RSD Outreach awareness

Not Your Average Newlywed-Lauren's Story

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Not Your Average Newlywed-Lauren's Story

Post  byrd45 on Sat Nov 01, 2008 9:30 am

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From: laurenadria7 (Original Message) Sent: 2/15/2007 2:19 PM
Hi everyone, I'm Lauren. This story became a novel, I hope it is not too boring to read. I have RSD in my ankle and possibly my knees. My knees story begins 8 years ago, and I may save it for another time. I will tell the story of my ankle, because it is that one which has changed my life so drastically and left me much more disabled than the knees.

My bittersweet story begins in December of 2005. (yes, there is some sweet in the story, we'll get to it later) I live in New York City and a few months prior I had started singing every week with a live karaoke band- it was so much fun! I was single and I had finally found the perfect social scene- something that actually involved an activity rather than just going to a bar. It was a fantastic event with a lot of fun people. I rehearsed my songs every week and looked forward to performing. One December night I went down to the club all excited to sing, wearing the Chuck Taylor Converse high tops I customarily wore (very rock and roll! plus I have size 11 feet and it is hard to find shoes period.) When it was my turn to sing I got up, everything was going really well, I hit all the high notes that I had been nervous about (phew!) During the guitar solo, I was dancing around a little bit in my little spot on the stage (people at this event really PERFORM, it's not like ordinary karaoke) when suddenly the plastic bottom of the shoe stuck to the stage, and my foot turned 90 degrees with the sneaker remaining on the ground. I heard a loud crack all through my body, and I collapsed on the stage. I was sure that I had broken my ankle. But I was so embarassed, I didn't want people to think I was drunk (I wasn't) so I got up and finished the song! A bad idea, obviously, to stand on an injury whatever the nature. I had to be carried out of the club to the ER- my ankle was 3x it's normal size and it looked like my foot was on sideways. The triage people thought it was broken, by the time I saw the doctors it was totally blue. They were amazed to find after x-rays that it was just sprained, but severely sprained and they said many sprains are actually worse than a break. They sent me home with crutches and I was told not to leave my apartment until I saw a doctor. I made an appointment with an ankle specialist at NYU hospital but because it was near Christmas it was 2 weeks until I could see him. During the week after the accident my entire leg turned blue and swollen. I finally started getting better with physical therapy but I was basically home for 3 months. During the recovery I also developed Intersticial Cystitis, a very painful and somewhat rare bladder condition that originates the nervous system. The urologist theorized that I may have developed it because of my recent injury, or my knee injuries of years prior. I had to go through a series of painful DMSO treatments for the IC, go on a very restricted diet, start new meds which I take to this day. I still can't eat a whole lot of stuff b/c of the IC. (In any case, later on many doctors will agree this is related to the RSD which may have already been in my knees for 6 years at that point)

Ok, all bitter so far but here is the sweet part. The drummer for the band wrote me an email while I was recuperating which eventually led to a date when I was better, and within a few weeks it was obvious that this was the real deal! I had finally found my soul mate:) Oh, and he's not just the drummer for a karaoke band, although he did tour professionally for many years in other bands- he is in a managerial position at a record label. Anyway, I had found the man I had always been looking for, but really he found me! We were engaged within 5 months, and planned to be married in September 2006.

