I had an appt with my GP today. I wanted to see him before I go to the geneticist for a few reasons.
Firstly I thought it would be a good idea to run past another doc to see if they also agreed that it's likely that I have EDS. He felt that I am incredibly hypermobile & that I do have a heritable connective tissue disorder, of which EDS is one. He wondered if I might have Marfan's, but I really think that's unlikely. I bet he's never before had a patient put their leg behind their head in an exam before, especially one sitting in a chair with armrests & a patient who was fully dressed at that, lol.
Secondly I wanted to know if he would want to be the guy who gets to run the train wreck that is my health. As I am now super interesting from a medical perspective he's totally wanting to be my doc.
Thirdly I wanted to see if I was going to want him to run the train wreck. He apologized for not having noticed this sooner since once I brought out a few circus tricks it was very obvious that there is something going on with my whole body. I said jokingly that I wouldn't have figured it out if I hadn't be researching stuff related to the PFPS that he dx'ed me with & he said no, he felt it was all me who figured this out. I also said I was going to want/need some PT & OT & splints, braces & orthotics, plus some checking on my heart too. He will send me out for anything I need. He first wants me to find out what disorder/syndrome I have so we can figure things out in order of urgency. He is leaning towards getting me some custom orthotics, maybe foot ankle orthotics with a podiatrist. (Is it wrong to ask for a foot rub at the podiatrist's office? Eh, probably.)
So it seems that 2 docs think I have EDS or something similar & both agree I need to be seen by a geneticist to determine what it is I've got going on. It also seems my doc isn't a crap doc that I often accuse him of being, but rather a doc who kinda needs a kick in the pants to get a ball rolling & is fine with me being the one driving this train wreck to wherever it's going.
There is a difference between the haves & the have-nots in life. He told me he couldn't understand why this wasn't discovered sooner since once you looked at a few things it was really obvious. I had to explain that not all of us have had health insurance our whole lives. I told him that from age 18 til now (age 33) I had insurance for 1 year when I was pregnant at 19 & now for the past 4 years. Of the last 4 years I've been his patient for 2 & the 2 before that I was pregnant & then taking care of a sick baby. When you've a sick child you have to put yourself second, doesn't matter what's going on you. I told him I have a variety of crap going on from the last almost 16 years & other than emergency stuff I've had no care. So there is a lot of things that need tending to. I've never seen anyone for my kidney stones, I haven't seen anyone regarding my heart since I was dx'ed @ 15, so lord knows what's going on there & he gets to try to figure out this stuff & send me all over the place. He's up for the challenge & I think I'm going to give him the chance.
Ok, that's enough for tonight, if I forgot anything I post it tomorrow.
Nighty-night all!
Firstly I thought it would be a good idea to run past another doc to see if they also agreed that it's likely that I have EDS. He felt that I am incredibly hypermobile & that I do have a heritable connective tissue disorder, of which EDS is one. He wondered if I might have Marfan's, but I really think that's unlikely. I bet he's never before had a patient put their leg behind their head in an exam before, especially one sitting in a chair with armrests & a patient who was fully dressed at that, lol.
Secondly I wanted to know if he would want to be the guy who gets to run the train wreck that is my health. As I am now super interesting from a medical perspective he's totally wanting to be my doc.
Thirdly I wanted to see if I was going to want him to run the train wreck. He apologized for not having noticed this sooner since once I brought out a few circus tricks it was very obvious that there is something going on with my whole body. I said jokingly that I wouldn't have figured it out if I hadn't be researching stuff related to the PFPS that he dx'ed me with & he said no, he felt it was all me who figured this out. I also said I was going to want/need some PT & OT & splints, braces & orthotics, plus some checking on my heart too. He will send me out for anything I need. He first wants me to find out what disorder/syndrome I have so we can figure things out in order of urgency. He is leaning towards getting me some custom orthotics, maybe foot ankle orthotics with a podiatrist. (Is it wrong to ask for a foot rub at the podiatrist's office? Eh, probably.)
So it seems that 2 docs think I have EDS or something similar & both agree I need to be seen by a geneticist to determine what it is I've got going on. It also seems my doc isn't a crap doc that I often accuse him of being, but rather a doc who kinda needs a kick in the pants to get a ball rolling & is fine with me being the one driving this train wreck to wherever it's going.
There is a difference between the haves & the have-nots in life. He told me he couldn't understand why this wasn't discovered sooner since once you looked at a few things it was really obvious. I had to explain that not all of us have had health insurance our whole lives. I told him that from age 18 til now (age 33) I had insurance for 1 year when I was pregnant at 19 & now for the past 4 years. Of the last 4 years I've been his patient for 2 & the 2 before that I was pregnant & then taking care of a sick baby. When you've a sick child you have to put yourself second, doesn't matter what's going on you. I told him I have a variety of crap going on from the last almost 16 years & other than emergency stuff I've had no care. So there is a lot of things that need tending to. I've never seen anyone for my kidney stones, I haven't seen anyone regarding my heart since I was dx'ed @ 15, so lord knows what's going on there & he gets to try to figure out this stuff & send me all over the place. He's up for the challenge & I think I'm going to give him the chance.
Ok, that's enough for tonight, if I forgot anything I post it tomorrow.
Nighty-night all!
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