My Life With Scleroderma
I have Scleroderma... Most people don't know what that is, and have never heard of it. That is because it doesn't have a celebrity out there talking about it like other major diseases. I was diagnosed with this at 9 years old. It has been a crazy bumpy road and I will continue to be on it. There is no cure for this disease, which is super frustrating! I figured i would share this part of my life with you here since i share so many other things with you all.
First off Scleroderma means hardening of the skin. This is a autoimmune disease that effects the skin and other organs of the body. It's a disease that causes hardening and tightening of the skin and connective tissue. The short of it is your body is over producing way to much collagen;which is a thick scar like tissue that covers your blood vessels, organs and skin. That can cause your skin to split from being so tight, or your organs to stop function from being restricted, and you are at risk of losing limb because of the lack of blood flow to certain areas of your body. The symptoms are different in each person which makes it a difficult to diagnose and understand. Some people have mild symptoms and others it might be life threatening. Women who are between the ages of 25-50 are at my risk. It is a rare disease and the cause is still unknown why people are getting this.
There are two types of scleroderma
localized- only effects the skin tissues and won't harm the organs.
Systemic- effects the skin, and vital organs.
That is a very basic description of each type.
There is no medication that will stop this disease and make it go away, but the doctor can put you on meds to help with the symptoms you are having.
Here is a little back history of my life. Since i was so young when i was diagnosed i only remember pieces of what all happened. So as a adult and asking questions to my parents and grandparents about why i did this or that and I am slowly piecing it all together.
Apparently my mom brought me to the family doctor many times as a kid for stuff that i was having or doing that was not normal and they couldn't figure out what it was. My grandma accidentally went to a class on scleroderma she thought she was going to a arthritis class and as she was listening to this speaker and a light bulb went off in her head and said that is what she has and had my mom take me back in and he got out his book and did blood work and said yep she shows all the signs. I was then sent to a specialist and there began my journey. Can you believe how amazing that is? God placed my grandma in the right room to hear that speaker and help diagnose me. As a kid I always had trouble opening house doors, zippering my pants and so many simple things because the strength in my hands was not there.
I began seeing Dr. Glasser at the children's hospital i think each month. As a kid it felt like you were always going there, and it didn't help that it was over a hour away from where we lived. He would preform many different strength test and to see how i was doing and there was always tons of blood work each visit. At some point i had to do physical therapy with my hands and then they made these plastic molds to wear at bedtime. I think it was to help straighten my hands out, I do know i really hated wearing them they went up to my elbows and down to my fingers. What kid wants to wear that! I have such long skinny fingers but each finger was never straight. The skin was tight and shiny looking, not the average 9 year old hands. I was put on tons of different medications to swallow and let me tell you i was terrible at swallowing them. They tried every method of how to get those down my throat. It took awhile but i finally got it.
Over time my symptoms went away and i was able to get off my medication by the time i was a teen ager. We thought it was gone forever. I wish i could say that was true but unfortunately it has just returned. I am now 32! It crazy that i had that long of a break. I was able to go to college, be a hair stylist, wife, have 3 children in that time frame. Now that is a blessing in itself. I was able to experience so many things in the time, and not have to worry about my hands. I started getting really stiff fingers after doing sewing projects, painting, or even cleaning the house and at first i didn't think twice about it and then it dawned on me this must be the return of my scleroderma. After many months of trying to be in denial about it i went to my regular doctor because i figured i needed a referral since my last hand dr. only handled kids. She gave me my referral but when i called to make a appointment it was a 3 or so month long waiting list. In the mean time i was researching and I even call Dr. Glasser to see if he recommend anyone and to get my files. Unfortunately his files he no longer had because of the time it has been and the moving of offices. Paper files are becoming obsolete. My grandma was so sweet to call my old childhood clinic and some how convinced them to send me my old paperwork. I tried calling them and they told me they were destroyed. I talked to multiple people in that office and they all told me the same thing, but i guess you don't mess with a grandma on a mission. My records arrived to my house and I was able to read through them. That was very interesting and fun at the same time. I learned a lot about myself. Every time i saw Dr. Glasser he sent a report to my primary doctor so i had a lot of info. still available. I wanted to be able to have those records to give to my new rheumatologist so she would get background info on me and what all has happened. So in the months that i was waiting to go see my new doctor i began researching what this is. As a kid you just understand the symptoms and inconvenience of what you are having to deal with, but not what the disease is about and how it is going to affect you long term. I have to say what i was reading was scary, and hard to process. The information has advanced so much since i was a kid to
I met with the specialist and we talked about what bothering me and did a full body check and recommend i go on 200 mg of plaquenil twice a day. She also said it would take 3 months to start noticing any difference and 6 months to really notice it working. I go every 3 months to see if any changes have occurred and for her to check me all over. I also have learned that i have the systemic scleroderma. She said i must have given my parents a big scare as a kid, being diagnosed when i was so young. As a mother now, i bet they felt horrible and helpless and very worried. Because that how i feel when my kids are going through a life changing health news.
