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RSDHope Teen Corner

~ False Hope ~

At first my world was so-called normal. I did every normal teenage thing. Then I started having problems. Emotionally and physically. So I went to the doctor. He diagnosed me with RSD Reflex Sympathetic Dystrophy. Not something you want to have. Then he sent me up to Rochester, Minn. To St. Mary's hospital because of my pain and numbness and color changes. Well they did spinal taps, EMG's, CT's, X-Rays, of my throat and spinal cord, and blood. Everything came back negative. They were positive that RSD didn't cause numbness. Well when nerves are entrapped, yes it can. I am not totally dissing Mayo Clinic, but I am mad. They misdiagnosed me. Telling my parents that I should be this and that. Telling me it is all in my head etc. They said I have Conversion Disorder and that it was my parent's fault. I was beginging to wonder what I have to do to prove to everyone that it's not in my head! So I am going to talk to my doctor and see if he can do anything. Since he still believes me and so does my wonderful MS PT. It stands for Masters of Science Physical Therapist. They believe me, which helps, but my world is turned, flipped inside out. Smashed hopes of being in Marching Band. Colorgaurd. Anything I once wanted.... smashed and crushed. I only have a few people who I can tell, and most importantly don't think I am " Mental." When I think I might have my life to at least a half-way normal thing, BAM! It comes crashing back down. Sometimes I wonder if I can even pull myself back up again. Then I wonder what I am I going to do when I am older, say college and jobs. What boyfriend would go out with someone like me. These unbelievers make me so mad. Then sad because the longer they wait to treat me, the harder it will be to be turned around. So you can see by the title I chose that False Hope. That is my life. Once I think I might have something under control, someone pulls the rug out under my feet and I fall.... I fall hard. I am paying for their mistakes. I feel like some kind of lab experiment. One that is waiting to go wrong. The pain I have is like a time bomb waiting to explode... everything feels like that. I can't help, but wonder whats going to go wrong next. I know this doesn't sound very optimistic, but you tell how to be and I will try it. For there is nothing happy to look forward to. The odd looks of guys and classmates. Even teachers. The school not believeing me, parents ify, Rochester Minn. St. Mary's hospital.

: Spinning Out of Control :

My life was just like yours. Where I had everything under control. I could run and be pain free. I felt normal. Like my friends. We talked about clothes, our crushes, movies, music, tv shows, and really hot guys. I had problems in my life, and I had to move on and deal with it. Then I started having medical problems. About two summers ago is when my life started spinning out of control. I had sprained my right ankle. We didn't know how. So that's when I first met Greg, my physical therapist. Later I met Sean, an intern, who is now working at Team Rehab. Then, on my left foot, I broke my toe. The pain was so bad. Tylenol with Codine didn't help at all! Or more commonly called Tylenol #3 or my abbreviation, T3. Then, running the mile in 6th grade in the fall, my left ankle had been giving me some problems. Like a fighter, I ran the mile anyway, thinking nothing about it or very little. Well that put me back in physical therapy. I had to have electric shocks put into my ankle to try to break up the scar tissue. Its called a Menz. Well, my doctor began to see a pattern. He had CLINICALLY diagnisised me with RSD or Reflex Sympathetic Dystrophy. So I began to wonder what that was. So the curiosity got to me. Immediatly, as soon as we got home, I hit the computer. I looked up treatments, diagnosis, symptoms, etc. Well I started thinking, "Oh my god that sounds like me!?" I was both amazed and a little scared. Well, I had fallen down in gym class roller skating. I was pushed down by a bully, but sercetly I have a few other little names I like to call him. :) For the sake of this story I'm going to call him TC. Which made my knees hurt so bad!! T3 didn't cut the pain or even a fraction of it. So I went without sleep for two weeks straight. Even worse, we were taking our Basic Skills tests. I scored really low. I tested into a beginer of third grade. I was in senventh grade at the time. I am smarter than that though! Then my knees started having a tingly feeling like they were going to sleep. It lasted longer and longer each time, until I was totally numb from both knees down. Then I couldn't walk. So my doctor and physical therapist immediately sent me up to Rochester aka St. Mary's hospital. I couldn't walk at all!! I was confined to a wheelchair. Well, when Rochester learned about TC, and that was may I say TWO years ago! I had moved on in my life. They ruled everything major out like Cancer, Tumors, basically anything "deadly." When I metion RSD to them they said it wasn't because I was numb. Well before I had the numbness I had red, swollen legs. You couldn't see my knee caps. They felt like someone poored gasoline on them, and then lit a match. Like I said that last from the middle of April to the Early to middle of May. By that time they were still swollen and blue and purple. They were ice cold to the touch. One week later I was still layed up in the hospital, but the numbness had moved up on my body. My full or whole right half of my body went numb. It went up to my waist on my left side. I had horrible tremors and still was numb. I had rubbed my right ankle bone so hard that it was raw and bleeding. I still do have horrible tremors. Rochester didn't know what was wrong. So I knew more about RSD than them, which scared them, and didn't help me out any! So they said I had Conversion Disorder, which is so not true. I have my doctor and physical therapist to back me up. I take a medication called Klonopin to help stop my tremors. Klonopin for me usually takes about 20-30 minutes to kick in. Now I am in constant pain and NO ONE believes me when I say how bad the pain is. All my tests came back negative, but the ultrasound did find out that I have decreased wave sounds in my feet. I was in Rochester 12 days straight. Now what seemed so normal like talking about guys, movies etc. seems kind of foolish. Or the pain takes over, and it's a 10 thousand times worse than a regular scale of one to ten. So as you can tell my life is spinning out of control. I can walk now. I'm on crutches for my right ankle because... it's just screwed up. The tests I had were, I'll list them:
Spinal Tap
Nero. exams
X-Rays (spine and throat)
CT of my head. * Found out I have a brain... too bad the people in my school couldn't get their little hands on that! * :)
So I am being left untreated. So you see my life is spinning out of control.

