Bone Scan and Dates

Got the results from my bone scan it proved that I do indeed have RSD and it also proved that my RSD has spread to my hip.
In other news I am kinda seeing this guy...he is a good friend of mine and he just moved back into town and I am really comfortable with him. I hope all works out but I am taking it slow cause my heart cannot take any disappointment right now.
I am making dinner for him tonight! I am siked! Well off to finish dinner!
HUGS!!

RSD Sucks Eggs lol

So been a while since I wrote so I thought I would update. My RSD has gotten worse since my Stim died over 3 weeks ago. I went and did some stuff with my friend Rob for the 4th but now I can barley walk without the assistance of a walker. My whole leg is flared up bad today and it is really swollen. Makes me wanna rip it off and throw it off a bridge. My friend Rob has really been there for me he took me out in my wheelchair and pushed me around to the parade and drove me to and from. He really makes me smile and he understands me completely. He is my best friend in the world. Happy Belated 4th to everyone btw. Well I am gonna go see if this leg will shut up and let me sleep.....a high school friend of mine names Gordo is coming over to see me tomorrow so i gotta be able to do a little something. Hugs and Pain Free Days to all!!!

A Letter To My Family and Friends

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!


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!!!

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

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.

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!