Kissa da Fighting Fish

I'm going Viral!

2012-01-08T22:17:00.000-08:00

So the other day after not being able to go to bed after hours and hours of trying I got an idea.
I had seen these note card videos recently, and how moving they are. I thought why not make my own but about living with RSD/CRPS. As I progressed late into the night, the idea sprang out of me. I finally sat down at my computer. Well more or less set up my bed room with enough lighting, and such. As I read through my cards I thought about each and every person who had ever said that my pain wasn't real. That pushed me out of their lives or I chose to leave theirs because the pain that was caused by their unbelief. I put all that pain and that hope for a new tomorrow into each and every word that I wrote.
My husband came into our bedroom right as I was about to start filming. He had been working on a project out on the computer and thought I had been sleeping. Long and behold I had been up this whole time cutting out and writing on cards. So he walks in ready to sleep, to a room which is a disaster area full of half written cards and paper pieces scattered all over our bed. He looks at me and with that look only a husband could give, says "I wanted to go to sleep, too." I looked back to him with only a pitiful look that I can give and replied, "30 more minutes please?"
So I got to work and went through the cards and put them to a video and edited the video together.
I posted it Saturday Morning at about 10:30 am EST. When I went to bed there was a little under 200 views when I woke up there was 969 views. Tonight Sunday 1/9/12 there is 1,443 views!
Now after all this you are probably saying. Where is this video?
Well here it is!

I hope you all like!

November is Not just a Turkey anymore.

2011-11-08T09:53:00.000-08:00

Not a lot has been going on lately. I am working now. I am a nanny. I love it even though it is part time. The girls are getting big. I fall more in love with them every time I get to see them.
They are getting upwards of 15 pounds. Riley loves to "stand" and Zoey loves to swing in the swing. They are amazing.
This month is RSD Awareness Month and I have been very very busy focusing on RSD/CRPS Awareness. Tomorrow we are having a chat morning on our website www.rsdcrpsdoesntownme.com. We have grown so far since Krista and I started this organization. We have so many people that think what we do is amazing.
Truthfully it shocks me. I am not doing anything more then I would want someone else to do for me. Researching this amazes me. I find something new everyday. I have met so many interesting people, who inspire me to be a better person.

Church has been amazing lately. My pastor has put out a book and I did a review about it. You can get his book on Amazon it is called "Choosing to Choose." I wrote a review about it at http://www.rsdcrpsdoesntownme.com/articles/review-of-choosing-to-choose-by-dr-tony-robbins
I really enjoyed this book and I think everyone Christian or not should read it. It would solve a lot of the world's problems!
Well I must get ready for work, so I will get off here. Love to all!

Here are Pics.

Riley^^^^^^^^^

Zoey<<<<

Riley and Zoey Holding hands.

Holding Riley and loving on her.

I am an Aunti

2011-06-19T19:51:00.000-07:00

I am officially the Aunt to 2 beautiful baby girls! Zoey Nicole Lynn and Riley Julia Madison were born via C-section Friday at 3:15pm. They are beautiful! I am so happy and I am proud of my baby sister aka sister in law and she did an amazing job!

This is Zoey she was 2nd born and was only 3lbs 2 ounces ^^^^^^^^^^^^

This is Riley she was born first and was only 2lbs 11 ounces ^^^^^^^^^^^^^^

Kissa is Back!

2011-01-12T21:16:00.000-08:00

As I said before I started back to work in early November and it has been really tough.
I love a lot of the people I work with, but dealing with my pain level while trying to finish my work has become a huge struggle. I am sometimes such a spoiled brat when it comes to working. I don't want to do anything, but I am slowly growing up and realizing that life doesn't work like that.
Life before RSD doesn't groom you for the fact in the future everything will be so much harder. There will be days that you don't want to get out of bed and face the world. There will be days that you hate your body and all you want to do is disassociate yourself with it.
I have been there and still struggle with it.
I cannot tell you how much I took my life for granted. Simple things like walking into the kitchen turns into a 10 step laborious process in which I have to decide is it worth it to do this.
There are days at work that I will decide whether or not going on break is a good idea because I would have to schlep all the way to the break room. So I have to plan ahead for these things.
I wish I could teach people who do not have a chronic illness or condition to slow down and really enjoy life. Stop taking it for granted like I once did. This time and your health is fleeting. It can be gone tomorrow!
I never thought I would have RSD, but I do.
I never thought I would be married, especially after the diagnosis, but I am to a man I could never asked for any better. Who loves me and takes care of me, and pushes me to try to be better each and everyday.
God has blessed me!
You are probably wondering, "Well Kissa, What about all you have lost? Aren't You angry that you got RSD? Isn't it Unfair?"

Yes it is unfair, but such is life. I was very very angry after I got RSD. I took it out on everyone and anyone who got near me.
I soon learned that this doesn't help anyone and it was hurting me more then I realized. It forced me to be alone, and hurt my soul. I then chose to turn this horrid thing that happened to me and turn it around and make it a positive.
I met people who had RSD and I started building a new life, one that I was proud of, that if anyone would ask "What is your life like?" I could tell them that my life is one of happiness, sadness, triumph, and love. The last, Love, being one of the most important. Not only do I LOVE my husband, I now LOVE myself. Which I don't believe I did before getting RSD. I had a long long time to mull over myself and really search inside. I wish everyone was given that opportunity. I think a lot of problems in society are caused because people are trying to figure others out when in truth they have no clue who they truly are. I bet if the typical person who hadn't gotten in tuned to who they are was left alone on a deserted island with all the necessities of life. They would still wish they had someone to share it with. This isn't bad, but to not want to spend some time getting to know yourself, becomes a problem that snowballs into a large number of social and psychological problems in the long run.
Well I must sign off for the night and sleep. Work comes faster and faster with each sleep.
Low pain hugs!

Its 2011 Already?

2011-01-04T21:43:00.000-08:00

So its been 5 months or so since my last post. I am happily married. I started back to work the beginning of November.
I never thought I would come across anything harder then going to work every day with my pain through the roof. I have to climb up 2 flights of stairs. It makes my pain jump higher then it normally is and I most days want to cry.
But it is teaching me patience and perseverance.
Plus it is nice to be getting a pay check even if it is mini one.
Well I am also supposed to get surgery sometime soon. I don't know when and any details. All I know is Workman's Comp is fighting me on it. GRRRRR
Well its bed time can't talk anymore.

Endrocrine System: How does it effect us?

2010-08-06T10:13:00.000-07:00

From what I have learned in the last couple years I attribute back to the Endrocine system.
The major glands that make up the human endocrine system include the:

* hypothalamus
-The hypothalamus (pronounced: hi-po-tha-luh-mus), a collection of specialized cells that is located in the lower central part of the brain, is the main link between the endocrine and nervous systems. Nerve cells in the hypothalamus control the pituitary gland by producing chemicals that either stimulate or suppress hormone secretions from the pituitary.
* pituitary gland
-Although it is no bigger than a pea, the pituitary (pronounced: puh-too-uh-ter-ee) gland, located at the base of the brain just beneath the hypothalamus, is considered the most important part of the endocrine system. It's often called the "master gland" because it makes hormones that control several other endocrine glands.
* thyroid
-The thyroid (pronounced: thy-royd), located in the front part of the lower neck, is shaped like a bow tie or butterfly and produces the thyroid hormones thyroxine (pronounced: thy-rahk-sin) and triiodothyronine (pronounced: try-eye-oh-doe-thy-ruh-neen). These hormones control the rate at which cells burn fuels from food to produce energy.
* parathyroids
-Attached to the thyroid are four tiny glands that function together called the parathyroids (pronounced: par-uh-thy-roydz). They release parathyroid hormone, which regulates the level of calcium in the blood with the help of calcitonin (pronounced: kal-suh-toe-nin), which is produced in the thyroid.
* adrenal glands
-The body also has two triangular adrenal (pronounced: uh-dree-nul) glands, one on top of each kidney.
* pineal body
-The pineal (pronounced: pih-nee-ul) body, also called the pineal gland, is located in the middle of the brain. It secretes melatonin (pronounced: meh-luh-toe-nin), a hormone that may help regulate when you sleep at night and when you wake in the morning.
* reproductive glands (which include the ovaries and testes)

My theory is that some how out Hypothalamus and/or Pituitary gland has been compromised. For some people it could be a near death experience, for some it could be a Cerebral Fluid Complication, or something else that caused the Hypothalamus to be compromised.
I have another rare disease called Psuedo Tumor Cerbri which is a build up of fluid in the spinal cord and brain. How I was diagnosed was because I had a CT showing my Pituitary Gland being smaller then usual and being surrounded by some kind of fluid.

In my situation my Pituitary gland was comprimised first. This may have caused a chain reaction that finally left my hypothalamus comprimised and since it is the link between the endocrine and nervous systems it makes sense that when I got hurt my nervous system was in the right state to bloom into full blown RSD.

Needless to say I am no doctor but it makes sense to little old me that if they are connected they can spread different problems that if they go unnoticed can cause bigger problems.

I think where doctors need to study is our brains. Mainly how our hypothalamus works compared to an normal brain that hasn't been comprimised.

Doctors please help us. This pain is awful. We want a cure. We would love it as maybe a birthday or Christmas Present.

My Wedding and Honeymoon Pics

2010-07-28T20:58:00.001-07:00

Big Update from last couple months.

2010-07-25T12:31:00.000-07:00

So its over I am married....I know I know....the Single Men of the World Weep and Wail over their loss LOL. It was amazing! The Friday before my friend, Tara, planned my Bridal Shower Some of my Closest Friends and Family came and it was a blast! Tara set up an interview on tape of Joey answering questions about him. They then asked me the same questions and for every one I got incorrect I had to put a Marshmallow in my mouth. I ended up messing up a lot cause I was in a bad RSD fog that day but it ended up being hilarious. We also did a Honey-do list and I got all of them right.

