I had my doctors appointment this week. You know how it is , every 6 weeks you make the journey to the doctors office, wait in the waiting room for about half an hour (more if you are late) just for your doctor to say "HI" then touch the parts that hurt and to talk to you about your meds. Every time I have an appointment my family and friends ask, "Why are you going to the doctor is everything okay?" When you have RSD going to the doctor is as common as getting a regular hair trim, you aren't changing your style you just need to keep up with what you have going on. I always tell my family and friends the same thing. "Everything is okay there are no changes but in order to keep getting my meds I have to see the doctor regularly." After all we know "everything" is not okay, I am seeing a doctor every six weeks because I am in pain but it is also my normal.
This time was slightly different however. While I was waiting I was able to talk to a nice woman who also has RSD. As I sat down she asked me quite bluntly "You have RSD too, don't you?" And then she told me how her mother was sitting with her when I walked in, took a look at me and informed her that I had that look, "She has RSD too." Of course it is always nice to meet someone who has been on the same journey. We talked about our stimulators and the aggrevation of recharging the batteries. It gets frusterating that it can take an hour of moving the wand around to find the "sweet spot" and then take another 2 hours of laying perfectly still 'Do Not Think About Coughing or Needing the Bathroom' during the recharge time. After she left for her appointment time my husband moved next to me. "This was the first time I met someone with RSD just like you have it" he said. And then he told me something that so many people have told me many times. "You are so strong."
I don't believe I am strong. I prefer to think of myself as STUBBORN and PROUD. I am too stubborn to allow my life be defined by RSD. I am too proud to be brought down by this disease that I have had for the last 14 years and will continue to have. Many people who surround me do not understand the full depth of my RSD or the obsticles it has placed in my path. They don't understand because I do not wear my condition on my sleave. Instead I choose to teach and explain what RSD is, what I have gone through these past 14 years and what it will be like to continue with RSD. My RSD is pretty well maintained considering the alternatives. I have good days and bad days. There are days that I can bake bread and play with my son. Then there are days that I struggle to limp through the house and just lay on the couch watching movies with my family. Each morning I wake up I do not know what the day will be like. I make plans and schedule appointments but family and friends always have the understanding that I may not be able to make it depending on "How I Feel" that day. There are also the days that I am too stubborn for my own good like having a flare up on Thanksgiving Week when I promised to have the dinner at my house. I will hobble and limp just so everything is perfect and I will delegate certain tasks but I will not give up having "Turkey Day" at my home. Sitting in a car is painful but I take my pain meds, use a pillow behind my back, hold on to whatever I can grab, and practice a type of meditation that I was taught just to help me deal with pain. I do not drive but I will go for a car ride so I can visit my loved ones. I do not let my pain keep me from living a full life, I just live it around my pain.
Friday, July 31, 2009
Wednesday, July 15, 2009
providing for the family
Today I get my social security disability check. This is my financial contribution to my family. I used to work. Actually I loved working. To me working wasn't just about money or a career. It was the chance to get out there and meet new people and learn something new. Yes I was that co-worker that always found time in the work day to socialize. But I also was a hard worker, when my health was good. I choose to hide my RSD from employers and my co-workers. I didn't want special treatment or the other side of people knowing, which is the doubts of the seriousness about my condition. I used to be a triumph story of RSD. Hiding my story and health was one of my downfalls though. When I needed another surgery or just on a very bad flare up day was when the attention was called to my health. Some people could handle it and others couldn't. One job I had in particular (I will not name the company) gave me a very hard time about my job performance while I was struggling with my pain. After months of struggling with my pain my doctor realized my SCS was malfunctioning and I needed surgery, I would be out of work for 3 months. That employer was not happy. In fact on my first day back to work I was called into a meeting and informed that if I did not step up my performance then I would be fired.
I have not been working for the past two years and still I cannot get used to it. At first it was easy, sort of like being on an extended vacation. My pain levels help keep me grounded whenever I think, maybe just maybe I can swallow the pain and start working at least part time? I know the truth, I cannot work. The trick with RSD is that you never really know what today, tomorrow, next month will be like.
I do know that my financial contribution to my family is nothing much compared to what it used to be. Instead I need to focus on the other qualities I bring home. Like I don't have to use a sick day when my son is sick and needs his Mommy! My husband and I can eat lunch together, since we live so close to his work!
