June 29th - Serious Knee Injury and Family Stuff

Yet again it has been way to long between posts.  Not much has been going on medically wise since starting the thyroid medications and things have just been pretty quiet.  My nephew finished grade six with very good marks for him, he amazingly got his junior black belt in kenpo karate at only 11 and things were nice and settled with no word from my brother and I was even able to help out a neighbour by tutoring her grandson so he can get his high school diploma.  We are going to the cottage at the end of August but that was the only thing we had planned for the entire summer so mom and I figured that we would take K and head up to my grandma's house for a week once he was out of school.  We got there, got unpacked and settled in and things seemed to be going well... until that Saturday (29th).

We (me, mom, grandma and cousin) went to go and do some grocery shopping.  After a long (and sweaty!) trip to the store we got groceries for two different family's week of shopping and headed home.  We got home and I was on the back bench seat so was kinda stuck until most of the groceries had been unloaded.  When it was done to only a few items, I went to push a case of water forward with my right leg and ended up dislocating my knee laterally and pushed it up out of the joint.  Mom and my cousin continued to empty the van and then mom noticed that I was pale white, sweaty and grabbing my knee so helped me out of the van, rolled her eyes at how I dislocated it and I went in to the living room with an ice pack and mom went to get me my medications and a drink.  It sucked and I was very grumpy about it.  No one else seemed to really understand what happened (or didn't believe that I could do that much serious damage just from pushing something with my foot).  Basically stayed off it the rest of the day and kept it elevated, wrapped and iced (thankfully I always bring my own ice packs).  Went to bed that night with a pillow under my knee, iced strapped to it and loaded up on pain meds.

On Sunday we headed out to the beach to my aunt's house for Canada Day celebrations.  Spent most of the day just sitting with my knee straight and staying off it as much as I could.  Lost out on fun time though as I couldn't go to mini golf with the kids, to get snacks with my cousins or do a bit of shopping on the strip.  Wasn't very happy.  We headed to the beach to watch the fireworks and all my cousins and the kids wanted to go to the strip to get treats and go to an arcade.  No thought to the fact that I wouldn't be able to go of course but then mom remembered that we do keep a crutch in the van so I was able to hobble along behind them. Thankfully the kids seemed to stay back a bit and stay with me.  Went back for the fireworks then back to my grandma's house.

All hell broke loose on the Wednesday when my cousin had an 'incident' that through everything out of place and added a LOT of stress to the house.  The fact that my knee was injured didn't seem to matter anymore as I had been 'replaced' and was then getting asked to do favours for my grandma and my mom.  Don't even want to get into what happened but it was typical drama for the person and the rest of the entire visit was all about my poor cousin.

I was feeling a bit better the following Sunday and thought I was okay to go with my two cousins, their two kids and my nephew to his work's summer party.  I thought that it was a place with a lot of places to sit down, I wouldn't have to do too much walking and my nephew could just go off and be with his cousins while I sat.  I had even packed a book into the car so if I could find a place I could read.  That's a laugh! Like always the 'adults' wanted to do what they wanted to do (eat lunch) and then the kids wanted to do what they wanted to do (a scavenger hunt that ended in 30 minutes that they could win good prizes with).  Well the 'adults' just said fine and headed to get lunch leaving me standing with three kids (15, 12, and 11) which I were not going to let go on their own!  So I did an entire circuit of this park not once but twice while the other 'adults' ate lunch.  Then I needed a drink so they told me to go get one in the gazebo, well there was nothing so I said I needed to get to the front to get a drink.  Well it was 'let the kids ride this ride first', 'oh they like this ride', 'you guys should do that', 'look at the cute baby animals' and finally 'let's play our round of mini golf cause it's pretty empty right now'. Then I had to go back out to the car to get the kids swim stuff and I didn't have a handicap spot because they had been late getting ready to leave (and I had been up long before we left!). We saw an opening then at the handicap spot so I moved the van closer.  The kids wanted to look in the store so I left my backpack with my cousin to watch, looked in the store and came out to find my bag sitting all alone where I left it with my cousin quite a ways away.  Then I finally got a drink!!!  After a few yards of me limping and being lopsided because I had a full back pack on my shoulder the oldest cousin finally took it from me.  The kids did the water park thing while we sat at the patio and then my cousin had an 'episode' that was embarrassing her husband so we had to leave.  I had told my nephew that he couldn't get fries because that wasn't fair to the other kids, well I go to the bathroom and find the oldest cousin eating fries and gravy so I gave in and got my nephew fries to eat.  I apparently looked really bad at this point because the oldest kid looked at me, got up from the picnic table, bought me a bottle of water and told me to drink it. I was very thankfully as the pop I got early was done in two seconds as I was so thirsty and I would finally be able to take my pain meds. We finally got home and I was glad the day was over!

The next day I literally did not get out of bed.  I was so dehydrated that I couldn't stand up without passing out and my pain levels were so high that I knew I was going to be in a horrible mood if anyone said anything. And I was right when I went out to get a drink and mom goes 'Well isn't it miss. anti-social', so I just got my drink and went back to bed.

Thankfully after one month from when I injured it my knee is feeling somewhat better.  I still think that I did some damage to the tendon but I have no doctor to go to in order to see if I did any damage.  Going to wait until my next appointment (three months from now) and ask for a new MRI done on it to see if anything is messed up. Unfortunately even if it is, no doctor will touch me.  Because of the injury, sleeping on a hard bed and all the stress (which makes pain worse for me as I tense up more) I went through three months worth of pain medications in only two months.  Thankfully when I explained it to the nurse at my doctor's office she didn't hesitate and had my doctor write me a new three months worth of meds.  I am still taking more than I normally would because of it but down from what I was taking.

Bad Week

Well I have two entries to write out but I just haven't got to them yet. The first is about having a bone scan and then a recap of my appointment with my cardio / GI / internist that went well. Basically we came up with something that is giving me a LOT more energy. However that has it's down fall too. This last week has been hectic:

Friday - Working at nephew's book fair then over to a friend's place for 'Girl's Night'
Saturday & Sunday - Not feeling well, mom tells me I should stop working the book fairs as they always end up with me getting sick and maybe we shouldn't keep pressing my luck and get me real sick.
Monday - Working at nephew's book fair
Tuesday - Getting some things done around the house
Wednesday - Tutoring for 2 hours, out for supper, some shopping and a movie with mom
Thursday - Went shopping in the states until 2, had a nap then my friend came over for a few hours in the evening
Friday - A small amount of shopping with mom (had to pick up some things at a store that is going out of business)
(Plus tomorrow I am going to my friend's house for "Girl's Night" and Sunday to her parents house for her family birthday dinner)

It's amazing to have energy but the problem was that before I would always end up exhausted before the pain set in so I had to rest before hurting myself. Now I have energy so I just keep going and it's leading to a lot of pain problems. Wednesday night at the theatre I was so close to crying in the theatre I was in so much pain, even after a double dose of breakthrough meds!

Then today mom and I had to go to the store to get some towels (One of my Christmas presents from my parents was that they are going to redo my bathroom in a zebra pattern) but the store closes in a week so wanted to get it while I could. Then mom informs me that she has some grocery shopping to do as well. By the time she was ready to check out I had to go sit on the bench and wait for her. Got home and crawled back into bed. Was in too much pain to sleep but it was the only way I could be bearable. Lying in my warm waterbed was the only way to get comfortable.  Then tonight I don't know what was going on but I had my pain meds and had a heating pad on my lower back, up to my mid back then shoulders than neck and now back down to my lower back.

I am getting very down about the amount of pain. I finally have energy but I am in so much pain I can't enjoy it :( My breakthrough meds are useless, I might as well be eating tic-tac's and unfortunately my doctor will not prescribe the other breakthrough meds that I usually rotate with so I am taking at least one pill a day now with it doing barely anything and advil only helps slightly with some of the muscle pain. I don't want to increase the dosage of my long acting meds but I don't know what else I can do :(

Unexpected Surprise and a Little Upset

Well I know this should have been about my mom and what is going on (and has gone on) but something else has come up that I wanted to blog about.  Because of all the moving I did with university and moving back home and honestly a lot because of EDS and the accompanying issues, I am down to one good friend in my hometown.  This friend "S" has been around a long time in my life.  Ironically our parents were acquaintances before we were even born!  They used to bowl on a league together but then lost touch with each other when my parents stopped bowling.  S and I became friends in grade 3 when I changed schools and we quickly learned our past history through out parents.  We were really close until about grade 8 and we grew apart.  We were in different levels at high school and in different circles of friends but were always friendly with each other, just didn't get together as often.  When I left to go to University we lost touch but when my nephew was born we got back in contact and kept in contact.  She was the only person I knew in my home town friend wise when I had to leave university part way through my second degree.  She had been there when I had some of my knee surgeries and always stopped by with Slushies and a movie. We grew apart a few years ago again mainly (knowing this now) as I fell into a deep depression and severed most ties with friends.  Anyways obviously we got back in contact, and she was married one year ago yesterday.  I was not in the wedding mainly because she knew I did not have the money to do it, didn't want to put a strain on our friendship (as we had both had friends that we stood up in for their weddings then the friendship would end) and honestly because my health couldn't take it.  We talked frequently on facebook and started spending more and more time together again as she had more problems with other friends.