The Tuesday before the Wedding my friend Sarah came into town all the way from the UK. I was sooooo happy when she was safely here. We went to the Zoo that Wends. and we had a lot of fun. Sarah had never been to America so going to the zoo was a blast and we also saw stuff there that we hadn't see when we went the day Joey proposed.
Thursday and Friday were spent working on setting up and getting last min. stuff for the wedding. The groomsmen finally got their outfits and they looked amazing!
July 16th we had rehearsal. I was so tired and in pain because I couldn't sit down correctly. My RSD kind of ruined the moment but I still had fun. Joey and I were sooooo nervous.
When I woke up the morning of my Wedding I felt sick to my stomach but I was excited. We ran off to get me and my friend Tara's Hair done and we both looked killer. We ran to the church and I started getting ready. I got to talk with Joey's Mom a bit as I was getting ready and it helped me to relax and focus on this happy day. Finally we were ready to put on my dress and i felt like a Princess as I put it on and was strapped in. Everyone lined up and my mom left to go light the unity candles with Joey's Mom and she then came back to join me and my dad to walk me down the aisle. It was heaven. As my parents walked me down the aisle my dad realized that he hadn't taken off his Shoes. Everyone was shoeless in honor of me because I can not longer wear normal shoes because of my RSD. So halfway down the aisle my poor arthritic 64 year old father bent down and proceeded to try to take off his Shoes. It was one of the funniest things ever.I finally got to the end and was handed off to Joey. He looked so handsome in his Blue Shirt and Tie. I was speechless. We said our vows and we were getting ready to exchange rings and we turned around to get them from our best man and maid of honor. Suddenly Joey's Brother Josh who was one of his Best Men whipped out a Cracker Jack box and proceeded to open it eat some and pull out my ring. It was one of the funniest things I had seen in my life. We finally exchanged rings.
We then walked to light the unity candle and walked back Husband and Wife.
We walked out of the ceremony and into our reception and it was amazing. It was beautiful. Our wedding cake was more then I could have imagined. Joey's Grooms cake was beyond amazing! The food was lovely and the company even more so. Everyone ate and had a blast. Joey and I danced and I tossed my bouquet. Sarah my friend from the UK caught it.
Joey took off my garter and he tossed it and Josh his brother caught that. So we made Josh put my garter onto Sarah who we had been trying to hook up together since she got into the States. They are such a cute couple.
Finally everything settled down and a lot of people left so we opened our gifts and got so much stuff. It was amazing!
We finished and decided to change and got ready to leave. My friends had decorated our car with cute sayings and the back had a big Just Married written on it. We finally left and got out on the road. We went to West Virginia to a little State Park Called Pipestem and stayed in a little hotel at the bottom of Bluestone Gorge.
It was amazing! We stayed there for 5 days and went to Hinton. Princeton, Sandstone Falls, Beckley to the Coal Mine. It was amazing! All together it was a heavenly trip with my husband.
I love my hubby and I am sooooo happy to now be Mrs. Christa Whightsel
Here are some photos.

Hey Guess what?!?!

2010-04-16T09:09:00.000-07:00

So I haven't written in quite a while so today I was like I should write something cause a LOT has happened lately!
The date was april 7th, 2010 and my boyfriend, Joey, decided to take me to the Columbus Zoo to help me take my mind off of the fact it had been exactly 2 years since my accident that caused my RSD. We had a blast we saw all the animals and laughed so hard when I joked that his relatives were there. (The monkeys) He pushed me around in my grandmother's wheelchair and never once complained! It even took 45 mins to wait in line of lunch but he did it all with a smile.
If you know anything about me it is hard and close to impossible to surprise me. My mother tried when I was 17 and I knew what was going on weeks before the surprise party. So knowing I knew what could happen that day Joey told me that he forgot the ring. He really had me going, and I got to the point I was rather miffed he could have been so careless to leave something as important as my engagement ring at home.
Finally due to my Rsd pain we had to leave so instead of going home we decided to grab dinner at Applebees.
We sat down and ordered and got the awesome 2 meals & an appetizer for like 20 dollars...I know goods deal eh? LOL I suddenly wasn't hungry and this is normal for me but oddly Joey wasn't hungry either. He was oddly jittery and totally not like himself. We paid the bill and boxed up the left over food but we didn't leave he just kept telling me to wait a second.
He finally got up and asked me if I knew what was in his hand. I was confused because I thought he didn't have the ring. He proceeded to get down on one knee and ask me if I, Christa Elisabeth Azbell would do him the honor of becoming his wife, his best friend, and soul mate!
Well after all that I of course said yes! He proceeded to put the ring on my finger but something was wrong. Number one it was too small and number 2 it was the wedding band of the set and not the engagement ring. Me being the type not to correct and thinking it was truly the ring I love it because it was a symbol of my future husbands love for me. I literally couldn't breath let alone speak to let out the emphatic "yes."
He put it on my pinky for the time being and we went home to show mom and dad. I was stoked all the way home! I was engaged!
I showed mom and grandma because dad wasn't home from work yet. Grandma made me cry because she told Joey to take care of her baby grandchild. I have never seen her that proud and happy! Mom decided we should go to a jewelers to see about getting the ring sized correctly. We ended up not finding a place but Joey asked my mom while I went in to ask about sizing if he should give me my other ring to get sized. He then pulled out the engagement ring. Mom immediately told him to give it to me and he brought it in and I turned around to see him sheepishly standing there with the ring. I nodded and he put it on my ring finger.
We went home and showed my dad we took pictures and re enacted the scene for posterity's sake and went outside and took pics of the ring and me and Joey.
The next day I researched a little and found out that there was a well accredited jeweler in Worthington,OH 17 mins from my house. So before I had to pick up Joey to take him to work I took me and my mom to there and got sized. I told Joey that it wouldn't be back till saturday morning.
Later in the day after taking Joey to work my mother yelled up at me and told me to get in the car. We went and I found out that my ring was already done! So when I went to pick Joey up from work I was very excited! When he got in the car I flashed a grin and then subtly showed off the ring. He got all excited and I took it off and handed it to him and asked if he wanted to make it offical. He placed it on my finger and its never coming off! Ever!!!

I have been planning the wedding since that fateful day, and so far not a lot of stress cause it causes my pain level to rise drastically. I have my whole budget planned out and everything we want split between me and Joey doing it and I pretty much have everything but my photos budgeted in but that will come on Saturday!

Anyway! Hope you guys enjoyed and I can't wait to be married this summer July 17th!

Here are some photos LOL

I will put up pictures of the ring on my correct finger when I take them.

First few weeks of march!

2010-03-10T09:11:00.000-08:00

My RSD Leg is getting worse. It is very scary sometimes, and it is very very hard to deal with mentally. You don't want to let on to the people around you just how bad you are hurting. I have found if you talk about how much pain you are in, people tend to think you are just being a baby. It isn't fair that I have to have RSD, and it is very scary. I try to keep the good people in my life and the ones that don't care I leave them on the side of the road of life. It is very hard to push those people out of my life. Even though they have hurt me they are still a part of my life. I have to watch and take care of my mental and physical health and negativity doesn't help any of that.
The last couple weeks I have been very busy, and now I am paying for it. My future sister in law and I went to the Art Museum and did art projects also. We had a blast it was treat to have Delilah over and hang out and be silly girls. We watched a lot of movies,ordered pizza, ate cookies with lots of icing,ate chips, and had sandwiches. It was amazing and very yummy. 2 days of just being silly.
Now my ankle is huge because I pushed myself too much. It wasn't a good idea to push myself like that.
I really want to go see Joey today but I don't know what time I will feel up to leaving the house let alone getting cleaned up.
We are currently still celebrating World Wide RSD Angel Month. In order to celebrate we are collecting RSD stories from patients and caregivers. We need to educate the masses on the horrors or RSD/CRPS.
The road to a cure starts with education! Check out www.rsdcrpsdoesntownme.com and share it with your friends and family. Help us spread awareness!

World Wide RSD Angel Month

2010-02-26T16:28:00.000-08:00

These last couple of weeks have been rather stressful but now we are only a few days away from the beginning of World Wide RSD Angel Month. For the whole month of March RSD/CRPS Doesn't Own Me is hosting a month filled with celebrating our Battle against RSD. We are looking for testimonies and personal stories straight from RSD Angels themselves.
We hope to collect as many as possible and to have them on our website to spread Awareness about RSD/CRPS. It will be the largest collection of RSD Angel Stories ever!
RSD/CRPS Doesn't Own Me has been growing in leaps and bounds lately. So many people are learning about RSD and why we struggle each day to stay positive and live our lives.
Also our store is growing as well. We have almost tripled our products within the last 3 months.
Check out RSD/CRPS Doesn't Own Me's store at www.zazzle.com/kissdatfisha/gifts all of the proceeds go to Continued Awareness, and expansion of Awareness about RSD/CRPS. We are fighting this battle every day and we are working hard to win this war against RSD/CRPS. We will have a cure!

Update

2010-02-20T19:04:00.000-08:00

Pain hasn't been a big problem lately. I have been learning and growing a lot as a person these last few weeks. Joey and I have been growing as a couple also. I love him more and more each day. He just makes my heart flutter. I can't wait till we can be together forever! He is a great man!
He really helps me over come my pain and not sit on my bum and be a slug. It gives me hope and happiness to be around him!
In General life is good. I have been sickly though lately. My leg hates me on a regular basis. It is rough but I like my life.
Joey took me to Dave and Busters this past week and also took me to Build-a-Bear. It was nice and just the thing I needed.

A Rallying Call to Arms

2010-02-03T23:02:00.000-08:00

So it has been majorly busy lately. This past weekend COGS had their premier of our new Movie "Phantoms of the Twin City Opera House." It was amazing! We then hosted a public ghost hunt after the movie and a large number of people came. We had a lot of really cool activity and the cool thing was that my boyfriend Joey and my dad were there. I like sharing my life with Joey. We are always around each other. I miss him when he isn't there. It is like a part of myself isn't around.

I have another Ghost Hunt Movie Premier this upcoming weekend at Bobby Mackey's Music World. I can't believe how cool it is that we get these opportunities and get to meet the people that we do.

So I am planning on going away for vacation soon and I am totally excited! Joey is taking me camping in a cabin! Woot! What a nice valentines day gift? We are planning on talking about something very important while we are there. I am looking forward to sleeping and just being away from it all.
We aren't going to have any cellphones, computers, video games, nothing. Just a book to read, maybe a movie or two, and some board games. Its gonna be amazing!

This week I wrote something for RSD/CRPS Doesn't Own Me and I wanted to share it with anyone who hasn't seen it yet. It is a rallying cry to arms against RSD. This was never written about anyone personally, private, or other wise. It was only to remind all of us that RSD is our true enemy. Not each other.

It has come to my attention that there is a lot of gossiping, slander, and hate among our RSD Angels.

When I made this Awareness Group and Fan Page I never would have believed I would hear that my wonderful Angels were fighting among themselves.

We deal with horrific pain everyday. Wouldn't we want happiness in our life? You are the only one that can control what you say and do!

