I’M STILL STANDING .. BETTER THAN I EVER DID
It’s so difficult to have Graves’ disease and It’s getting very emotional for me because I have everything that you can think of that most people don’t have when they have Graves’ disease. I was diagnosed in 2015. I knew something was wrong but no one would listen . I had breast cancer 2006 and 2008 with double mastectomy and reconstruction. .Every time I was plagued with strange
symptoms, I did not only not get the right help but I had lost my family and I was alone in a strange town in GA. I had moved from Virginia to Seattle again to be near my daughter and she had no desire to have any relationship. Then my brother John Mastini who I was never close to, begged me to go to Georgia so I went from Seattle to Georgia. Why? I was trying to piece our family back together after such division.
My Dad was hurting for years not just physical but emotional pain. My brother moved from New Jersey to a remote area in Georgia and his teenage kids lived there with their dysfunctional alcoholic mother . My father asked to see the kids over and over but my cold hearted brother would never come to VA. I will tell you when he finally ,
arrived with them my father was already cremated. Yes,
my family might not like me telling my story but it’s all true.
When I arrived in GA I bought a beautiful brick house with everything for a family. I bought it so that. his teenage Kids could be with other kids. I had allot of property with a
barbecue and large fenced back yard. I even had a separate addition just for activities. I thought he would be ecstatic. Instead he went up in my attic without my permission and he put a hole through my ceiling. For no reason. He left so mad, because I told him he needed to have it fixed. When I called him a few days later he said you don’t deserve a house! It left me dumbfounded and angry . He had tricked me to go all the way to Georgia just so that he could reject me. He was living in a disgusting trailer and his son was sleeping on the floor. His daughter was unkind and neither understood the art of conversation.
Years later I kept thinking that I must have cancer again
and I kept thinking my implants was ruptured. I had numerous ultrasounds and none showed any leaks. Finally, I found an oncologist that ordered a breast MRI and lo and behold the found my implants had seeped through and left artifacts of silicone in me. When I had the implants taken out, I had them replaced with saline implants and that was a nightmare because my plastic surgeon basically called me a liar.
He said that the silicone ones were completely intact. I said what are you saying, he said “ I call it as I see it”. Tony would have punched him and I knew I needed to get him out of the office so I ran out shaking and angry.
My radiologist was livid and told him so. She also spoke up
in a conference at UW and told them what had happened to me. The implants had seeped artifacts of silicone inside my chest.
Tony had come to Georgia and unfortunately he
was extremely depressed. I started experiencing blindness in my left eye at night. Every eye doctor in that teeny little town said it was dry eye . I knew it wasn’t dry eye. I knew something was wrong.
My stress just compounded when Tony tried to commit suicide and almost succeeded . The stress was unbearable. He did get help from the VA and then I was alone again trying to sell my huge house while experiencing blurriness. I couldn’t wear my contacts lenses for long. I was experiencing other symptoms such as fatigue, loss of appetite. My doctor saw me every month and I told her something was wrong. I did find out when I left and picked up my records that My thyroid have been low but she missed it. I was livid.
I moved to Virginia again alone . My eyes were really giving me problems and I knew there had to be more to it.
Every Opthomologist I saw said dry eyes, and finally I
was told I had Graves Disease.. When a doctor said I’ll
see you in six months I kept looking for a doctor to help me. Finally, after the fourth Opthomologist I came across the guru of Thyroid Eye disease.
In 2015 I was told I had to have my thyroid removed. I was very ill and alone in Virginia. After a very difficult plane flight and a month in Italy, I had a thyroidectomy. . I have an Endocrinologist now added to my long list of specialists . I was so excited that I thought this is finally getting to the bottom of why I felt so exhausted. My eyes were itchy and hurting. Graves is a very complicated autoimmune disorder. It involves continual blood work and tweaking of meds .
I knew I was sick for many years but never diagnosed
properly. Over last three years I had Solu-Medrol infusion‘severy few months three times a week. They were helping
my eyes but it was a temporary fix. In October 2015 I had eye
decompression surgery. I started getting some swelling in my legs and strange patches of discolored skin. I had the beginnings of Pretibial Myexedma. There is no known cure and it very rare .
There have been studies that are presently still going on that show Rituxan has helped enormously with this condition. I have not tried to get the treatments since it’s almost impossible to have insurance approve it because of the expense. There is also Kenalog and Vitrase steroid injections that my dermatologist can inject. That would mean a lot injections. But I’m trying to do is become stable with Natural desiccated thyroid medication (NDT) Basically pig thyroid.