Sure it would be easy to just hide my RSD and disability. I could admit to being a stay at home mom. Except that is mostly a lie because if I did have my health I would be out there working. Maybe someday I will be better enough to get that part time job and then even farther down the road I will be able to work full time again. At this point in time though my job is my health and my family.
Love, Prayers and Gentle Hugs,
Marti Ann
I have not been working for the past two years and still I cannot get used to it. At first it was easy, sort of like being on an extended vacation. My pain levels help keep me grounded whenever I think, maybe just maybe I can swallow the pain and start working at least part time? I know the truth, I cannot work. The trick with RSD is that you never really know what today, tomorrow, next month will be like.
I do know that my financial contribution to my family is nothing much compared to what it used to be. Instead I need to focus on the other qualities I bring home. Like I don't have to use a sick day when my son is sick and needs his Mommy! My husband and I can eat lunch together, since we live so close to his work!
Sure it would be easy to just hide my RSD and disability. I could admit to being a stay at home mom. Except that is mostly a lie because if I did have my health I would be out there working. Maybe someday I will be better enough to get that part time job and then even farther down the road I will be able to work full time again. At this point in time though my job is my health and my family.
Love, Prayers and Gentle Hugs,
Marti Ann
Saturday, July 11, 2009
Plea To Oprah
There is a group on Facebook that is trying to get Oprah to do a show about RSD. How amazing and helpful would it be to get that worldwide recognition from Oprah doing a show about our painful disorder. The group is on a tight deadline to gather information and put together a "story package" for the Oprah people. They have to be ready by the end of July, and that is only three weeks away!
Here is what they are looking for.
Detailed stories of how you acquired the disease, how long it took to get diagnosed, what you have tried as treatments, medications, etc. success stories, etc. Contact information for the stories so that they can be verified.
The show pitch with contacts, names phone numbers, experts, medical research, websites, gut-retching stories, personal triumphs, etc.
Please visit their group page on Facebook! http://www.facebook.com/board.php?uid=12539620428#/group.php?gid=125369620428 Or you can email smdonnell@comcast.net to help the cause!
Love, Prayers, and Gentle Hugs
Marti Ann
Here is what they are looking for.
Detailed stories of how you acquired the disease, how long it took to get diagnosed, what you have tried as treatments, medications, etc. success stories, etc. Contact information for the stories so that they can be verified.
The show pitch with contacts, names phone numbers, experts, medical research, websites, gut-retching stories, personal triumphs, etc.
Please visit their group page on Facebook! http://www.facebook.com/board.php?uid=12539620428#/group.php?gid=125369620428 Or you can email smdonnell@comcast.net to help the cause!
Love, Prayers, and Gentle Hugs
Marti Ann
Friday, July 10, 2009
Introduction
Hello!!!
Since this is my first post let me begin from the beginning.
The Summer of 1995 I had turned 17 years old. I received my drivers license and began working at a fast food chain restaurant. Typical teenager stuff right? Well, one day in August changed everything. It was getting to the end of my shift and I was just watching the clock tick by. I was leaning over a table wiping it off and then moved to go to the adjacent table. Suddenly my right knee hurt, really hurt. I tried to take a step and realized that just putting weight on it hurt too. So I thought, okay maybe I twisted it or pulled it somehow...but how? I only had five more minutes till end of shift so I kept this pain to myself. It was no big deal and nothing serious so why get a manager involved. Getting home that night was tricky. My car was a stick shift and my knee hurt whenever I moved my leg. Thankfully I only had a few blocks to drive!
My Dad who played sports growing up and for a short while was a High School coach took care of me as soon as I got in the door. My knee was swollen and red.
A week went by and my knee was still giving me issues so my parents took me to the doctor. He gave me extra strength Motrin for the pain, told me to rest and elevate it, and call back in two weeks if it wasn't better. Two weeks went by and I was still hurting and the Motrin did NOTHING for the pain. Next step was an x-ray and visiting an orthopedic specialist. That doctor put me into a patella brace had me use crutches and gave me some exercises to do. My knee cap would swell over the patella brace and the brace hurt so much more than when I went without it. Then when we went back to see him and tell him how the pain was getting stronger instead of subsiding he looked me in the eye and I will never forget what he said to me "You will be in pain until you decide not to be in pain any more." He basically told my Mom that I was doing this for attention and that there was nothing he could do for me.
I cannot even put into words how his response hurt me emotionally. I knew what I was feeling was real and I wanted it to stop. My mind kept repeating his words and I couldn't help but think "he is a Doctor".