I hoped not to have to write a note about this topic. But apparently some people need to be reminded that WE ARE ALL in horrid gut wrenching searing pain 24/7.

When you are an RSD Angel you need to think of all of the RSD Angels. We are fighting for each and every one of us to someday have a cure. Not just one!

This isn't a one person fight or dream. It takes team work, and who can work as a team when we are divided?

If we are allowing ourselves to be catty or go around spreading lies that is making our fight for a cure and awareness of RSD/CRPS that much harder. Instead of taking that much needed 2 steps forward we have brought ourselves 10 feet back.

I don't care who started any of the gossiping, slander, or hate, I want it to end here and now.

As I said a couple of days ago. Let us start anew! This is the first day of the rest of our lives. Are we going to let our emotions, or this horrid RSD control how we act? I say no!

Let us stand up and say we are RSD Angels we walk through fire, hell, and brimstone everyday and we still are here. We still are smiling. We are victorious and we will overcome RSD/CRPS! Now Who is going to join me and put aside everything else and fight against our only common foe..........RSD/CRPS!

There is a copy of this and other articles by RSD/CRPS Doesn't Own Me Staff Members @
http://www.rsdcrpsdoesntownme.com/articles.php

Quick Update Now!

2010-01-21T12:15:00.000-08:00

So the next few weeks are gonna be crazy busy.....I am so nervous about it and I pray that everything is going to go ok. I have one movie premier the end of Jan and one the first week of February. I have planned the one at Bobby Mackey's myself. I am very nervous and hope it goes over well. We will be signing autographs and showing the movie starting at 7 on the 6th of Feb. Then on the 30th of Jan. we have the McConnelsville Opera House Premier and Public Investigation. This will be our third Open Public Investigation there and I am really looking forward to it!
Then the weekend after that Joey is taking me Camping.....I am very excited!

Pain, Pain go away, Come Again Never!

2010-01-11T17:10:00.000-08:00

My pain has jumped up through the roof lately. Maybe because of all the stress I have been under. I had to go to church yesterday cause I am in charge of some service stuff. So I was there from 9 till almost 1:30. Then I had to go change and go to Tara's to hang out. By the time I got there I was dead. My whole leg was shooting pain and I wanted to die. So Joey and I decided to go back to his house and see if hanging and chilling there would help. But by the time we got there I was crying just from the vibrations of my car. So he decided that I couldn't drive myself home so I had to stay at his house.
He is soooo very protective of me....I was in so much pain but he didn't want to allow me to be alone.He held me most of the night and tried to calm me when I had bad pain spikes. All in all he is an amazing man. I can't believe how lucky I am to have him. I can't wait to spend the rest of my life with him.
Life is stressful but when I look to the future I tend to have a smile on my face and that is something I haven't really done since before my accident. The future looks very bright! It would be even brighter with some bling bling but I am just saying LOL!
Anyway I am off to lay down and chill for a bit. HUGS!

Frustrating!

2010-01-09T09:19:00.000-08:00

So I haven't been writing lately though I don't know who read this blog anymore.....I am pretty much writing for my own sake I guess. New Years was good. Joey and I went over to Kat's House. I helped her plan the party and I ended up dying the whole time there and my ankle blew up to the size of a house. Just the left one aka my RSD Ankle. I am sooooo frustrated with my RSD in general and also I am frustrated with Workman's Comp!
I woke up this morning and my mother gave me a report from an email I got about my Workman's Comp case stating that I really didn't have RSD that is is really cause I am overweight and to put a horrible cherry on top of all that stated they called my mother enabling!
How can they get off saying things like that?! I am the one with the Neurological disease called RSD not my mother....she has nothing to do with this!!! How dare they attack her?! I can deal with what they say about me because I am used to it but bringing my mother into this is the last fricking straw! You thinking I was fighting barely before but now they brought my family into this and now it is all out war now!
You try to help your family while you want to crawl into a ball and die because the pain is through the roof and your whole leg is spasming!? I would like to see any of those pencil pushers deal half of what I deal with on a daily basis! UG! I just can't believe it!
Anyway enough being pissed off at the state.
Sorry if this offended anyone.....I am just sooo tired of bending over backwards and being in this horrid pain. I just want to be able to sleep without having to use a sleep aid because I can't fall asleep or stay asleep because of my pain. I am tired of dealing with the shocks and the swelling within my legs. I am tired of people not believing me!
I am so tired that I just wanna run away but that isn't possible! I am injured! I just wanna get better. I am 22 years old! I have dreams I wanna be a regular member of society and I just want my life back!

Christmas Bells

2009-12-27T10:30:00.000-08:00

Well This had to be the best Christmas ever! It started off that I joined Joey's family for Christmas Eve. We exchanged the first part of our gifts. I gave him a sign that says "Bengals Fan Parking Only" and I gave him a picture I made of him standing under a rainbow of skittles, and it came with a whole huge bag of skittles.

He loved it and he is going to put it up as soon as he finds a nail.
He gave me a HUGE basket of good smelling stuff and also a gift card to Bath and Body Works.
We hung out and watched Harry Potter in his living room and just snuggled and enjoyed the Christmas lights.
The next morning I woke up and the family and I opened gifts. I got a whole bunch of great amazing stuff. I finally got a Snuggie, it is Blue and really soft. I also got Blue foot and Leg warmers that i can wear to keep my RSD leg warm and won't have spasms because of the cold. I was told I have gone over to the dark side because I got a snuggie but it is oh so warm and wonderful!
I also got an amazing amount of scarfs from my favorite place over in Easton. I literally have drooled over these scarfs whenever mom takes me to the movies. So she got me close to 10 of them in various different colors. Now I will stay warm and fashionable LOL! I got mom a digital picture frame, and grandma a bunch of CDs, and got dad a robe and a mug with the original RSD Awareness drawing from RSD/CRPS Doesn't Own Me.
He likes his coffee and he would be spreading awareness of RSD while drinking his coffee. The whole family also got bumper stickers with RSD on them.
After we opened gifts Joey came over so that he and I could exchange part two of our gifts. I gave him a Bengal's tie and a cute little teddy bear with its own Bengal's sweatshirt! It is cute.....its name is Ocho Cinco after the Bengal's player with the same name! I think it is the cutest thing ever and he took it with him to work yesterday so that it is always there.

He gave me the best gift ever! He gave me a beautiful Heart Locket with a Red stone in the shape of a heart. I am in love with it! He really is there for me and that just showed how much he truly cared. Mom and I are planning on printing out pictures to go in it. After we exchanged gifts we walked a bit around the house and took pictures together. It was so nice tospend our first Christmas together like that.
My RSD has been a lot better lately. Pain has been low and not a lot of swelling other then today cause I did too much yesterday and then i went and twisted it last night. Oh wells.
I hope that all of your Christmas's were as good as mine!
Also hope you have a Happy New Year!

Love is in the Air!

2009-12-21T10:39:00.000-08:00

So I have been dating Joey for a while now and I am so happy with him. It is as if there was a Joey shaped hole in my life and a me shaped hole in his. We just slid into the place and it is as if we were always there. I love hanging out with his family and he enjoys being around mine.
I don't know how I became so very lucky to find a guy like Joey.
My last few weeks have been very low pain because of all the happiness in my life. My life is practically stress free and it is all thanks to my family, friends, and Joey.
It blows me away how much that we care for each other and how much I miss him when he isn't here. He looks at me like I am something precious and fragile. He makes me laugh like no one else, and I love doing stuff for him and with him. We can just sit on the couch watching a movie and it is better then going to the finest restaurant in town.
I love him! I don't care who knows! Cause Joey Whightsel is amazing and he is my man!

Formal Dance & Christmas.....LA LA LA!

2009-12-06T15:26:00.000-08:00

So We had a Formal Dance at Church this past Friday and all of my gal pals went as each others date. I went and got my hair done early in the day and then all of us girls....well me Tara and Darc went and got Tara an outfit for the dance then got home late and got ready fast then went picked up our friend Amy and went to eat @ Panera Bread and we had a blast!
We then got to the Dance a little late but had a blast and I got a little of dancing in before having to sit the rest of the nite in pain. We sat around and talked and just had a blast I took a video of all the craziness and its funny!
http://www.youtube.com/watch?v=Iisdhyu0mCo
We had an awesome time and then after we tired of the dance we went back to Darc's and we watched "Sister's Keeper."
Then on Saturday me and my boyfriend Joey went with his aunt and uncle to a Nativity. It was awesome! But now because I was out in the cold my RSD leg hates me. But yea it was a lot of fun! I loved it!
Anyway I have updated the RSD/CRPS Doesn't Own Me Website and its awesome!!!!
You should check it out!
www.rsdcrpsdoesntownme.com
Pictures:
Top- Is Me!
Middle- Amy and Me
Bottom-Joey and Me

Belated Birthday Party

2009-12-01T11:20:00.000-08:00

So last night my friends surprised me with a belated Birthday part since I have been so sick lately. We went to church for FHE like normal and I had to give the Lesson and as soon as I was done I looked up and My friend Lori was sitting in the room! I was so suprised! She had brought with her a HUGE birthday cake and after we all decorated the church for Christmas we all went into the Game/kitchen area and we had the cake! It was perfect! I have never seen anything that beautiful in my life!

After eating the amazing cake we all piled into our cars and went to my favorite place on earth! MOMO's which is a Karaoke Bar....just like they have in Japan. We had an awesome time! We sang till about 11 and the boys even sang "Afternoon Delight" I don't think I have laughed that hard in a long long time! It was just a blast and I missed my friends!

Post Birthday Post from a Official 22 Year Old

2009-11-25T09:07:00.000-08:00

So yesterday was my birthday. My RSD woke me up at the exact time I was born 6:45am.....needless to say I wasn't really in the mood for celebrating. It was not an over the top day but I had fun none the less. I am still sick so my friends didn't plan my party till next week. I love them with all my heart.
Mom and I went to Benihana's because I got a free gift certificate for dinner there. I had sushi, shrimp, and yakisoba (which is my favorite it is a sweet noodle dish with veggies.)
We even got my and mom's picture taken for free and they sang happy birthday to me in Japanese! I had a blast! We went home and watched telly till mom had to go to work.
Then my friend Rebecca came over and we ordered Pizza and some Soda and watched "Its a Boy/Girl Thing" and talked.....
Then Darcy showed up and we all laid on my bed talking and being goofy as Carter snuggled with us.
(Darcy brought him over along with her gift for me so that I didn't have to be alone.)
It was really nice and we had a blast....but soon Becca had to leave but Darcy stayed for a while till mom got home and I opened my presents and we had cake.
I got Pjs so that I have something to chill round the house in, Sims 3 the expansion pack, and a 26 inch HDTV!!!!
I am going to redo my room and turn it into a chill pad and move my bed up against the wall where my window is and take out the bigger stuff and bring in a couch from downstairs.
I am looking forward to it!
I found out that I am going back to Cleveland Clinic for a second Opinion on my RSD. Mom and I are going up there early and making a mini vacation out of it. Hard Rock Cafe and Rock & Roll Hall of Fame. I am excited!
Anyway I am going to go chill now cause its a gloomy day and that is causing my RSD to flare up bad.