Anyways, last year around the beginning of April she stopped by the house for a quick visit and we were talking about how my neighbours were pregnant (the girl who lives next door is one of S's good friends sister) and S gave a small smile and said "I'm about a month now" and rubbed her stomach.  Mom and I were so happy for her and then she said her mom would kill her because she wasn't supposed to be telling anyone about it as it was so early stages but that she knew I could keep the secret.  Since then she ended up losing her job and we fell into similar circumstances again.  Not having money to go out shopping all the time or movies every week so since this summer we have basically been getting together weekly and scrap booking or doing some occasional trip across the border for shopping.  She confined in me all her fears and worry's about being pregnant and not knowing what to do with a baby (she is pretty much the youngest in her entire family).  She was due to have her baby boy on Halloween.  She even talked to me about the name of the baby and told me that only family knew and they didn't want anyone else to know as they didn't want to 'jinx' it.

Last night I went facebook and was very surprised to see her brother post a picture of a gorgeous little baby and then confirmed that yes, S had her baby.  I went up to the hospital today around 2 and stayed there while they took him to get circumcised and tried feeding him (behind a curtain) and just be there.  I found out that her husband had dinner plans with his family and S's mom had plans to go on a day trip with family (remember she gave birth 3 weeks premature so plans had already been made) and that S would be alone from about 5:30 until the next morning!  I quickly offered to stay in with her and she looked relieved to have someone there with her.  I ran a few errands and got back to the hospital around 5:30 until 9ish when she was going to attempt another feed than get settled down for the night.  I found out that I was the only friend that had come up to the hospital to see her so I was the first non-family member (technically) to hold the little man.

I held her little boy most of the evening and even admitted to her that I had regrets.  If I had of known that I would end up disabled and my parents having custody of K, I would have stopped school when he was born so that I could be there to watch him grown up more.  Then I told her how I wasn't going to have kids and even said that I would love to be able to watch a little baby grow up as this would be my only chance.  I told her that if she needed absolutely anything to just call me and that this weekend when her husband has to work, I have no qualms about packing up an overnight bag to go in and stay with her.  Both her and her mom looked a little more relaxed when I said that.  I helped change a diaper, helped with the creams and gauze from the circumcising and just held and rocked him and she remarked that I knew what I was doing and she was going to need help and was glad that I knew what I was doing lol.

So all of that was really good news... the bad news?  I am in pure agony right now.  My entire right leg is in spasms and painful (even a pain killer isn't dulling it) and my right arm right from neck down to fingers is burning.  It really makes me mad that just going in and getting to know my best friends new little baby and holding him for a few hours has caused so much pain.  It is just so frustrating :(  Going to have to double up on the pain meds if I want any chance to sleep tonight :S

Appointment with Dr. B (GP)

This appointment actually happened on May 24th but I am just getting around to typing it up now as my shoulder is still causing problems and haven't had much time that I could sit down and concentrate and remember all about the appointment. Originally this appointment was made to discuss my shoulder issues, go over my report from Dr. M (the crappy OS mentioned in this post) and to get my medications refilled.  But of course that isn't really how it turned out.

I had a mid-afternoon appointment and knew that I would end up being there a while as there were a handful of people already in the waiting room when I arrived.  I finally got called and went into the nurse's room (we will call the nurse "P") where she does the pre-appointment part where she asks why you are there, gets any paperwork ready and does all your vitals.  Thankfully I had made a list of all the things that I needed to get addressed during the appointment.  P did my vitals then I started on my list of issues.  I gave her all the paperwork for my dental surgery (Going to be on June 18th for those who are interested - just fillings though), asked about getting my vitamin D levels checked, gave her a list of the medications that I needed refilled and mentioned about the xrays I had done (both knees, right hip and right shoulder before seeing Dr. M; right shoulder a couple of weeks ago when I injured it).  P filled out all the paperwork for the dental surgery, wrote up a blood work sheet so I can get my Vit. D levels checked, printed off the latest shoulder xray (normal of course) and printed out the medications that I needed to refill.  Then it was just waiting for my doctor to become available (a drug rep and the building owner stopped by just before my appointment so they got in first :( ).  I was quite nervous about seeing Dr. B based solely on the issue with Dr. M and the fact that my mom was not at this appointment with me (Dad was out of town and mom had to be at home for when K got home from school).  I am going to put all of what happened in little sections so I don't forget anything and it doesn't get too confusing!

Pre-Op Paperwork - He read through the diagnosis's that I have (Mitral Valve Prolapse is on there so my old cardiologist must have diagnosed me with it, he just put a question mark beside it), basically MVP, EDS, Sinus Tachycardia and Syncope are listed.  All my medications and doses are also on the form.  Dr. B then pulls out a report he got from the anesthesiologist and was quite impressed by it.  It went over the no locals aspect and said that they had to be very very careful when moving me (this is something that I did NOT tell him), everything should be routine but that I may need to have emergency intubation and resuscitation which sounded a little scary to me but my doctor seemed pleased by it and said that it was one of the longest reports that he has ever seen from an anesthetist.

Testing - Dr. B agreed completely with the suggestion of getting my vitamin D levels rechecked to see where they are and what we need to do in regards to dosing the vitamins that I do take on a daily basis.  I then asked if / when I should get another DEXA scan as it's been slightly more than two years since I had my last one and I have been on an osteoporosis medications for 20 months now and would like to know if we are making progress or if we should be changing things up or what ever.  At the very least a new baseline should be established.  Dr. B fully agreed with me but does not want to do ANYTHING until after the surgery. He then checked my chart and saw the medication that I am on for the osteoporosis and says that there is a new formula of the medication that you take weekly instead of monthly that he thinks will be a better fit for me.  You don't have to follow any of those stupid don't drink for x minutes, don't lie down for y hours, don't eat for z minutes.  Then the fact that it has to be the first thing in your stomach when you wake up and taken with an entire bottle of water which makes it tricky as I take my morning meds right when I wake up also.  Apparently this new formula of the drug does not have all the restrictions that the old one has and is supposed to be easier on the stomach which is definitely important especially after discussing gastroparesis and medication absorption.  He also says that it should most likely stop at least part of the heartburn issues that I get after taking it.   The only down side to this medication is that I have to take it weekly instead of monthly but that's not a big deal as I do up a weekly pill organizer every week anyways to throw it in.

Medications Refilled - Figured this would just be a quick signature on the already printed off script but was surprised when he went to hand me the paper and then quickly pulled it back saying "Wait a minute, what do we have you on now?" (This is because we switch between two different long acting and two different breakthrough meds to keep down tolerance).  He looked at what I was on and said that there is a new medication either just out or coming out soon that is a narcotic but it also has neuropathic pain reducing qualities too it as well.  I asked him if that meant I might be able to combine my pain medication as well as the medication that I use for nerve pain but he wasn't sure but that we would look into it more after I have the surgery.  He didn't give me the name of it as he wanted to do some more research on it himself and isn't even sure if it is out on the market yet.

Shoulder Issues - The final issue was my shoulder.  He asked how the appointment with the OS went and I told him all that happened.  He very quickly skimmed the report and at the end it said that I had not decided if I wanted a new MRI ordered or not (huh??).  Anyways I told him that he wanted me to do physio but would not set limits, when Dr. B asked why I said I didn't know but that I wanted a time limit to try it or something and Dr. B says that's totally reasonable and asked why he wouldn't so when I told Dr. B that he said physio doesn't work like that he was confused.  He seemed disappointed because this doctor is so young and Dr. B thought that he would be the best chance because he might be more open minded.  He then told me that he wanted me to call the OS's office to get a new MRI ordered and if the OS won't order it then to just go right back to Dr. B because he feels it is definitely needed.  I then asked him if I could have a copy of the report for my files and he said of course and printed it out for me.  I told him that I just like to keep everything together just in case I need it down the line and he said that with the number of doctors and problems I have going on that that is a smart idea :)

So I left the appointment with a stack of papers - report of the shoulder xray I had just after injuring it, prescription for my pain medications, a requisition to get bloodwork done again, a copy of the forms that had been filled out for the surgery, the report from the OS and a card to go back two days after my dental surgery. 

However, by the time I had read through the report from the OS (Dr. M) I was furious!!!  So many inaccuracies and plain out lies!  I gave in and called the office on tuesday (May 29th) and as of today (June 1st) I have not heard anything from the office.  I am going to give it another week and contact my GP again about it.  After reading the report I don't really care to ever see this OS again.  There is enough contradictions, lies and things completely omitted that it is going to end up being an entire other post that I will get up this weekend (hopefully!).

Slightly shocked!

So on friday I had my pre-op anesthesiologist appointment for the dental surgery that I have to have done (but still don't have a date for).  It was at 8am in the morning in town (20 minute drive) so that sucked!  I had all the paperwork done and figured it would be an in and out appointment.  I was kind of right.  I get called back and the doctor (can't remember his name, he had a strong accent and his last name was quite long) and we start going over the paperwork.  Of course one of the first things is medications.  He asked why I was on the pain meds and I described that I had EDS and went into the little talk.  "It's a connective tissue disorder that affects the collagen in my body.  Main problems are my joints because they dislocate and become injured very easily".  I then show him the thumb to wrist and backwards fingers because he looked honestly interested.  I felt bad though as I usually take the article dealing with EDS and local's but figured I had done this enough with no doctor's looking at it so I gave up.  We talked for a good five minutes just on EDS and how it affects me and how it would affect or change the job of the anesthesiologist in the operating room.  He then asked about the beta blockers so I go "Well I have a condition called autonomic dysfunction..." and he interupts and says "Oh I learned about that seven years ago!  Is that part of your syndrome?" and seemed really excited about it and started asking a whole lot of questions.  After like another five minutes talking about that.  He then continued with the paperwork, asked about anesthetics, was very interested in the fact that the local's don't work and then asked if I had been officially tested for an allergic reaction to local's! I had never heard of that.  I just said that I figure because they don't work anyways it doesn't matter if I have a true allergy or not.  Might ask my GP about it next appointment though.  He did the breif physical at this point and asks to see the range in my neck then kinda grinned and said "I guess we don't have to worry about that huh?".  On the way out he said he was glad to meet me and that I was giving him a lot of reading this weekend cause he was going to go and learn more about EDS and refresh himself with the Autonomic Dysfunction.  Unfortunatly because I don't have a surgery date yet there is no telling if he will actually be my anesthetist or not, but he took really good notes in case it's someone different!

