RSD Interview With Dana Elise Singer

B"H
How did you get RSD/CRPS?
On a Sunday in December of 2006, I took a bad fall landing on my right knee with all my weight. I was leaving for Los Angeles the next day, as I was scheduled to have surgery on Tuesday at UCLA. It’s a fairly routine surgery where they go into my face and embolyze, ligate, and glue the blood vessels that are putting pressure on my nose, causing me to have bleeding episodes, as I have a genetic blood disease that is akin to hemophilia called Von Willibrandt's Disease. Coincidentally, I also have an Arterial Vascular Malformation or AVM, specifically Tilangictasias, which allows the blood to pool up and put pressure on the nose and make it start to bleed. This is why they needed to operate. I have had this surgery over ten times in my life, since I was 17 (and I am 42 now).
I want to mention I have been chronically ill since I was 4 years old. It started with Migraine Headaches that I passed out from in nursery school, and was diagnosed with by a neurologist at that time. He found a migrainous wave on my EKG, which is rare. I have been treated for migraine headaches since 1974.  When I was 6 years old, I began to have serious epistaxis episodes (bloody noses) that required hospital trips each time and sometimes hospital admissions as I bled for a minimum of 3 hours up to 8-10 hours with massive clots, which was abnormal. This continued for 3 years until I had to have my tonsils and adenoids out for repetitive Strep Throat Infections that occurred a minimum of 10 times per year from the age of 5. After my tonsillectomy and adenoidectomy, I hemorrhaged from the surgical site which occurs in 1/250,000 cases. So the Head and Neck specialist who treated my epistaxis episodes and performed the tonsillectomy and adenoidectomy sent me to a pediatric hematologist, who diagnosed me with Von Willbrandt's and attributed the epistaxis to that, as well as to a Factor XI Deficiency. Therefore, anytime I have surgery, even dental surgery, I need infusions of Vasopressin and Fresh Frozen Plasma. Prior to the discovery of Vasopressin, I had to get 35 bags of Cryo, which is Human Blood Factor, which is what exposed me to the Hepatitis C that I got and, even possibly, to the HIV/AIDS Virus (as I received the blood factor during the years that HIV/AIDS went undetected in the blood supply in the dirtiest blood bank in the USA, which was California). I distinctly remember crying when Ryan White died, thinking he died for me or in my place.
So I lived like this, in and out of the hospital/missing loads of school, my record being 85 days of the 5th grade, bleeding out of my nose randomly wherever I went until I was 17 and was sent to UCLA's Head and Neck Department to investigate my epistaxis problem as it had grown worse and more severe. They talked about doing a skin graft over the area of my nose that would never heal from where it bled, but they would not be using sinus tissue. Rather, they would use skin from the outside of my body, which is not self-cleaning and the results can be rather problematic, if you can imagine the odors you have to deal with and the cleaning process you have to deal with to keep it from smelling. So I was adamantly against that idea. The other option was to do Interventional Radiology, like they do for Stroke patients, but stop at the face and check out the structures there. That is how they discovered I have an AVM consisting of Tilangictasias. An irregular structure of blood vessels and arteries where more blood vessels sprouted out of and grew from the proper blood vessel structure which put excessive blood pressure on my nose and made it start bleeding. My Von Willibrandt's and Factor XI Deficiency then kicked in and prevented it from clotting. Of course, the surgery to close off these vessels triggers my migraines for years after.
I pretty much maintained my life, having these surgeries further and further apart, until the epistaxis became manageable. I lived with all these conditions I mentioned and managed to graduate college Magna Cum Laude and go to Law School. Then, my back went out and I needed to have back surgery in 2004. I have since been diagnosed with Herniations, Bulges, Degenerative Disc Disease, Sciatica, Forminal Narrowing, Stenosis, Spondylitis, Fibromyalgia, Osteopenia, Hypothyroidism, and Insulin Resistance, as well. I have included this information, so you recognize that RSD/CRPS has been my latest medical battle, not my first. I have lived with chronic pain my whole life, so my experience and reaction to it is probably much different than many others'.