Almost My Birthday!

2009-11-21T16:47:00.000-08:00

My birthday is on Tuesday and I am rather excited.....it has been a rough year since my last birthday. RSD is a very rough disease to cope with. I know it is rough on my family as much as it hurts me.
I am soooo very lucky to have such an amazing family.
I am blessed to have my parents who are there by my side.
This week I have been sick sick sick...and once again I am sick again.
I was going to go with my friends and My Ghost Hunting Squad Researching today and got about halfway to my friends house and I got insanely sick!
It was so very embarrassing and demeaning getting sick on the side of the highway.

The guys went to the Court House and researched without me and it made me sad cause I had planned on having a fun day with them and then going debunking tonight at Bryn Du, to see if they can recreate the thing that we caught on video the other weekend.

I met this guy named Joey this week and he seems nice enough. I might get to meet up with him soon and hang out with him...I haven't gone on a date in a while so it would be nice to have one for a change. You know?

Well anyway I am gonna go talk to some friends online and chill and try to feel better.
Hugs!

List of Foods to Not Eat & What is Fine

2009-11-20T06:52:00.000-08:00

This was borrowed straight from http://artzoo.com/health/rsdcrps.htm

Here are some basic guides to follow:
Most Important! No CAFFEINE, or anything that contains caffeine (including chocolate, OK OK you can cheat once in a great while with the chocolate if you watch all other intake) caffeine stimulates the nerves. If you are addicted to caffeine the most painless way to stop is to drink ginseng tea, (found in most grocery stores) it gives a lift and eases caffeine withdrawals such as headache and irritability. Eventually you should give up the ginseng (a mild stimulant) and drink caffeine free herbal teas.
No Alcohol
Stop Smoking nicotine is a nerve stimulant, tobacco has a poison called solanine, that causes pain in muscles. There are nicotine free cigarettes that contain passion flower, a muscle relaxant, and other natural ingredients that if you really need to smoke, you can satisfy the cravings until you kick the habit.
Click here to e-mail me for info on cigarette replacements.
Do not use nicotine patches or gum, they can cause a worsening of symptoms.

Foods you must avoid:
Wheat and foods containing gluten. (oats, barley malt, modified food starch, etc.). Substitutes: corn and rice pasta available at health food stores, as well as rice, sprouted grain bread and other wheat free breads (spelt, millet).
Avoid foods in the night shade family: tomato, white potato, eggplant, peppers, and tobacco, they contain solanine. Solanine is a poison, a natural carcinogen causing pain in the muscles, and aggravating symptoms. (Red skinned potatoes are recommended)
Sugar substitutes: aspartame, saccharine
Avoid food preservatives and additives as much as possible.
Animal protein: avoid red meat, avoid antibiotics in poultry & eggs if possible in your area.

Read all food labels so you know exactly what you are consuming.
Foods you must avoid at first: then slowly add one at a time back into your diet. It's recommended to keep a journal of symptoms when you introduce a food and avoid ones that cause trouble.
Dairy products and foods containing dairy: use Rice Dream or Almond milk to substitute.
Sugar: check all food labels other names for sugar include: brown, granulated, powdered, dextrose, fructose, galalactose, glucose, glycogen, lactose (milk sugar) maltose, mannitol, monosaccharides, polysaccharides, sorbitol, sucrose, barley malt, honey, maple syrup, molasses, maple sugar, date sugar, turbinado sugar. Use stevia in replace of sweeteners.
Nuts: peanuts, pistachios, and walnuts
All fruits: and fruit juices, start back slowly to fruits by eating apples, grapefruits, strawberries, and melons.

What you can eat freely unless you are allergic:
eggs
all vegetables and legumes (except mentioned above)
fish/shell fish
whole grains: kamut, millet, brown rice, wild rice, spelt, teff
nuts: almond, brazil nut, filbert, macadamia nut, pecan, pine nut
poultry: chicken, turkey, Cornish hen, duck, goose, game birds

Eat four to five small meals a day this gives the body the fuel it needs otherwise the body will rob the muscles of essential nutrients.
Drink water a gallon a day if you can, distilled only.
Psyllium: take one Tbls in large glass of water with aloe juice 2X a day to promote and maintain healthy bowels and rid the body of toxins.
Essential Supplements: use nondairy, gluten, yeast, artificial color and flavor free only. Click on supplement names to purchase
A 5,000iu (protects the cells)
B complex, high potency, time released (helps restore healthy nerve function)
C at least 2000mg-5000mg a day (antioxidant, reduces inflammation & pain)
Calcium 2,000mg a day (strong bones, aids in neuromuscular activity)
Coral calcium if you can get it
D 400iu daily (relieves muscle spasms and pain)
E 400-600iu daily (antioxidant, maintains healthy nerves)
Glucosamine 1.5g a day (joint health, involved in formation of tendons ligaments, and bones)
Chrondroitin 1.2g a day (important in creating cartilage in joints)
Magnesium 750-1000mg a day (prevents: depression, dizziness, muscle twitching and weakness)
Lecithin 1,200mg 2X a day (helps nervous system, and is involved with neurotransmitters)
Herbal Supplements:
Primrose oil (essential fatty acid, anti-inflammatory) take as directed
Acidophilus friendly bacteria use non dairy formulas (maintains healthy digestive tract)
Spirulina high protein microalgae (contains nutrients that cleanse and heal the body)
Coenzyme Q10 100-200mg a Day (improves tissue oxygenation)

Topical Remedies: Rosemary oil and lavender oil diluted with water or witch hazel rubbed onto the skin can relieve pain.
Zoltran* (Caspian cream) made from hot peppers can relieve pain (caution! apply with cotton this cream is hard to get off and really can burn) it works to inhibit substance P thought to be linked to pain.
Moderate Exercise is crucial in for recovery, in addition to physical therapy walking or hydrotherapy, depending on where you have the RSD/CRPS, at least three times a week (do not overexert yourself to much, this can aggravate symptoms) followed with gentle stretching. Try to stretch every day,

Fibromyalgia patients exercise is a must, it will help with insomnia and remove the toxins trapped in the muscles. Symptoms will improve after your body gets used to exercise. (Candida infection click here is common in people with fibbromyalgia). In addition to the above listed supplements you should take Melatonin, sustained release formula is best (promotes a sound sleep) take 1-2 hours before bedtime, use as directed.

Please show this information to your Doctor and get approval before following this advice.

Birthdays and Stuffy Noses

2009-11-18T14:00:00.000-08:00

So How Does Everyone like my new Layout? I had a blast putting it together....it needed to be done. I went to the Doctor again today and I am downgraded to a bad case of Bronchitis. Which is better then what we thought it was. They gave me a breathing treatment, a shot of steroids, some more antibiotics, and another inhaler.
My RSD has been the last thing on my mind lately because I have been soooo sick. Things have been ok as far as I can tell. I am going back to Cleveland Clinic to get a second opinion on my RSD. I am going Dec.17th. Hopefully my mom can come with me cause I hate going to that kinda thing without her.
My birthday is this upcoming Tuesday and I am going to be the BIG 22! I am excited yet nervous at the same time. I don't know what is gonna happen if my friends have anything planned... I don't really care either way. I am just tired and need to sleep.

RSD makes me Sick!

2009-11-16T15:25:00.000-08:00

So anyway I have had a boring week. I have been sick since last monday and I now have pneumonia. RSD stinks because it effects how my immune system works. My friend Darcy gave me the cold that began all this and she barely was sick a day. I can't just be sick a day i have to go all out LOL.
I am babysitting her dog this week, Carter, while Darcy has to deal with some personal stuff. He is a snuggle bug and I love him. He is a 3 year old black pug chihuahua mix.
Right now I am just trying to chill and try to get better. The Doctor ordered me some steroids on top of the Zpak, inhaler, and nose spray that the Doctor prescribed to me.
I took a picture of all my medicine the other day and it made my jaw drop. It is scary how fast I have gone from no meds at all to a ton.
My birthday is a week from now....on the 24th. I am going to be 22 and I hope that everything goes ok between now and then. I have no clue what my friends are planning. I hope it is something low key because my RSD has been acting up a lot lately.
Anywho I gotta go get dinner now....till next time!
Also Please buy some stuff from this store the proceeds goes to RSD/CRPS Awareness & Research
RSD/CRPS Store

RSD Awareness Merch!

2009-11-13T19:09:00.000-08:00

Holidays are shortly on their way! Have you started your present shopping yet? Let me suggest a store that all proceeds go straight to RSD Research. There are tons of RSD/CRPS Related Tshirts and other Merch! It is all for a good cause! Stuff for every price range! There are also some amazing Awareness Items to help Educate those around you!

create & buy custom products at Zazzle

RSD Awareness Month

2009-11-04T13:38:00.001-08:00

RSD is Horrid Disease to have to live with. It is like a roommate the burns everything that they touch. My nerves are fighting against me and make me feel like crap. My limbic system is on the fritz because of it also.

November is RSD Awareness month. I have been really busy with RSD/CRPS Doesn't Own Me the fan group I started on Facebook. Me and some other people are adding information about RSD, or facts, each day this month. It gives me pleasure to help my fellow RSD Patients, or my RSD Angel.

I also started a RSD Store to sell Stuff Designed by me and help spread Awareness. Here is the URL http://www.zazzle.com/kissdatfisha and all proceeds go to help find a cure for RSD.

Also my birthday is coming up real soon. On Nov. 24th I will be 22! I am really excited! Who is gonna give me a gift? LOL just kidding!

2009-10-27T12:27:00.000-07:00

Haven't Written in a while. Been busy with church and stuff. I love my new friends and I love learning about God more and more each day. It makes me smile a little brighter and walk a little lighter. Tara and Darcy have been the stronghold in my life other then God. We hang out most of the week and I spend the night at Darcy's and Tara comes over and we watch movie upon movie and just giggle and laugh till we fall asleep.