If you remember, last week I had xrays done on my shoulder.  Well I called the GP's office and of course no abnormalities showed up.  In a way I was hoping something would show up for once that can be fixed.  Guess I will have to see wha my GP is going to do about it now.  I am already wanting to ask for an MRI since mine is so old and done before I injured the shoulder.   Thankfully he is back in office again and I have an appointment on thursday to see him.  Will have to get started on my list of things to go over soon so I don't forget anything!

What A Tuesday!!

So last sunday I was chasing our little jug (half pug and half jack russel) and went to get something from him when he was under the stereo.  I got down on my stomach and reached my right arm out under neath like I have done so many many times before.  This was different.  I felt almost like a tearing sensation instantly.  I some how got up and sat back down on the couch.  Mom did the normal "Oh now what did you do" until she looked at me.  I had the hallmarks of bad pain - sweating, pale, dizzy, and clutching my shoulder.  We instantly put ice on it and mom asked if I dislocated it.  It didn't feel like that type of pain though.  I took pain killers and iced it the next day but by tuesday it was getting worse.  I have actually lost ROM (range of motion) which I have never ever done - even after surgery or bad dislocations.  My collar bone is sticking out quite a bit further than the other side and I can stick my thumb in behind it.  Mom then decided that we needed to go and get it checked out.  As we had another appointment that day we stopped off at my GP's office to ask if they could order xrays or if they thought I should go to the ER.  The nurse said they would write up a request for it and as I already have pain meds it was decided that the ER wasn't necessary.

That would have to wait though as I had to go and get my yearly echo done on my heart.  The test went by with no issues which is great but the doctor doing the echo was interesting.  He made small talk for a bit and found out the town that I used to go to school in and wondered how often I go up there.  Then he seemed really interested in my EDS and specifically the type of pain that I had, what areas, what treatments I have tried and on and on.  Near the end he goes to write something down and then hands me a post-it note with his name and phone number on it and asks that the next time I am in the other town that I give him a call because he would be very interested in seeing if we could get my pain under control!  I was absolutely stunned as was my mom.  Very greatfull as well that he has taken this interest and actually wants to work WITH me and tackle the chronic pain in my body!  When we got home later I, of course, googled him and found out that he is at a clinic called natural drugs & accupuncture therapy.

After the appointment for the echo it was off to the hospital to get xrays done on my shoulder.  Thankfully it was not that much of a wait and I was back getting them done in no time.  I go in and they ask whay are you here (injured shoulder) and underlying conditions (EDS) and when it happened (sunday).  The one lady then goes to line me up but couldn't get one shot so the other lady had to come out to do it.  However, this lady was NOT gentle with my shoulder and dug her fingers in all around the front of my shoulder because my collar bone was not 'right'.  This lead me to remember that a few years ago when I got my first cortisone shot in that shoulder my rheumy remarked that I had really strange collar bones and that they were hard to 'pin down'.  They also did a shot that just about had me in tears which really really sucked!  Thankfully I had a few pain pills in my purse that I was able to take right after before the pain set in really badly!

Mom was getting concerned with my shoulder so we tried to make a sling for it that didn't work that well so my mom decided to call my brother as he had shoulder surgery about two months ago (long long story!).  He brought the sling over and said I could have it as he didn't need it anymore.  He asked me if I dislocated it and I kinda laughed and said no, I do that every couple of days.  He had a look of pure shock on his face and I think it kinda is starting to really realize just how bad the EDS can be.  I have used the sling a few times just to make it so I can't use my right arm.  It is very hard not to as my bad wrist is my left one so I can do most things strictly right handed but not visa versa.  The sling also takes a bit of the pressure off of the shoulder but I still can't just 'rest' my shoulder.  I can not 'release' the muscles to rest it.  I can't do that with any of my joints anymore as I have to always have control or they will go out.  Strange thing is that my shoulder hurts the most when I am lying down (which I have read is indicative of a slap tear but I dont know). 

The nurse at my GP's office told us to call on tuesday to see if the xrays showed anything (most likely not, they generally dont show up on xrays) and to go from there.  Unfortantly my GP is out of the office for two weeks so not sure what the next step will be. Just hoping I dont have to go to the ER to get a referal to an OS quicker as I despise two out of the five or six OS's in this town.  One of which just told me a month ago that the only thing wrong was tendonitis!

Mad at EDS

Well I am officially mad at EDS.  I have always always took pride in the fact that I never (and would never) let it interupt my time with my nephew. (I also realized I have never really mentioned important things about my nephew which I will at the bottom).  Even if I was sick, I still went to his activites.  I have never missed a grading for his karate, even though one time I had the flu and couldnt keep anything down (stayed near the bathroom for that one!) and have also been on crutches during one and many various other minor health issues.  That was all until today.

A week or so ago, K brough home a permission form to go to see the new Disney movie 'Chimpanzee' with a bunch of the intermediate and senior classes at the theatre in town.  They wanted some parent volunteers so I asked K if he wanted me to go and he definitly did so I signed up.  Yesterday mom went in and talked to the teacher about it and found out that I could ride on the bus and go as a chaperone instead of just a 'parent'.  Kyler was excited and I was so happy to have a field trip that I could actually do (can't do the outdoors type of trips or anything physical so am limited to what trips I can go on).

Last night we were at his karate class (he got a stripe :) ) and I went to move over on the chairs to get a better view of him and my right knee shifted at the same time as a muscle spasm and subluxed pretty badly.  Mom was very worried and I apparently went white.  Of course I didnt bring my purse so even if I wanted to go to the ER to get it looked at (and documented), I didn't have my health card to do so.  I also didn't have any of my pain medications or even some advil to counteract the swelling.  Once class was over I managed to get up and get to the van so we could go home.  I got that lovely trifecta of pain - nausea, cold and sweating for the entire ride home.  We got home and I got changed and headed for the couch where I put ice on and off it for the rest of the night.  Mom looked at me before I went to bed and 'told me' that I was not going on the trip as I couldnt sit in the theatre seats that long and being on the bus (with steps) wasn't a good idea. I reluctantly agreed.

So today mom went in and told K's teacher about what happened and she was slightly shocked at home much damage I could do without actually doing anything.  Mom told her that this was why I couldn't normally volunteer for things as I never knew what was going to happen and always hated to have to cancel.  K's teacher was sympathetic and told mom to tell me to not worry as there would be enough parents at the show so she wasn't going to be short on volunteers.  I still felt horrible, not because I wasn't there to help the class, but becasue it was something I told K that I was going to do.  Mom talked with him this morning about it and he seemed okay with it (he knows the basics of EDS and also lives with me day to day to see the actual living with EDS) but it still bugs me.  I was almost in tears when he got home and I apologized to him.

This was one aspect of my life that I refused to let EDS take over.  He had a pretty crappy beginning to life and I was never going to let EDS define anything about our relationship.  To those that don't know the breif story is that when K was born he lived with his mom until he was 6 months old and she had a nervous breakdown (she has schizophrenia and now lives in an assisted living complex as far as we know) so K lived at my parents house with my brother for a few months that summer (I was also at home because it was school break as well as I had just had major knee surgery) and after a few months children's aid thought he could handle K alone so my brother got custody of him when he was around 8 months.  I never liked this set-up and knew from day one that at some point my parents would have custody of him (during the time at our house my brother was stealing my pain meds so I knew something was up).  I went back to school and things seemed 'okay'.  I got a call the next march from my mom letting me know that everything was okay but K had been removed from my brother's custody and thankfully was now in my parents custody for the time being (we had discussed this outcome before and my parents said that the main goal was we never wanted K to go to foster care and that my parents would do anything they had to do so they could get K).  K has never left our care since.  Both parents gave up their rights and were glad that my parents had custody so thankfully it was an easy case with no disagreements.  When I finished school and my health declined so fast I was fortunate enough that my parents had no hesitations about me moving back in full time, it was just expected and actually made things a lot easier as at that time both parents worked full time (both are retired now) and they had K to look after so I stepped in and did what I could to help out.  So that is where we are now, my parents house and they have custody of K and I live there as I could not manage on my own.

As I learned of the EDS I immediatley knew I wasn't going to be having kids but realized I lucked out and get to have the same experience and love with helping to raise my nephew.  Just sucks that after fighting so hard EDS finally won out today.  I will be doing everything I can to make sure that it never happens again!!!

Yet Another Bad Doctors Appointment

I hadn't posted this yet as it was really bothering me and I just wanted to forget about it.  But enough timw has passed now that I can finally see it as just another horrible doctors appointment.  This appointment was made a few months ago by my GP because I had asked about what to do with my shoulder since my old Rhemy used to give me cortisone injections but my GP was set on me having no more cortisone shots because of my osteoporosis.  I even had new xrays (right shoulder and hip and both knees) ahead of the appointment so we wouldn't waste any time for me having to get them done and have a follow-up appointment.  Well it really didn't matter.  We show up at the appointment and find a small waiting room, probably 10 chairs that were all full and there were about 4 people standing with no room left anywhere!  That was the first hint that this might not go well.

