August 25th 2008
The first twelve years of my life were perfectly normal. I was a healthy, athletic, and outgoing girl. I spent every summer at camp. I went on adventurous vacations with my family. I danced and went to Hebrew School. Now, I sit with my best friends as they reminisce about the stupid games they used to play when they were 12 and I remember the awful trips to the doctors that consumed my time. I start to feel sorry for myself and catch myself and remind myself how lucky I am for so many reasons and how adversity has made me a stronger person. I hope that one day I won’t have to give myself this pep talk.
The moment everything changed remains a series of images and anecdotes which I’ve told too many times in numerous doctor offices where I must share my story and watch them listening with their bewildered faces. I have grown skeptical about doctors after suffering from preventable mistakes by these people dressed in coats with degrees saying they will help not hurt me. Fighting to be normal and keep up with my life I endure serious pain throughout my body for weeks at a time. I was misdiagnosed and my family thought I might die, meanwhile I played travel basketball and was one of the stars. I almost feel as though this memory is a lie because I don’t consider myself an athlete at all anymore. I remember how I started asking my team mates to throw the ball softer at me because I was having such difficulty catching. Suddenly my shots couldn’t make it to the basket, my wrists weren’t working the way they once had just days before. I stood on the sideline hiding and praying my coach, my father, wouldn’t make me go in. His look of disapproval and disappointment with my lethargic attitude lingers amidst my recollections.
I was in gym class and we were practicing gymnastics. I was never extremely flexible but all of a sudden I tried to do a summersault and I was unable to do it. I don’t remember feeling panicked or even really confused. It was just happening.
I was in social studies class and we were all sitting in a circle but I could not sit Indian style anymore.
Finally, my mother decided to take me to the doctor for the first time after I couldn’t be bothered to try on a dress she had brought home because “it would take too much effort.”
Shooting a basketball. Doing a summersault. Sitting Indian Style. Putting on a dress.
It happened so fast. But my body continued to change gradually, months became years. I became stiff. My fingers were like claws. Changes so gradual I didn’t even realize some until my mother would tell me to “Open the door normally with my fingers extended not in a fist.” People ask how I coped with it all? I had no choice. The more doctors we visited, the more I felt like I had no say in the decisions being made for my treatment. It didn’t matter what changes I noticed, I was changing beyond my control and felt helpless. I felt alone and isolated from my friends because there was no way I could explain to them what was going on and have them understand any of it. I didn’t even understand.
Eventually I was correctly diagnosed with a rare auto immune disease called Generalized Subcutaneous morphea.
Years have gone by and sometimes I go days forgetting that I have an auto immune disease, especially during the winter when my discolored skin is hidden beneath layers of clothing. I have developed a great respect and admiration for all that I went through and how brave I was through such a difficult period of time. Confronting my worst fear of needles was not an easy task. Waking up for hand therapy appointments at the early hour of 7:30 am before a long day at school and then more appointments in the afternoon was not something I ever looked forward to. I have been to dozens of doctors and tried multiple treatments. I believe my condition has improved and is no longer getting worse but I am not certain at all what lies ahead in my future. I try to take one day at a time because I know that worrying about the unknown won’t help. I don’t hate what the disease has done to me anymore. I don’t feel like a sick patient as I unfortunately have in the past. I’m not a religious person and I don’t trust doctors very much considering how rare my disease is-but I have faith. I believe that a person can control whether they let devastation get the best of them. While I still feel limited in my body I do not dwell on it. Now that my disease isn’t getting worse I have control over my body and am doing everything I can to keep it healthy.
An old diary entry:
I know the pain is only temporary but the minute the doctor says the word needles or shot my heart speeds up and I panic as if someone has just told me someone I loved was dead. I would try to hold the tears back by staring at the ceiling, the floor, and focus on something happy. My leg would kick uncontrollably until I was short of breath and hysterical. I knew my mom felt bad for me a lot of the time but after awhile both my parents grew impatient and looked at me like you know this is not a choice. It didn’t make it any better. On rare occasions I could admit that my anticipation made the pain of the needle far worse than it actually was. Still, most of the time it hurt me so much I cried for a long time after because I could still feel the jabbing and that awful light headed feeling that once caused me to faint. For many months I tried something called Embla cream to lessen the pain. This was the process: in the middle of the night my mom would come into my room and help me put this numbing cream on my inner arm and then wrap my arm in saran wrap. In the morning 5 minutes before I would get blood drawn I would put ice where the cream was and supposedly I felt the needle less. I think it was more a mental relief but it helped at least a little.