I miss home sometimes but it is nice to act like I am normal every so often.

Things have been so crazy lately that a little bit of fun helps me forget.

I went to the Ren Fair this past weekend and got kissed by a random guy. It was awesome!

I made this Yesterday

2009-10-08T22:18:00.001-07:00

New Meds.

2009-10-02T10:57:00.000-07:00

So this monday I had a appointment with my pain management doctor, Dr. Deshpande, and it was a big appointment.
We talked about my pain and how bad it really was. He decided to put me on a new pain medicine Embeda, which is pretty much time released Morphine. Then we decided for my breakthrough pain and/or flare ups that I should take my Lortab (also known as Vicodin.)Also we talked about how I haven't been able to sleep so he also put me on Lunesta.So as of Now I am taking Lunesta 3mg @ night, Lorab 10/500mg as needed, and Embeda 20-0.8mg 2xday. I hate having to take so much medicine but I got to take them so that I can function.
I need to get to my general practitioner soon because there are some other things wrong with my body that might be a side effect of the amount of meds I have taken the last 2 years.
Also I am seeing if my pain doctor will approve me getting a scooter or a wheelchair because it is hard for me to get around without extra help.
My pain has spread to up to my left side. So my whole left leg is also taken by the RSD pain. It is frustrating but I am trying to live the best I can.
I started a new fan club called RSD/CRPS Doesn't Own Me on Facebook
> we have over 200 fans who have or know someone who has RSD. I am trying to spread joy and happiness and help all of us who have chronic pain get through this with a smile.

Anyway I am off to eat lunch.

HUGS!

Fame vs. Success

2009-09-25T21:04:00.000-07:00

I went with my mom and some friends to go see Fame with is a remake of the 1980 film. I love the original! Seriously with all my heart it was my theme song growing up. I sang at the top of my lungs to my soundtrack till I was hoarse.

"Remember my name
Fame

I'm gonna live forever
I'm gonna learn how to fly
High

I feel it coming together
People will see me and cry
Fame

I'm gonna make it to heaven
Light up the sky like a flame
Fame

I'm gonna live forever
Baby remember my name "

I was going to be a star, I was going to be somebody someday that was my dream. I could feel the applause and every time I got onstage even just for small parts I felt like it was my home. I was a natural.

So naturally I tried out for Performing Arts (PA) as soon as I could. I remember I did a poem turned monologue from the Book "Falling Up." It was the one 'I cannot go to school today." I was so proud when I got my acceptance letter for the next year. This was going to be the first step before I knew it I would be out of Ohio and being someone finally.

I went through PA and it was a blast. Hard, yes and for many a month I wanted to bash my brains in trying to juggle both regular school and PA. Finally it came to my Senior year and I had to start looking into Colleges. It was a no brainer what I was going to major in. I auditioned at H.U. and I got accepted, and to put the cherry on top as a freshman I got asked to be apart of the traveling show, Shakeperience. I was so honored. I couldn't believe my luck.

College was so much harder to juggle with theatre and a regular course load. I finally burned out halfway through my Sophomore year, and defected back home to get my grades up and go to Otterbein and work on my BFA. I took a semester off to help my family with my grandmother and get my life in order to raise my grades to O.C.'s standards.

On April 7th,2008 while working and trying to earn up some money to go back to school in the summer I got in an accident while taking out the trash and the trash cart ran into the back of my left leg causing damage. I ended up finding out months later that this seemingly simple accident cause me to get and incurable chronic pain and nerve disease called RSD (Reflex Sympathic Dystrophy.)

It has been a year and a half since this all happened, and I am being told over and over that I have no hope of ever living the life I dreamed.

While we were watching the movie, one of the main characters in the remake was singing by herself on a stage. My mom said, "Wow, now that girl has Talent."

It struck a cord in me and caused me to cry. I kept wondering why couldn't that be me up there, pouring my heart out into that song. Why did I have to get hurt and get RSD and be disabled for the rest of my life? It wasn't fair!

I was and still am talented, or so I am told, yet I have to face facts that my body no longer can take the strain of dancing, or running around doing the dramatic things I did in the past.

Does that make me a failure, or unsuccessful?

At the end of the movie one of the characters gave this monologue about success and although I cannot find it word for word I will summarize it.

She pretty much said that Success is not being famous, rich or popular. Success is being able to do what you love and what makes you happy. Success is waking up each morning excited for what the day is going to bring because of the passion that you have for what you do.

You don't have to be a famous actor or famous anything. Just be you! Touch those around you. If you try touching those that you care and love, then your name will live on forever. Your name will live on in every kind word said, in every charitable deed, in a innocent smile to a stranger to brighten their day.

Matthew 5:12 (KJV) "Rejoice, and be exceeding glad: for great [is] your reward in heaven: for so persecuted they the prophets which were before you."

It isn't about being rewarded here on earth. Praise God and let him have the glory. Do these good things in His name but do not brag or bring the attention on yourself. If we allow Him who created the Universe to get the Glory we are humbling ourselves before Him. Our greatest reward will be joining Him in Heaven for forever!

"I'm gonna make it to heaven
My sins disappeared in the flame
Flame

I'm gonna live forever
God I'll follow Your Name"

RSD Update

2009-09-24T15:44:00.000-07:00

I had surgery a week ago today to have my Spinal Cord Stimulator replaced. Since then I have had horrid pain in my left leg, left arm, left side, and my back. It is horrid and it is totally kicks my butt and I am trying to keep my head up.

I have been hanging out with my friends a lot lately and just trying to keep my mind off the pain. Trust me it isn't easy. Just got to go on with life instead of just hiding in a hole somewhere.

I met some great gals at the church I joined bout 2 months ago. I love them as if we have hung out for ever! Tara steals me away a lot and we go on mini adventures. We have been going after she gets off work and getting a room at a crappy hotel and just watching cable the whole night and having a girl night playing games and watching movies.

My friend Darcy is the other gal we hang out with and she has the cutest dog named Zoey. She is a mutt but she is a snuggler to the 10th degree. Me and Tara baby sat Zoey one night when Darcy had to work. It was so nice to finally relax with a dog who doesn't growl at you or lick your face off.

Me and my D&D group decided to start a new campaign within the Star Wars D20 game world. We decided on being Ewoks but the funny part of it is we also decided to be apart of Sith. They have cookies on the dark side! We haven't made our specific characters yet but I am really looking forward to it.

Well that is all I can thing of for now.

Letter to Family and Friends

2009-09-19T19:03:00.000-07:00

I found this and thought it would be nice to share it.

TO THE FAMILY'S AND FRIENDS OF RSD/CHRONIC PAIN PATIENTS

written by Keith Orsini

2005

(For those of you who don't have RSD but suffer from any other form of chronic pain (CP) you could probably substitute your disease everywhere you see the letters RSD in this article and share it with your families as well)

Dear Loved Ones;

The other day a friend of mine asked me if I would share with her loved ones the experience of being an RSD patient; what we go through on a daily basis, the struggles we face, and the importance of medications and therapy in our lives. I thought the best way to do this was to share what a typical day in the life of an RSD patient was like.

I myself have had RSD since 1974, over thirty years now. I also have Degenerative Disc Disease, Failed Back Syndrome, Ulnar Nerve Entrapment, and Fibromyalgia so Chronic Pain (CP) and I are old friends. I first developed RSD when I was 14 years old. Over the last 30+ years I have talked to tens of thousands of RSD and other CP patients of all ages and we all experience pretty much the same things with some minor differences.

As an example for those who do care but are unsure what a typical day is for us, I will try to explain. Please don't take this letter as mean-spirited in any way. I know some of it may be hard to read, to actually see some of the words in print, but it is not an attack. Your loved ones just want their voices heard.

Over the years I have actually had people tell me, "Gee, it must be nice to not have to work and just sit home all day". If I thought they were really interested in a reply to that ridiculous statement I would tell them that having RSD and/or other CP Diseases, however severely you have it, is much more work than any full-time job! Plus, we don’t get to call in sick, get vacation days, and our work day is 24 hours long, 7 days a week!

Now understand that quite a few RSD patients (also known as RSDers) and CP patients have other diseases as well as RSD, such as Fibromyalgia, Spinal Stenosis etc., and that some RSDers have RSD in one limb while for others it is more. Some have less movement while others have quite a bit. Some take only a few medications and some take quite a lot.

I myself have taken over 20 pills a day(not different ones, but altogether). Contrary to some people's opinions taking a pile of medications does not make us ""druggies". A "druggie" is someone who takes drugs for recreation. A pain patient is someone who takes medication because he/she has no choice and who probably cannot fathom someone who takes narcotics for "fun and/or recreation“!

There are patients who use different types of machines, have Spinal Column Stimulators, or Pumps installed in their bodies in an attempt to reduce their pain. Some deal with the wheelchair issue as well. Most patients, the lucky ones at least, also do some form of physical therapy such as swimming, weights, or massage, to help them continue to be able to do the basics things like walking and using their hands, feet, and arms.

First, let‘s start with the sleep patterns, or lack-of-sleep patterns to be more accurate. Unlike "normal" people, CP patients are prone to insomnia and do not reach REM sleep; this is the healing sleep our bodies need each day. We either wake often or are in a drug induced sleep. When we do wake, it is often physically painful to actually get up and out of bed. So, why don't we sleep?

It is because RSD cause changes to the Limbic System of the brain. The limbic system is that part of the brain that controls insomnia, short-term memory, concentration, irritability, ability to find the right word when speaking, and much more.

We start our day with medications of course. The first of many such times per day. To "look fine" we take 10 to 30 or more pills a day for various symptoms. Then there are the side effects of those medications to deal with; upset stomach, drowsiness, diahhrea, constipation, headaches, and many others. Many of us also have to fight the "Dry-Eye Syndrome" and must use eye drops two or more times per day.

Understand that these pills do not take all of the pain away. They just enable us to get up, move around, and have some semblance of a "normal" life. They simply allow us to function.

Then many of us head to Physical Therapy such as pool exercise, range of motion therapy, massage therapy, and even acupuncture. For the patients for whom these things work, they are lifesavers. Like the medications they allow us to function, to be a part of our families, to enjoy part of each day, and for some they actually give us a reason to get up in the morning.

These aren't luxuries but necessities for those of us who can physically handle them. There can be month's, even years, when the allodynia is too high to do even these simple things. (Allodynia is when even the lightest touches or sounds cause extreme pain.) Maybe the person sitting next to you at dinner touches your RSD arm, or your foot gets accidentally kicked at the pew at Church, or your leg gets bumped into at school; all these things seem harmless to the average person and they may not understand how they could ever cause pain to an RSD patient, but trust me, they can and do. Some people can even have a slight breeze cause them excruciating pain.