Back to the fall in December of 2006 and my CRPS/RSD Injury, I rested that night and got up the next morning to pack, but my knee swelled up to the size of a basketball within 20 minutes, so I had to get back down. Fortunately, my husband was able to finish packing for me. I was in terrible pain and used some of my pain medicine I had, as I was already a chronic pain patient. I somehow managed to get to Los Angeles, have my surgery, stay in the hospital afterwards, and come home to my Nana's z”l. (z"l is shorthand for the Hebrew expression zichrona levracha, which means that the deceased female person’s memory shall be for a blessing). On December 25th, the pain was so unbearable I went to the ER at 7AM and had an MRI, which was inconclusive indicating a possible torn meniscus. By that time, I had developed a very strange rash on my right leg below the knee. The doctors at the ER biopsied it to check for Vasculitis, which would make sense because of my Hepatitis C. With Hepatitis C comes a condition called Cryoglobulin Anemia, which is a Lupus Antibody that causes Vasculitis. So the doctors thought they had me all figured out. They sent me home to await the biopsy results. That week the results came back negative for Cryoglobulin Anemia. So I was back to square one, except for seeing an orthopedist about the torn meniscus.
On December 31st, I returned to the ER to be admitted for Shingles and for another MRI of the knee. Mind you, both times, my knee was too swollen to fit in the knee casing of the MRI machine, so they bound it with a sheet without medicating me in any fashion for pain or anxiety. This time, I passed out from the pain after throwing up all over the MRI room. The results of the second MRI clearly indicated no torn meniscus. I stayed in the hospital for seven days to be treated for pain and be given IV medicine for the shingles, only to be diagnosed with Munchausen's and Munchausen’s By Proxy and then kicked out.
When I left the hospital, I went to see Dr. Ernestina Saxton for Pain Management in Los Angeles who believed there was something very wrong. She sent me to my old neurologist, Dr. Sheldon Jordan, in West Los Angeles, who immediately diagnosed me with RSD of the right knee. Furthermore, Dr. Saxton took a long history, noticed my posture, and listened to my complaints of pain in my arms, shoulders, and brachial plexus, took my pulses in my arms when they were over my head, and highly suspected I had Thoracic Outlet Syndrome. She immediately sent me to UCLA where there was the only MRA machine in Los Angeles to have an "MRI" that showed the nerves and blood vessels to indicate if I had compression of the nerves and blood vessels. Actually, I had a severe case with quite remarkable anatomy. It turns out, Thoracic Outlet Syndrome or TOS is a type of CRPS, but I did not know that at the time. Hence, I had two causes of RSD/CRPS all along, but I never knew it. I only knew the pain and limitations.
After the MRA confirmed the existence of TOS, I had my first Sympathetic Nerve Block done in order to see if surgical correction would be beneficial or not. All I will say is that I have never had anything cause me so much more pain in my entire life than that block. My painful response indicated I was a candidate for bilateral first rib resections and scalenectomies done one side at a time. I also had sympathectomies done at the same time for the Raynaud's and for the uncontrollable facial and head hyperhydrosis...not for the RSD/CRPS. I did not know at the time sympathectomies were not advisable for RSD/CRPS as I had not yet seen Dr. Robert Schwartzman in Philadelphia. So, in 2007 and 2008, I lived in Los Angeles away from my husband and four-legged family in Connecticut, and had these surgeries, as I was too unstable to go back East. I returned home in late 2008 and made an appointment with Dr. Schwartzman for 2010. While in Los Angeles, I developed Gastroparesis and lost about 60lbs from vomiting up food and I developed a neurogenic bladder. This was all part of a spread of the RSD/CRPS, which continued through until today. At this point, my brachial plexus, both arms, both hands, back, hips, right knee, and both legs from below the knees (including my feet) are affected by my RSD/CRPS. I am currently on an opioid regiment that I would like to get off of to get on LDN and Ketamine Troches with Ketamine Infusions spread out to combat this vulgar disease that has altered the course of my life in both good and bad ways.