In the summer of 2006 I was a counselor for girls ages 8 and 9. While some might think children so young don’t have a filter and might have offended me given my unusual skin I experienced the contrary with most. Even if a few of the girls made faces and worried it was contagious or that they would randomly get such an illness as I did, I cherish the moments in which I was blown away with the girls’ innate sensitivity and gentleness. Especially compared to exchanges I’ve had with older children and adults, these remain memories I hold onto rather than beg to forget. Responding to inquiries has been a process for me in my ability to feel comfortable in my skin. As a camper I remember girls asking me on a soccer tournament what was wrong with my skin and I told them I had been beaten. I don’t remember the tone in which I said this in but it was the only thing I could come up with at the time. Another summer I attempted to wear sweatshirts and sweatpants on the hottest of days and that was no breeze to say the least. I was asked if there was dirt on my skin or if they were bruises. To be accepted and cared about by these sweet young girls felt so refreshing. Their demeanor put me at ease in a scenario that once caused me near panic attacks.
Thursday, September 17, 2009
Saturday, September 12, 2009
25 years
Hello all I'm Tami,31, from Illinois. Occupation:Xray Tech-Now unable to work
I was diagnosed at age 6 with morphea and linear apparently at that time I was one of the 5th youngest to be diagnosed oh how lucky I was. I had chicken pox really bad and as the last of the pox was beginning to disappear, lesions on my right thigh began. And so, began the journey of the unknown, Scleroderma. I spent a lot of my childhood being sick,catching every cold possible. My lesions began to spread as the years passed by and by high school my legs were covered with "spots",my torso,my arms too. It seemed wherever I went I would catch people starring at my legs and arms,asking questions. It didn't take long for me to have my short line I would tell people when they asked what was wrong with me.
Fast forward to 2003,I had found the job of my dreams ,I had found a new facility to work as an xray tech/mammographer, with co-workers whom were like a 2nd family to me. And my life changed drastically, I began to have such pain in my legs,arms,all over. I tried to hide the pain though deep down there was days I truly wished I would just fall down so I could go home and rest. I began seeing multiple doctors, many of them saying to me "I can't help you,you need to go somewhere else". I began to really dislike doctors alot. Unfortunately, I became even more rare, I had systemic scleroderma,morphea,linear,morphea profundas,GERD,decreased diffusion capacity of the lungs,high blood pressure,etc. Finally, in 2005 my doctor and mother told me I was killing myself by continuing to work. At 27 yrs old I became "disabled" and let me tell you what a battle to go through the tons of paperwork trying to get social security to approve my disability.
Now it seems like everyday my health gets a little worse, from the pain,the frustration,nausea, it makes it harder and harder to accomplish the simple things in life. I have to plan ahead for any type of activities, say grocery shopping I have to rest the entire day before and then 3 days later I am still recovering from being exhausted from buying groceries. I have to decide if a certain activity is worth the pain.
I have to say the worst part of being ill is that no one understands. They don't get why I have to stop and sit in order to keep going,why there are days I just can't muster the strength to walk out the door,or why I can't "hang out" anymore. I do know that scleroderma has shown me whom are my true friends, the friends that understand somewhat and do not get mad if I have to cancel plans. I have lost most of my "friends" because of being ill but I thank God every day for those I still have, for my mom whom understands and cares,for the internet to allow me to meet others like me whom understand.
I cant imagine my life without scleroderma for this is the only life I know. I know that this has made me stronger mentally,given me the ability to have empathy for others,to not get so upset over the small things in life, to stop and smell the roses,to appreciate every day I see the sun rising and the sun setting. For, I have lived another day and can only hope that as technology grows so might a cure for scleroderma.
I was diagnosed at age 6 with morphea and linear apparently at that time I was one of the 5th youngest to be diagnosed oh how lucky I was. I had chicken pox really bad and as the last of the pox was beginning to disappear, lesions on my right thigh began. And so, began the journey of the unknown, Scleroderma. I spent a lot of my childhood being sick,catching every cold possible. My lesions began to spread as the years passed by and by high school my legs were covered with "spots",my torso,my arms too. It seemed wherever I went I would catch people starring at my legs and arms,asking questions. It didn't take long for me to have my short line I would tell people when they asked what was wrong with me.