I know what you are thinking, “that is crazy”. No. That is RSD. If you think it’s crazy, and I am telling you from a knowledge background, think how a patient who knows nothing about the disease feels when they start forgetting things, especially when their pain is high? Or when the slightest touch, even the caress of a loved one, the kiss from a spouse, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain to the patient it will bring tears to their eyes. Think of the confusion and terror that brings into their lives.

And when their friend and loved ones sit there, make fun of them and disbelieve them when they try to explain how it causes pain, well, that hurts them even more. When a disconnected Doctor doesn't believe you that is bad enough but when a loved one doesn't believe you it hurts almost as much as the pain. And let me set the record straight here on the pain, there is no pain like the pain of RSD/CRPS. That isn't just from a patient or an advocate, it is documented. RSD pain is ranked higher than any other form of chronic pain known today.

RSD is ranked on the McGill Pain Index as the MOST PAINFUL FORM OF CHRONIC PAIN THAT EXISTS TODAY!

To put that in perspective, you can visit a page we have on the website that shows some other diseases/conditions and their rankings.

McGILL PAIN INDEX http://www.rsdhope.org/ShowPage.asp?page_id=116

As you can see on the scale, Arthritis pain is ranked about a 18, Cancer pain a 24, Chronic Back Pain a 26, and then RSD/CRPS is ranked a whopping 42! The only thing close to RSD pain is the amputation of a finger and thankfully, that is quick, while RSD pain is 24 hours a day, 7 days a week with no let-up.

Does that bring it home to you?

It is a pain like no other. When people ask me to describe it to them the best I can do is say “Imagine you had RSD in your hand and arm. Empty the blood from your blood vessels in your hand and arm, then refill them with lighter fluid and light them on fire. Keep them lit 24 hours a day, 7 days a week.”

Let that sink in for a moment.

“Now imagine no else can see the flames or will believe that you are in pain no matter what you say”.

That is what RSD feels like.

Whether we patients are walking for therapy, which I assure you is as painful as it is necessary, or doing things that remind us we are alive there is always a price to pay in extra pain directly afterwards, or even the next day or week.

RSD patients are cognizant of that every day. While the average person can sit there and tell us "Go ahead and enjoy the day, you can't let your pain control your life!" What they don't realize is that we are controlling our pain and not the other way around. We control our pain by controlling what we do.

What do I mean by doing things to remind us we are alive? When we spend a few hours tending the garden, spending time with our children, playing with our pets, going to a movie, grocery shopping, running errands, attending a family gathering, or even just going to church. Things that make us feel normal, if only for a few hours.

Unfortunately some people who see you during these "good times" believe that is how you are the entire day. What they don‘t see is the pain you experienced that night and/or the next day because of what you did. Nor do they take into account all the medications you took before or afterwards to be able to do those things nor the fact that you probably had to spend a great deal more time resting afterwards.

The same is true for patients who go to the computer to get support from others with RSD through cyberpals, listservs or websites. Many non-patients do not understand that it is the time we spend there that keeps us going each day . It informs us of new procedures or medications and educates not only ourselves but also our loved ones and sometimes even our Doctors about how to cope/treat RSD.

For most of us it is our lifeline, not our toy. The time we spend on the computer is absolutely necessary to our general well-being for it is there that we can talk with others who truly understand what we deal with every day and every minute.

Many of us have to sneak in a nap in the afternoon to rest our bodies, especially those of us who also struggle with Fibromyalgia. One of the problems this leads to is when our loved ones try to do something nice for us and plan a whole days activities. It is just too much for us. You have to change your whole way of thinking to include doing things in moderation. For many RSD patients that means scheduling things in the morning when we are at our strongest and our pain is at its lowest.

For others, it is much easier to do something in the late morning or early afternoon but typically by early evening we are done for the day. You also have to factor in your physical therapy and Doctor appointments as sometimes these things will wear us out for the entire day.

Another strange symptom that has to be factored in to our daily lives is that many are bothered by vibrations or noise, and for a small percentage, it can actually make the pain skyrocket! A simple ride in the car over a bumpy road can cause a spike in pain.

Due to the noise and vibrations causing me extra pain for instance, there are a lot of things I cannot do, places I cannot go, and again, I am just one example of many out there. These are places most people take for granted and may wonder why we are not there. They may think we are shutting ourselves off by not going, places like my Church, my Masonic Meetings, going out with friends, etc.

If there are a lot of people making noise for example, even if it is simply singing or clapping, it can cause our pain to spike. Visits have to be cut short sometimes due to all the typical regular noise generated or we have to go off to another room. Don't even start on things like thunderstorms, whew!

Imagine saying to your boss, "Sir, I have to go home, the thunder is causing me great pain and the strong wind blowing is hurting me as well." Oh yeah, they would love that. Sorry I can't come to your birthday party because there will be too many people having fun and enjoying themselves and making noise. Yeah, that makes sense, especially to my 10 year old niece. I can only imagine the restrictions parents with kids have to place on their children so as not to hurt their RSD limbs, after all kids will be kids.

I was lucky when I was a teen with RSD because, despite many a day spent wearing dark glasses due to the pain of the bright sunlight or the days when the pain of my RSD made the ordinary things extremely difficult, my friends were always there. So many teens I talk to on our Teen Corner aren’t as lucky. They have schoolmates who take pleasure in pushing them in the hallway to see them fall on their bad leg, or purposefully hit their RSD arm.

Why, even their own siblings hurt them or taunt them about their RSD, as if it is something they have a choice in. Who would choose RSD? Do they think if we just decide to smile it will go away? It would even be a little more understandable if it were just the kids. Unfortunately it isn’t, as many of you personally know.

I have heard so many stories from our teens with RSD/CP whose siblings, Aunts, Uncles, even parents, who tell them they need to "Just get over it, deal with it, move on already". Great advice from the uneducated and seemingly uncaring. Instead of saying things like that, why not read up on the disease, go to the websites like ours, see what the truth is regarding using the limbs, talk with the Doctor about it if you really care that much about their well-being. You don’t know how much it would mean to the patient if you took just an hour here and there to do that.

The bottom line here and the points I have tried to get across are that;

* When you suffer from chronic pain, you have to constantly think about how, whatever you are going to do that day, will affect your disease and your pain level.
* Being in chronic pain is a full-time job.
* One with no vacations, terrible benefits, and no way to quit.
* RSD is the most painful form of chronic pain that exists today.
* Chronic pain affects the entire family, not just the patient.
* Chronic pain is an invisible disability. Even other pain patients will sometimes forget that they cannot see YOUR pain and make assumptions based on what they can visibily see.
* A chronic pain patient may have a good hour or even many good hours a day where they can "appear normal" to everyone else but most don't realize the price that is paid before and after.
* The positive involvement of their loved ones means the world to the chronic pain patient.

I am still surprised at the number of fellow pain patients who forget that not everyone with RSD, and/or other forms of chronic pain, shows outward signs of it ALL the time so it is understandable when our loved ones forget. Never assume you know someone else's whole story at a glance.

Over the past three decades plus with this disease, I have spent a few years being stuck in bed unable to walk, I spent over a year being confined to a wheelchair and having to learn how to walk again. That was the second time in my life I have had to do that, despite being told by Drs that I may not ever be able to walk again. Good thing I am stubborn.

I remember one year where the only time I was able to leave my room was to go to physical therapy five days a week. I have spent many years having to use a cane to go even ten feet and despite this, I still have people who don't know anything about my past struggles, even some who are fellow RSD patients, email me and tell me I have no idea what it is like to be stuck in a chair or be unable to walk! That I don't have it as tough as they do.

I am blessed in that currently,(2005) I am doing better than many other years. That doesn't mean I am "cured". I take my 15 pills a day. I have to do my physical therapy every day. I have to walk every day. Nearly every afternoon is spent having to lie down because of exhaustion, partly due to the RSD and partly due to the Fibromyalgia, in combination with the medications. But I am not complaining. I have been much worse in my life and I never forget it for a minute.

But NEVER compare your pain to someone else's. It is a lose-lose situation. It hurts you both. Instead encourage one another and support your fellow pain patients! We all deal with pain in different ways and we all have different levels of tolerance.

Our medications, our therapies, and our friends are what get us through each day. The value of none of these things can be minimalized. Not just for the physiological changes that they bring to our body but for the psychological ones as well. That doesn't mean our lives end, they just change. And RSD/CRPS patients require tools to make those changes possible. Tools that include medication, various therapies, exercise, diet changes, and lots of familial support. You can be a positive part of it or you can be a hindrance, it is totally up to you.

Now some may view this as being obsessed with the disease, that we think of nothing else but our disease, our pain, that we are too focused on it and that is why we are so depressed, so sad, we hurt so much. Gee, you mean if I didn’t think about it so much I wouldn’t hurt so much? Hmm, let me give that a try. No, seriously, the fact is that for us, RSD/CP is a major part of our life. It has to be factored into every decision we make, if it isn't we will pay for it later, as will our loved ones.

My family and I often worry that our friends will get tired of our talking about CP too often. After all, not only have I had it for years but most of our family is involved in running this organization and getting the word out about this disease. Many times we have to force ourselves to take a break from RSD talk for a day.

But then we think it is no different than if we had cancer, MS, or MD, (which some of us have). People are just used to hearing those words more. Yes, we will lose friends along the way, that is inevitable But we will also gain some new wonderfully supportive friends and they will be amazing, true friends who will be in it for the long haul.

I cannot tell you all the incredible people from all over the world I have met in our journey, with whom I have become fast friends. Some I see often and some I see only at our National Conferences on Pain yet it is as if I saw them just yesterday; many I talk to only on-line and I know them best of all. These are amazing people who have overcome obstacles you wouldn’t believe and yet still come out on top. And you know what? They could care less that I have RSD.

So now that YOU know what it is all about ... which type of friend are you?

I hope this has helped you better understand a day in the life of an RSD/CRPS patient and that you didn't take it as a slap in the face or something hurled at you but as a teaching tool. Sometimes we have to be forced to confront things in our lives in a harsh manner in order to accept that they are real; both the patient and the loved one in the case of the chronic pain patient. Thanks for listening.

Peace, Keith Orsini
American RSDHope

On behalf of Chronic Pain patients everywhere, thank you for taking the time to read this.

