Tomorrow is my appointment with the genetic doctor. I don't know if I'm more afraid of getting a diagnosis or having another doctor tell me that they can't suss out what is wrong with me. I'm thinking it's the latter of the two. Then again, if I get a diagnosis that does not mean that they will have a "fix" for what is wrong with me. It's all very much twisting my brain into a pretzel.
I admit at this point in my life I am completely and utterly sick of doctors. After my experiences with some of them you begin to wonder if they actually know what they are doing. Yes, I've been lucky with a few, my hand surgeon for example was brilliant. However it did take me three years and seven doctors to find him. In the course of that adventure, one *supposed* top hand surgeon saw me a year or so into the hunt and said that there was nothing wrong with me and the next time my hand hurt to call him to complain and not my mother. You have to love that bedside manner! I was young at the time and completely devastated by that. The git had me thinking that it was all in my head and to be honest, after all the wacky things I've had wrong, you do start to wonder if it is all "in your head".
So that leaves tomorrow, and the fear of another doctor saying "we don't know what's wrong with you" and then the self doubt of thinking that perhaps it really is "just in my head". Yes I know not all of it is, but if you had the list in front of you that I've just written up for the doctor of all of my pains and symptoms and issues, it's hard to believe it's just one person with all of these complaints.
On an aside, I've been flipping out about the crutches situation. When I tried the forearm crutches at PT last week, they did not feel that great. Since then I have been debating whether to get the millennium crutches that I have read about on the different boards. I finally decided to just go ahead and order them because I've heard such good things and at this point, I have to make a decision one way or another. Hopefully it's the right one for my hands as well as my hips.
05 September, 2007
30 August, 2007
Low day
Today was my last PT appointment until after my surgery. I have to be honest, I am PT'd out! I've been going since December and am just having surgery now and I will be in PT for a good number of months afterwards, so it was hard to get motivated to go. Everyone is perfectly lovely and helpful there, but my mental side has had enough. This is not a good state to be in, and I know I have to snap out of it. I guess I have 18 days to do so.
So I went in a bad frame of mind, and with many nervous and stressed out thoughts. I have been reading many different things about the results of the surgery and it has all made me a bit apprehensive. Yes, I know I have to have the surgery, but at the same time my brain is trying to come up with ideas about how to avoid it. My hip did hold up fairly well this week, and I hadn't been limping much until after PT today so does that mean I should skip the surgery? Granted I still can't walk a lot without it acting up and I really would like to be able to exercise properly again and go for nice long hikes so that means I should do the surgery. This is the circle my mind keeps going around and around in and it's driving me completely mad!
I expressed my concerns to my pt's K and S, and S said, "well the surgery is not 100%". That didn't really help to be honest though when I was leaving he said to feel free to ring him before if I had any more questions or concerns. I did make sure my post op PT appointment is scheduled for when they will both be in the office. K kept saying over and over just like a mantra "you will be better". I guess I will have to keep his optimism up somehow and try to stop thinking of what can go wrong. I suppose it's time for faith.
So I went in a bad frame of mind, and with many nervous and stressed out thoughts. I have been reading many different things about the results of the surgery and it has all made me a bit apprehensive. Yes, I know I have to have the surgery, but at the same time my brain is trying to come up with ideas about how to avoid it. My hip did hold up fairly well this week, and I hadn't been limping much until after PT today so does that mean I should skip the surgery? Granted I still can't walk a lot without it acting up and I really would like to be able to exercise properly again and go for nice long hikes so that means I should do the surgery. This is the circle my mind keeps going around and around in and it's driving me completely mad!
I expressed my concerns to my pt's K and S, and S said, "well the surgery is not 100%". That didn't really help to be honest though when I was leaving he said to feel free to ring him before if I had any more questions or concerns. I did make sure my post op PT appointment is scheduled for when they will both be in the office. K kept saying over and over just like a mantra "you will be better". I guess I will have to keep his optimism up somehow and try to stop thinking of what can go wrong. I suppose it's time for faith.
27 August, 2007
A bit of relief
After the horrors of last weeks weather, I had practically given up hope of feeling better for the weekend. When the rain starts and stops and the barometric pressure goes up and down, I feel like a ping pong ball being ricocheted around the room!
Although the heat and humidity were pretty brutal on Saturday, I thankfully ended up feeling pretty decent (decent for me that is). I think when you live with pain on a regular basis the "smallish" types of pain just become so constant and regular that you learn to accept them in a strange type of way.
My birthday was Sunday (I turned 30 yet again!) and my friend K's is today, so she kindly arranged for a few of us to go out to dinner on Saturday night. The restaurant was loud and crazy and hotter than Hades, but it was a lot of fun. I wasn't doing too poorly with the hip even when wearing a slight heal - it helps that everyone always insists on finding me a seat! Sad that I need it but lovely that my friends are so helpful :-)
I've been limiting my walking as much as possible (which is really affecting my waistline, or what is left of it) and I believe that is helping to keep it relatively calm-ish. Sunday I vegged out with a friend and in the evening went to my favourite French restaurant in Chelsea. They have the BEST fondant au chocolate known to man, and woman-kind, so I was in utter heaven!
Although the heat and humidity were pretty brutal on Saturday, I thankfully ended up feeling pretty decent (decent for me that is). I think when you live with pain on a regular basis the "smallish" types of pain just become so constant and regular that you learn to accept them in a strange type of way.
