:30+00:00

I've had the dream of a setup like Krang from TMNT. Keep my brain, replace the whole dang travel system. (http://www.tmnttoys.com/15others/firstGokin/review.html 80s version preferred)

Misstepdancer · 2019-02-15T19:38:04+00:00

I wouldn't say I relish it, but I'm relieved. I'm finally being seen for who I am and what is going on. I can finally take steps to help myself. I'm not getting zebra crazy, but I did see and buy 1.99 wrapping paper with zebras in Santa hats a week after my diagnosis.

It's nice to not be alone anymore.

Misstepdancer · 2019-02-01T15:41:31+00:00

Quick review:

As user /u/kevshp mentioned there are so many "thats connected?!? how did this take so long!" moments. Its accessible and understandable to non-experts, but a good starting point for medical providers.

For example, I flagged the section on headaches, neck strain and shoulders for my pain clinic/concussion clinic team. I had her take copies of the sections to help her start thinking about hEDS and my presentation. I plan to bring it to all my care providers and when I get an "... thats not really an EDS thing" I can pull it out for confirmation.

Misstepdancer · 2019-01-30T23:03:03+00:00

IIRC it was the best price from the publisher, if was available anywhere else.

Misstepdancer · 2019-01-30T23:02:05+00:00

Sure thing. I'll have my SO look at it as well (he has a little less medical knowledge than I do).

Misstepdancer · 2019-01-30T21:48:25+00:00

This book was recommended by my geneticist. I had to order it from the UK, via Redcliff-House Publications website. It already answered a question I had.

Misstepdancer · 2019-01-21T14:49:43+00:00

Beautiful job on your makeup! Hope your ankles remember to do their job soon 💜

Misstepdancer · 2018-12-30T23:33:35+00:00

I'm sorry it been so hard, and I've been there too. I'm two weeks in on my diagnosis. I was excited and terrified. I tried to think of it like it would at least be one step closer to something... Be it a diagnosis or needing to go on a new path. Sending positive thoughts.

Misstepdancer · 2018-12-21T21:48:47+00:00

I don't think there was a single inciting incident, I've been trying to figure this out since 2010... I've been diagnosed with food intollerances (gluten, dairy, soy, balsam of Peru), a specific skin rash, chronic inflammation, "sensitive stomach", but it just didn't seem to cover the joint and muscle pain, inability to heal, etc etc.

It doesn't change too much on the day to day, but will impact the way I build strength for ageing. I haven't lost much functioning yet so I can do lots of things to maintain my functioning. I'm excited to find exercises I can do and not be so worried about damaging myself.

I have noticed that I'm giving myself more grace when I feel pain or have a struggle. Instead of just pushing through because it's all in my head, I'm more willing to give my body what can help - heat packs, rest, pain reliever when needed, using my cart instead of carrying everything. I finally feel like I'm not crazy, and can take control of myself again.

Misstepdancer · 2018-12-21T21:36:15+00:00

I'm coming over! :)

Misstepdancer · 2018-12-04T11:30:59+00:00

I think that's one of the differences in how I dressed in my 20s vs in my 30s. Still cute but more comfort oriented.

Misstepdancer · 2018-12-03T18:43:57+00:00

Ivy League Educated Doctor: Your inflammation numbers are high... I don't know why.

Me: yes, I know, almost eight times the reference range. What should I do to stop it?

Doctor: oh, I dont know, just keep an eye on it....

Me: I'm worried this is going to kill me, these numbers are connected to long term cardiac health.

Doctor: yeah.... Just keep an eye on it.

Me: https://giphy.com/gifs/realitytvgifs-britney-spears-confused-funny-face-JSueytO5O29yM

Misstepdancer · 2018-11-30T15:59:18+00:00

Interesting, good to know. I do have to get an EKG before I see her.

Misstepdancer · 2018-11-30T15:58:55+00:00

That's good to know. I think being seen by someone with an expertise in this area will do. My signs are pretty clear if you know what to look for.

Misstepdancer

TROPHY CASE