Fast forward to 2003,I had found the job of my dreams ,I had found a new facility to work as an xray tech/mammographer, with co-workers whom were like a 2nd family to me. And my life changed drastically, I began to have such pain in my legs,arms,all over. I tried to hide the pain though deep down there was days I truly wished I would just fall down so I could go home and rest. I began seeing multiple doctors, many of them saying to me "I can't help you,you need to go somewhere else". I began to really dislike doctors alot. Unfortunately, I became even more rare, I had systemic scleroderma,morphea,linear,morphea profundas,GERD,decreased diffusion capacity of the lungs,high blood pressure,etc. Finally, in 2005 my doctor and mother told me I was killing myself by continuing to work. At 27 yrs old I became "disabled" and let me tell you what a battle to go through the tons of paperwork trying to get social security to approve my disability.
Now it seems like everyday my health gets a little worse, from the pain,the frustration,nausea, it makes it harder and harder to accomplish the simple things in life. I have to plan ahead for any type of activities, say grocery shopping I have to rest the entire day before and then 3 days later I am still recovering from being exhausted from buying groceries. I have to decide if a certain activity is worth the pain.
I have to say the worst part of being ill is that no one understands. They don't get why I have to stop and sit in order to keep going,why there are days I just can't muster the strength to walk out the door,or why I can't "hang out" anymore. I do know that scleroderma has shown me whom are my true friends, the friends that understand somewhat and do not get mad if I have to cancel plans. I have lost most of my "friends" because of being ill but I thank God every day for those I still have, for my mom whom understands and cares,for the internet to allow me to meet others like me whom understand.
I cant imagine my life without scleroderma for this is the only life I know. I know that this has made me stronger mentally,given me the ability to have empathy for others,to not get so upset over the small things in life, to stop and smell the roses,to appreciate every day I see the sun rising and the sun setting. For, I have lived another day and can only hope that as technology grows so might a cure for scleroderma.
Thursday, August 13, 2009
End of May, A Surprising Birthday Gift
Hopeful.
Scared.
Overwhelmed.
Resentful.
Fortunate.
In Vermont Ben’s mom spoke highly of her experience with acupuncture and without knowing much at all about my condition, she urged me to give it a shot. I spoke to my parents about it and they told me how they had wanted me to try it when I was really sick but because it involved needles I wanted no part of it. For over a week I talked to a bunch of people about it and almost everyone said it didn’t hurt and would be worth a try. I stayed pretty calm in the proceeding hours and days, you could say I was even a little excited. The doctor’s English wasn’t perfect and I wondered if he understood everything my mom was saying and if he had heard of any of the medications and treatments she mentioned. I felt panicked not really knowing what was going to happen or what to expect. My mom was describing my condition and she pointed to my trunk area and said I was distorted. That was flattering. I hate these mixed messages from people telling me they don’t notice anything when clearly they are lying. At the same time, why can’t my own mother be more sensitive? He asked me to stick out my tongue and then told me I was deficient-something to do with my circulation. He asked if I slept okay. He explained some of the acupuncture workings how it opens the meridians and lets energy flow by opening up scar tissue and relaxing muscles. He said how he would put needles in places depending on where I hurt. I was very scared the entire time and didn’t like the idea of having needles stuck in me all over. I kept my eyes closed for a long time and tried my best to take my mind elsewhere but so much was going on and he kept asking me to move around and I wanted to follow directions but I also felt terrible. I felt dizzy like I might faint and pained. He was very nice and saw on my chart that it was almost my birthday. He said this would be a great birthday present that I was going to feel so much better, instantly. He said how much I’ve suffered and how from now on I was only going to improve and he looked me in the eyes and said he was going to improve the quality of my life. He hardly knew how my life has been impacted by my body yet I believed him wholeheartedly and wept. Tears of pain and fear. tears of hope and overwhelmed with emotion-could this really be happening? Was I about to get a magical treatment to make everything go away? He kept putting more and more needles in and I just wanted him to stop, stop puncturing my skin. Everyone didn’t hurt but I hated knowing what was going on. I could feel things happening in my body and it frightened me. Once he put a needle in my hand and I felt a large sensation in the tip of my finger. I tried to relax but couldn’t. I felt like my hands couldn’t move but were in an uncomfortable position, any movement hurt more. The head needles scared me the most. Before he started and he said “I’m going to put 5 needles in your head” I smiled in disbelief-are you kidding me? Going into this appointment I had ignorantly imagined a few needles in my back and that was it. For 30 minutes I talked to my mom in an effort to distract myself. It was okay mostly but I cried consistently in a hyperventilated panic. Now I get to go have some disgusting Chinese herbal tea and look forward to doing it all again on my birthday, this Thursday.
Wednesday, August 12, 2009
The Power of the Collective
22 year old male, 6 years into the eosinophilic or morpheaic fray, post-college student, living and working in the (late) great high-five state of Michigan.
