This story was previous published on Rare Revolution Magazine for their week of Acromegaly information and stories leading up to November First. The Official Acromegaly Awareness Day. This is the first time an organization has done something so amazing for Acromegaly Patients. Check them out. Follow on Ig and leave comments!
I am not new to telling my story – I started with blog interviews circa 2009 while taking about my handmade cards. What’s a graphic designer, artist and rare disease patient supposed to do! For me, I must create.
But I’ll back up a bit. When I was 20 I had my first migraine. It was at the back of my head. The sinus infection that seemingly caused it went away but the migraine never did.
After graduating with a BA in graphic design I moved to Boston. Migraines and neck pain plagued me daily. I was diagnosed with PCOS (this proved incorrect) and insulin resistance. It needs to be stated that these symptoms and others under metabolic syndrome are often, precursors to acromegaly. Until the medical community starts testing for acromegaly when a patient continues to feel unwell and not responding to medications it’s time for some extensive bloodwork and a contrast MRI.
However, in the past 24 years not much has changed. From the age of 22 to 27 I was told that there was nothing wrong, my pain was caused by depression. That statement still causes anger to rise. But I have a good sense of humor… It was “all in my head.”
When I was 27, after seeing a plethora of doctors and having been officially “retired” for two years, I found a Godsend. A doctor, who on the first visit knew I had a pituitary tumor. I had never heard of a pituitary tumor… by the third visit he had the proof.
In 2005 I was diagnosed with a prolactinoma. In 2007 it was re-diagnosed as a dual secreting tumor. The growth hormone (GH) presented itself. In April 2007 I had transphenoidal pituitary surgery. Although they removed all of the tumor my numbers did not return to normal. This led to five years of injections 3/day. The 1/month injection was available but I desperately wanted to have children so it was not an option. A child was not to be. Oddly, on January 1, 2012 I had one of the worst migraines of my life. It did not let up for 9 months. Three months in, it was time for a GH check (igf1). For the first time in five years the medication was not holding the growth hormone at bay. The dose was raised twice. It did not work. By the summer of 2012, having never been pregnant, I was asked to consider radiation. I agreed. For six weeks I went for targeted pituitary radiation. It’s an average of 8 to 10 years to know if radiation worked. After radiation I began the once/month injection’s. It can be hard on your gallbladder. In May of 2018 I experienced a hellish infection, gallbladder removal, hospital stay and home recovery. Thankfully, I no longer needed the injection. Radiation had worked in six years instead of the average 8 to 10!
I cannot forget to add that although I don’t look like I have acromegaly to most, my jaw and tongue did grow out and to the right. In December 2017 I had my jaw broken. I spent 4 years in braces. The perfect surgeon put acromegaly as the number one reason for surgery. This is key. I realized years ago that I constantly bit my tongue on the right side. This was pushing my teeth outward. In October of 2018 I had RF ablation of my tongue. In essence, they electrocuted my tongue to cause shrinkage. This needs to be repeated but last year was a rough year, so I thought, covid halted everything.
It’s been two years since my husband and I relocated back north from North Carolina. In New York, I had to start over. I am technically in “remission” but late diagnosis opens the door for more illness. Acromegaly patients are all very different. For me my constant is pain. This pain moves which is not normal. So most doctors do not believe me. I’ve been dismissed by many specialists but I have found a few trying to help. Last year I received a new diagnosis. Small Fiber Neuropathy (SFN). Ah-ha! This is why my pain moves. I was diagnosed with a thigh and ankle skin biopsy. The facts cannot be disputed. But other odd symptoms, itchy legs, neuropathic itchy legs to be more precise… This feels like insanity. My third of four neurologists last year was a sleep specialist. He looked at me funny. I thought, oh-no another disbeliever. But he waited, listened and came back with SFN caused restless leg syndrome. My sleep has been a major issue for so long but I do not have typical RLS. More often than not I fall into the lower percentages of everything. The skin on my legs was a mess and I was so itchy! A dermatologist went above and beyond to figure out what could help calm an itch that wasn’t really there. The neurologist, well she was fired. You cannot be afraid of firing doctors and keep searching…
The diagnosis of Small Fiber Neuropathy lead to IV ketamine infusion treatments. This helps. But I realized that a massage before- hand and afterward made it 10 times more beneficial. My pain management specialist at Memorial Sloan Kettering Cancer Center in New York City has stated it a different way, he said that the Ketamine was helping the Massage not the other way around. I have had the worst year either ever or comparable to the worst year due to coronavirus shut downs. My alternative therapies were removed and ketamine alone gives me a day of rest and about three days of relief. I have new areas of pain that are paralyzing. I have never been in so much distress through all of this. Late diagnosis is cruel. The shut down has devastated me, possibly for life. My pain management doctor is not sure if I can ever get back to where I was… which was not very good in the first place. Time to start searching for autoimmune diseases again. I continue to fight on.
Why? Why is this my life? I do not know. But I am tenacious. I will never lose hope. I have faith. I choose to fight.
I am technically in “remission” from acromegaly but I am fighting for the movement I am losing. I am fighting for quality-of-life. I am fighting for all those with late diagnosis and all the diseases, syndromes and symptoms this causes.
I advocate. I speak the truth. It starts with knowing the word acromegaly and being able to pronounce it. Know that it is a pituitary tumor producing excess growth hormone. Know that even though you search and find only images of giants this is not what we look like. That is the late diagnosis. It is a gross misrepresentation and causes the “doctor check list” to not include Metabolic Syndrome. Researchers have much work to do but it is not prioritized. I know there is a “pre-acromegaly” diagnosis but it must be found and documented. I was sick for 10 years with a tumor, not one outward sign of growth but inside is a different story. Why is research not being done?
My surgeon in 2007 told me it is not “cancer“ but make no mistake it is a cancer — it affects every system of your body. He added I would have to fight for the respect a patient with a cancer diagnosis receives. 12 years later that is still my undeniable truth.
I share my story hoping people will not feel alone. That they will not stop fighting for their best life.
And through it all don’t forget to live. My life is my husband and my art and advocating. I am rare. I will be heard.
I have so much more to say. After this post we decided to move. I miss New York City and God Willing it will return to GLORY! I have much schooling to do and doctors to manage. We are in Rochester, NY. My momma’s hometown. Nana just turned 94. He sister 91. Cousins around the corner. Bigger place, less rent. Doctor problems are getting worse and are my pain problems. Arrogance will be addressed. But ending on a positive note Rochester has TONS of alternative therapies I’ve always wanted to try, have always been recommended by doctors but they had no where to send me or pricing was only for wealthy. So much to say and tell about 2020 too. It needs saying. This year has been UNACCEPTABLE and I do not ACCEPT it.
On this, Christmas Eve, Merry Christmas. Always know the Reason for the Season. It is Christ, Our Savior.
I am blessed.
#raredisease #rarerevolution #acromegaly