After a very very long wait I was finally called to go back to a room, after another long wait the doctor (Dr. M) finally showed up.  He comes in and introduces himself and then asks what I was there for.  I told him for my shoulder and he asked me where it hurt.  I showed him the general area and then he asked about my medical history.  I tell him about the EDS and the osteoporosis and that I have many dislocations because of the EDS.  He asks me what joints dislocate and this occurs:

Me - Well my shoulder has dislocated a few times
Dr. M - Documented? 
Me - No, I can get it back by myself.  I also dislocate my wrists quite frequently
Dr. M - Documented?
Me - No, I was taught how to put it back in
Dr. M - Anything else?
Me - I have dislocated my knee before but had surgery that helped it until I dislocated it last year
Dr. M - Documented?
Me - No, I have never had to go to the ER to get it put back in
Dr. M - Well, I will tell you now that you have never dislocated your wrist.  Dislocating your wrist is a major trauma and you would have ended up in the ER becasue of it.  You probably have not dislocated your knee either because you wouldn't be able to put it back in by yourself.  Things like fingers can dislocate and go back in easy (as he points to his finger to make sure I know what a finger is?)
Me - I know my knee has dislocated, I have had 2 surgeons tell me that they could dislocate my knee cap with just their pinkie fingers
Dr. M - Well that is not a knee dislocation, that is just your kneecap moving out of place

At that point I figured that we would just forget about the dislocation aspect and try to go and get on to what was going on with my shoulder.  He asks me where the shoulder hurts and I tell him (basically as if I had a bowl over my shoulder, that is where it hurts).  He then says, well the MRI you had done shows that you have Rotator Cuff Tendonitis.  It took me a minute to figure out what MRI he was talking about and then I realize that I had an MRI of my shoulder done at least 2 years ago when my neck and back were bothering me and they wanted to see if the shoulder played a part in this or not.  I tried to explain this to Dr. M but he wouldn't listen.  I told him that that MRI was done BEFORE I had the shoulder problems but he still said the tendonitis is what is causing my problems.  I asked what about the dislocations, the new pain, the weakness to the point that it feels like my shoulder is going to just fall out of the joint, all of that he says is the tendonitis. 

Around this point we got into a discussion about cortisone injections and he basically bashed my rheumy big time for ever giving me one!  He went on and on about how they were not needed and the only time that they should be done is when one is in a lot of pain and the give them a cortisone shot to dull the pain so that the person can do physiotherapy.  It was then that I mentioned that physio does not work for me and makes things very worse.  I then mentioned that fact that I have had physiotherapist (PTists) that have refused to treat me because I become worse instead of better.  He kinda almost laughed at that and said that obviously they didn't know what they were doing and asked where this had happened.  I told him that I had about 4 PTists in three different cities all working on different joints that said this.  He then goes in that the only thing that can be done about my shoulder is physio.  I asked what the other options where and he tells me there is nothing and that I need to strengthen the other tendons and muscles in my shoulder to make them compensate for the bad tendon.  I tell him that it is a very fine line in EDSers that you dont want to make your joints too strong because that can cause as many problems.  He completely shut down that idea and told me that EDS does not affect the muscles (it was around this time that mom 'checked out' and knew that this appt wasnt going to end well).  I disagreed with him and told him about the different talks at the confrence about muscles and physiotherapy and how these work (or dont work) in EDSers.  Get this he then tells me................... "Maybe you should go to Baltimore and see a doctor there".  I literally laughed and said if I had the money I would be on the first flight there.

We then get into this circular discussion about physio.  I tell him that I had a full assesment at the hospital physiotherapy department and was found that all my joints and muscles were at the strengths that they should be and any more muscle building could be detremental.  He than kinda smiled to himself again and basically insinuated that the hospital physiotherapy (the only one covered by OHIP) was worthless and meant nothing.  He told me he wanted me to get into a private PT if I wanted to get good care (oh and of course he had the perfect PTists in mind - made me think he got a kick back for referals).  I then tell him that the private PTist I have seen for years is actually the head of the hospital physio department.  He said that I needed a good private PTists that could work on strength building exercises and resistance exercises (which are the no-no types for EDSers).  Finally, to humour him, I said okay if I try the physio how long do I have to try it.  He then says you can not put an end time to physio and it completely depended on progress.  I said that that was not acceptable to me (and told him about my old OS and the knee physio debacle) and that I would try it only if it was for me to re-evaluate in 3 or 6 months.  All I got was 'It doesnt work that way".  I then said okay, if I try the physio and it doesnt work, then what is the next step.  Then he switches his mind and says that there is no point me trying it because I have already concluded that it wasn't going to work.  I said that I would do it all as long as I knew that if (when) it messed up the shoulder even more, that there was an option to go from there.

He then starts to tell me about this famous baseball player who was before my time (had to laugh at that as this doctor is only about 5 years older than I am) and his joint issues etc and goes on and on.  At the end all I said was "Yes, but he didn't have EDS".  I then flat out asked him how many EDSers he has treated and he tells me that he has treated 5!!  I looked at mom and laughed (he has only been out of med school for about a year and has only been in practice for about 9 months).  I asked him again if I do physio I wanted an 'end limit', either a time frame or a physio goal that once I hit and if it didn't work that there would be something to fall back on.  Again he said there was no point in it.  This is when I started to cry.  I then asked that shouldnt we at least get a current MRI and see if the tendonitis is still even there or if it has 'gone away' or progressed and for the first time he finally agreed with me!!  Mom then asked if there was a chance to get a cortisone shot for the pain  and he said he refuses because I should have never had the ones I had to begin with! He said that I was already at a higher risk for osteoarthritis in the joint because of the 4 shots and I laughed and said I already had osteoarthritis in most joints.  He then tells me that I do not have it in my shoulder (sorry I am going to beleive my rheumy who told me I absolutly had it) and he would prefer to wait for me to get it when I was old instead of in my 30s.  I was so frustrated at this point that I could barely talk.

This is when he switched to being a psychiatrist!  Asking me if I was seeing anyone for consuling and that I had a chronic condition and I should be talking about it to someone and it obviously upset me and asked if I got this upset often, to which I replied "Only when talking with some doctors" and here comes the gem........... "Well, maybe you should stop going to doctors"!!!!!!!!!!!!!  Then he said he would order a new MRI and told us that we could decide what we wanted to do and he left.  I am not sure what he meant by deciding what to do as the only option that he offered (physio) he completely took back and told me it was worthless!  At that point I got mad and looked to mom and asked her if she noticed anything strange about the appointment.  She said no and I asked "Shouldn't someone doing an evaluation on shoulder issues actually, you know, touch the shoulder???".  After a minute we looked out and he was long gone so we left.  (Note - It has been a few weeks now and we have come to the conclusion that he never even ordered the MRI!!)

But here is one of the more frustrating parts.  On the way home my mom admits that this is the doctor that my brother saw last month to do surgery.  I was pissed!!!  I had asked her constantly for the name of the doctor that he saw and she kept saying she didn't know.  I told her that I wanted to know because I didn't want to waste my time on a doctor that would treat a person so quickly with surgery for a problem that was completely and entirely self inflicted (long long story!).  And if I had of known that this was the doctor, I would have never agreed to getting a referal to him!  Then I got even madder at her telling her that she just wasted a few months of my time that could have been spent waiting for a doctor that was actually good.  It still pisses me off.  There is more to this little story but this entry has gone way too long already.  Sorry for the heavy text but there was a lot of disrespect in this appointment that I wanted to post.

Journey to Becoming a Zebra - The Facts

This list covers everything that has gone on since the day I got my Ehlers Danlos Syndrome diagnosed.  I am probably missing a bunch of things but these are what I have been able to remember just by memory.

Doctors:

• 6 Orthopedic Surgeons
• 5 Physiotherapists
• 3 Rheumatologists
• 3 Dentists (2 were Oral Surgeons)
• 2 Pain Clinics
• 2 Cardiologists (and one is also my internist and gastroenterologist)
• 2 Neurologists
• 1 Allergist
• 1 Dermatologist
• 1 Podiatrist
• 1 Geneticist

Procedures:

• 8 Echocardigrams
• 8 MRI's (that I have remembered)
• 5 Cortisone Injections (1 right knee, 4 right shoulder)
• 4 Holter Monitors
• 4 Dental Surgeries (1 widsom tooth extraction, 1 molar extraction & 2 fillings)
• 3 Bone Scans
• 3 Dexa Scans
• 1 CT Scan (right knee)
• 1 Joint Ultrasounds (right knee)
• Numerous - > X-Rays, EKG's and Bloodwork

Medications Tried:

• 8 Breakthrough Pain
• 5 NSAIDS
• 4 Off Label Uses
• 3 Long Acting
• 3 Anti-Depressants
• 3 Beta Blockers
• 3 Topical Pain Killers
• 2 Migraine Prevention
• 1 Stomach
• 1 Osteoporosis
• Numerous -> Vitamins and OTC (Over The Counter) Medications
• Other non- EDS related medications (anti-biotics etc)

Joint Problems:

• Dislocations - Knees (both), Wrists (both), Thumbs (both), Elbows (right) & Shoulder (right)
• Tendonitis - Ankle (left), Knees (both), Wrists (both) & Shoulders (right)
• Bursitits - Ankle (left) & Shoulder (right)
• Osteoarthritis - Knee (right) & Shoulder (right) (confirmed)
• Carpel Tunnel - Both Wrists
• Degenerations - Shoulder, Neck & Back
• Bone Spur - Neck
• Disc Herniation - C5-ish
• Stenosis - Cervical Region
• Reverse Lordis - Lumbar Region
• Ganglion Cyst - Ankle (left)

Treatments:

• Physio - Ankle (left), Knees (both, pre & post-op), Wrists (both) & All Body Assesment
• Bracing - Ankle (left), Knees (right), Wrists (both) & Thumb (both)
• Ultrasound Therapy - Same as Physio
• TENS Therapy - Same as Physio
• Contrast Baths - Wrists (both) & Thumbs (both)
• Accupuncture - Knee (right)
• Accupressure
• Massage Therapy
• Hydrotherapy
• Orthotics

'New' Conditions:

• Chronic Pain
• Chronic Fatigue Syndrome
• Fibromyalgia
• Depression
• Anemia - Iron & B12
• Severe Vitamin D Deficiency
• Sinus Tachycardia / Possible Mitral Valve Prolapse
• Local Anesthetic Allergy (and they do not work)
• Sedation Does Not Take
• Tylenol & Asprine Sensativity / Latex Sensativity
• Severe Chronic Headaches
• Fallen Arches / Flat Foot
• Autonomic Dysfunction / POTS / Dysautonomia
• Osteopenia / Osteoporosis
• Probable Autoimmune Disorder
• Gastroparesis / Gastritis / GERD & Bile Reflux
• Osteoarthritis

Journey to Becoming a Zebra - Part Two

So in early August of 2000 I went in and let Dr. S (Orthapedic Surgeon) perform a Lateral Release on my right knee.  He actually proposed that he do both knees at the same time because they would both eventually need to be done.  I refused that because of, well common sense really.  It was basically decided that I would get my right knee done then as it was the worst one and then go back the next summer and have the left knee done.

The actually surgery went okay and it was expected that I would make a full recovery and get rid of most of the tracking issues.  He had to do a clean up of under the knee cap and said that my knee was very 'soft' (Chondromalasia Patella) and could be dislocated easily.  I was on bed rest for a while but was up on crutches pretty quickly and didn't have to wear any type of brace.  I was in physiotherapy immediatly after and got my strength and ROM back almost instantly.  Only down side - No pain relief at all.  Over the next year I would drive back home (2.5 hours from school) to see the doctor only to have him tell me "once you can straight leg lift 10lbs you'll be fine", then "once you can lift 15lbs" etc and kept upping that by 5lbs each time (which later in retrospect a new physiotherapist was disgusted at that as that type of weight could have seriously affected my hip).  I was also told many times that I had 'ugly' scars and that I should get a plastic surgeon to sew me up 'next time'.

The last appointment I went to of that surgeon was when he suggested I drive the 2.5 hours home, during final exams, have a cortisone shot in my knee then drive the 2.5 hours back to school that day.  I reluctantly agreed and when I went to the appointment he looked at me like I had two heads and said that he would never give a cortisone shot to someone so young (19 at the time).  I was livid!  I later got all the reports from him and apparetnly every appointment was my last, as he concluded at the end of every report "I have discharged her from my care".

After this I went to the specialist sport medicine center in the closest teaching hospital near by (which happened to be half way between were my parents lived and where I was going to school).  The doctor (Dr. F) was amazing and right away realized that the lateral release was the worst thing that could have been done because my ligaments were too lax and not too tight.  He told us that instead of the surgery stopping my knee from subluxing to the lateral side, it was now subluxing both laterally AND medially.  He thought he knew what would work but wanted to go in for a scope first to look around and decide which to do.  I had the scope done on March 22nd, 2002 and went in for a full repair of the lateral release (later retinacular repair). I did pretty well with that one.  The only thing that didn't go well is that I had to wear the immobalizer brace longer than expected because I was actully getting my range of motion back too quickly.  Things went well until I aggrevated the knee and ended up with tendonitis and bursitis in the joint that I had to go back to Dr. F to find out what I could do then.  This proved to be a great thing!

I went in and of course, because it was a teaching hospital, I saw a few different level's of students before I actually saw Dr. F.  Well I was being examined the fellow noticed that I had hypermobile knees and asked me to do a few 'tricks'.  Then when Dr. F came into the room, the fellow said that he thought I might have a connective tissue disorder, but Dr. F said that no I probably didn't because I was so short.  We finished the appointment and we decided we would try a cortisone shot (Couldn't get it then because I had drove myself to the appointment so would have to drive an hour back at that point).  That litle thought stuck right in my head though. 

I got home and started looking into it and it was just so eye-opening.  All those things that we blamed on the prematurity, all those things that we just never had a clue as to why they happened - they finally all fit into the description of EDS.  I became almost obsessed about it and researching all I could about it.  In retrospect my mom thought I was just trying to make something fit to explain things and that it was so rare and there was no family history it just didn't make sense.  I didn't drop it though and did some researching and found about a geneticist that was very knowledgeable about EDS about an hour and a half away from my univserity town.  I went in and basically told my GP to refer me to her (Dr. M) and he did.  Dr. M's office contacted me with things that I had to do (family history, family tree etc) and said that they would contact me in a little to go over these things.  Generally you call and talk to a student and then that student will go and talk with Dr M, and if Dr. M thought she needed to see you, someone would call and set up an appointment for you.  Well I skipped steps.  I did the phone interview and given an appointment date a few weeks later.

Obviously, I saw this Dr and she told me that I basicaly had a textbook case of EDS, except for the fact that it didn't seem to be in my family.  My dad had some hypermobility and a few joint problems but also a lot of 'anti-EDS' situations.  His issues could also have been because he had polio as a child.  We found out at this appointment that I was premature because I had EDS, that I would need to get into a pain clinic, get into a good doctor to monitor my condition and that I would need to research my condition a lot because most doctors wouldn't have a clue as to how to treat me.

At this point we started the trial - and - error part of the post - EDS diagnosis that we all go through.  But it is late here, and I have typed up a lot so there will be a part three to all this.

Good doctors appointment!

Last week I had a very surprising doctor's appointment.  Everything went well, we found something that when corrected most likely will make a great improvement, and I was able to check almost everything off my list (and the one not crossed off was addressed).  So here is what went on:

1) Rheumy I hated from a few months ago had never sent anything at all regarding our appointment.  Probably because he has disappeared.  Literally disappeared! The College of Physicans and Surgeons has no clue where he is, his website has been taken down that the dr who shared a building with him has no clue where he has gone and rumours are he had no clue he was even leaving town.  The local newspaper even did a full story on it and complaints are being lodged against him.  When I told my GP (Dr. B) what he had told me about my weight and acrobatic activities he just shock his head and called him an idiot.  We have never ever heard my dr bad mouth another one, and we have been going to him for 35+ years!!

2) About the scope and the results from that.  Among what was foun was non-ulcer dyspepsia (upset stomach or indigestion not from an ulcer); Atypical dysphagia (difficulty swallowing for an unknown reason); gastritis (inflamation of the stomach lining); no strictures were found (nothing physical causing the swallowing problems);  acid and bile reflux (we knew of the acid before hand but not the bile); delayed gastric emptying (gasteroparesis - just as the name says, food stays in my stomach too long) and that she believes that my swallowing problems are from a combination of autonomic dysfunction flares coupled with oesophegus spasms.  Good news was nothing was biopsied, no 'bad germs' were found and basically nothing bad like tumours or bleeding.  She suggests that I try the medication called domperidone in the report.  Dr B didn't think that it would make any difference but when I looked it up later at home I realize that she is wanting to try it because of the delayed gastric emptying and not the GERD or swallowing that I assume he assumed.  I did call her office to make a follow-up but because I go for all my annual cardiac testing in april and have a follow-up in may, the office said she prefers to wait until all the tests are in before a follow-up is made.  I tried to tell them that these tests were for my stomach and the other tests are for my heart and totally unrelated so the office told me that they would talk to my dr and see if she wanted me in.  Still waiting for that.

3) I needed my pain meds changed which was actually pretty easy.  He was happy to get me off of the breakthrough med that I had been on as he didn't like it.  He even asked who perscribed it last and I had to  tell him that he did.  I dont think he was completely convinced that rotating the meds helps so I don't build tolerance, but he did change them around for me.

4) Obviously even if I did like the last rheumy, he is no long around to go to.  Dr. B says he has heard through the hospital that a new rheumy will be in town within the next few months so he wants me to just wait for now and get into this new doctor.  As things are pretty stable (except for one joint - more later) and Dr. B is willing to handle my medications, I am okay with this.

5) My shoulder has been really bothering me lately.  If my old rheumy was still around he would have done a cortisone shot months ago!  When I asked Dr. B about this he asked where I had had the injections (two in the AC joint, one for tendonitis, one for bursitis) but says he does not want me to have any more cortisone in ANY joint becasue of the osteoporosis.  He feels that the risk of more damage is too high to chance a few months of relief.  Because of this he is sending me to an orthapedic surgeon in town.  I dont have a appointment date but I will keep this blog updated.

6) Finally the last item was the bloodwork I had done the week before.  All the autoimmune came back okay this time so he is thinking that it whatever I have is dormant right now and that when I get into the rheumy he wants this investigated further.  The C-reactive protein is still quite elevated but we do know that lately with my joints being more painful that there is some more inflamation going on.  Again, it's something to keep an eye on, but nothing serious at this point.  However, there was one test that completely scared him, it actually scared my doctor!!  My vitamin D levels are very worringly low.  I am very deficient in Vitamin D for some reason.  This, coupled with the osteoporosis are pretty dangerous.  However, he has never seen levels this low so itsn't too sure what to do to treat it.  He just had me get some vitamin d drops and take at least 3 times the daily dose.  I am hopeful that this is the reason for the problems I have been having in my legs.  They have been so painful and weak.  I avoid stairs at all costs and have been having a lot of restless leg symptoms again.  I have most of the symptoms so am keeping my fingers crossed that when we get the D levels back to normal, my legs wont be so bad in certain ways.  After the appointment I asked the secretary for copies of the report (scope) and bloodwork and when she looked at it she was shocked too and looked at me and made a note that it was a good thing I had thought to test it as no doctor has ever suggested it tested.

