Sunday, December 27, 2009

Christmas Bells

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!

Monday, December 21, 2009

Love is in the Air!

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!

Sunday, December 6, 2009


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

Tuesday, December 1, 2009

Belated Birthday Party



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!

Wednesday, November 25, 2009

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.

Saturday, November 21, 2009

Almost My Birthday!

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!

Friday, November 20, 2009

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.

Wednesday, November 18, 2009

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.

Monday, November 16, 2009

RSD makes me Sick!

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

Friday, November 13, 2009

RSD Awareness Merch!

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

Wednesday, November 4, 2009

RSD Awareness Month

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!

Tuesday, October 27, 2009

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!

Thursday, October 8, 2009

I made this Yesterday

Friday, October 2, 2009

New Meds.

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!

Friday, September 25, 2009

Fame vs. Success

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"

Thursday, September 24, 2009

RSD Update

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.

Saturday, September 19, 2009

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.

Friday, September 18, 2009

Post Surgery

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!!

Tuesday, September 15, 2009

Short Update

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.

Monday, July 27, 2009

Late Update

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!!

Friday, July 17, 2009

Bone Scan and Dates

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

Monday, July 6, 2009

RSD Sucks Eggs lol

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

Saturday, June 27, 2009

An Open Letter to Our Family & Friends

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


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

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

Sunday, June 21, 2009

Hope is Important!!

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

Friday, June 19, 2009

Quik Update

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

Wednesday, June 17, 2009

Stupendous News!!!

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

Tuesday, June 16, 2009

Boo Ya!

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

Monday, June 15, 2009

Update!

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

Thursday, June 11, 2009

My Horrid Hospital Stay

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

Wednesday, June 3, 2009

This site is Awesome!

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

Tuesday, June 2, 2009

My Life on CRaPS


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

Sunday, May 24, 2009

Hey all

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.

Wednesday, May 20, 2009

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..

Monday, May 11, 2009

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.

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