Here’s what happened at the Cleveland Clinic today

Here’s what happened at the Cleveland Clinic today

We finally made it home.  We ended up only being there for about 3 or 4 hours but it felt like an eternity….

Lizze’s visit to the GYN actually went pretty well. 

For some reason they didn’t do the whole cancer screening/yearly thing.  She’s supposed to come back for that. 

They did however do the bone density scan and we even received the results.  Apparently, the bones in her back are good but her pelvis is right in the middle between okay and osteoporosis…


Her doctor thinks it’s likely due to her major vitamin D deficiency.  She had blood work done to see where she is right now and we should hear back soon. 

Her doctor thinks that she’s always been vitamin D deficient and that could be what caused the preterm labor with Elliott and Emmett. 

She also learned that she is post Menopause now.  I’m assuming that it means that she’s done with Menopause but we haven’t really talked about it. 

Her doctor increased her hormone replacement therapy because her hot flashes are still really bad and it’s preventing her from sleeping.  That about sums up that part of the trip.  Nothing catastrophic happened and that’s something I can absolutely live with. 

The last part of the day was spent at the Rheumatologist. 

Lizze was diagnosed with the hypermobility form of Ehlers–Danlos syndrome. At the end of the day, that doesn’t amount to anything earth shattering.  Instead it simply puts a name to what’s going on with her joints and advises that she may be more prone to joint injury..

She’s been referred to physical therapy, as well as something like genetic counseling.

The really big thing to come out of Rheumatology today is the simple fact that her meds will now be managed by the Cleveland Clinic and that’s a good thing. 

No more struggling to get her meds refilled.

I want to thank my Mom for taking care of the boys for us this afternoon and all of you for your thoughts and prayers. It’s truly appreciated…

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉

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Christy Garrett

Hang in there Lizzie, I hope these medical changes will make life easier for you and your family.


Glad youre getting some answers…. hang in there Lizzie if they are saying post monopausal those symptoms should be about gone soon. (yes I speak from experience) What I dont get though is why they would want you to even bother with genetic counseling. They know you arent having more children, I would ask since it would be a waste of time and money if the point is to make you aware of potential outcomes of a pregnancy? Seems silly to go through something needlessly and make the drive. Get feeling better!


Typically the point of genetic counseling for ehler’s danlos is to screen to make sure the individual doesn’t have one of the more severe subtypes of EDS. The hypermobility type isn’t a picnic but it isn’t as dangerous as the vascular type of eds. I’m relatively newly diagnosed but if you have any questions, please feel free to shoot me an email. You may want to check out the Sleepless Nights blog, it’s written by a woman in Australia with eds, she is very well informed and always happy to answer questions.

– Jaimie (a lurker with eds)


Glad everything is going ok.

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