Kissa da Fighting Fish

A good friend of mine sent this to me on a really horrid day this week. I sat there at cried through the whole thing. It hit me in places that I never knew I had. I am a wide eyed naive child in the eyes of the world. I tend to trust people a lot more than I should I try to open my hands and open my heart and let everyone in that I can fit. Then wonder why I get hurt so often. This tends to make me pull back into myself. Pull inside and brood and grump. Lately I have been like this. Just pulling inside not allowing anyone in, sometimes not even my husband. Just complaining and allowing whatever is going on eat at me. Why ruin the wonderful person I am? Why ruin the outlook I have? Why not allow the pain of life and everything else to teach me instead of hurting me. I collapse into this continual circle of self doubt, and self pity. Thinking that I am this horrible screw up and that my life doesn't make a difference. The problem with this thinking is who does this hurt? Not only myself...but each and every person that I touch.
I have to stop trying to muddle through only giving 50%.....I need to focus on how to make my 100% healthier and more productive and help make my world and those around me better.

I am continually reminded how very important is. A couple weeks ago I stopped talking to some of the people I lean on most. Not because I didn't care about them it was because I became too busy. This is where I went wrong. I forget when I get busy that I still need support as well. Support is like air for those of us who have been through traumatic diseases/situations like RSD/CRPS. The longer I wasn't near my support the more and more I became bitter and began to mope. I even went as far as to start assuming things about the very people who supported me the most. Moral of the story. Stick to getting support!

I haven't been writing here and that is a shame. I won't make excuses because it should have been done a long time ago. Been working with a new family. One boy (4) and two twin girls (2). They have tested both my limits emotionally and physically, but they have tested my RSD as well. I do care greatly for them but sometimes it is hard. I have been doing a lot with RSD/CRPS Doesn't Own Me. We started making awareness posters for RSD/CRPS and Chronic Pain. 140 Million people suffer from Chronic Pain in the United States and that is WAY too much! There are more people suffering from RSD/CRPS than that of MS, HIV/AIDS, and Breast Cancer in the United States combined. That is insane. No one should have this disease or suffer in this fashion. It isn't right so to get the awareness out there in hopes that someone who has the key sees it and starts caring enough to do something about it. I thought I would post some of my favorites.

This one really shows the way RSD/CRPS feels inside. A Raging fire encased in cold hard unforgiving ice.

This one hits me in the heart everytime. There has been children as young as 2 being diagnosed with this disease.

One person suffering with Chronic Pain is too much!

Our Volunteer Karen made this one! She is awesome and is a great friend!

Chose this one because we thought it looked like the hand was reaching out for help.

It is truly sad that the medical world knows little to nothing or doesn't care to educate themselves more on RSD/CRPS

These are my legs. When I flare my right leg mirrors the left pain wise and you truly cannot tell them apart. But looks aren't everything. Pain is still pain and I still want a cure.

This quote came from a video I did about a year ago. I have used this vision in the past but it was nice to put it on a picture.

So many judge us on our outward appearance. "Oh she is so young there could in no way shape or form be anything wrong with her." Yet the sad thing there is something wrong and I am suffering inside. Please don't judge?

This was the hardest to make I have lost a bunch of my RSD friends to suicide because they just couldn't take it anymore. They call it the "Suicide" disease for a reason. There is no way out, no treatments, that truly work for everyone.

I believe Support is the most important thing in the world.

This was our most popular.

People do not believe when we say that it is really bad. It is high than childbirth, cancer, and getting a limb cut off.

Needless to say these all are heart breaking in their own way. Please educate those around you of this disease. There are so many suffering and so many more going each day undiagnosed and alone. Please I beg of you don't allow others to suffer alone! Christa W. Founder of RSD/CRPS Doesn't Own Me

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!

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^^^^^^^^^

Holding Riley and loving on her.

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 ^^^^^^^^^^^^^^

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!