7) Just as we were about to leave mom mentions that she thought we actually had something to show him this time as my wrist had been sliding in and out all morning.  Then we were absolutly shocked!!! He says "I dont need to see that, we know that she dislocates as that is what goes along with the EDS, no one is doubting that"!!  Well, a few years ago, HE did actually doubt that.  Shows the ground we have gained with him and that he is finally starting to fully get it!

The only thing that we did not get discussed was a medic alert bracelet.  We did mention the issue I had with the sedatives and my past issues with local anesthetics so they do know about it, we just didnt ask about whether I should get a medic alert bracelet.  However both my parents feel that it would definitly be a good idea to have, not only for that but for many other issues.  I have asked around and looked into it and now all I have to do is figure out which bracelet I want.

Explaining my absence

Well, another period of time has passed without an update and I am very sorry.  Figured I should explain what is going on.  I have been having more and more shoulder pain since this summer and had to move my laptop from my downstairs bedroom (with a couch that is not shoulder friendly) to the upstairs living room (which is shoulder friendly, and back and leg and ... ).  No one in my family knows about this blog so I don't want to update it or write any entry while they are around.  Plus I have been more and more fatigued lately so am not staying up much past when my parents and nephew head of to bed.  Also there are the normal (for EDSers) issues of my fingers and wrists being more painfull and stiff and what not during these cold winter months and the fact that my shoulder is deteriorating.  I still have posts that I want to write, its just finding the time to write those when no one is up (or around) and my shoulder isn't behaving too badly.

Hope everyone had a great new years and here's hoping that 2012 is better for all of us EDSers!!

Starting to get depressed..

I know it has been a while, yet again, since I posted.  Last week my family went away to a gorgeous cottage about 3 hours north of us and it was a very nice, quiet and pretty relaxing vacation.  Until wednesday...  Anyways I will write about that a little later (I wrote up a 'diary' of each day we were away and will get posted up here as soon as I get it off of my iPod Touch).  The main thing right now though is I can feel myself starting to get depressed again but there is nothing I can really do.  There are a few reasons for feeling like this:

1) After a couple of months in limbo waiting to see when my rheumatologist would be coming back from his absence, we read in the paper just before we went away that he was in fact retiring and that we had until August 5th to contact the office about getting copies of your files.  I really honestly have absolutely no clue what to do about all this.  This is the ONLY doctor that actually appears to give a crap about my quality of life and not just into drugging me up.  He is the one that has listened to me, done all my referals, order all my tests, given me all my cortisone in my shoulder.  The only one who has done anything really productive in my health and actually understands the concept of preventative medicine before we have a major problem.  This comes when we were in the middle of a lot of different ongoing issues - my knee and the OS's at the clinic not wanting to operate and claiming my knee is stable (the dislocation last week says otherwise), the strong feeling that something autoimmune was going on (which now I have blood tests to show that he was right but can't go over them with him), the ongoing shoulder issue, the osteoporosis and wrist injuries issue and just keeping up on new treatments and medications and keeping my life having some quality to it.  He is (was) the only rheumy in my town, the best in the next town (1 hour drive) already told me she wouldn't take me way back when I was diagnosed and my parents don't want to drive the 4+ hours to the other medically large towns.  My GP just doesn't get EDS so that isnt an option either so it's going to be a lot of trial and error until we find a doctor that will a) take me as a patient, b) listen to me and treat me as an equal in knowledge on EDS c) willing to keep up to date on all things EDS, d) willing to try things to make things better and e) interested enough to have me as a full time patient in many different areas.  Which leads me to:

2) When am I going to get something medically to help me?  My right knee is messed up even though the knee clinic deemed it stable and not needing surgery yet I am still in considerable pain and not able to fully use the knee.  Having to baby it or end up in severe pain.  At the cottage last week I had to be driven to the beach even though it was only a 5 - 10 minute walk from our cottage as my knee just wouldn't make it.  Right now my entire left arm is in trouble.  I made a grab to catch a big beach umbrella / sun shade and managed to hurt the fingers, thumb and wrist initially but am up to the shoulder even being in bad enough pain to take a breakthrough med because.  My left ankle just gets weaker and weaker as the days go by and I am seriously considering asking for cortisone in my hips.  So many things that I would love to get fixed, through surgery, procedures or whatever but there are no doctor's willing to even attempt this as they will most likely not succeed 100% so they don't want that on their record.  Even if I had a 50-50 chance of improvement in some areas, I am willing to risk it at this point.  It is so heartbreaking to read of all these people going in for surgery, or having a doctor suggest a procedure etc knowing that there is no doctor that I have found that will do a damn for me.

I am just getting so sick of going to new doctor after new doctor only for those doctors to declare I am too risky and they don't want to try something because it could make it worse.  I am sick of the doctor game and am being thrown right back into it at this point when I just don't want to do it anymore.  I don't even know what to do anymore.

Updates are done - as well as a new update lol

Well I have finally got all the posts up that I needed to do (I think I did at least) and believe I am now caught up.  For those of you who have been trying to follow this but got confused I apologize.  I had a lot of different topics that I wanted to blog about, if only so I have it as a 'record' for myself and to also try to explain why I have been quiet for so long.  So, I wrote seven posts over the last few days to update on all that has been going on.  I will list those seven along with a link to get to that post, and they will then be in order as I did not write them in any particular order.  Here they go:

My nephews doctor's appointment regarding learning difficulties and how we can help him

My own doctor's appointment with my GP and what we learned and decided to do

The report that my internist / cardiologist wrote up and sent to my GP (who then gave it to me)

A great K moment, by his amazingly proud Auntie (Note: We got his grade back and he got a B+!!!)

K's 9.5th Birthday Party

An unsettling conversation with my brother

Reply from a letter that I send to a very informed EDS trained Doctor

And those are the entries that took me forever to finally finish but I believe each one of those entries are important and needed me to tell about for some reason or another.  Now on to the current update :)

The increasing of the elavil is kicking my butt!  When I started on it years ago most doctor's were shocked as it did not make me tired at all and did not contribute to a good sleep.  Apparently I fell into the 5% of people who do not get tired from it.  Well adding this itty bitty little bit extra (I was on 100mg, now up to 110mg) is making be absolutly exhausted!  All I want to do is sleep, I can sleep for 12 hours a night and be ready for a nap just two hours after I wake up!  I do know however that when I started this medication my health and body were not as badly affected by the EDS where nows there has been a lot of changes.  It has only been a week and I know I have to give it plenty of time for my body to adjust to it so going to give it another week at minimum, probably more like a full month before I decide anything.  I just want these headaches gone!!

Been having more and more joint issues.  My right shoulder has been really acting up lately.  I went back to taking the neurontin twice a day instead of once a day as the burning nerve pain was getting way out of hand.  Unfortunatly the increase hasn't seemed to help too much.  I now basically have that burning pain 24/7.  I am honestly a little nervous putting ice or heat on it as I am not sure how good the skin is there and I don't want to end up doing more damage than there already is.  Add to this I am now also getting basic pain.  If I try to reach in front of me to get something (like sitting on my couch and reaching forward to get a drink) I get a horrible stabbing pain right into my back that sends enough of a jolt through me that I have already been modifying stuff to stop this even though it's not been that long.  And then add the basic 'tired' feeling and you have a really great shoulder pain trifecta!

My hip is also causing issues.  Last night I went to bed and read for a while.  When I tried to roll over to turn the light out I got a shooting pain into my hip area that took my breath away.  I then noticed that the way I was laying, my left foot was in the position that the entire arch side was right on the bed so I had my entire leg turned a little over quarter of the way in.  I finally managed to get the leg to go straight only to find that I could now no longer bend my leg.  It got to the point that I almost called my mom upstairs to come down to help me.  However, after a dose of advil and breakthrough meds as well as the warm waterbed and me gently massaging the area and I could move again.  It is defintly not something I want to experience again that is for sure!!!!

As I mentioned in one of the posts, I only noticed tonight that I have a positive ANA factor on my recent round of bloodwork.  I had mistakenly thought that the 'Postive' was part of the C-Reactive Protein test until I looked further.  At this point I honestly don't know what to think.  Going to google for a while and let it sink in and will post soon about where I am at and what my plans for the future, medically at least, are.

Long day.... (and health update)

I was up around 9:30 this morning (very early for me) so that mom and I could attend an assembly at K's school.  Because I help with the bookfair three times a year and mom does that as well as having kids read to her once a week, we were invited to a 'thank-you' gathering at his school.  We got to see some of the year end 'awards' handed out and then all of the volunteer's got a nice yellow carnation, a small box of Laura Secord Chocolates (only two, haven't tried them yet) and a thank-you card from one of the students.  We then headed to the library were there was a nice fruit tray and cheese tray as well as some drinks for us to eat.  We got things figured out for the book fair next week and left there around 11:30. 

