I received Dr. Lavallee’s notes from our visit and something that took me by surprise is that he recommends I get a Medical Alert ID Bracelet….I have many questions about this one..

From where?
What would it say? POTS and EDS? Would Asthma have to be a part of it too?

Let me just say that I am realizing that Ehlers Danlos and POTS are such weird disorders.  There is so much inconsistency with how they affect me day to day.  Last week was such a better week for me.  I didn’t need my cervical collar as much, it felt like my meds were really doing a good job controlling the POTS, and I was able to rehab with much more stamina. Then Sunday and Monday came and POTS and EDS decided to hit me like a ton of bricks.  My joints felt so loose and I had to use my wheelchair again.  Sigh.

I keep saying I just don’t understand these disorders.  I have kept journal after journal trying to pinpoint patterns so I can try and predict good days and not so good days.  So far these are a few of the patterns I have been able to find…

Overall, it has been a better week. I feel like I have been a rehab’n machine, which is good since my health is my job these days.

1.  Medical Stuff:

• Had 2 sessions of PT. Had to wear my new shirt to PT on Wednesday:

• Saw the GI doc at U of M on Tuesday, and was prescribed Domperidone for stomach flares.
• Saw my new PCP on Wednesday.  He was very willing to learn with me.   I think he will be a good fit.
• Saw the high risk pregnancy doctor on Thursday.  I learned quite a bit…Brad and I have a lot to think about.
• Started Florinef and the Testosterone cream. So far so good.  No chest hair yet.
• Did a lot of home rehab exercises including these…

After seeing Dr. Cantieri, we headed to South Bend.


My next appointment was with Dr. Lavallee, who is a sports medicine doctor, who also specializes in Ehlers Danlos.  He actually has Ehlers Danlos; the classical type, meaning it affects his skin and he also has the extreme joint hypermobility.  I had no idea what to expect from this appointment, except I was pretty excited to talk to a doctor who actually lives with what I am living with.