The good news is...

that the doctor didn't tell me there is nothing wrong with me and she has no idea what it is.

The bad news is that it is some sort of collagen disorder, to be named (possibly) at a later day, and there is nothing much one can do to fix this type of thing. I kind of knew that was coming though with all of my compulsive research.

Dr. Davis is a very lovely and (seems) knowledgeable genetic doctor who has seen many people in my situation. She was understanding and patient and asked many questions. I had brought with me as many records as I could regarding various surgeries, lab tests, scans and the sort. I also wrote up a list of two pages everything that is wrong with me and what hurts. Amazing how long that list was. The best question was "are you always in pain". Right then I knew I liked her because she "gets it". I told her the honest truth, that I can't remember a day that I haven't been in pain. Sadly when most people hear you say this, they don't believe you and start asking "so what hurts at this moment". I just tell them the list would be shorter regarding what doesn't hurt, and yet, they still have their doubts. I'm not trying to play for sympathy here, I just really liked the fact that this doctor seems to understand what kind of "life" I have been living.

I was with her for about an hour and a half. She spoke to me first and then examined me. Genetic doctors do a lot of measurements she said, and they sure do! She also said that it's ironic that one can look healthy and be such a mess inside. Another thing most people don't get. "Oh, you're not feeling well? But you look just fine, nothing can be wrong with you". You'd be amazed how much of that I get.

So onto the next steps. There is no exact test for condition X as I will call it now, for lack of the "official" title at present. However, if I do have one type of condition, a heart issue could possibly be related, so to play it safe she wants me to have and ECHO done. Ok, fair enough. I am not really that nervous about that since I'm getting cut-up the next, I'm more concerned about the latter.
The doctor also said she would like to get a biopsy of some tissue so they can study my collagen. We're hoping this can be done during surgery since I will be "opened" then. That leads me to the bigger issue.

BLOODY INSURANCE COMPANIES! Why can't you just ring up, ask a question, and get a proper answer? Can it truly be that difficult or do they make it a requirement to be a)obnoxious b)daft c)not helpful when they hire people? I rang up to check that the ECHO would be covered. The response was "what is the code". I don't know, is there more than one code for an ECHO (obviously a daft question from the sound of her reply). "I can't help you without a code". Ok, fair enough, I will try to get that and ring back, but I have a bunch of OTHER codes I needed to check with her about the biopsy. She places me on hold and then finally comes back. "All codes are billable, but subject to medical necessity". I swear, a simple yes or no would be brilliant!
Ok, so what is medical necessity and how do I prove that? "You'll have to ask your doctor, she would know". These people are just so helpful. She also told me that if they are going to take the biopsy during the surgery, I need a new approval for the surgery. I said, I have that already, can't this doctor, the doctor NOT doing the surgery, just send in a separate request? Finally she concedes that yes, this can be done as well. It's like smashing ones' head in a brick wall.

As it stands, I rang and sent an email to Dr. Davis's office with this information and they are looking into it.

The moral of this story is, well, there is none, just a statement - INSURANCE COMPANIES ARE CRAP!!! But then again, you knew that already, didn't you?

Yet another doctors visit

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.

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.

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!

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.

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!!!

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.)

Various snaps of London

The Tower of London

And its' bridge, not to be confused with London bridge...