Saturday, October 15, 2011

Now we are getting somewhere!!

This past week has really worked me over. Of course, Monday was a very long day. We woke up at 2:30 in the morning to drive to Cincinnati for my appointments. Yes, 2:30!! It was so worth it though!

So, my first appointment was with the shoulder surgeon that Dr. Tinkle had referred me to. A med student and resident saw me first and they took a history and did an exam. I can't tell you how happy I was to have the resident say that he agreed 100% with Dr. Tinkle's diagnosis. He then proceeded to show the medical student how hypermobile I was. I feel so legit now. The doctor then came in and talked with us a bit before he went over the Xrays that they'd taken. It showed my left shoulder joint socket was enlarged (or something like that). He said he felt I should try physical therapy for at least three months and, then, if I'm still having pain, they'd do an MRI to see if I had a tear. He said surgery for Ehler's Danlos patients does not have a very high success rate due to the underlying diseased connective tissue.

After the surgeon we went to Physical Therapy. Since this was just a consult and I wouldn't be coming back regularly, we mostly just talked about EDS and how it's treated with PT. She gave me some exercises to start doing until I can get in with a local PT. We also spent some time talking about posture and positioning of my limbs. Apparently, I'm bad about going the full range (and for me that is very far!) with my arms and legs and that can be very hard on the joints and ligaments.

Later on in the week, I saw someone who fitted me for the orthotics. Again, he was amazed at my ankle and feet hypermobility. The orthotics should help stabilize me a bit. Also, he brought up the fact that my right leg is longer than the left (which I already knew). He's going to have the left orthotic built up by a little over a quarter of an inch. Hopefully, this should help with at least some of the pain I've been having.

The man who helped with the orthotics also happens to be part owner of the physical therapy office. He said he had someone in mind that could help me with the EDS. One thing the Cincy PT stressed was how I needed to start gradual and with only one set of joints at a time. I have to admit, I haven't always been a compliant patient when it comes to physical therapy. I think part of the reason is that I was always given way too many exercises and too many reps. It always just got to be too overwhelming for me. But, now that I have an official diagnosis, we can tailor the exercises to my disease, which should help tremendously.

The week after next I see my PCP for the first time since getting my diagnosis. I've been trying to come up with a list in my head of things I want to discuss with him. I have to get those down on paper before I forget. I need to have my heart screened for abnormalities that typically go with EDS, I need to have my neck Xrayed or MRI'd because of the pain and subluxations, I am also scheduled to have my cholesterol rechecked and I'm betting I will have to start on meds for that. Those are just a few of the things I can think of right off the top of my head. I need to get some information printed up from the Ehlers Danlos National Foundation's website to give to him too.

Today had to be one of the most beautiful days we've had in a long time. It was sunny and cool, but not too cold. This morning the girls and I met their cousin and Aunt at a local farmer's market. This place is amazing. Besides making and selling all of the usual fall goodies (it smells so good in there!), they have a hay ride out to the pumpkin patch where you can pick your pumpkin, a corn maze, a small hay bale maze for the toddler set, games, hot dogs and hamburgers and all of the fixins. It's just a lot of fun for not much money. Unless of course, you start buying all of the baked goods. It really does get me in the mood for fall.

Tomorrow we are going over to my mother in law's house to celebrate her birthday. I'm suppose to bring the Oreo Cookie dessert; it's what I'm known for. Of course, something fattening would be my signature food! Ugh! Speaking of fattening....I'm still at a standstill with my diet. I still want to lose at least 10 more pounds by Thanksgiving. And, after Christmas I want to lose at least 10 to 15 more. It would be so much easier if I had no appetite and if I could exercise more.

Today really wore me out, so I'm off to bed. Sweet dreams everyone!

Shari

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