Since it’s been a while (almost a year!) I’ve decided to put together a post about my journey.
Can you remember the first time the pain hit?
Do you remember when you realized it wasn’t going to leave you alone?
I can answer yes to both. I was 20 years old, in college and was struck with my first back–of–the–head migraine (occipital region). It never left. I realized how bad it had become around age 24. My co-worker (there were four designers and the owner) replied to my comment —I have the worst headache. He said, ‘you say that every day.’ I said, ‘but today is the worst ever.’ He said, ‘you say THAT every day.’ I felt the wind being knocked out of me.
I had chosen to ignore pain. It would not be ignored – so it beat on me until I broke. I broke hard at 25 years old. Who knew it would get worse.
My predominant symptom was chronic daily migraine and right-side neck through upper extremity pain.
I used to joke, when I left my job, sold my condo, turned in my leased car and moved home that I had worked a long three years and decided to retire and be independently wealthy. Ha!
I was over-medicated. I was labeled depressed – I was told over and over it was not real pain but a symptom of the depression – WHATT!!?
Once at home, I quit doctors for that year. I only saw a massage therapist and an Integrative Manual Therapist. Relying on alternative therapies started early on.
Then I met my husband while visiting friends back in Boston. So, I moved back… without being better. By 28 I was diagnosed with a pituitary-tumor, a prolactinoma. By 30 it was re-diagnosed as a dual-secreting tumor. Adding in growth hormone — a rare disease called acromegaly.
Acro-what? Ack-ro-meg-ly — a growth hormone secreting tumor. In essence, it would be gigantism, if the tumor was active before my growth plates had closed. Make no mistake, my body kept trying to grow. Thicker bones, organs, facial features, hands and feet. If diagnosed early these symptoms would not have developed.
I’ve had transsphenoidal pituitary surgery. They remove the tumor via your nose. Five years later I radiated my pituitary and parts of my brain were collateral damage.
I hurt….Systemically. I have bone growth that entraps nerves. I have an overactive nervous system which reeks havoc on a constant loop. The top of my head to my feet — something always hurts. I have been on more medications that I care to count but I always take a huge dose of HOPE.
HOPE is not an easy pill to swallow everyday. Especially when you can’t un-grow things that are causing the pain. But I demand a life. I demand joy. I demand involvement in society.
These are not easy tasks, but I like to-do lists. A few things keep me sane. Art and design and helping others. So I use art and design to help others. Be it for my nieces’ and nephews’ school, my church, local nonprofits, small businesses (my list is growing).
That’s the mental part. There’s always a physical part. And as I stated, pain won’t be ignored. And Big-Pharma is not the answer. Maybe one part of the solution but it is not the be-all end-all if you want a life well lived.
Medication hurts and does not remove pain – it just distracts you from it.
Over the past I’ve tried just about everything. My tried-and-true are a Paleo diet (cheats are allowed but I know the effects if I do – sometimes it’s just plain ole worth it), essential oils (frankincense has gotten me off of medication!), rolfing and acupuncture. Rofing is my be-all-end-all bodywork and my saving grace. Acupuncture calms my soul more than my pain but when you have a systemic calming you have pain reduction. I wish I could have ear acupuncture nightly!! Supposedly meditation can bring you the same effect but I am not there yet, so stick a few needles in me!
You can never underestimate the benefits of exercise and being outdoors. For years I could do nothing, but I would try for short walks. Then I had years of Pilates. It made me stronger. It made me better. But then things in my body became worse and I could not continue. Returning to Pilates is the goal. I’ve added adrenal insufficiency to my list of illnesses caused by radiating my pituitary and this makes exercise challenging but none-the-less-important. I started walking again (you can always begin again) with a half mile loop. I then was able to increase to a mile and now I can get in at least 2 – 2 1/2 miles. I can’t do it every day. My joints start to swell and knees start to wobble. But there’s something so freeing being out in nature on the wooded path. Most often with my ear buds in, singing along in the sunshine. Clears your mind of worry and pain. It allows the clarity that gives way to creativity and I hit my happy place.
Finding a balance is a challenge but one I gladly accept. I have value. I know my worth. I have much to offer. I also need to rest and be mindful of it. I pick my battles. I push my limits but I make sure I have recovery time on the other end. I want to live this life that I’ve been given and I want to live it well.
#acromegaly #acromegalylife #chronicillness #chronicpain #keepgoing
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