Mom and I then headed into town to do some shopping.  Well, correction, a LOT of shopping!  Got a lot of great deals though!  Only went to four stores but it felt a lot longer!  We went to:

• Zellers - got a shirt on sale 50% off, a DS game for $10, two books that were $3 each and a CD for $1.  (Mom picked up quite a few good deals including the U-build Sorry game and a travel edition of Battleship for us to take up to the cottage with us in July so he has something 'new' to play)
• Sears as my friend is registered there for her wedding (had to order the gift though as they had none in store) and I got a great deal there!! (Skirt - normally $35 on for $15, capri's - normally $30 for $19)
• Pennington's - 2 pairs of shorts and a shirt that was 50% off (Mom got two pairs of shorts too, going to have to write our names in them though as we are the same size and there are only two colours!)
• Walmart where I just got Shaggy some bones and dog food (even that was on sale! normaly $10 got it for $7) and got one of the X-men movies for K and I to watch - normally $15 and I got it for $5

After we were done at Walmart we went over to a restaurant and got take-out fish & chips for supper (this place is really good, all the day is fish and chips) and came home to eat it.  After that and letting things settle for a while, mom, K and I watched the last four episodes of "Buffy The Vampire Slayer".  Thinking we will watch "Angel" next even though "Everwood" and "Joan of Arcadia" are up there as well (would have to buy the latter, have all released seasons of the former).  Then I came down to my room and am typing this up :)

So, guess I should give a breif 'health' update as I haven't posted for a while.  I saw my GP on monday and was relieved that the 'appointment' went more smoothly than I could have imagined!  My rheumy does all my pain medications and the ones I was on currently needed switching to the next one (we rotate my breathrough and long-acting pain meds when they start becoming ineffective so I don't build up a huge tolerance to them).  Well I didn't know if my GP would switch them or not but he did with no questions asked.  So I switched my breakthrough meds on monday and my long-acting ones on thursday and have been doing pretty good with them.

My knee hasn't seemed to be doing well lately for some reason.  I am back up to being swollen, unable to cross my legs on that side and having to prop it up in bed.  The entire lateral side of the leg is very sore and tender.  I really hope my rheumy gets back soon as I need some answers and / or something that can be done to relieve some of the pain!

What has been the worse however is the horribly painfull neuropathic pain in my right shoulder.  It feels like it is burning 24/7 and even wearing a baggy t-shirt is not comfortable.  I am on a medication for this that my rheumy has told me I can play around with so I have started taking it twice a day now instead of just once a day.  Hoping that it kicks in soon though as this is exrutiatingly painfull.  It has left me in tears most nights because there just isn't anything I can do to help it and just have to wait and see if the more frequent dose will help.

Major dislike - we were coming home from K's karate (he is already up to his advanced blue belt :D - just had to be the proud auntie for a minute there lol) last night and as there are a lot of large transport trucks around here and we get lots of snow, we have many potholes and very bumpy roads.  We got about 10 minutes away from the house and I got a headache, 5 minutes out it was nausea and when we got home it was the full headache, neck pain and stiffness, nausea, cold sweats and dizzyness.  I haven't had an 'attack' like this in a very long time.  Took a few gravol and ended up laying on the couch for the rest of the night.  When I got into bed and lying down properly I started experiencing vertigo if I rolled over on the bed.  No problems like that standing up, just when laying down.  Today I have been really off balance and have had to grab the shoppnig cart or whatever was around to stop from falling down.  Really hoping all that fun stuff isn't starting to come back!  I started taking a medication for it years ago and it has worked great ever since, haven't felt this affected by it in a very long time, thankfully though the duration of this 'attack' was a LOT shorter than the ones I used to get!

Well all that stuff being done today plus all the not feeling good means I will end it here as I am going to go crawl in my nice warm waterbed and hopefully get some sleep!

Rheumatologist

The day after my lovely appointment with the OS at the knee clinic I get a phone call.  I find out that it is my rheumatologist's office calling to say that the office will be closed until further notice due to an unforseen circumstance!  This guy is the one that basically handles all my health issues and I was supposed to see at the beginning of the next week.  I had already had a list going of what I needed to see him about and now he isn't there.  It is not like him to do this so something serious had to have happened.  However this is pretty depressing as he is the one that handles my knee.  So it's not like I can even ask for a cortisone injection or look into Synvisc with him as he isnt there.  Plus my pain meds aren't working well anymore so we have to swap them again and most likely up the dosage of them.  I am also having a lot of problems with my hands and fingers that I don't know what to do about and am thinking about asking to get a cortisone shot in my shoulder joint as the bad nerve pain is coming back again. 

Also I was approved for my ring splints and they will cover the entire cost!  Except no one at the office noticed that it was from a company in the states so now that can't be done because they can't just reimburse me if I use my credit card, it is done through a voucher type of system.  There is a company in Canada but I don't know how their measurements are done and would have to be measured for them.  Problem - it would be my rheumy who has all the tools to do the measurements and well he just isnt there right now!!

After the two crappy appointments (internist and OS) and then this I am about to just say screw the doctors and screw all the pills.  What is the point doing all this fighting if no one is there to actually help you?  Oh so I call my GP's office and say I need to make an appoinment becaue my rheumy is away and she says the earliest I can get in is the 13th of June!!!!  I said that wouldn't work because I only had a week and a half left of my pain killers and my rheumy is on a leave of absence.  The squeezed me in for a 'chair visit' (sit in the hall with no real exam or questioning) to get my pills on the 30th but I still had to make the appointment for the 13th as I need those pain meds redone (if he will do them, he always wants me off them and not increasing them), I need a referal to a GI doctor (let's just say I have been having one sypmtom for years and never really worried about it but when I mentioned it to my mom she was quite concerned and wants me to get refered ASAP) and to go over my bloodwork and ask about thyroid as well and to ask about the SSRI's and autonomic issues.  So now I am officialy on hold as I can do absolutly nothing until the 13th - and this isnt a doctor that can do much except normal family doctor types of things and referals!!

Knee Appointment

Well it's almost been a week.  I still end up so pissed off even thinking of the encounter I had with the doctor (and then after with my dad) but figure I should get this written out before I start forgetting important things.

So I was very hopeful of this appointment, as was my mom and we had already minorly talked over some issues that might come up with more knee surgery (sleeping arrangements and whatnot).  We had to get up really early as it was one of the first appointments of the day and we live a little over an hour away.  Got up and got dressed and packed (book for the trip, shorts for the appt etc) and headed off to Timmy's to get an Ice Cap before getting on the high way to the clinic.

So we get there and have to wait for a while (this is a busy clinic at a teaching hospital that also houses a physiotherapy center) before getting called back to the room.  The nurse recognized me (not sure if from my first round of surgeries there or just this last month) and we got talking about my old OS Dr. F and how much crap he ended up going through and with her telling us that he isn't the Dr. F that we would remember anymore sadly.  Dad left the room while I got in to shorts and comes in and says I am on the board as 'Stacey new knee', it took him a moment to realize it was just that it was a new knee case and not a new knee operation!  I went through a pile of paperwork filling things out, what happened, what treatments have been used, surgeries etc.  It took quite a long time to fill it out and to get all the details.  Even had to ask dad a few questions as to what has been done.

Finally the fellow comes in.  He asks what is going on and getting my history (note: he never picked up the questionaire I filled out).  Three times he did an exam on my knee, have me lie down and played around with both legs would have me sit up and then think of something else and have my lie down again for him to check something.  He also wanted to see the 'tricks' when he found out about the EDS.  I kept it to the elbow, and the thumb to wrist trick and told him to what degree my knees hyperextended.  I tell him that surprisingly I have lost a great deal of ROM since the injury and he then wants to see that so I have to lie down again.  (note: going up and down like that just killed my lower back as I couldnt shift around to realign the lower spine).  He kept asking me which was worse: 1) instability or 2) pain.  However I could not get him to understand that yes the pain is bad but that I deal with chronic pain on a daily basis and that the most pressing issues is the instablitiy becuase it is messing up other joints.  I tell him that I am still having to take breakthrough pain meds daily and that a prevously 3 month supply of breakthrough meds is only lasting for a month now (How else do you describe the severity of pain when you are in pain daily???).  He goes over the bracing and physio route and even my dad spoke up at this point stating that they were both useless in my situation and that it was actually Dr. F that told me bracing was futile with my knee.  It took a lot of time for him to get that my knee went out to the medial side and not the lateral side.  That the instablity is the knee feeling like it is going out to the medial side.  From out of no where he comes up with this 'would you rather' game.  He finds a spot on my knee at the bottom to the lateral side and pushes down on it hard.  He then goes would you rather this pain be gone or your knee stable???  I had no clue what he was even talking about!  Again I had to state that I can handle pain, I do it daily it is the instablity that is the main problem.  After a good 20 minutes he then leaves to go get the actually doctor.

A few minutes later I hear the fellow and Dr. L outside the door.  First thing Dr. L says... "How long ago was the car accident?"  I had to think for a minute as I was wondering if he was talking about the one I got into in 2003 (the clinic knew of this accident) until dad said that I hadn't been in a car accident.  Then we realized that I said I dislocated while reaching to the backseat of the truck (no clue how they took that to be a car accident!).  We get that settled then he asks again about what is going on (note: He didn't look at any of the paper work I had just filled out either).  We went through everything again and then he did his own playing around with my legs and checking out the hypermobility in other joints then sits down.  He kept asking if I was back to my 'normal' and not what a normal knee should feel like.  I kept telling him no that I wasn't and that I was still in a lot of pain.  I won't go in to detail about all he said as honestly after one specific comment I just about lost it.  He then states that since I had already had three operations on the lateral side of my right knee that it was pointless to do any more work in there and that nothing else would work.  He kept stating 'with your condition' things are just going to get loose again anyways so what was the point.  Here are a few of the "statments" that stand out to me - and my reaction outloud and (what I thought in my head):

"You just need to strengthen the muscles of your knee" - I have been assessed and told that my muscles are all as strong as they need to be and that too much strengthening actually leads to the same problems of instability because the muscles are trying too hard (I refuse to go down the physio route again unless it is post-op!) "Well who said that" - two physiotherapists and my rheumatologist

"Have you tried bracing?" - Yes, bought the one suggested last time and can not wear it as it causes more problems than it's worth.  I have been told that for my knee, braces just won't work. (Do you really think I would be going this far down the surgeon path if bracing fixed it?) "Who told you that?" - Dr. F (Dr. F is my old OS and who the entire knee clinic is named after)

"You need to stop the mindset that you are disabled" - (didn't answer this one but was pissed and just about left the office.  I wish I had of said my family doctor, rheumatologist, genticist, physiotherapist and 4 different government agencies have all told me I am disabled.  It takes a long time to accept that fact and I don't appreciate being told that my belief that I am disabled is affecting my health in a negatice way)

"You have to think like an abled body person" - *eye roll* (If I was an abled body person I wouldn't be in this office, I would be out riding my bike with my nephew or taking him to the park to kick a ball around etc)

"What do you want me to do?" - Dr. F had told me that surgery to re-align my MCL, LCL and patellar tendon would be the most helpful to work at getting that balance to keep my knee properly alligned (You are the surgeon, not me, I just want you to do something!) "Well Dr. F isn't a surgeon" (note: Dr. F in this statement is the one I saw a few weeks ago, not my old OS that I loved!)

