Every PEACE Of Me~ My Father’s Daughter

 It’s so difficult to have Graves disease. I was diagnosed in 2015.  I knew something was wrong but no one would listen .  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 and barbecue with 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 were leaking. I had numerous ultrasounds and none showed any leaks.  Finally, I found oncologist that ordered a breast MRI and lo and behold they 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 when he said that the silicone ones were completely intact. I said what are you saying, he said “ I call it as I see it”

My radiologist was livid and told him so. She 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 and broke.  Tony was over 300 pounds and 6 foot four and couldn’t find a job.  I had to stretch my budget to feed us and I started experiencing blindness in my left eye at night.   Every eye doctor said it was dry eye .   I knew it wasn’t dry eye.  I was really stuck because I knew something was wrong my body was telling me so I had to figure out what would be the best course of action. My stress just compounded when Tony trying 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 house while experiencing blurriness and couldn’t wear my contacts lenses for long.  

I had  other symptoms such as fatigue, loss of appetite. My doctor would see me every month searching for answers.  I did find out at my last visit . 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.  I kept looking for a doctor to help me and finally after the fourth Opthomologist I came across my guru specialist of Graves’ disease. 

In 2015 I was told I had to have my thyroid removed.  I was very Ill and alone in Virginia.  I had a thyroidectomy  after I returned from my month long trip to Italy.  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 and my eyes issue. Graves is a very complicated autoimmune disorder.  It involves continual  blood work and tweaking of meds . I never do anything simple and my body followed that path.  

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 2015 I had eye decompression surgery in October. 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 . I have a dermatologist now. There have been studies that are presently still going on that show Rituxan has helped enormously .  It’s a chemo medication.  If my levels are in a good range than I can avoid treatments .  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 injections that my dermatologist can inject .  They are steroids .  That would mean a lot injections. I’m trying to become stable with Natural desiccated thyroid medication. Basically pig thyroid. I was really doing  great for a time on synthetic meds when 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 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 change 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 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 specifically my grandmother and my father looking over me, 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 He wants me to have surgery again 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..  We are all going to have bad days and yes there is a different normal for us. Try telling that to a family that doesn’t understand or care. 

I have a four-year-old grandson that I’ve only seen on Skype a few times  and my daughter decided that was enough I didn’t need to see him anymore and she blocked me.  In her exact words “you will never see or speak to Everest again”.

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 here for. 

 I hope It helps in some way to let you know that I’m not going to give up. 🦋

 ~Namaste~