My hands have a sore aching pain to them everyday. The mornings and evenings tend to be the worse times, and somedays are worse then others; but you have to roll with it anyway. It's hard to complain to others because if you look at me you wouldn't think anything was wrong with me. My right hand seems to be affected more then the left, which makes it hard because I'm right handed. My fingers tend to be curled into a c position because that feels the most comfortable. Simple task you do everyday may take longer then normal to finish. Examples- opening jars, or lids to water bottles, typing on my computer hurts my hands, sewing, coloring or doodling, holding the steering wheel, brushing hair, lifting weights at the gym etc etc. I have also been getting more calcium deposit around my body. They are like hard bumps that pop up on your skin that don't go away. I have had a few removed as a kid because they were on my hands but so far they have only appeared on my arms and legs this time.
I also have the Raynauds which is hard because i live in a cold climate. My toes and fingers are always freezing even when i am in the house. I wear socks with slippers all day around the house and I even sleep with my socks on all night because my feet are as cold as ice. I have thick gloves i wear every time i go outside because if i don't it feels like I'm holding ice and they will burn. They also turn weird colors like purple and white because it's not getting proper circulation to that area. This past month my nose has been going numb through out the day and the doctor thinks it might have the Raynauds in my nose too. It is the weirdest feeling having your nose go in and out of being numb. You make funny faces because it feels weird.
I have been put on predisone for the times i have super bad flare ups. My flare ups feel like i slammed my hand in the door and it throbs. It starts with one joint and then spreads to the rest of the hand, and usually goes up my arm. I really don't enjoy taking that steroid but it calms it back down and makes it more tolerable. This last time i was on it i think the predisone was messing with my heart rate it would cause it to race for a long period of time and then go back to normal and repeat a few times a day. Yay for side effects!
My asthma has seem to return which i have not had to deal with since i was little. I have to use my inhaler ever time i work out now and sometimes even when i am not doing anything my breathing gets hard to breath. I have also been having a hard time with heart burn every time i eat i get it. It makes you not want to eat because you know it's coming not long after. I read that its called GERD gastroesophageal reflux disease and that its common with scleroderma. So that is now on the list to talk to the doctor when i see her next.
I have so many things that pop up related to health and i never know which doctor call. Do i call my primary doctor, rheumatologist, ent doctor, podiatrist and so on. It's frustrating.
I am just pray that it will stay the same, or go away and this doesn't cause my health to get worse i don't want to be in a position where i need someone to take care of me. I am independent and busy person who likes to do stuff and the thought of not being able to scares me. I would love for them to find a cure on this disease and something to stop it. I don't want this disease to take my life or anyone elses. This post is not meant to be a oh poor pity me but as a informative piece on what i have. Many people don't understand what it is. I don't even think i scratched the surface on what all sceroderma is because it's still being figured out and the doctors don't even have all the answers. Each person that has this disease is going through so many different symptoms and different medications to help them deal with it. So be kind to people because you just don't always know. I am glad i am not walking alone i have the support of my family and most of all i have the peace of God with me because the days when i am feeling low and hurting i draw strength through him. The reassurance that he loves me and is with me is something no one should be without. I believe he gives us these uncontrollable situations to teach us or to be a light on to it.