He then basically just stopped, said nothing could be done, I need to strengthen my muscles and that surgery wouldn't be done as too much has been done laterally already that he doesnt want to mess around with it anymore (note: Me and everyone I have asked all agree that the fact that so much has already been done to the lateral side is more of a reason to go in and do a clean out and check that everything is working).  Then he goes "Okay?" and I say "No" and he goes "Well I can't do anything" and leaves the room.  At this point I am already in tears (and again now just writing this up) and I look at dad and he just says we will talk in the truck and then leaves so I can get my pants back on.  I get dressed and go out to find dad and the nurse / receptionist asks if I need to make another appointment and I said "No I will not be seeing him again, I don't appreciate being insulted at a doctors appointment."  Then came something that was almost just as bad.

I finally find my dad and we go back to the truck.  He then comes up with this brilliant plan about how we are going to fix my knee - He is going to wrap it up real good and then him and I are going to go on a walk each night, even if only to the end of the driveway, we are going to go walking each night.  I just blew up at him at this point.  It was just like a huge slap in the face.  So I aksed him what about both hips, the left knee and the left ankle?  He just goes we need to build up strength so I say for the millionth time that day that I refuse to sacrifice 4 otherwise good joints for one that is beyond screwed up anyways and that it would make more sense to start looking into wheelchairs.  And that is when I get the wall of silence.  We had a few stops to make before heading home but on the way home I ask where do you go after the clinic I just went to (in terms of finding treatment) and he goes 'Nowhere, we're done they can't help you' which caused another wonderful bout of crying.

Well that's the appointment finally written up.  I have a bunch more of stuff to get up but will put them in seperate posts.

OS Appointment - Not Happy

I saw the OS at the knee clinic today and things could not have gone worse.  At this point even thinking about it ends in me crying my eyes out.  Also I have taken 6 of my pain killers today while I normally only take one or two max.  And I still will need a dose before I go to bed.  This was one of the worst appointments I have had and to top it off I even had the guy insult me!  Top it off dad figures that nothing can be done so we should go out on walks every night to help build my strength up (even though I have had my rheumy and a physiotherapist tell me that my muscles are strong enough and much more strengthening can actually cause just as many problems and my mom just isn't saying or suggesting anything.  Will post more, probably when the sadness and depression move on to become anger so it can become a rant and not a depressing whine.

Medical Update

Right off of the bat I must say two things: (1) I am sorry for the major lack of updates, as I said in the last post there have been quite a few issues going around my head that I am trying to sort out before I post and I know if I start a post on it, I will just go off on it all before my mind is made up. (2) This is most likely going to be a very very long post as there are quite a few topics to tell about and some I have to kind of go back in time a few months (or years) before I can explain the problems.  I thought about doing this in many smaller posts but I think (as I am writing this opener) that I will keep it as one (that may change when I get finished though!).  Okay, so here it goes, in order of mildest to worst (or in my mind the least frustrating to the most frustrating):

Couldn't See a Friend
This one doesnt really fit in to the medical category until you dig a little deeper.  S is a good friend that I met in the winter semester at university and we have been good friends ever since.  He is probably the one that I keep in contact with the most and even though I dont get to see him often, I know that he would be there if I ever needed him (and visa versa of course).  He was going to be in a city close to me a few nights ago and asked if I could meet up with him and we could go out to dinner and do some stuff.  Well it was a little over an hour drive and I just didn't think that it would be a good idea.  He even offered to let me stay at his hotel over night to rest up for the trip back but I still had to decline.  Not impressed about that as I haven't seen him in about two years.

Getting Less Coordinated!
Just this last week I have done two stupid things that have both led to pain and injury.  The first one was slightly over a week ago when I was carrying my laptop in my left hand while coming down the stairs to go to bed.  Well I tripped over the last step and managed to ram my hand into my door so it was squished between the frame and my laptop.  Was very tender and sore and I still have a bruise there with some tenderness still.  The recent one happend on thursday night when I was sitting on the couch and went to let my dog out and I got all wrapped up in my blanket and tripped.  Thankfully (???) I caught myself on the two end tables before falling flat out but I really did a number on my body.  EVERYTHING hurt that night and I was in a lot of pain.  My back is still spasming if I set wrong but the rest of it seems to settled down.  Tonight I almost missed a step and fell down the stairs and have been getting shakey and off balance quite a bit lately.

Headache's Returning and Pain Level Increasing
Not that big of deal but I have been waking up with the old headaches almost everyday now but if I go back to sleep it seems to subside.  I know I am overdue as this medication hasnt been changed in a very long time but I just hoped it would stay like that.  Going to have to ask about incresing the dosage next time I see my family doctor.  I have also been in a lot more pain lately.  I am not bad through the day but by around 7 or 8 at night everything just starts to hurt really really badly.  My hips have gotten so bad lately and sitting in one spot for a long time (even just to sit for dinner) makes them feel like they are popping and building up pressure.  I am not sure what actually is going on in there but it will have to be mentioned to my rheumatologist when I see him next.  An increase in my long-acting medication may be needed which isn't too bad as I have been at this dose for a significant time frame (by alternating this med and another similar med instead of higher dosages when building up tolerances.)

Medication Not Working
Again, doesnt seem too important but for me it really is.  When in Baltimore at the EDNF conference one doctor 'diagnosed' me with significant autonomic dysfunction (my internist at home then confirmed and made an official diagnosis of sever autonomic dysfunction).  One of the most debilitating and depressing symptoms of this is very very increased sweating.  He gave me a few medications to ask my dr about and I started on one of those medications (at the dosage he suggested) in september and we noticed from about december - february I was actually dry most of the time.  Even situations where I would have been drenched and dripping sweat (literally) I would remain dry.  However it all came back with a vengance and I am already back to the massive sweats again.  Not sure what we are going to do about it next, either try the other medication and using an alternating schedule, increasing the dosage or just scrapping that idea all together.

New Specialist?
Who would have thought there is a specialty in medicine that I have yet to explore?  The doctor - a gastroenterologist.  I have had certain lower GI issues for years now but some things are starting to show more and more frequently that I believe I should be getting myself checked out.  Not to go into any graphics but this could be a very serious problem or a very simple one but I really have no clue.  I just really really don't want to have to go through the test that I am sure will be the first one ordered :S

Right Knee and Subsequent Problems
I touched on this earlier with talking about my hips.  As you know I injured my right knee at Christmas and am still on the path to getting it fixed.  I am a lot better, no crutches and can walk normally without a limp (unless I am tired or too much walking).  I am able to drive short distances myself and have been able to sit comfortly for the most part.  However all is not better.  I still have pain in it, still taking breakthrough pain meds a lot more often than I would like to and still frustrated by it.  Looking at the scans done earlier though, my left knee is in more dire need of fixing then the right.  However, as I said to my mom, I have already had three operations on my right knee.  Since damaging it at Christmas I have had significant pain increases in my left knee, left ankle and more worrying is that both my hips are in a bad spot right now.  I start walking and can literally feel that my left knee cap is not in the grove and have to do some bending and stretching to make it feel better.  My hips have just been bad with a lot of pain and they will be the next thing I talk to my rhuemy about. 

Anyways, since I have already had so many surgeries on my right knee, and that I know it`s issues are causing the other joints to start to fail, if I am going to have 'experimental'and 'tricky'surgery, I would prefer to have it on my knee that is already damaged instead of starting the surgery process on another joint.  I am not naive and know that other joints are going to be operated on in the probably not too distant future (5-10 years-ish I am guessing) then I would prefer to mess up a knee that is already messed up instead of having two messed up joints.  I know that most people probably won't understand this but thankfully my mom seems to and really wants me to express that feeling to the surgeons when I see them next week (eeks!!).  Just hope I can explain it well, in front of my dad, so they understand and don't think I am crazy.  I just want to get rid of some of this pain and instability!  I can't go for bike rides with my nephew, can't go out and play soccer or badminton in the front yard, can't go for walks with my dog and most disheartening is that we are thinking of going to Flordia in the next year and if something isn't done, I won't be able to go on any of the rides and will be having to rent a wheelchair / scooter to just survive (which I really don't want Kyler to see me in as I dont want him to realize that I am not normal).  I am only 29 years old and I swear that my 86year old grandmother has better leg joints than I do!!
I can't believe how long this is going to be!!!!!!!!!!! I am so so sorry that it is long.  I have taken the last topic point out and will put it up by itself as it is so long.  If you have gotten this far --- thanks for reading :)