My birthday was Sunday (I turned 30 yet again!) and my friend K's is today, so she kindly arranged for a few of us to go out to dinner on Saturday night. The restaurant was loud and crazy and hotter than Hades, but it was a lot of fun. I wasn't doing too poorly with the hip even when wearing a slight heal - it helps that everyone always insists on finding me a seat! Sad that I need it but lovely that my friends are so helpful :-)
I've been limiting my walking as much as possible (which is really affecting my waistline, or what is left of it) and I believe that is helping to keep it relatively calm-ish. Sunday I vegged out with a friend and in the evening went to my favourite French restaurant in Chelsea. They have the BEST fondant au chocolate known to man, and woman-kind, so I was in utter heaven!
If only all things could be fixed with this cake!
A great wine list as well!
The hip was pretty decent for the weekend I must say, but the strangest thing is that it's KILLING me today! I sit most of the day, but do have to run around the office at times but it's not that big of a place so I can't understand what is going on. Nothing about this makes sense to me anymore.
Countdown: 3 weeks till surgery!
The lovely sunflowers my friend C sent for my birthday.
23 August, 2007
Funks gone!
There are very few things that can snap me out of the "funk" I've been in feeling as bad as I do, but my friend K did the trick! We've booked a trip to London (my 2nd favourite city in the world!*) for New Year's and my lovely friend P has opened up his home to us. I have the best friends! So it's a birthday and very early Hanukkah pressie for myself! YAY!!! It's also great motivation to plough through all the PT I will be doing.
*NY is the first - of course!!!
*NY is the first - of course!!!
HENRY!!!
(yes for those of you who are not aware, I have a deep
fascination with Henry VIII - call it a morbid curiosity into his twisted mind.)
(yes for those of you who are not aware, I have a deep
fascination with Henry VIII - call it a morbid curiosity into his twisted mind.)
Various snaps of London
The Tower of London
And its' bridge, not to be confused with London bridge...
M.I.A.
I've been MIA because this weather is killing me. Regardless of the hip, the rest of me feels like it's been run over by a very large 18-wheeler.
So the update is as follows:
I still have not heard back from Dr. Kelly's office about a Dr to see regarding what the PA had been talking about. I've sent multiple messages, and as I'm sure this does not rate high on their list, it's essential to me. So off I've been doing loads of research. My parents Dr recommended a rheumatologist at NYU, and I was going to see him (even though he doesn't take any insurance and it's $550 for the first visit - what cheek!). However, I came across some other names on some hyper-mobility boards I was reading and researched them. The one that seemed to stick out for me was Jessica Davis. She is a genetics specialist and when I rang the office happily found out she takes insurance! I also spoke to her assistant and told her (briefly) my various issues, and she said that is the kind of patient Dr. Davis sees. I try to not get too excited about these little things, but it was a relief to hear that I was barking up the right tree, or at least heading into the right forest. So my appt is for 6th Sept. I cancelled the appt w/ the $$$ rheumatologist for now. I figure that if this Dr says I should see one I can do that, but if there is no need I saved a nice chunk of change, and time too.
Dr. Davis' office asked me to bring any sort of records I could obtain. I believe I had an EKG and chest films a year or so ago so contacted my GP for those and also had to ring the horrid ex-rheumatologist's office to get the last blood test results she did for me. I can't tell you how much I was dreading that she's answer the phone. Thankfully she didn't and she seems to have a new assistant who seemed very nice and hopefully will send over those results quickly. Fingers crossed.
Now it's just for me to get through this horrid weather. When will it stop???
On a happier note, my friend and I are planning to go to London for New Years. I'm not sure how great an idea that is with my hip and what situation I will be in. I figure I deserve a reward for all that I am going through, so bugger it, why not!
So the update is as follows:
I still have not heard back from Dr. Kelly's office about a Dr to see regarding what the PA had been talking about. I've sent multiple messages, and as I'm sure this does not rate high on their list, it's essential to me. So off I've been doing loads of research. My parents Dr recommended a rheumatologist at NYU, and I was going to see him (even though he doesn't take any insurance and it's $550 for the first visit - what cheek!). However, I came across some other names on some hyper-mobility boards I was reading and researched them. The one that seemed to stick out for me was Jessica Davis. She is a genetics specialist and when I rang the office happily found out she takes insurance! I also spoke to her assistant and told her (briefly) my various issues, and she said that is the kind of patient Dr. Davis sees. I try to not get too excited about these little things, but it was a relief to hear that I was barking up the right tree, or at least heading into the right forest. So my appt is for 6th Sept. I cancelled the appt w/ the $$$ rheumatologist for now. I figure that if this Dr says I should see one I can do that, but if there is no need I saved a nice chunk of change, and time too.
Dr. Davis' office asked me to bring any sort of records I could obtain. I believe I had an EKG and chest films a year or so ago so contacted my GP for those and also had to ring the horrid ex-rheumatologist's office to get the last blood test results she did for me. I can't tell you how much I was dreading that she's answer the phone. Thankfully she didn't and she seems to have a new assistant who seemed very nice and hopefully will send over those results quickly. Fingers crossed.
Now it's just for me to get through this horrid weather. When will it stop???
On a happier note, my friend and I are planning to go to London for New Years. I'm not sure how great an idea that is with my hip and what situation I will be in. I figure I deserve a reward for all that I am going through, so bugger it, why not!
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