High-fives... something that I could not do as recently as a few years ago.
Understand that my story and symptom trail is very similar to both previous posts. And, after reading the Flares post, I have decided to skip all of that part of the story. I choose to skip the history because of the comment (paraphrasing), "In the midst of a flare, I can't get my brain to focus." *Bad pun alert* I am going to focus on that comment. (sorry for that).
Lack of focus- I expressed this feeling to my doctors every time I came in for new treatment, based on my flare-ups. Constant fatigue and lack of concentration were (and are) pervasive in my life. They would only respond, "I don't get any sleep either. I know how you feel." I tried to explain that this was a different feeling from my normal, college fatigue from study binges or late nights out. I even asked them to try and discover an answer during one of my MRI's. No answer was given other than "Not connected to the illness."
I tested my sleep patterns, tried to find my REM cycles, slept more, slept less, took natural vitamins on top of the regular treatment, and still felt lost and fatigued. I felt - and still occasionally feel- trapped and lost inside of my own mind. Somehow, it feels like I am peering through the back of my head into my eyes. I also have no history of ADD/ADHD.
Until now, I was nearly convinced (by others) that these symptoms were not symptoms at all.
So - thank you Jocelyn and thank you Kathleen. The blog has already caused me to re-evaluate the effects and status of my illness.
*Where is he now, you wonder?* I am currently off treatment and use crossfit workouts as my own treatment method. Check it out- it has worked wonders for me. I feel that the less active I am, the more flares I feel oncoming. Also, I am training for the Detroit marathon this October. Let me know if I will see anybody there!
Until next time,
Calvin
High-fives... something that I could not do as recently as a few years ago.
Understand that my story and symptom trail is very similar to both previous posts. And, after reading the Flares post, I have decided to skip all of that part of the story. I choose to skip the history because of the comment (paraphrasing), "In the midst of a flare, I can't get my brain to focus." *Bad pun alert* I am going to focus on that comment. (sorry for that).
Lack of focus- I expressed this feeling to my doctors every time I came in for new treatment, based on my flare-ups. Constant fatigue and lack of concentration were (and are) pervasive in my life. They would only respond, "I don't get any sleep either. I know how you feel." I tried to explain that this was a different feeling from my normal, college fatigue from study binges or late nights out. I even asked them to try and discover an answer during one of my MRI's. No answer was given other than "Not connected to the illness."
I tested my sleep patterns, tried to find my REM cycles, slept more, slept less, took natural vitamins on top of the regular treatment, and still felt lost and fatigued. I felt - and still occasionally feel- trapped and lost inside of my own mind. Somehow, it feels like I am peering through the back of my head into my eyes. I also have no history of ADD/ADHD.
Until now, I was nearly convinced (by others) that these symptoms were not symptoms at all.
So - thank you Jocelyn and thank you Kathleen. The blog has already caused me to re-evaluate the effects and status of my illness.
*Where is he now, you wonder?* I am currently off treatment and use crossfit workouts as my own treatment method. Check it out- it has worked wonders for me. I feel that the less active I am, the more flares I feel oncoming. Also, I am training for the Detroit marathon this October. Let me know if I will see anybody there!
Until next time,
Calvin
Ugh Flares
I would like to express my thanks to Jocelyn for starting this blog, what a great idea!
Background: I am 31, and was diagnosed with Eosinophilic Fasciitis (EF) when I was 15. I was originally told that I could go to school, and lay in bed, and that college was probably not in the cards for me...I went to college, got my MBA last year, and am married with 2 beautiful, healthy boys. I work semi-full time for my family's glass company. I am in management, and am at work about 60% of a week. It works out well so I still have time for the gym, and don't have to rush out on the boys in the morning. And I am with the boys all day Friday, and of course the weekends.
After my first year of being diagnosed and going to physical therapy, I held fairly steady on my regular meds. I competed in show jumping competitions all around the US with my horses, and kept fairly active. I have had a few major flares and a few minor flares. Even after all this time, I am still slow in identifying a flare. I'll notice that I have more pain and stiffness, but usually attribute that to something that I may have done out of the ordinary, and then a few days may turn into a few weeks. Then I realize that it's really bothering me and I'm not sleeping. And we get bloodwork done, and done again...and what I really can't stand is how tired and out of it I feel. I would like to think that I'ma fairly smart individual, but when I am in the midst of a flare, it's like I can't get my brain to focus, and then I feel lazy.
Anyway, I don't want to be a downer, it's just what I'm in the middle of right now. As far as medications, I currently take Relafen (an NSAID), prednisone which we change doses of frequently, always trying to get closer to zero, but never lower than 3mg so far), plaquenil, and flexeril as needed. I also have asthma and allergies, so I have stuff for that too.