It means a great deal to them that you would take the time to do this and just because they asked you to read this does not always mean they feel they have a problem with you necessarily, they just wanted you to have a better idea about what they have to deal with. They NEED you in their life; they WANT you beside them in this struggle. They know they can do it; they can beat this with YOUR help.
PS: For more information on Chronic Pain, please visit AMERICAN RSDHOPE This link leads to a website that is not part of RSDHope

copyright March/2005-2008

Please feel free to share this article with others, we just ask that you respect and include the copyright and author information.

Post Surgery

2009-09-18T09:30:00.000-07:00

So I had surgery yesterday and got a Spinal Cord Stimulator Battery Replacement. It all went like a blur. I got in there and they took me back and got me prepped and not but 30 mins later they were taking me off for pre-op. They put me totally under and I don't remember a lot about them putting me under. They actually put a breathing tube down my throat so that kinda stunk. My throat is raw now but I am trying to be positive.It went really fast and I ended up going home. I had some great friends come over and see me but I barley remember what was said. I turned on my stim today and it works ok so far.

My Back is really hurts and I am trying not to move to awful much. I am glad it is done but this is the time I hate the most....recovery.

Anywho I am going back to bed!!

Short Update

2009-09-15T16:12:00.000-07:00

I haven't really been writing lately. I been rather busy and trying to live my life. I have surgery on Thursday. I am nervous but I know everything will go well.
Anyway just wanted to pop on here and update a bit.

Late Update

2009-07-27T18:20:00.001-07:00

I haven't updated in a while. I have been really busy lately. I still haven't found out when I am gonna get surgery. I have been real busy lately. I started playing d20 Modern with a group of my friends this past week and I am really enjoying it. I am planning on going to the zoo with my friend Gordon on Wednesday with his church group. My big sissy Flora's roomie Leo came through town this weekend, and he and his friend Rich went out to dinner with me. We had a lot of fun just hanging and talking. I love my friends, I am glad that people aren't scared away by the lack of things I am able to do and are willing to work around my pain.
The last few weeks have been rough. I have/had the stomach/24 hour fluish type thing on and off. I have been on T180 a little less lately but it is still my main form of entertainment. I got shortlisted an got a tshirt.
I want to go on vacation to Iowa. I have a friend that way and I miss her with all my heart. I also got another ghost hunt this weekend @ the Opera House. We have a book dealio coming to shadow us while we investigate. This is like the 10th time I have investigated this place. We now control all the tours and investigations that happen there and we give the Opera House the profits so that they can update the place and make it look better. It was built back in 1903 but the history of the area tells us there used to be a hotel there that burned down. There was a tunnel that ran under the town, they say it was because of the common belief that Yellow Fever couldn't be spread underground. The whole area has interesting paranormal things going on inside but the main part that is haunted is the basement which is most likely the original basement of the hotel. The whole town is beautiful and they have a little Inn down the road that I am in love with.
Anyway I have to go relax! HUGS!!

Bone Scan and Dates

2009-07-17T14:17:00.000-07:00

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

2009-07-06T19:50:00.000-07:00

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

2009-06-27T13:32:00.000-07:00

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!!

2009-06-21T14:35:00.000-07:00

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

2009-06-19T16:04:00.000-07:00

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!!!

2009-06-17T19:46:00.000-07:00

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!

2009-06-16T16:05:00.000-07:00

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!

Update!

2009-06-15T18:20:00.000-07:00

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.

My Horrid Hospital Stay

2009-06-11T11:59:00.001-07:00

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!

This site is Awesome!

2009-06-03T17:13:00.000-07:00

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

My Life on CRaPS

2009-06-02T21:55:00.001-07:00

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.

Hey all

2009-05-24T16:11:00.000-07:00

Things are really rough right now. Mom went into the hospital. She has 3 ribs broken. It is really rough.....my leg has been bad. I lost a few of my friends the last few weeks because of my RSD. So they say. I am tired of life and thinking of staying away from other people for a while.

Here is some more of the story

2009-05-20T19:00:00.000-07:00

You never quite know what you have until it is gone.
It was yet another dull day in the small town of Eve, Ohio. I walked down the dusty road to school, wondering how I couldn’t bypass the headmistress outside the gate and sneak off into the woods to entertain my time daydreaming. I knew thought if my mother heard that I skipped school again, that I would never hear the end of it.
“Daphenie,” I heard screamed in my general direction before I could even make a feeble attempt to go into the woods. “Drats,” I thought to myself as I gathered all the strength not to charge head-on into the woods. It was too late, Headmistress Cole already saw me, if I ran now I would be disowned or sent to government school. I couldn’t think which was worse; I was weighing the latter as the worst when I heard my name yelled again. I walked slowly towards the gate, keeping my mouth pressed together in attempt to not say anything stupid as I passed through the gate.
I sat down at my desk, my other classmates staring at me. Why was I the only rebel in the whole state of Ohio? Hadn’t any of my peers wanted to just run away, not listen to what the teacher taught us? Apparently not since the stares that my peers gave turned to scoffs and then to disappointment as our teacher Ms. Windsor snapped everyone to attention and started class.
“Open your text books to page 184 and follow along as I read,” she said in her low gruff voice. I always imagined Ms. Windsor would be a really good dungeon torturer, no prisoner would be safe from her wrath. Also if the torture didn’t work she could bore your brain into a pulpy mush, maybe which would be a better, to die of boredom then die or the hands of someone else. I tried to pry my mind from morbid thoughts and concentrate on the lesson in front of me. Today’s lesson was on how the great war of Tyranny was fought.
The great war of Tyranny was a war against anything and everything that went against the Book. This Book was passed down from father to son till it became the basis’ of our country today. It caused many a war, because its content isn’t the same for all. As my grandmother used to tell me that the contents of the Book are translated differently to different people. I always wondered about this. Ms. Windsor’s voice broke through my daydreaming. She was now talking about the day they outlawed color. Now mind you I have never seen color before but I was always told that it wasn’t a thing to be played with. It corrupted the mind and damned the soul for all of eternity. There were armies of people who fought to keep color legal, but the government was too big and soon overtook them. Art museums were torn down, theatres burned; whole sections of towns and their population came up missing almost overnight. The government said that they were threatening the wholesomeness of our fair country. People who stood by the idea of color soon became a myth, kind of like Unicorns. Ms. Windsor insists that the government just asked the people to move to a different place, but I don’t know.
I must of fallen asleep or was far gone in my daydreaming because before I knew it the last school bell rang. Had I gone through school like a zombie all day?
I pushed all of my stuff into my backpack and started down the corridor to the front gate. The Headmistress stared me down as I walked out of the gate. The old bird needed a new hobby other than making sure I wasn’t making trouble. I walked down the lane the colorless decaying trees around me put a spark of foreboding in the air. I walked past and the trees seemed to have shadows moving among them. I quickened my pace just a bit, afraid of what I might find if I stayed in this area too long.

I was almost to the bridge when I saw something in my path. It was a piece of fabric but its tone was something I had never seen before. It was almost Angelic in quality and hopeful in style. It made my eyes dance as I looked down at it. It was mesmerizing the greatest thing, seriously since I first was born. I bent down to grab the fabric. The fabric was inches from my grasp when I heard a rumble from far behind me. I grabbed the piece of fabric quickly and stuffed it tight into my grip, and turned around expecting to see the headmistress had followed me to give me a scolding again. Instead in the distance there was a dark man. Angry and brooding he seemed to double in size as he came toward me. I froze not really knowing what to do. He came closer and closer and yet my body was refusing to move. Everything inside of me was yelling “Move!” but my body had gone deaf at that time. I closed my eyes praying this was only one of my daydreams. I was about to open them to prove that it was just a dream when a small firm hand grabbed my arm pulling me in the opposite direction then the man. The grab was so startling that it caused me to drop the cloth from my grip and my gaze centered on who grabbed me. A girl, who had to be a year or two older than me was motioning for me to follow her. Not just follow her to run, but why? I ran a dozen feet or so towards her then looked back. The man was closer now, I could see clearly now that he was carrying what looked like flashlight. It would have looked like a normal flashlight but this one was emitting a dark mist. The mist made the man even more terrifying as he took it out and shone the light onto the fabric far in front of me and the mist seeped out and overcame the cloth causing it to disappear before my very eyes. The girl tugged at me again, but before I ran too far I noticed the man’s whole body was emitting the mist. The pit of my stomach turned and I snapped around and ran almost passing the girl. I ran until my legs hurt and I ran some more too afraid to turn around to find the Dark Man still following me, his dark mist ready to engulf me no questions asked.

I was running so fast and so far that I didn’t notice where I was going. Soon the scenery became odd and not familiar. The girl was a stride or two in front of me but I could not seem to take my eyes off the way is shined and bounced in the sunlight. Her hair was something I had not seen before. Like the fabric, her hair seemed to be glowing as if it was on fire. Yet it had a different quality, something that our fire didn’t have. The light that bounced off her hair was exactly like the embers and sparks that would leap off of the wood in my hearth at home.

I followed her still mesmerized by her strands that I didn’t notice she had stopped. I looked around; there wasn’t anything out of the ordinary. The dull boring scenery was almost like the forest by school. The more I stared at the scenery around me the more I noticed something was a little off. Unlike the trees the girl and I had been running through the trees directly in front of us were not moving. The girl calmly walked forward 5 large strides and knocked 3 times on a tree trunk. The sound her knock made was hollow and not what I expected to here coming from the huge tree trunk. The ground below us shook slightly and from one side of the tree trunk a door opened and the girl stepped and she ushered for me to follow her. The inside of the trunk was hollow and there was a spiral stair case. The girl was a ways ahead of me before I stepped foot into the trunk. As I followed down the mood of my surroundings shifted from dull and blank to something else that I couldn’t quite describe in words. The girl stood at the bottom of the stairs with the widest grin and her hands on her hips. Her smile was blinding but I didn’t mind she had just saved my life and now I was beginning to believe I was in heaven. There were rows and rows of tents, unlike I had ever seen, some glowed, some seemed to shine, and all of them were a sight to be seen. The girl pulled me forward and a man completely dressed from head to toe in the fabric from the road came boldly out of the tent directly in front of us..

Beginning of my story I am writing

2009-05-11T19:59:00.000-07:00

Pain Pain Go Away!

