Saturday, June 27, 2009

An Open Letter to Our Family & Friends

Many print this out to hand to family members, or put on a bulletin board or on their refrigerator's at home to continual remind our families


Having RSD means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident most people do not know even a little about RSD and of those who think they do, many are actually misinformed.
In the spirit of informing those who wish to understand, these are the things I would like you to understand about me before you judge me:
-Please understand that being in pain doesn't mean that I am not still a human being. I have to spend most of my days in incredible pain and exhaustion and if you visit I probably don't seem like much fun to be with. But, I'm still me stuck inside this body. I still worry about school and work and my family and friends and most of the time I'd still like to hear you talk about yours too.
-Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been in pain for years. I can't be miserable all the time and, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I am happy. That's it......it doesn't mean that I am not in a lot of pain, or extremely tired, or that I am getting better or any of those things. Please don't say "oh, you sound better!" I am not sounding better. I am sounding happy. If you want to comment on that, you're welcome to do so.
-Please understand that being able to stand up for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. And, just because I managed to stand up for 30 minutes yesterday doesn't mean I can do the same today. With many diseases you're either paralyzed or you can move: with this one it gets more confusing.
-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.....it applies to everything.
That's what RSD does to you.
-Please understand that RSD is variable. Its quite possible (for me its common) that one day I'll be able to walk to the park and back, while the next I'll have trouble getting to the kitchen. Please don't attack me when I'm hurting by saying "but you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If that happens, please do not take it personally.
-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, or try these classes, may frustrate me to tears and is NOT correct. I am working with my doctor and physical therapist and am already doing the diet and exercise I am supposed to do. Another statement that hurts is "you just need to push yourself more, work harder..."RSD includes nerves and circulation, and our bodies don't repair themselves the way yours do; pushing myself can do far more damage than good and could result in recovery time of days, weeks or months.
-Please understand that RSD may cause secondary depression (wouldn't you get depressed if you were hurting for months and years on end?) but it is NOT created by depression.
-Please understand that if I say I have to sit down/lie down/take pills now, I have to do it RIGHT NOW--it can't be put off or forgotten just because I am out for the day (or whatever). RSD does not forgive.
-Please understand that I don't want you to suggest a cure to me. Its not because I don't appreciate the thought and its not because I don't want to get well. Its because I have had almost every one of my friends suggest one at some point. At first, I tried them all, but then I realized I was making myself sicker, not better. If there were something that cured, or even helped, all people with RSD would know about it. This is not a drug company conspiracy; there is world wide networking (both on and off the Internet) among people with RSD, and if something worked we would KNOW. If, after reading this, you still want to suggest a cure, then do it, but please don't expect me to rush right out and try it. I'll take what you say and discuss it with my doctor.
In many ways I depend on you -- people who are not in pain. I need you to visit me when I am in too much pain to go out. Sometimes I may need you to help me with the shopping or the cooking. I may need you to take me to the doctor or the physical therapist. You're my link to the outside world.

And as much as possible, I NEED YOU TO UNDERSTAND ME!

Sunday, June 21, 2009

Hope is Important!!

So I thought I would do a longer update then usual. I am going up north the Cleveland to see a new Doctor. I am kinda nervous but hopeful that things will work out for the best. A lady I met a week or so ago hired me to do the art for a foundation she is starting. 7 pieces to start off with and more to follow. She is doing a month on RSD because I told her about my story. She thought I was this little kid though. This is like the 15th time this month alone that people thought i was younger then a truly am. Some people say it is a blessing but right now I am kinda upset because I am getting treated like a 2 year old. It kinda stinks and all I wanna do is get treated like an Adult. With all I've gone through in my short 22 years I am a lot more mature then some people my age. I had to learn to take things in stride. I been on twitter a lot lately if you wanna follow me just send me a message @KissaHasRSD . I been talking to on of my friends on there and she has really helped me through a lot lately. She keeps telling me that I def don't wear rose color glasses about my RSD and I tell the truth. I always tried to be truthful about what I am going through. Some people think that is annoying but if my story helps someone else suffering then my jobs done right. Education is so narrowed to just what you lean in school and there is a whole world of information out there. I didn't know what RSD was till I was Diagnosed. Some people don't know about some diseases till it is too late and then it just stinks. But we gotta keep on holding onto Hope! Well I am gonna rest for a while. My stim died this week so I am not getting any relief from my pain.....Hugs to all!!!

Friday, June 19, 2009

Quik Update

I am not doing too good Something is wrong with My Pain Stim. But I am trying to stay positive! I made the following video with My Gran and Kaijen! http://www.take180.com/s/UP/r015r

Wednesday, June 17, 2009

Stupendous News!!!

I got into a really hard to get into Pain clinic in Cleveland!! I went into the hospital a little over a week ago and now I got a Appt. this upcoming week!! Thank goodness for DR. Referrals!!! I had to get a hotel room because I cannot drive that far in one day so I am staying over night then going in the morning then driving home.Not a lot going on. I am starting to walk pretty OK now. I walked 1/4 mile but totally payed for it last night and today. Kinda had a mini melt down. My grandma thinks I am being mean to her but I just cannot do as much as I used to and she is new to the RSD Kissa. I am flustered sometimes but hey I will still be alive tomorrow. Well off to dream land....going swimming tomorrow.

Tuesday, June 16, 2009

Boo Ya!

