Hello,
Well 1st off when I was 3, I fell off the monkey bars and I dislocated the radial head in my elbow, and we lived in a very small town and they didnt realize until 5 days later when someone was really able to look at my ex-rays and they found that break, so my mom had to bring me back and they put on a full cast right to my shoulder (so I had been walking around for 5 days with this broken elbow), anways after a week or 2 once the swelling went down I took off my cast cause it was so uncomfortable, so they just kept my arm in a sling the rest of the time, and well I guess it didnt heal right cause always after then I had aches and pains in my elbow joint and it makes this awful grinding noise. So anyways I kept on going on with my life. I was a very active child and I was into figure skating competively and I was always excersing, dancing,weight's all sorts of things to be in tip top shage for figure skating. In grade 7 I got Mono once and I pretty much was really very ill and in bed for a whole year but I started to feel better. So I got better from that I was continueing with my skating 24/7 it was my life and dream to be in the Olypmpics. Here and there I had a couple of very bad falls and I had broken my left wrist (the same arm that I had injured my elbow when I was 3) oh about 5 times and the last time I was unable to use my wrist and hand for about 6 months it was so swollen for so long I had to get sugrey to bring the swelling down and I had to go into intensive phyiso therpy everyday to gain use of wrist and had again it came back slowly but I was able to heal from that and be able to use my left arm again and I might add that I am left handed and I had to learn to write and eat with my other hand. And its always funny because when you fall you automaticly will put out the hand you write with and use to break your fall, so I have only injured my left wrist.
While this was all going on I started to get really bad pains right in my spinal cord really in it, also really bad pains in my left injured arm, as well I started to get pains in my legs so bad sometimes that I could walk sometimes and I would be stuck in bed with bad spianl pains, whole left arms pains and legs. Of course my Mom found it strange for her 14 old daughter to be in all this pain and she knew that this was not grwoing pains what so ever. So she took me to see our family Doctor and she tested me for Lupus and R/A and it came back flase postive or something. I know that back in the early 90's testing for that was really hard. So she sent me to see a Rhematiogist.
So I went to see him and he basically said the pains your feeling are normal and that I am not exceriseing enough and that I should do more then I am, I told him I figure skate over 40 hours a week, as well run, do ballet and lift weights and I was in tip top shape. I told him what do you want me to do cut out sleeping...lol...ya right. So I left it at that for then cause that Dr. was a jerk. Then I had major family problems with my Mom and I found out that for 2 years she had been faking me and everyone else in my family that she had cancer and I found out that she didnt. So make a long story short on that, I was removed from my mothers care and was put in child welfare. But I had this dumd loyatly to my Mom and she didnt want me to be in childwelfare at all and told me if I did stay with someone from that she would disown me, so me be a scared 16 year old girl alone, I went to the streets and I was on the streets for about 1 and half and then finally and went into child welfare and got the help that I need to get my life back on track and through that whole time I was still get all these pains everywhere on my body. I also get Mono again and it took me over a year to get over that again.
So now I'm living on my own and I was 20 and I started to want to find out why I was getting these pains. At the time it was mostly in my left elbow the most. So I started with my family doctor and he did ex-ray's on the elbow and there was nothing he could see himself wrong, so he sent me for a nerve test as well on that arm and I found out that my alnuer nerve was running really slow. So he sent me to see and Othro Surgeon and he was a really old guy really old school if you know what I mean. So he told me that there was nothing that he could do for me and he gave me a Cortizone shot in my elbow and told me to just live with it. Here I was expecting that I was going to get some surgrey to fix my elbow. But no that's no the case, I'm still left with no answer's as why I'm getting pains in my elbow so bad that I cant even touch certain parts or even think about touching it it just make my nerves in there hurt. My family doctor through this whole time which took a year to get in to see that Othro Specialist was giving me prekadan for the pain. I got 100pills a month 5mg ones I was taking 2 every 4 hours. So here I was back to square one again and in more pain then ever all over my whole body.
Then one day I was talking with a friend of mine that is a masseage therispt and I was telling all the pains I feel and she told me that she has some clients that have Lupus and R/A that have that same sort of pain. It was a light when on in my head and I thought back to myself that's what I had, I rememebered that I was tested once and and that ******* rhem I saw. So I went to my family doctor, told him that I think this is what I have and he order the blood work and 2 weeks later he got the test back and sure enough my test came back positve for that. So he sent to see a rhem. But here in Canada yes we have free healthcare pretty much but the bad thing it can sometime takes up to a year to get into to see a specialist. So I did a little phone work and I got his asstiants phone number and I told her that it has taken me 2 years to find out what I had and that I'm in so much pain that I could possiably wait 6 months to get in to see him. So she pulled some strings and I was in to see him within 2 weeks.
I RAN OUT OF ROOM SO LOOK FOR THE NEXTED POST FOR THE REST OF MY STORY

Here is the rest of my story.....