2009-05-10T16:24:00.000-07:00

I guess my RSD knows that it is RSD Awareness month. Reflex sympathetic dystrophy (RSD), also called complex regional pain syndrome (CRPS), is a chronic, painful, and progressive neurological condition that affects the skin, muscles, joints, and bones. The syndrome usually develops in an injured limb, such as a broken leg, or following surgery. However, many cases of RSD involve only a minor injury, such as a sprain. And in some cases, no precipitating event can be identified. RSD/CRPS is characterized by various degrees of burning pain, excessive sweating, swelling, and sensitivity to touch. Pain may begin in one area or limb and then spread to other limbs. In some cases, symptoms of RSD/CRPS diminish for a period of time and then reappear with a new injury. It is estimated that as many as 8 million suffer from RSD in the USA alone, that is 8 million people without a cure. Find a cure. Give Hope!! Today is still an awful pain day. Both my leg and my surgery site is killing me. I am frustrated with my RSD it just doesn't quit, it doesn't sleep, and when it comes to me sleeping. HA! That is funny....no sleep lately. The Parents and I are planning to go away to get my mind off pain. No where special just middle of no where. We are taking the dogs too! Woohoo my pup is really happy this will be a first for her. Oh I only imagine how dirty she will get. lol Yea idk when we are going though but things are looking good! I will put up pictures, the dogs are getting pictures taken while we are down there. Well I am gonna head out and try to relax. Hugs!!!

New Update

2009-05-08T18:12:00.001-07:00

I haven't updated in a while. I had my first hearing on Monday. It lasted all of 30 seconds! We won and I got an extra allowance to my workman's compensation claim. The Parents and the Dogs and I are planning a mini vacation soon here in the few weeks ahead. The dogs are siked because this will be a first for them. We are gonna get their pictures taken while we are there! ............ My leg is really bad lately and mom is trying to get me out as much as possible. I am going to be stuck at home more because do to lack of funds Grandma is coming home from the nursing home. We are gonna make it work out some how. A friend of ours who works at the nursing home is going to help us take kare fo grandma and I am gonna babysit her kids. It is a easy gig, but still going to be a hurdle to jump. Anyway I am gonna add some pictures I did these past few weeks.

My Story

2009-04-21T16:09:00.000-07:00

I would do anything

2009-04-16T20:43:00.000-07:00

It is soooo hard sometimes to keep my mind off my RSD. I been on www.take180.com a lot......most days not getting off till late...it keeps my mind off the horrid swelling. My year with RSD is horrid but I remind myself how good I got it. So many people I've met with RSD are in worst shape then me. So it keeps my mind in the right place. I am gonna go to bed, NIGHT!

Drawings

2009-04-09T17:16:00.000-07:00

One year update

2009-04-07T11:07:00.000-07:00

SO I didn't feel like writing for the last few months and stil don't, but I thought i would update. Today is my one year anniversary of my injury. I am sad but I am working on living not giving up. It is a tough job but anyway i gtg hugs all!

Week 18 Day 3

2008-07-23T17:20:00.000-07:00

Pain is horrible. Pain is awful. When can pain just go away? So....today I went to get 2 MRI's to see if there is any form of surgical option. RSD is the suckiest of suck and I just wish I could just be normal. To be able to act again would be my biggest dream. Right now the thing I keep telling myself is just make it through the day, you can do it Christa, I know you are in pain but it could be worse. Well today was the worst of them all! This is a tough thing for an almost 21 year old to go through. Living my life from one set of pain pills to another. Always looking at the clock counting 6 hours from the last time I took them. It almost feels stupid. I feel very alone, it helps that my mom takes me out places, yet it is a very very lonely world. I am getting a reward soon. I have been seeing this guy named Josh that I met at my old college. He has been there for me, even though I have been half out of my mind. He is coming to visit me this weekend. He is working so hard to make up the time so he can come to visit me. It gives me relief to know that he is going to come to visit me. To be able to hug someone who is not my family. Someone who cares for me so much that he is working himself to the bone to come visit me.
The MRI I had today was awful! I think well I hope that I never have to feel that kind of pain again. I was seeing stars. Right now it is over 2 hours since I came home and I am still in major pain, I have even taken my pills. I am due to take my lidocain, a new little diddy that my pain doctor gave me. It makes my skin numb but it still doesn't stop all the pain. I am just excited for this weekend! Anyway I gotta go pass out now and maybe watch some TV, and eat Gummi Frogs!

Week 17

2008-07-13T20:46:00.001-07:00

As of 9:45 am 7-14-08 it will mark 17 weeks that I have been hurt. It is offical the RSD is effecting my bone in my ankle/foot/ leg region. I have yet to see any money from anyone. Bill collectors are almost at my door and I am beyond scared. Not only because of that but because of the quality of life I will have. I most likely will have RSD for the rest of my life. My new orthopedic surgeon is getting me 2 more MRI's, he thinks that their may be a chance of surgery. I would love that because that means I could maybe become better again. My finacial situation i not very good. I have a broken wheelchair and my mental health is dwindling as people keep telling me I don't have a prayer. I am sick of that, that more and more people don't just help me get control of my life again. I desperately need a wheelchair that works. It is hard for me to crutch long distances. At this point I am prayin for someone to bless me. Anyway I am out, I need to force myself to sleep.

Innocent for Years

2008-07-07T21:00:00.000-07:00

I have been so untouched by problems.
I did have PTC (http://www.pseudotumorcerebri.com/) in middle school but really that is something I have dealt with and live with to this day with very little problem. This whole RSD thing has really thrown me. I just feel so alone in how I feel. My pain is getting worse and my ankle is swelling up like a balloon, no joke! It scares me and I don not know if I can live the rest of my life not being able to be normal. I really am getting hard on myself because I feel like jello and I am literally becoming it. I don't like feeling sorry for myself but I can't help but be because of what happens to me. I have had 2 things in my life that people never heard of and also people rarely get. I feel like I am this homing beacon to rare diseases. What will I get now? LOL Seriously I just am tired of the pain of the not being able to sleep....of the not being able to go to friends' weddings,
Anyway I got to get out of here!
Hugs
Kissa

Happy 4th......errrr ummm yeah

2008-07-04T21:42:00.000-07:00

So my 4th was kind of anti-climaxtic. I went to a place called Der Dutchman and had lunch with the folks and my grandmother. It was fun and my mom bought me a new purse.....VERA BRADLEY!!! It was on sale but idk if she was really telling the truth or not lol....anyway it was fun just being able to hang with my fam on the 4th. My leg really hurt me today but I was determined to get out of this boot so bout dinner time today, mom and I ran (crutched) around town lookin for some sort of shoe that i could wear that wouldn't bother my RSD too much. We went to Wally World (Walmart), Nordstom, thought bout going to Macy's but ended up at Dick's Sporting Goods. I hopped back to the proper section and plopped down and started pointin' out shoes to my mom....i looked at mostly the adias sandles. You know the ones with the singluar strap in the front. I also tried on a number of different types of Crocs. I found some that were interesting but weren't quite right. It was fun pointing out the shoes but my poor mother hated it. I am so sorry that I am putting such a burden on her. I can't do hardly anything anymore. Can I please go back to being self supporting again? Anywho enough sidetracks, I ended up getting the Adias I can't really walk without my crutches so it is hard.....I am probably going to stick to the boot for a majority of the time when I am walking. After that we went home and sat down and watched my FAVORITE SHOW---------> Randy Jackson's America's Best Dance Crew 2. OMgoodness my favorite crew has to be Fanny Pack hands down they have good ideas and they are so on target. I also like a couple of the other groups like Supreme Soul and A.S.S.I.D both which have shown they are more then just competitors they are contenders. It has become one of my guilty pleasures the last couple weeks.
Another thing that has happened since I last wrote on here.....the guy I am seeing and I are talking again. He is one of my best friends hands down, I love him so much and I hope to see him soon. To hug him tight and not let him go.
I actually got to see fireworks today!!! I was going to go to my town's fireworks but my foot hurt too much and I was afraid to go because of the walking. But instead I stayed home kind of sorry for myself. Well I was on my comp talking to a friend and all the sudden --BANG BANG BANG BANG i jumped up on my good leg and hopped to the window in my mom's room and out across the way above the trees behind our house was the fireworks I so longed to see. I haven't been home for 6 years for the 4Th so being able to feel the trill of having fire and the works so close to you is great! I ended up sitting in my moms chair with my phone out taping it all.

I pray that no matter what you do you don't regret it. Live your life so that when your old and your grand kids sit before you and ask you if your life had any regrets you will be able to say "No child, I don't regret a day."
Have a safe holiday and hug a loved one today!
Hugs and Kisses!
Kissa Fisha
aka Christa

Rsd One Problem I never wanted...

2008-07-03T20:00:00.000-07:00

I have RSD....What is RSD or also know as CPRS?
According to www.rsds.org ~>
Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy, is a chronic neurological syndrome characterized by:
severe burning pain
pathological changes in bone and skin
excessive sweating
tissue swelling
extreme sensitivity to touch
As of this Monday it was week 14.
So pretty much life has been horrible. I am trying my hardest to keep my head up.
I go to a new orthopedic surgeon on Wednesday and we are hoping that he will tell us something different. I am seeing one of the best pain docs in the country also but it just seems to not be going fast enough. All my life I worked so hard to be normal. I fought through my PTC (Psedo Tumor Cerbri) when I was in 7th grade. Haven't I had enough of illnesses and crapola in my life. One thing I do want to do is to try to not complain too awful much on here. Life with RSD going on the 15th week may be hard, but I must remember that life is still worth living. I am going to work hard to show females that your life is not over once you get RSD. I am 20 going on 21 in 4 and a half months now. I am trying to be as normal as y body allows me to be.
I started Physical Therpy a couple weeks ago and my trainer er....person thingy is a woot. Her name is Jenn, then there is Lindy also who I have a blast with. They have been challenging me to do more and more. I am still stuck in the boot that I started in because I can't walk without pain and I can't control my muscles hardly at all. All I have been wanting is to get rid of this old stinky boot. Life with RSD is not fun. One thing I would like to do is meet someone that also has RSD and pick their brain for a bit. How in the world can you get through a day without dying from the pain. Do they recommend Sympathic Nerve Blocks or Nerve Cauterazation. I am going to be truthful I do not want to hurt the rest of my life. It scares the willies, the hebbie jeebies, and he crap staight out of me. Who wouldn't the pain feels like ur foot turned into a little pregnate woman trying to give birth while being set on fire. Scary to think but that is life. I am tryin' to celebrate the small things.

Well this is my Life for now....it may be rough...but hey atleast I am alive!

Kissa da Fighting Fish
aka Christa