I am so happy to be fighting RSD! I am so happy to be 1 million times stronger then I was a year ago both physically and mentally. I started babysitting a friend of the families son, Kaijen, he is a sweetheart and he keeps me going. I need to be pushed a little bit but at the same time makes sure i don't do too much. A lot for a 10 year old to do but he does it with ease. We are getting passes to the Y and I will start swimming with him. I was dropped my physical therapy so I most likely will treat this as my PT. I am so blessed by God to be able to look back and see how far I have come. I really got a fire lit under my butt because of my hospital stay. I figured out that the Dr's are not going to help me here so i might just start helping myself. I will beat this RSD! Take that people who say I cannot do it!!! Boo Ya!

Monday, June 15, 2009

Update!

Hello all Here is an Update! I am feeling better this week....I start Babysitting Kajien tomorrow we are gonna go to the Y and Join up so we may go swimming. He showed up with his mom tonight and we played Wii for a while....totally blew him out of the water playing Bowling,we tied at Baseball,and he totally beat me at Tennis. I am feeling a lot better. Anyway I am off to see True Blood.

Thursday, June 11, 2009

My Horrid Hospital Stay

I went into the Hospital this week. I've been really bad pain wise for the last month. The Pain spread from mid-calf to Mid-thigh. Finally Monday Night my mom took me to the ER and they took me in and admitted me after 3 rounds of diloted. I went back to my room and I fell asleep. First thing in the morning the nurse came and she asked me how I was, I said I was in horrid pain and that the pain was in my left leg. She proceeded to grab my bad leg. If you know anything bout RSD you know that I wanted to cry/die/rip her eyes from her head, it hurt so bad. She asked "Does that hurt?" I almost wanted to yell at her but I was dying to bad to answer. They pretty much doped me up. The Dr's just kept saying to get my Pain Stimulator Adjusted. One Rude Dr told me that they don't treat chronic pain they only treat acute pain and post op pain. I Had a couple hyperventilation over that conversation right there. I stayed another night and they said the same thing in the morning. They refused to talk to my mother and I was totally drugged up and I couldn't think. So mom got me out of there and took me to my Dr. They adjusted my Pain Stimulator but it didn't help so I am at home. They handed me prescriptions for Tramadol and some more Lyrica. Right now I am home and not able to do a lot. So messages and the like are really appreciated!

Wednesday, June 3, 2009

This site is Awesome!

As the pain gets worse it is great to know there are others out there who are behind me http://www.shareandmakeaware.org/

Tuesday, June 2, 2009

My Life on CRaPS


I am starting to think my body has a mind of it's own. I always had soooo many dreams as a kid. When I was in 7th grade a week after my birthday I was walking down the hall and started feeling weird and before I knew it I was on the ground being shook by my math teacher. I had fainted. The called a squad but when they Came they said all seemed fine. This went on and on for months. I would faint 2 sometimes 3 times a day and sometimes they wouldn't call the squad. My fellow students and worst of all the adults and staff at my middle school started saying I was faking it. They thought that I was just a lost little girl trying to get a lot of attention. I even went blind one day and the nurse told me to walk around the office to probe that i was really blind. I walked into a sharp edged table and put a gash in my knee. She still didn't believe me.This went on for 7 months,no help nothing but judgments. I finally went to a neurologist who asked my mom if she knew my pituitary gland was being squished by fluid. He told us to go to a specialist in the matter and she finally told me what I had. Pseudo Tumor Ceribri which is a build up of fluid in the spinal Column and the brain. In my case the fluid was trying to get out and it was trying to go out my optic nerves. I ended up losing my side vision (peripheral) and the pressure on my pituitary stunted my growth and messed with my hormones. I finally got that under control, there isn't a cure for that either but there is a high rate of remission. I went in and out 2 times finally in for a while. Flash forward to 2008 April. I was working at Build a bear and I had just thought about quitting because I went out and got my nose pierced and they threatened my job if i didn't take it out. I almost wished I had walked away but hey....anyways. I was taking out the trash at work and my coworker was behind me and I was pulling the 1/2 ton metal trash kart down a small wheelchair ramp. I found out after that the kart was broken and I had been trained to pull a broken kart....big no no. It went rouge and ran into the back of my left heel....I blacked out and it felt like it hit a nerve and I almost threw up. I hobbled back after throwing the trash out.....blood in my shoe wasn't customer friendly so the let me go home but I went to Urgent Kare. They said i sprained it and might got something else and to follow up with a different Dr. So I did. Went to a mouse of a Dr. he put me in a walking boot. My foot started hurting....more then I would think a torn ligament and a sprain would be. I kept telling the Dr. but he said it was normal. We went back after 14 weeks of being in this boot. He thought I was just being a big baby. He told me that I needed to get out of the boot and into a brace.....he went to look at the swelling in my foot and he barely touched it and i flinched and pulled away. He finally said.....it might be RSD...but nothing was really said after. I stayed pretty laid up for about 5 months. No one said RSD again to me and I thought nothing of it. We did different tests and they all said nothing. I wasn't getting a paycheck so I was stuck at home with my parents. About the 7th month he finally said that I really had RSD. I was so pissed and frustrated by this time that I wanted to spit. My mom talked to a Dr. friend of hers and he pointed us in the direction of the best RSD Dr. in Ohio and he was 10 miles from my House. Dr. Deshpande worked real hard with me. We tried a lot of different things. He did a Sympthetic Nerve Block and did different narcotics. I ended up in the hospital after that with double the pain now. Nothing really helped. So about December he finally said that I should get a Lumbar Stimulator. It is a machine that sends out electronic impulses in hopes that those pulses will block the pain getting to my brain.....It works to a degree but I still got about 50 to 80% pain most days. I got it in January and now it is June and they are talking bout taking it out and starting at square one. My physical therpy dropped me till my dr. figures out what the future will bring. I am praying it will be a lot brighter then it is today. I am one of the lucky few to find out RSD in its first year.

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