Here is a song i love its simple but yet so powerful.
First off Scleroderma means hardening of the skin. This is a autoimmune disease that effects the skin and other organs of the body. It's a disease that causes hardening and tightening of the skin and connective tissue. The short of it is your body is over producing way to much collagen;which is a thick scar like tissue that covers your blood vessels, organs and skin. That can cause your skin to split from being so tight, or your organs to stop function from being restricted, and you are at risk of losing limb because of the lack of blood flow to certain areas of your body. The symptoms are different in each person which makes it a difficult to diagnose and understand. Some people have mild symptoms and others it might be life threatening. Women who are between the ages of 25-50 are at my risk. It is a rare disease and the cause is still unknown why people are getting this.
There are two types of scleroderma
localized- only effects the skin tissues and won't harm the organs.
Systemic- effects the skin, and vital organs.
That is a very basic description of each type.
There is no medication that will stop this disease and make it go away, but the doctor can put you on meds to help with the symptoms you are having.
Here is a little back history of my life. Since i was so young when i was diagnosed i only remember pieces of what all happened. So as a adult and asking questions to my parents and grandparents about why i did this or that and I am slowly piecing it all together.
Apparently my mom brought me to the family doctor many times as a kid for stuff that i was having or doing that was not normal and they couldn't figure out what it was. My grandma accidentally went to a class on scleroderma she thought she was going to a arthritis class and as she was listening to this speaker and a light bulb went off in her head and said that is what she has and had my mom take me back in and he got out his book and did blood work and said yep she shows all the signs. I was then sent to a specialist and there began my journey. Can you believe how amazing that is? God placed my grandma in the right room to hear that speaker and help diagnose me. As a kid I always had trouble opening house doors, zippering my pants and so many simple things because the strength in my hands was not there.
I began seeing Dr. Glasser at the children's hospital i think each month. As a kid it felt like you were always going there, and it didn't help that it was over a hour away from where we lived. He would preform many different strength test and to see how i was doing and there was always tons of blood work each visit. At some point i had to do physical therapy with my hands and then they made these plastic molds to wear at bedtime. I think it was to help straighten my hands out, I do know i really hated wearing them they went up to my elbows and down to my fingers. What kid wants to wear that! I have such long skinny fingers but each finger was never straight. The skin was tight and shiny looking, not the average 9 year old hands. I was put on tons of different medications to swallow and let me tell you i was terrible at swallowing them. They tried every method of how to get those down my throat. It took awhile but i finally got it.
Over time my symptoms went away and i was able to get off my medication by the time i was a teen ager. We thought it was gone forever. I wish i could say that was true but unfortunately it has just returned. I am now 32! It crazy that i had that long of a break. I was able to go to college, be a hair stylist, wife, have 3 children in that time frame. Now that is a blessing in itself. I was able to experience so many things in the time, and not have to worry about my hands. I started getting really stiff fingers after doing sewing projects, painting, or even cleaning the house and at first i didn't think twice about it and then it dawned on me this must be the return of my scleroderma. After many months of trying to be in denial about it i went to my regular doctor because i figured i needed a referral since my last hand dr. only handled kids. She gave me my referral but when i called to make a appointment it was a 3 or so month long waiting list. In the mean time i was researching and I even call Dr. Glasser to see if he recommend anyone and to get my files. Unfortunately his files he no longer had because of the time it has been and the moving of offices. Paper files are becoming obsolete. My grandma was so sweet to call my old childhood clinic and some how convinced them to send me my old paperwork. I tried calling them and they told me they were destroyed. I talked to multiple people in that office and they all told me the same thing, but i guess you don't mess with a grandma on a mission. My records arrived to my house and I was able to read through them. That was very interesting and fun at the same time. I learned a lot about myself. Every time i saw Dr. Glasser he sent a report to my primary doctor so i had a lot of info. still available. I wanted to be able to have those records to give to my new rheumatologist so she would get background info on me and what all has happened. So in the months that i was waiting to go see my new doctor i began researching what this is. As a kid you just understand the symptoms and inconvenience of what you are having to deal with, but not what the disease is about and how it is going to affect you long term. I have to say what i was reading was scary, and hard to process. The information has advanced so much since i was a kid to
I met with the specialist and we talked about what bothering me and did a full body check and recommend i go on 200 mg of plaquenil twice a day. She also said it would take 3 months to start noticing any difference and 6 months to really notice it working. I go every 3 months to see if any changes have occurred and for her to check me all over. I also have learned that i have the systemic scleroderma. She said i must have given my parents a big scare as a kid, being diagnosed when i was so young. As a mother now, i bet they felt horrible and helpless and very worried. Because that how i feel when my kids are going through a life changing health news.
