By RSDSA Board Member, Bob Lane
RSDSA welcomes board member Bob Lane to TheTuesdayBurn. Mr. Lane has been a CRPS caregiver, a support group facilitator, a foundation leader, and now an RSDSA Board Member. See CRPS through his eyes in all different perspectives.
I would have never thought that I would be writing a blog about CRPS. For those of us in the CRPS community, everyone has a story. This is my story…
Where do I begin? As a former caregiver for someone who experienced full body CRPS, a Board Member of RSDSA, or as a CRPS support group founder and leader? As you will see, there is an obvious progression to this time-line.
Caregiver
My wife, Maria, was diagnosed with RSD/CRPS, almost 8 years ago now, after a simple toe surgery. I was actually working in the healthcare industry, at the time, in post-operative pain management as a medical device representative. Based on what I knew and the relationships that I had established in the medical community, I was confident that we could manage her CRPS and get ahead of things. After all, I knew all the top surgeons and pain specialists in the area.
I was wrong. I found out quickly that this condition doesn’t really care who you are or who you know.
At the time, we tried every treatment available and even considered flying to Germany for a ketamine coma, before they were banned. All of these treatments offered no relief and only added medication side effects as additional complication. Eventually, Maria developed full body CRPS, an uncommon progression of CRPS. My goal at the time was to continue to offer hope to my wife. Severe depression was becoming very obvious. The constant pain and social isolation only contributed to her depression. Nobody, including family and friends, understood. Eventually, Maria succumbed to her battle with this horrible disease after an intense 3 years of fighting.
Being a caregiver is a choice. Some people can’t seem to be able to cope with the responsibility and subsequently abandon the responsibility. For others, there is no alternative option. For those that make the choice to stay and support their loved one, you all understand why you made the choice.
As a caregiver for someone with CRPS, it can be very overwhelming and frustrating, as many of you know. You want to do everything you can to care for your loved one. Not only the physical requirements, but the emotional requirements seem to be never ending. Always trying to keep the one you love as physically comfortable as possible, but also trying to keep hope from slipping away. You’re constantly challenged to try and balance the needs of your loved one who is suffering with the everyday responsibilities of your job, family and, honestly, just keeping yourself from falling off the ledge. My hats off to all the caregivers… you’re incredibly loving and selfless. Do everything you can not to fall off the edge. Without you… who else is there?
This brings me to the second chapter of my life with CRPS.
Board Member of RSDSA
During our journey to find a “fix” for my wife, I was made aware of RSDSA. I frequently visited their website for new treatments and a better understanding of CRPS. After my wife’s passing, I decided to become active with RSDSA and eventually became a member of the board of directors. I still wanted to continue my wife’s fight for other. Maybe it was just “unfinished business” for me. As a board member, I wanted to make a difference in so many ways. I created Maria’s Fund that focused on 3 initiatives that I felt very strongly about. I wanted to increase the awareness of CRPS to the medical community, since most doctors are not familiar with this disease. I wanted to assist those with CRPS and their families with navigating the healthcare insurance maze, since most of the treatment for CRPS are not covered by any insurance programs. And finally, I wanted to increase the awareness of the “elephant in the room,” suicide, since CRPS has the highest suicide rate of any medical condition.
All of these may appear to be lofty goals, but I have to believe that, as a member of RSDSA, I can make some impact on all of these initiatives. Obviously, it’s a work in progress. Oops, almost forgot something! I also wanted to offer more direct support for those CRPS warriors in my neighborhood of Denver. So here’s the next chapter…
Founder and Facilitator of the Denver Metro CRPS Support Group.
Wow!! What an experience this has become. After hearing that there wasn’t an active CRPS support group in Denver, I decided to see if there were any CRPS warriors in the neighborhood that could use some help. Well, guess what? CRPS sufferers seem to be everywhere, even in Colorado; more than I would have imagined. Our first few meeting had 3-6 attendees. One year later, we had 18 attend. The membership has now grown to almost 30.
The first thing that I hear from these warriors is that they can’t believe that there are other people suffering from CRPS. Once they attend our meeting, they feel a sense of relief and camaraderie. The discussions are very interactive and enlightening.
The stories are all too familiar. Missed/delayed diagnosis, lack of financial resources for uninsured treatments, lack of awareness of CRPS within the medical community, lack of healthcare resources, etc. Everyone is seeking their own path to battle this disease. This collection of individuals, as well as all others throughout the country, are struggling just get up every morning to see how they can make it through one more day. These are indeed Warriors and I am so proud to be able to offer whatever support I can to help them face that day.