Then more bitter. I sprained my ankle two more times, from doing normal every day things. Once just walking on the beach. Then once when my slipper moved under my foot at home. The second time was in March 2006, just 3 weeks before my brother's wedding, and I was to be a bridesmaid in the wedding! Finally I saw another doc at the Hospital for Special surgery who recommended that we do surgery to repair the ligaments that were so stretched out from the initial sprain I would just keep spraining forever otherwise. He also noted that my arches were so high that I was leaning outward, making me more prone to turning my foot- it's already partway to turning on it's own. So he proposed to move my heel bone outward to balance me.
We decided to do the surgery, for fear that without it, I might sprain my ankle again a week before my own wedding! There were only 5 months to recover, but the doctor said it was totally do-able. It was a gamble, but we went through with it. That was in April 2006. The recovery was heinous. I have never been in such excruciating pain. I was on a morphine drip for 3 days, and on vicodin for weeks which eventually barely helped. The burning pain I experienced setting in after the block from the surgery wore off really feels like a more intense version of the pain I sustained in my ankle since the surgery, only I can't push a button to make it go away like in the hospital! During the recovery I started experiencing all of the symptoms I deal with now- hideous nightmares where I would wake up screaming. Panic attacks, Depression. And of course, the burning pain. (My father couldn't figure out why my recovery was so painful when he had the same heel surgery and he was back at work in 2 weeks!) Oh, and to make matters worse, I sprained my left ankle at home, just reaching behind the sofa of all things! I sprained both wrists trying to lift myself up and down. And I developed severe tendonitis in my shoulders and elbows from the crutches. I pushed through physical therapy and struggled to do all the planning for my wedding and honeymoon from my bed- all the while being so nervous I would never recover in time. I only managed to just make it- I walked down the aisle in two ankle braces (luckily the dress was long!)

I somehow managed to walk around and feel fine on our honeymoon in Italy. It was pretty miraculous considering I was in excruciating pain the week before the wedding. It was as if it was a gift from above, just to have 2 normal weeks with my new husband, and to enjoy life in a beautiful place after the months of suffering in the apartment. Who knew that there would be many more bad months to come.

Shortly after we returned home I sprained my ankle again (so much for the surgery.) This time the pain was unbearable. I couldn't walk more that a block or so. I would come home and collapse on the bed hysterical and couldn't calm myself down. I couldn't stand long enough to brush my teeth, I felt so helpless. No amount of rest or ice or elevation helped at all. My nightmares became more frequent and more graphic- always bloody, always involving death and injury/surgery and invariably I woke up screaming and/or crying. Sometimes my husband had to wake me as the crying didn't stop in my sleep. I became more and more depressed, and I felt so guilty to do this to my new husband. He met a youthful, vivacious, active woman, and suddenly I was an immobile, miserable, helpless sick person. One day I was at my therapist's and he recommended that I see a pain specialist. He recommended Dr. Russel Portenoy, the head of the Pain Center at Beth Israel Hospital. I managed to get an appointment and it was he who diagnosed the RSD. Fortuitously enough, he is one of the experts and pioneers in the field of treating RSD. He gave me a great deal of hope about treatment. Unfortunately he only does consults 1 time and refers patients to another doctor. But I do like the one I have now. I started on Neurontin, Topomax, and I am scheduled for a nerve block on Feb 21. As instructed by the doctor I gave up caffeine and chocolate and I think that has helped a great deal.
Since I've been learning more about RSD and interacting with all of you on the message board, I have been feeling much more "empowered" as my husband described. He's right, I feel like I am taking control more than when I was just lying in bed crying. I also have a lot of ideas about spreading awareness which I will share at some point- I feel very dedicated to this as it is a tragedy that so much of the public and the medical community particularly are in the dark about RSD.

My husband and I also started going to therapy together which has been very helpful during this challenging time. I highly recommend family/couples therapy to anyone who is experiencing relationship issues because of the RSD. It is hard for everyone to adjust, and someone being unwell brings up a lot of issues that might get displaced and misunderstood if they are not dealt with properly. We are doing much better now and I feel very optimistic about everything.

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From: byrd45 Sent: 3/19/2007 5:15 PM
Dear Lauren,
You have been through so much as I guess we all can understand in our own ways. I am so glad that you are taking charge of your life and allowing RSD to only be one facet in your life not the disease who is running the whole show. I know how hard it is to keep away from that line of thinking. Empowering yourself is the best way to stay on top emotionally and physically too. I look forward to hear any ideas you have for spreading awareness in the future. Take Care and talk to you again soon!

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