My hands have a sore aching pain to them everyday. The mornings and evenings tend to be the worse times, and somedays are worse then others; but you have to roll with it anyway. It's hard to complain to others because if you look at me you wouldn't think anything was wrong with me. My right hand seems to be affected more then the left, which makes it hard because I'm right handed. My fingers tend to be curled into a c position because that feels the most comfortable. Simple task you do everyday may take longer then normal to finish. Examples- opening jars, or lids to water bottles, typing on my computer hurts my hands, sewing, coloring or doodling, holding the steering wheel, brushing hair, lifting weights at the gym etc etc. I have also been getting more calcium deposit around my body. They are like hard bumps that pop up on your skin that don't go away. I have had a few removed as a kid because they were on my hands but so far they have only appeared on my arms and legs this time.
I also have the Raynauds which is hard because i live in a cold climate. My toes and fingers are always freezing even when i am in the house. I wear socks with slippers all day around the house and I even sleep with my socks on all night because my feet are as cold as ice. I have thick gloves i wear every time i go outside because if i don't it feels like I'm holding ice and they will burn. They also turn weird colors like purple and white because it's not getting proper circulation to that area. This past month my nose has been going numb through out the day and the doctor thinks it might have the Raynauds in my nose too. It is the weirdest feeling having your nose go in and out of being numb. You make funny faces because it feels weird.
I have been put on predisone for the times i have super bad flare ups. My flare ups feel like i slammed my hand in the door and it throbs. It starts with one joint and then spreads to the rest of the hand, and usually goes up my arm. I really don't enjoy taking that steroid but it calms it back down and makes it more tolerable. This last time i was on it i think the predisone was messing with my heart rate it would cause it to race for a long period of time and then go back to normal and repeat a few times a day. Yay for side effects!
My asthma has seem to return which i have not had to deal with since i was little. I have to use my inhaler ever time i work out now and sometimes even when i am not doing anything my breathing gets hard to breath. I have also been having a hard time with heart burn every time i eat i get it. It makes you not want to eat because you know it's coming not long after. I read that its called GERD gastroesophageal reflux disease and that its common with scleroderma. So that is now on the list to talk to the doctor when i see her next.
I have so many things that pop up related to health and i never know which doctor call. Do i call my primary doctor, rheumatologist, ent doctor, podiatrist and so on. It's frustrating.
I am just pray that it will stay the same, or go away and this doesn't cause my health to get worse i don't want to be in a position where i need someone to take care of me. I am independent and busy person who likes to do stuff and the thought of not being able to scares me. I would love for them to find a cure on this disease and something to stop it. I don't want this disease to take my life or anyone elses. This post is not meant to be a oh poor pity me but as a informative piece on what i have. Many people don't understand what it is. I don't even think i scratched the surface on what all sceroderma is because it's still being figured out and the doctors don't even have all the answers. Each person that has this disease is going through so many different symptoms and different medications to help them deal with it. So be kind to people because you just don't always know. I am glad i am not walking alone i have the support of my family and most of all i have the peace of God with me because the days when i am feeling low and hurting i draw strength through him. The reassurance that he loves me and is with me is something no one should be without. I believe he gives us these uncontrollable situations to teach us or to be a light on to it.
Here is a song i love its simple but yet so powerful.
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