Then a few days later my Dad talked to me and explained that I could get a second opinion. That if I felt that there really was something wrong with me we could get another doctor to examine me.
The second Orthopedic Doctor changed that darned Patella Brace for an Immobilizer Brace. He put me on Tylenol w/Codeine. He ran more tests. Then for our follow up appointment he was more than 30 minutes late coming into the office that day. I was exhausted and I just wasn't so sure of doctors anymore. When he did finally come into the office he explained why he was late. He was just getting back from a conference about Chronic Pain Disorders. He then went into a long explanation that I only half way listened to. My ears perked up when I heard him say "I think she may have this but I am not sure since I am only just now learning about it." My heart and head both leaped...there was something wrong with me! So this time I listened as he explained what he just learned about Reflex Sympathetic Dystrophy. He wrote it down for us even! What he was able to tell us was that I still needed to be properly diagnosed, so we had to travel to Philadelphia, PA to be seen at a Pain Management Office in Temple University Hospital.
This is when I began to realize that not only was my pain very real but it was something very serious.
The Doctors and Nurses at Temple University treated me very well. Having a Doctor come into an exam room and understand the pain I was going through was such a joy. I had gone through months of family, friends, teachers and a Doctor doubting the extent of my pain!
Of course I was diagnosed as having Reflex Sympathetic Dystrophy in my right knee. The first week of January 1996 began my long hard fight to stop my RSD. At first the doctors had high hopes. I was young and we caught it relatively early, 5 months before treatments began. Unfortunately in the fall of '96 my RSD spread down to my ankle and I slowly lost time in between treatments. By the time I was 21 I had 100+ blocks with two one week hospital stays. I was only getting a maximum of 23 days pain free.
My mom began looking for other options. She found a doctor who informed her about a Spinal Cord Stimulator (SCS) and how it possibly help with maintaining my pain. I went through trials and was approved. My SCS was implanted in July of '99. Just months after the surgery I was feeling great. I used my SCS daily but with it my pain was decreased by 60%! It was the best I had felt in years! Slowly I began walking for exercise, going out with friends, and I took a part time job. I was reclaiming my life and it felt so good.
Life with a SCS to maintain my pain was great. I was able to keep it hidden under my clothes so people wouldn't see it and ask questions. I could pretend as if I did not have RSD. In September of 2000 I took a full time office job at Lucent Technologies. That is where I met my future husband. One week after Thanksgiving of 2001 he proposed to me and I cried happy tears. We planned a small wedding and both wanted a family right away. On December 15 2002 we were married. By May 10 2003 our son Gabriel was born. I had a pain free pregnancy that I didn't even need to use my SCS during. We were living the good life!
Then I back slid. Since our son's birth in 2003 I have had to undergo 6 surgeries to "fix" or replace the Spinal Cord Stimulator. The last surgery was in June 2007 and it left me with Chronic Back Pain. My doctor believes it has to do with the Spinal Cord Stimulator and the numerous surgeries. I haven't been able to work in the past 2 years. Last summer I was approved for permanent disability.
That basically brings us to the present day. I hope to bring awareness to others about Reflex Sympathetic Dystrophy and inspiration to those who are living with it just like I am. Living with Chronic Pain is, well lack for a better word, a Pain! I am looking forward to blogging about my 14+ years of pain and what I have learned from it. I am always touched to hear about others who are surviving this painful disorder and their family members who just want to reach out and help their loved ones.
With Love, Prayers and Tender Hugs
Marti Ann
Since this is my first post let me begin from the beginning.
The Summer of 1995 I had turned 17 years old. I received my drivers license and began working at a fast food chain restaurant. Typical teenager stuff right? Well, one day in August changed everything. It was getting to the end of my shift and I was just watching the clock tick by. I was leaning over a table wiping it off and then moved to go to the adjacent table. Suddenly my right knee hurt, really hurt. I tried to take a step and realized that just putting weight on it hurt too. So I thought, okay maybe I twisted it or pulled it somehow...but how? I only had five more minutes till end of shift so I kept this pain to myself. It was no big deal and nothing serious so why get a manager involved. Getting home that night was tricky. My car was a stick shift and my knee hurt whenever I moved my leg. Thankfully I only had a few blocks to drive!
My Dad who played sports growing up and for a short while was a High School coach took care of me as soon as I got in the door. My knee was swollen and red.