I was really doing great and I was on my third endocrinologist. They do not like to prescribe NDT. When I asked for it they said I needed to find another doctor. The great thing about NDT is that it encompasses all the T levels and Synthroid and Cytomel are only T3 and T4. Believe me I didn’t know what that meant either. I was doing great on the NDT and then they changed the formula and I had to go back to finding another NDT. There’s so much more to this
disease including weight loss or gain, Graves rage, depression. The purpose of relaying my story is so that others can be cognizant that there are other treatments besides synthetic medication.
Here’s where I am as of a week ago. I woke up and I felt my
eye itching and started to rub it and my eye was bulging out and I don’t know how I remained sane. I really feel like
there were angels watching over me (specifically my grandmother and my father ) because I knew exactly what to do all the while coming apart inside. I slowly pushed my eye back in without closing my eye which was what the doctor said was the best thing I
could’ve done.
Now here’s the worst part, I have to have another surgery only this time it’s a lateral surgery on my left eye and it involves removing
soft bone and I will have stitches .
I want everyone to know that I’ve had more than one doctor tell me that I know my body better than anybody they have ever met. If we listen we can really hear and feel what’s going on with our body. Today was a bad day for me . We are all going to have bad days and yes there is a different normal for us.
I want to encourage people to write their stories because it’s so cathartic. Believe me this is just a synopsis. We are all warriors when we have Graves disease and we should all be very proud of ourselves.
I can not give up. We cannot give up.
I’m alive and I’m here for a reason just like all of you are. I hope It helps in some way to let you know that I’m not going to give up. 🦋
~Namaste~
symptoms, I did not only not get the right help but I had lost my family and I was alone in a strange town in GA. I had moved from Virginia to Seattle again to be near my daughter and she had no desire to have any relationship. Then my brother John Mastini who I was never close to, begged me to go to Georgia so I went from Seattle to Georgia. Why? I was trying to piece our family back together after such division.
My Dad was hurting for years not just physical but emotional pain. My brother moved from New Jersey to a remote area in Georgia and his teenage kids lived there with their dysfunctional alcoholic mother . My father asked to see the kids over and over but my cold hearted brother would never come to VA. I will tell you when he finally ,
arrived with them my father was already cremated. Yes,
my family might not like me telling my story but it’s all true.
When I arrived in GA I bought a beautiful brick house with everything for a family. I bought it so that. his teenage Kids could be with other kids. I had allot of property with a
barbecue and large fenced back yard. I even had a separate addition just for activities. I thought he would be ecstatic. Instead he went up in my attic without my permission and he put a hole through my ceiling. For no reason. He left so mad, because I told him he needed to have it fixed. When I called him a few days later he said you don’t deserve a house! It left me dumbfounded and angry . He had tricked me to go all the way to Georgia just so that he could reject me. He was living in a disgusting trailer and his son was sleeping on the floor. His daughter was unkind and neither understood the art of conversation.
Years later I kept thinking that I must have cancer again
and I kept thinking my implants was ruptured. I had numerous ultrasounds and none showed any leaks. Finally, I found an oncologist that ordered a breast MRI and lo and behold the found my implants had seeped through and left artifacts of silicone in me. When I had the implants taken out, I had them replaced with saline implants and that was a nightmare because my plastic surgeon basically called me a liar.
He said that the silicone ones were completely intact. I said what are you saying, he said “ I call it as I see it”. Tony would have punched him and I knew I needed to get him out of the office so I ran out shaking and angry.
My radiologist was livid and told him so. She also spoke up
in a conference at UW and told them what had happened to me. The implants had seeped artifacts of silicone inside my chest.
Tony had come to Georgia and unfortunately he
was extremely depressed. I started experiencing blindness in my left eye at night. Every eye doctor in that teeny little town said it was dry eye . I knew it wasn’t dry eye. I knew something was wrong.
in a conference at UW and told them what had happened to me. The implants had seeped artifacts of silicone inside my chest.
Tony had come to Georgia and unfortunately he
was extremely depressed. I started experiencing blindness in my left eye at night. Every eye doctor in that teeny little town said it was dry eye . I knew it wasn’t dry eye. I knew something was wrong.
My stress just compounded when Tony tried to commit suicide and almost succeeded . The stress was unbearable. He did get help from the VA and then I was alone again trying to sell my huge house while experiencing blurriness. I couldn’t wear my contacts lenses for long. I was experiencing other symptoms such as fatigue, loss of appetite. My doctor saw me every month and I told her something was wrong. I did find out when I left and picked up my records that My thyroid have been low but she missed it. I was livid.
I moved to Virginia again alone . My eyes were really giving me problems and I knew there had to be more to it.