Thanks again Jocelyn, for giving me the chance to talk about this a little, or at least get it out of my head!!
Background: I am 31, and was diagnosed with Eosinophilic Fasciitis (EF) when I was 15. I was originally told that I could go to school, and lay in bed, and that college was probably not in the cards for me...I went to college, got my MBA last year, and am married with 2 beautiful, healthy boys. I work semi-full time for my family's glass company. I am in management, and am at work about 60% of a week. It works out well so I still have time for the gym, and don't have to rush out on the boys in the morning. And I am with the boys all day Friday, and of course the weekends.
After my first year of being diagnosed and going to physical therapy, I held fairly steady on my regular meds. I competed in show jumping competitions all around the US with my horses, and kept fairly active. I have had a few major flares and a few minor flares. Even after all this time, I am still slow in identifying a flare. I'll notice that I have more pain and stiffness, but usually attribute that to something that I may have done out of the ordinary, and then a few days may turn into a few weeks. Then I realize that it's really bothering me and I'm not sleeping. And we get bloodwork done, and done again...and what I really can't stand is how tired and out of it I feel. I would like to think that I'ma fairly smart individual, but when I am in the midst of a flare, it's like I can't get my brain to focus, and then I feel lazy.
Anyway, I don't want to be a downer, it's just what I'm in the middle of right now. As far as medications, I currently take Relafen (an NSAID), prednisone which we change doses of frequently, always trying to get closer to zero, but never lower than 3mg so far), plaquenil, and flexeril as needed. I also have asthma and allergies, so I have stuff for that too.
Thanks again Jocelyn, for giving me the chance to talk about this a little, or at least get it out of my head!!
My Hips Don't Lie
I hope this blog will inspire, comfort, and document the experiences of people like me who are fighting an auto immune disease. Personally, I also want this blog to keep my friends & family up to date on my health even though it unfortunately (and fortunately) doesn't change often enough. This blog will guide, advise, support, comfort, and grow...thanks for reading :)
20 years old, female, from CT, diagnosed at 12, main symptoms: very limited joint mobility (entire body), skin discoloration, main doctor: Frank (NY). Occupation: college student
It's impossible to know where to begin so I'll start with the present moment which is my motivation behind creating this blog. Today I had an acupuncture treatment (about my 9th or so of the summer) and I told the doctor (zhang) to focus on my hips since I had noticed during a yoga class recently how incredibly tight mine were. He started to stretch my legs/hips in different directions to see what he was dealing with. Zhang began putting the needles in my heads, hands, wrist, legs, and lastly my feet. It hurt as usual, some needles more than others, but with the company of my friend David in the room I stayed calmer than usual. I didn't shed a tear (HOORAY!) and Zhang began moving my hips as he moved the needles a little and worked his magic. It was obvious to him and David that my hips were becoming looser at that very moment. I wasn't 100% convinced but of course I was in the room, enduring this treatment that i dread each week, because I believe in this treatment and have seen unbelievable results from it. Despite a long day, after returning to NYC I had the unusual motivation to go to a gym class-eager to see if my body felt different. I decided to go to the total body conditioning class on 80th and broadway. the class was great. i felt awesome, i was even dancing to the music. i started to notice my leg was able to be raised higher straight and closer to my head than it could before. then i felt it was easier to do lunges something i've been struggling with the past few weeks in these gym classes. then i realized before the end of the class that i could sit with my butt on my heels-something i absolutely have not been able to do since before the disease began when i was 12 years old. after the class end i stayed for a few minutes stretching and then thanked the instructor and told him what a great class it was. i told him what i had just discovered but he didn't understand. i left the gym, adrenaline rushing, crying, called my mother, my boyfriend, my ex boyfriend, my best friend, and so forth. on the way home i gripped the cramp in my stomach until i reached the apartment. i tried to find the song i feel like a woman to play on my phone and dance to as i came into the room to greet my roommate. i hadn't felt this excited since i was able to clap my hands for the first time in many years. i started singing the song larger than life in the shower...and dancing...and i think you get the point. one last detail i forgot, i could feel the difference in my strides as i walked home. i never even realized i felt tight when i walked but now i know...I'M FREE!!!
after dozens of treatments with very minimal results, acupuncture has been so impressive and the changes have been immediate.
http://www.zhangsacupuncture.com/
update-8/6/09
i'm not feeling as mobile as i was when i wrote the above post-but at least acupuncture has given me hope that has been lost for many moons :)
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