A week went by and my knee was still giving me issues so my parents took me to the doctor. He gave me extra strength Motrin for the pain, told me to rest and elevate it, and call back in two weeks if it wasn't better. Two weeks went by and I was still hurting and the Motrin did NOTHING for the pain. Next step was an x-ray and visiting an orthopedic specialist. That doctor put me into a patella brace had me use crutches and gave me some exercises to do. My knee cap would swell over the patella brace and the brace hurt so much more than when I went without it. Then when we went back to see him and tell him how the pain was getting stronger instead of subsiding he looked me in the eye and I will never forget what he said to me "You will be in pain until you decide not to be in pain any more." He basically told my Mom that I was doing this for attention and that there was nothing he could do for me.
I cannot even put into words how his response hurt me emotionally. I knew what I was feeling was real and I wanted it to stop. My mind kept repeating his words and I couldn't help but think "he is a Doctor".
Then a few days later my Dad talked to me and explained that I could get a second opinion. That if I felt that there really was something wrong with me we could get another doctor to examine me.
The second Orthopedic Doctor changed that darned Patella Brace for an Immobilizer Brace. He put me on Tylenol w/Codeine. He ran more tests. Then for our follow up appointment he was more than 30 minutes late coming into the office that day. I was exhausted and I just wasn't so sure of doctors anymore. When he did finally come into the office he explained why he was late. He was just getting back from a conference about Chronic Pain Disorders. He then went into a long explanation that I only half way listened to. My ears perked up when I heard him say "I think she may have this but I am not sure since I am only just now learning about it." My heart and head both leaped...there was something wrong with me! So this time I listened as he explained what he just learned about Reflex Sympathetic Dystrophy. He wrote it down for us even! What he was able to tell us was that I still needed to be properly diagnosed, so we had to travel to Philadelphia, PA to be seen at a Pain Management Office in Temple University Hospital.
This is when I began to realize that not only was my pain very real but it was something very serious.
The Doctors and Nurses at Temple University treated me very well. Having a Doctor come into an exam room and understand the pain I was going through was such a joy. I had gone through months of family, friends, teachers and a Doctor doubting the extent of my pain!
Of course I was diagnosed as having Reflex Sympathetic Dystrophy in my right knee. The first week of January 1996 began my long hard fight to stop my RSD. At first the doctors had high hopes. I was young and we caught it relatively early, 5 months before treatments began. Unfortunately in the fall of '96 my RSD spread down to my ankle and I slowly lost time in between treatments. By the time I was 21 I had 100+ blocks with two one week hospital stays. I was only getting a maximum of 23 days pain free.
My mom began looking for other options. She found a doctor who informed her about a Spinal Cord Stimulator (SCS) and how it possibly help with maintaining my pain. I went through trials and was approved. My SCS was implanted in July of '99. Just months after the surgery I was feeling great. I used my SCS daily but with it my pain was decreased by 60%! It was the best I had felt in years! Slowly I began walking for exercise, going out with friends, and I took a part time job. I was reclaiming my life and it felt so good.
Life with a SCS to maintain my pain was great. I was able to keep it hidden under my clothes so people wouldn't see it and ask questions. I could pretend as if I did not have RSD. In September of 2000 I took a full time office job at Lucent Technologies. That is where I met my future husband. One week after Thanksgiving of 2001 he proposed to me and I cried happy tears. We planned a small wedding and both wanted a family right away. On December 15 2002 we were married. By May 10 2003 our son Gabriel was born. I had a pain free pregnancy that I didn't even need to use my SCS during. We were living the good life!
Then I back slid. Since our son's birth in 2003 I have had to undergo 6 surgeries to "fix" or replace the Spinal Cord Stimulator. The last surgery was in June 2007 and it left me with Chronic Back Pain. My doctor believes it has to do with the Spinal Cord Stimulator and the numerous surgeries. I haven't been able to work in the past 2 years. Last summer I was approved for permanent disability.
That basically brings us to the present day. I hope to bring awareness to others about Reflex Sympathetic Dystrophy and inspiration to those who are living with it just like I am. Living with Chronic Pain is, well lack for a better word, a Pain! I am looking forward to blogging about my 14+ years of pain and what I have learned from it. I am always touched to hear about others who are surviving this painful disorder and their family members who just want to reach out and help their loved ones.
With Love, Prayers and Tender Hugs
Marti Ann
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