Tuesday, April 21, 2009

My cancer bubble...

So, I got an email today from an old friend in Richmond. Kristen and I were friends during and after high school, then eventually drifted apart as I moved to DC, then eventually Chicago. Thankfully, through this amazing technology called facebook (grin) we reconnected. I got an email from her today and was really inspired. Thus, the title of my blog. I am going to paste Kristen's message to me (with her permission of course). But first, I want to say a couple of things. We all have our passions. The majority of my blogs are about cancer because it is what I know and it is my passion. Sometimes I get SOOOO caught up in MY passion, that I may lose sight of the struggles others go through. Not intentionally of course, but the majority of my friends have been touched by cancer in one way or another and we tend to focus on what we are familiar with. Kristen's message really touched me.

She is an amazingly strong woman who is dealing with a horrible disease that I never even knew existed. Sad, but true. Right now, there is no known cure! I hope you find hope and inspiration in her message, I know I certainly did. Those in the cancer community can certainly relate to the loneliness, spinal taps, doctors, etc.. I hope you enjoy the change of pace and I think I will try to keep this a regular thing so I don't get lost in my cancer bubble. Kristen is truly an inspiration and I am so happy and proud to call her a friend.

Well it's that time again, the time to raise funds and to create awareness for RSD has creeped up on us. We are super excited about participating in the 2009 RSDSA Walk through Central Park on June 28th. Last year manyof us had to roll through the park for part or all of the event, but at least we were there and dedicated to the cause. I was able to walk part of it and ride for the other part. We'll see what this year brings us, I'd love to walk the entire thing!! We had the oppertunity to meet some wonderful fellow RSD'ers last year, as well as meet face to face with some friends made online. We had a wonderful weekend together and had such a rewarding experience completing the walk. We are looking forward to all of the wonderfully generous support in which we had last year, as well as educating more people and increasing our fundraising goal.

Those of you who know me well, know what kind of battle comes along with RSD, but some of you are probably not sure what exactly it is. To many of you, I look like I am healthy and am not disabled, however on the inside I'm feeling and living something completely different. RSD is a debilitating chronic pain disease which is typically brought on by some kind of trauma to the body. After the trauma heals, the body is left with extreme pain, discoloration, swelling, immobility, just to name a few of the symptoms. My ordeal started in 2000 with a work related car accident, in which I herniated a disc and required 2 major back surgeries. The 2nd surgery solved my back issues, however I developed a post operative DVT(blood clot) in my leg and had to be hospitalized for 30 days and then multiple times following, for a clot in the lung, and other complication which come with RSD. After my clot disolved I was left with excruciating pain in my leg and after numerous tests, it was determined that I indeed have RSD.

To this point there is no ultimate cure for RSD, however there are numerous treatment methods which work for everyone in a different manner. I have tried every possible medication, had over 40 epidural blocks and stellate ganglion blocks, Physical Therapy, desensitization, implanted dilaudid pump trial, spinal cord stimulator trial, ketamine infusion, numerous long and lonely hospital stays, and have yet to find the magic combination to make the pain bearable for me. I have been all over the country to different specialists and have received the same opinion and suggestions from everyone, but RSD is just such a hard disease to treat, that there are NO guarentees with anything. We thought we were on track at MCV/VCU last year when they tried dong Ketamine infusions. Ketamine is a very dangerous and toxic drug but if and when it is administered properly it can do wonderful things. It is often known as "Special K" or the "Date Rape Drug" on the streets. I came home on the infusion with around the clock nursing care and was getting excellent pain relief, as well as many of the other symptoms were gradually subsiding. The Dr's were so excited as were we, I was like the old "Kristen" who many people have forgotten about and I was back!!!! Unfortunately, I had an adverse reaction to it and went into respiratory/cardiac arrest and Chris had to do CPR until EMS came. Thank God he happened to be home, and was courageous enough to take action or I wouldn't be here to tell my story. I'm truly grateful to him. After process of elimination, it was determinned by a team of physicans that it indeed was most likely the Ketamine and therefore it is no longer an option for my treatment. It was quite disappointing since that was the only thing that gave me signifigant relief. So we are awaiting a trial machine called the Scrambler which is coming from Italy to my treating hospital, and I have been chosen as number 1 on the list to try this treatment. The Dr's seem very optimistic and we are very excited as well, it's just a matter of waiting for the thing to actually get here! Medical time is very different then the average persons time!!

In this whole process, many things have happened to me and my family as with any other serious disease, but they have all stuck by my side. I have made some of the very best friends because of them having RSD as well. I do my best to educate everyone around me, as well as all of the medical staff in all of the facilities I have been in over the years. The only way to raise awareness and ultimately find a cure is to be vocal and talk about the condition, not hide from it. I carry literature with me everywhere I go, you never know when you may run into someone who is interested or questioning what you are gong through.! I try to share my resources with newbies as well as others who maybe have hidden from the disease until it took over their lives, whatever the situation I'm willing to help anyone in any way that I can becasue I have been down almost every road possible!

I will be selling RSD t-shirts, hats, keychains, and bracelets at the walk but also online for anyone who is interested. All of the proceeds will go directly to RSDSA, it's the least I can do for an organization who is fighting for a cure. Please contact me if you are interested in any of the items, they will be coming out in May. shores324@gmail.com is the best.

We all have the organizations that are near and dear to hearts which we donate to, but I hope you will be able to share with us this year and make any donation possible. Every little bit helps and is greatly appreciated. So please take a few minutes to make a very simple donation via this site, or if you'd rather send a check to me that is wonderful as well. Just keep me posted!! I look forward to hearing from you all and meeting my fundraising goal with your help.

Thank you,

Kristen and Chris, Gab and Mike

So Kristen... thank you for sharing your story and being such a vocal advocate. You are certainly making a difference in people's lives and for that I am grateful. If anyone wants to check out her page, you can do so here www.firstgiving.com/kristenshores

Thanks for taking the time to read. LiveSTRONG, Be Well, and Keep Climbing!


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  1. Joe, thanks for posting. Kristen, you have been through HELL and back. Keep livingstrong, you seem to have such a great attitude and an amazing support system

  2. Thank you for posting this Joe. I have RSD and am involved with many RSD support groups on facebook/myspace and even made my own. Thank you for always looking for incredibly causes. They finally figured out that it was RSD during my second fight with cancer. I would LOVE to talk to her-send her my email or something and we talk about what treatments we have been through. I found some new treatmetns that are not FDA approved that I used that DID seem to help!

    Thank you SO MUCH for posting this!!