Every Opthomologist I saw said dry eyes, and finally I
was told I had Graves Disease.. When a doctor said I’ll
I moved to Virginia again alone . My eyes were really giving me problems and I knew there had to be more to it.
Every Opthomologist I saw said dry eyes, and finally I
was told I had Graves Disease.. When a doctor said I’ll
see you in six months I kept looking for a doctor to help me. Finally, after the fourth Opthomologist I came across the guru of Thyroid Eye disease.
In 2015 I was told I had to have my thyroid removed. I was very ill and alone in Virginia. After a very difficult plane flight and a month in Italy, I had a thyroidectomy. . I have an Endocrinologist now added to my long list of specialists . I was so excited that I thought this is finally getting to the bottom of why I felt so exhausted. My eyes were itchy and hurting. Graves is a very complicated autoimmune disorder. It involves continual blood work and tweaking of meds .
I knew I was sick for many years but never diagnosed
I knew I was sick for many years but never diagnosed
properly. Over last three years I had Solu-Medrol infusion‘s
every few months three times a week. They were helping
my eyes but it was a temporary fix. In October 2015 I had eye
decompression surgery. I started getting some swelling in my legs and strange patches of discolored skin. I had the beginnings of Pretibial Myexedma. There is no known cure and it very rare .
There have been studies that are presently still going on that show Rituxan has helped enormously with this condition. I have not tried to get the treatments since it’s almost impossible to have insurance approve it because of the expense. There is also Kenalog and Vitrase steroid injections that my dermatologist can inject. That would mean a lot injections. But I’m trying to do is become stable with Natural desiccated thyroid medication (NDT) Basically pig thyroid.
I was really doing great and I was on my third endocrinologist. They do not like to prescribe NDT. When I asked for it they said I needed to find another doctor. The great thing about NDT is that it encompasses all the T levels and Synthroid and Cytomel are only T3 and T4. Believe me I didn’t know what that meant either. I was doing great on the NDT and then they changed the formula and I had to go back to finding another NDT. There’s so much more to this
disease including weight loss or gain, Graves rage, depression. The purpose of relaying my story is so that others can be cognizant that there are other treatments besides synthetic medication.
my eyes but it was a temporary fix. In October 2015 I had eye
decompression surgery. I started getting some swelling in my legs and strange patches of discolored skin. I had the beginnings of Pretibial Myexedma. There is no known cure and it very rare .
There have been studies that are presently still going on that show Rituxan has helped enormously with this condition. I have not tried to get the treatments since it’s almost impossible to have insurance approve it because of the expense. There is also Kenalog and Vitrase steroid injections that my dermatologist can inject. That would mean a lot injections. But I’m trying to do is become stable with Natural desiccated thyroid medication (NDT) Basically pig thyroid.
I was really doing great and I was on my third endocrinologist. They do not like to prescribe NDT. When I asked for it they said I needed to find another doctor. The great thing about NDT is that it encompasses all the T levels and Synthroid and Cytomel are only T3 and T4. Believe me I didn’t know what that meant either. I was doing great on the NDT and then they changed the formula and I had to go back to finding another NDT. There’s so much more to this
disease including weight loss or gain, Graves rage, depression. The purpose of relaying my story is so that others can be cognizant that there are other treatments besides synthetic medication.
Here’s where I am as of a week ago. I woke up and I felt my
eye itching and started to rub it and my eye was bulging out and I don’t know how I remained sane. I really feel like
there were angels watching over me (specifically my grandmother and my father ) because I knew exactly what to do all the while coming apart inside. I slowly pushed my eye back in without closing my eye which was what the doctor said was the best thing I
eye itching and started to rub it and my eye was bulging out and I don’t know how I remained sane. I really feel like
there were angels watching over me (specifically my grandmother and my father ) because I knew exactly what to do all the while coming apart inside. I slowly pushed my eye back in without closing my eye which was what the doctor said was the best thing I
could’ve done.
Now here’s the worst part, I have to have another surgery only this time it’s a lateral surgery on my left eye and it involves removing
soft bone and I will have stitches .
I want everyone to know that I’ve had more than one doctor tell me that I know my body better than anybody they have ever met. If we listen we can really hear and feel what’s going on with our body. Today was a bad day for me . We are all going to have bad days and yes there is a different normal for us.
I want to encourage people to write their stories because it’s so cathartic. Believe me this is just a synopsis. We are all warriors when we have Graves disease and we should all be very proud of ourselves.
I can not give up. We cannot give up.
I’m alive and I’m here for a reason just like all of you are. I hope It helps in some way to let you know that I’m not going to give up. 🦋
~Namaste~
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