I had no intention of not writing here, in this space. I’m am ready to come back starting with posting WEGO Health’s 2019 Acromegaly Awareness post. It will quickly have a follow up because who knew…
Acromegaly Awareness: You’re Very Complicated
To celebrate and recognize Acromegaly Awareness Day, we asked Patient Leader Kara LaFrance to share her acromegaly story. We invite you to share your own acromegaly story on social media as well. The more that we can share stories and information about acromegaly, the more we can raise awareness and help each other!
You’re Very Complicated
By: Kara LaFrance
Every doctor for the past 15 years has stated: “you’re very complicated.”
Yes, yes I am.
It doesn’t change as time goes on, in fact, it gets worse. After the original acromegaly treatments are dusty memories, I am still a full-time patient.
In the last 12 years there are so many memories, I let them get dusty and that isn’t a bad thing. Transsphenoidal Pituitary Surgery, six weeks of radiation, 11 years of injections, surgically breaking my jaw to be realigned, RF ablating my tongue to shrink the growth, the secondary adrenal insufficiency that was caused by a doctor being patronizing about the ridiculous weight gain which in reality my radiated pituitary coupled with steroid injections every 6 weeks for pain caused Cushingoid syndrome. When you know something is wrong and your doctor won’t listen — find a new doctor. So I did. And to round off my list, gall bladder removal. Acro-meds seem to be rough on the gallbladder. It took 11 years for me, which I’m very grateful that I had that time, but when it went it took me down. Severe infection and a week in the hospital in May 2018.
When all was said and done and my body had time to adjust my iGF1 was tested. I became technically in remission and no longer in need of the medication!! Radiation had finally shown that it worked for me and the injections gave me the time to wait it out. The average time is 8 to 10 years. Mine took six. I will take that win!
Last year was a tough year. Then a new job for my husband brought us back north in a quick one month turnaround. You’d think starting over with new doctors wouldn’t be too bad when this has been your life for two decades. My symptoms started 23 years ago at the age of twenty. The early symptoms typically fall under metabolic syndrome – I had at least four. The doctors insisted it was merely depression. Pain does not equal a depression diagnosis. Late diagnosis of Acromegaly is the norm. This is unacceptable.
So here I am, at one of America’s medical epicenters, New York City. I have had over 40 specialist, radiology, lab and treatment appointments since March. It is too many.
I have an expert and wonderful pituitary endocrinologist and a neurologist who actually goes above and beyond.
I have had to be THAT patient (we should all be THAT patient) and call the patient advocate at one hospital when spoken to in an unacceptable manner. Some people are uncomfortable doing this, but I deserve better. We all deserve better. This led to the chief of medicine calling me and making things right. It took a month from start to finish but it was well worth it.
Being “too complicated” needs to be acknowledged and the doctor you’re in front of needs the ability to admit when you are too complicated for them rather than dismissing you. They need to look into finding someone who can help you. This should be the norm not the exception.
This year brought an added diagnosis of Small Fiber Neuropathy (SFN), which has a few ways of being diagnosed but only one is definitive (this means doctors will believe you). The thigh and ankle biopsy. Remember, I am complicated so instead of pain on my legs I have neuropathic itch. I did not realize how an itch that’s not actually “real” can drive you insane. No relief yet. Some relief with organic salves and organic diaper cream – Yep, I’m coating my legs with baby butt balm. Acromegaly has a higher rate of autoimmune issues occurring as time goes on. I have a plenty of symptoms but testing is not yet a perfected science. So nothing has popped. If it did, SFN could be treated with IVIG but without an autoimmune diagnosis it’s a no-go.
I have been dismissed for the same reason by the rheumatologist and the SFN neurologist. The neurologist who is a sleep specialist diagnosed me with Restless leg syndrome (RLS). Not because my legs are restless but because of the itch – he claims it was caused by the SFN. I have no reason not to agree but all my other specialist basically roll there eyes at this… so what am I to do? In the scheme of things it falls under small fiber neuropathy so I’m covered.
I’ve had four neurologist since March and last week while at the fourth neurologist of the year (and the one I’m keeping) she asked what I wanted most. I replied, no more specialists, no offense… She chuckled and wrote down number one “no more specialists.” I’m only to see her, my endocrinologist and my pain management doctor. Hallelujah!
I am following through with all the jaw stuff but that’s more straightforward.
It has been an exhausting year. I do love getting reacquainted with New York City. Growing up in North Jersey with my New Yorker dad, made trips into the city part of my childhood. However, the plan wasn’t to start by touring all the major medical centers NYC has to offer but my health…my life, is always worth it. So touring hospitals it is. Don’t get me wrong my husband meets me for the appointment or after and we often grab a bite to eat and take the train home together.
I don’t want to miss out on life – I have fleeting moments of just that… But art and design, just creating, helps me find joy. As a graphic designer I create my own awareness graphics as well as small design jobs. Instagram challenges keep me involved and working on my watercolors. My oil paintings are pure meditation. I’ve been entering my oils into juried shows for the the first time this year. To my delight I have been accepted to more than I could have dreamed.
I want to use my art as a conversation starter because “what do you do?” is a constant question and full-time patient is my least favorite answer – even if it is true. Even if I don’t have the energy, I am more than my disease but I need to respect my limits.
I started the hashtag #Acromegalylife to show I am so much more than my disease. Others are using it now and many not in the way I intended. But that’s just social media. I hope if they read this that they choose to use it for medical but more importantly non-medical reasons. We need to see more than just our illness. I use #DisabledArtist because that is what I am. I’d like to develop a way to make chronic illness and invisible illness respected and supported. It’s been an eventful year to say the least and my complicated story will continue.
#wegohealth #acromegaly #acromegalylife #chronicillnesswarrior #raredisease