A Cold Fire

A cold fire burns within my body. Sometimes cold, all the time on fire. Not a huge surprise this is when you find out who you can trust. Who honestly believes you, and who are fakers. Well I am all alone. Doctors believeing this, and my parents fully agreeing. They would rather believe I am mental. They want to have a party. While I still am not being treated, and have to wait until my tests come back positive. Tests that don't even show RSD for a while, until it's too late. Then they MIGHT believe me. It hurts emotionally knowing that the 2 people who are supposed to believe you, NO MATTER what, are now brain washed. They would rather believe that I have a mental problem than saying I have a chronic and disabling disease. My life hasn't been easy. I was harrassed from the ages of 5-12. Then when I was 13 I was pushed down in PE. I couldn't walk. Now I'm on crutches because my right foot is being a bitch. I had problems with the school not believeing me, and our OLD pastor. That was 2 years ago for the harrassing, and last spring with the school and pastor. I was in counseling for the harrassment, and have learned to move on. They said I have Conversion Disorder, and that a psychologist can "save me." Save me from what?! I am absolutely positive I have RSD. I just have to wait until it's too late for treatment. I am helpless. While the cold fire moves up on my right leg every minute. I am not imaging the pain or discoloration of my foot and ankle. That it is moving up. I think, "will my limbs be deformed forever?" If I got to the right doctor I could be put into remission. I sliently scream and cry. No one seems to give a damn. When will someone put out the fire? Or will I be like this for the rest of my life? I wait for an answer, and no one wants to give me one. RSD, my parents/doctors are stealing everything away from me. Letting me burn a cold fire.

^* Broken ^*

I know what you have done to me. You have taken away my innocence in life. You stole everything from me. You made me grow up too fast, and I will never be a normal teenager again. I never used to think about much of anything. Except what usual teenagers think of. Now I think about everything that an adult has to. This may sound stupid, but the only thing that isn't broken is the "Titanic" necklace. I wear that necklace because that is the ONLY heart I know that isn't broken. Sure, time can mend a few things, but not a whole life! I wear that heart everyday/night because that fits me so well. I am a lot like Rose in that movie, only I have no one to pull me back and save me. I wear it as a reminder that not all hearts are broken, just mine. For I have become to think that is my heart. Trapped inside is that once-free and not-so-serious-girl. On the outside, everything is serious. Sometimes I wish I was that girl, because she had a lover. Only I look at that necklace, and I know my heart will never be fixed. It's not something you can take to a heart doctor or even a psyschologist. My heart is broken into pieces that can't be put back together with even the strongest glue. It's too shattered. You can barely even tell it's there, you can only see the damage. So think about it. What does the future hold in store for me? When my heart is broken into so many small pieces that it's beyond repair. No one can fix that. My soul is also broken. Much like my trust. I have to think everyone is an enemy, or else my heart will be broken into even smaller pieces. My soul is held down by invisable chains, with no key to release my soul. Anything I had is broken. Invisible ropes bind my throat, arms, legs until they bleed. Each time harder. Choking off any chance of fresh air. Everything in my heart and soul is broken into tiny pieces. You couldn't see them with the strongest microscope if you tried. It's all broken.


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