So when I went into meet him he took my full family history and made a 1st diagnose with R/A. Now I alreadyt new I have Von Willebrands Disease which is a bleeding disorder where your bllod doesnt clot. I was so happy at the time to finally have someone yes the pain your feeling is very real. So he put me on Plaquenil 200mg TID for the 1st month and then 200mg QID( I think that 2 times a day) I told him that I was taking perkadans for the pain and of course he wasnt too happy about that, and he was like I"m going to try and get your pain under control so that you dont have to take them, he doesnt presribe any opiates which didnt matter to me because my family doctor will and always prescribe any of that for me whenever needed. So I guess I"m very lucky there. So after about a year of having some really bad flare-up and going back to see the Rhem, he also said that I had Lupus and Sjogrens Syndrome. He said that I was 1st person in Calgary that they have been able to diagnosed with Sjogrens and with a combination of auto immune disease. I'm so happy with my Rhem hes the best, he's the top Rhem here in Alberta Canada and he is also a professor at the Uofcalgary (that's where I'm from) So I had many flare up's and he would put me on a course of predisone for 3 weeks and that would sometime help. But after 2 years of taking the plaquenil I wasnt feeling any btter with my pain even wrose I felt. I had been in the hospital 4 times in 2 years and each stay was over a month or so. I would be on iv morphine every 4 hours at 7.5mg and trust me that only brought my pain down to about an 8. The last time I was in the hospital I was on the same morphine as before. I had gotten a cold which turned into strep and because of the antibotics I had gotten Canaditia in the mouth so bad, the wrose the doc's had ever seen that it had spread to my face and down my throat, so they had to treat that with iv antiboctic's and once they got that cleared up they then trying to get me through this flare-up cause I was in so much pain all the time. I was on 8mg of Morphine every 4 hours on the ***, I could really sleep or walk. So my rhem wanted to try and jump start my system cause it was going into failur. So he decided that nnow the candiada was under control he was going to give me a round of predizone. He order 1 gram of Predisone through IV for 3 days, to try and jumy my immune system back. Well the 1st try of it didnt go so well. I guess the nures ran it a little too fast in iv, she had go through me in about 1 hour and once it was all done. I got this bad taste in my mouth, now you normally do with pred, but this was so strong it was like dirt and metal in my mouth and I felt like I was going to puke. So I called my nurse to give anti nausea med's when she came back I was shaking and convulsing in bed, I was aware of what was going on and I was able to talk and everything but I just couldnt stop shaking and everything. They too my vitals on the manchine that does your b/p and heart rate all at onve and it started to beep and flash lights and I remember seeing my heart beats where at 222 beats a min. So they called in a ER Doc and they gave me benedryl to counter act with the pred and I ended being ok but I had really bad shakes for about a week or so. So I spent over 2 months in the hospital and by the end that's when they introduced me to MS and Luquid Morphine. I also the whole time in the hospital and well always smoked pot, and that helps alot with pain and to be happy and to eat. So I got discharged and I was on MS Contin and Liquid Mprhine and Preajadans for BT pain. So I was starting to get better a little bit but I started having problems eating felt like I was going to be sick everytime I ate so I just started to eat or well drink power shakes they where the only that I could keep down. I had lost over 45 pounds in 6 months. I was 110 pounds and I was down to 80 pounds and that's when I went to see a GI and I found out I also have Celiac disease. That was just 2 years ago. I have been the hospital 2 more times since then I always am in for a month or so. I have been on MS Contin and Liquid Morphine and Preakan's and smoking pot non stop for over 2 years. I also switch sometime to the Duragesic patch to give the MS Contin a break. So here I am now....I'm a canadain citizen and I have fall in love with a Man from FL and I have moved down here and the weather sure has helped I have been living here for over a year. But I always go back home to canada to see my doctors cause man I have read what you guys have to go through with you doc's here gezzz I feel for you. I get all my med's shipped from Calgary that's my home in canada. Well I think that's all for now I'm sure I will write some more later like all the med's I take the stregth, how my pain is on it and what not. I want to learn more about my med's I already do know a lot about them but I want to learn more. Also I need to talk to ppl just about life and liveing with pain. Oh ya one more thing that I forgot to add, was that because I wasnt diagnosed with all my illnesses when it started when I was 14 or 15, my spinal cord is all messed up too now. If they would have knowen or cared about what I had when I was a teen they could have put me in a back brace to help my spine grow straight but of course this didnt happen, so now my lower part of my spine isnt straight at all its 45% out of aligement and now its too late to try and straighten it because I have stopped growing. So now I have major back problems and major back pain and I will have to go to a chrio now for the rest of my life. One thing that I'm so lucky and happy about is that my Rhemy is such a awesome doctor and a professor too he was able to refer me to a friend of his who is the top chrio in Alberta Canada and is knowen for his work and also his resreach that is done all over the world in the medical coummunity. Cause I wouldnt just let anyone just touch my back cause I have heard and my mom has been to a bad chrio that messed her back up even more. My chrio is so sweet, in fact all my doctors now that I have found since I got diagnosed are almost like friends to me. My chrio even took time out of his day to come and give me back adjustments every 2nd day whenever I'm in the hospital and it doesnt get paid for it, he just does it out of the kindness of his heart and well cause all my doctors say I'm a very special case which I guess can be nice in a way but can also make you feel a little depressed cause you know that your kind of like a geunie pig because none of my doctors have ever had a patient with all these disease's so for them I'm a major learning tool for them....lol....I hope to hear from someone again soon. I would like to talk more about different pains med's and the ones I'm on now. As well stories to share with one another...and anything that could help me feel better...

Talk to you soon...
Lisa
:angel:

I just wanted to bump my post up....


Lisa

Just bumping my post up again, I hope that someone might take a look at my post and reply....

Lisa