How has it affected your life?
RSD/CRPS has affected my life by making my foot too large for women's shoes, which really angers me. I have to wear men's shoes and shop the men's department, which I really resent. Though, I now wear women's size 12 which I recently found a pair of dress shoes in, that came in two colors, so I ordered both colors…low heels, obviously. It affects my whole life, just as my other medical conditions always have. I have to live my life around an alarm clock for medication and eat accordingly (or not) if my Gastroparesis is acting up. Although, you learn to adapt strategies that make even vomiting efficient, funny enough.

Do you have a good support system?
I have a fairly good support system. I have a most best friend in my husband, who believes in me probably more than I believe in myself. He sees strength and heart in me that I am not sure I see or feel. Sometimes I do, but sometimes I question it. Am I really all that he sees in me? There are times when I definitely recognize myself through his eyes, but then there are times where I am more critical of myself than I should be. I feel like I am really fortunate to have married the man I did, as he is my biggest cheerleader and greatest supporter and spoils me wonderfully! Every woman should be so lucky to have a Gregory in their life. I also have many wonderful friends who I have met through online support groups that have become like family to me. There is a saying that “Family is not the one you are born into, but the one you choose.“ I can identify with that very much as I have grown to love so many of these other RSDer's across the country that I speak to on a daily basis. There is nothing I would not do for them. I am close with my father as I lost my mother z”l in 1999, but he does not know how to deal with my illness and only could when my mother z"l was around. So, I leave the support up to my friends when I need it. I rely on my husband for it the most. He is my rock.

Does faith play a part in your struggle?
Of course it does! I do not know how it could not. I am a fairly observant Jewish woman who strongly believes in Hashem (G-D). I do not think I could have gotten through my life plagued with illness and challenges, if not for my strong faith and belief in Hashem. So, my answer is a resounding Yes!

How have you reinvented yourself?
I suppose you could say, throughout my whole experience as a person living with illness, that I have constantly had to reinvent myself. I have learned to live my life within the constraints any particular illness has put upon me. For example, I was never permitted to take physical education in high school as sports could lead to a bleeding episode, but I had to take something to fulfill the requirement so, instead, I lettered in both Soccer and Track & Field by serving as the Team Manager for three years of high school. I make lemonade out of lemons. With RSD/CRPS, I have jumped in and gotten very active in the online community.

Has any good come from this trial?
While it has been a long road for me to hoe, I have learned quite a bit, become an advocate for others, and started a support group on Facebook; thereby, taking the focus off of myself and my pain. I have to say I would not be the person I am today without RSD/CRPS. So, while I am not grateful for it, I am grateful for my life as it is. So, yes, good has come from it. There is now another support group for others to go to. There is another advocate for people to turn to. Finally, there is another person to effect change for people living with this wretched disease.

What do you miss the most?
I have grieved all my losses, so I do not focus on the cannot's. I only focus on what I can do. It seems to me a waste of my productive energy to ponder what I cannot do, as it is not relevant anymore. Focusing on it will only bring me down. I believe each person has to walk their own path on their journey. If some people benefit from focusing on what they miss, then all the power to them. I find it unproductive for myself, so I do not remember or know what I miss. I enjoy what I’m doing now and choose to focus my attentions there.

What do you want the general public to know about your disease or you?
All I can say is to please never judge a book by its cover. You never know what invisible disability someone may have. So live your life with sensitivity, as you cannot see so many illnesses. When someone says they are in pain, do not disbelieve them because they do not look like they are in pain. Pain does not look like any one thing. It has many faces, shapes, sizes, and forms.

Thank you for reading my story.
Dana Elise Singer
aka Callie Sloane