Acromegaly

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    A little break (pun intended) would be nice

    Been a rough go over the last few weeks, so tired of life not being fair. My teens lost their step-Mom. She was only 37 and died so suddenly. She loved my kids fiercely and was a good person.

    Found out I don’t currently fit criteria for acromegaly, but they are going to keep testing. Means they don’t know what is wrong with me. Weaning me off one of my medications which has caused me to go into medical crisis twice. My city has the highest Covid numbers in North America currently, so I stayed home and treated myself, but it was a bit touch and go.

    Today I fractured my foot, again, looks like tendon damage too (will know next week). Lol, the X-ray tech was like I see something on top (today’s damage), but does your foot hurt on the other side too? My fracture from 2019 hasn’t healed. Lol

    I’m so tired, but finding the silver linings and getting through the days. I have my respirator which allowed me to hold my babies tight. I saw my daughter smile as I gave her one of those blanket sweater things that are like a giant hug. My oldest and I picked his classes for next year and he got excited about his option classes. My youngest hugged me tight and said he was sorry about my foot, running around doing things for me. When life gets hard I am reminded about how much I have. Today’s sky was painted with the most beautiful colours. Life is always more good than bad. #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #CeliacDisease #PTSD #MitochondrialDisease #MastCellActivationDisorder #Abunchofrarediseases #Mourning #tired

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    Another rare disorder

    Doctors are confirming yet another rare diagnosis... acromegaly. It is an endocrine disorder where you produce too much growth hormone from a pituitary tumour. The changes have been drastic. My face, hands, feet and tongue are all bigger, my hair is now curly, my vision is impacted, worsened back pain and I get bouts of rage.

    I already have: Addison’s, Asthma, Ehler’s Danlos (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), celiac, undefined Bleeding Disorder, Mast Cell Activation Syndrome (MCAS), Secondary Mitochondrial Dysfunction, high blood pressure, sleep apnea, Conjunctivochalasis, raynauds, premature ovarian insufficiency, osteoarthritis and a fatty liver.

    Trying really hard to swallow this. If they confirm diagnosis next week it would mean brain surgery and possibly radiation. I’m so tired, so very tired. I know I am never getting better, but is it too much to ask to not have more?

    But, as I always say, life is more good than bad. My children are amazing humans who give me so
    Much joy, teaching gives me purpose, my dogs fill my heart, I have amazing friends and family, there is music, books, nature and good food. So much left to live for, so I had my ugly cry and now I move forward.

    #Abunchofrarediseases #MitochondrialDisease #Asthma #EhlersDanlosSyndrome #Acromegaly #PosturalOrthostaticTachycardiaSyndrome #CeliacDisease #MastCellActivationDisorder

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    Still Here and Mighty Resilient

    STILL HERE AND MIGHTY RESILIENT

    By Mystery Lady

    In 2005, my life changed in one day.

    A mystery illness entered my life and had me bedridden overnight where I remained for the first two years of my journey. Immobilized by unrelenting pain, my fatigue was debilitating to the point that I could no longer will my body to move. I felt closer to death than to life. On most mornings, as I woke up from a night of broken sleep, my first thought was often astonishment at the realization that I was still alive. On some days, I could eventually muster enough energy to get out of bed and have breakfast after which I would “kiss the couch” for the next 12 hours, getting up only to feed the cats or visit the bathroom. Anything else was out of reach. I did not have the energy to read or watch television or talk. All I could do was lie there, and survive.

    Unbeknownst to me at the time, there would not be any significant improvement over the next decade and a half. Doctors were baffled by my medical dilemma and many called me “mystery lady”. No one could explain how a 47-year old woman had gone from leading a full life of working, traveling, socializing and volunteering to a complete inability to produce energy for such mundane activities as brushing my teeth, going up a flight of stairs in my home or taking a shower. During the first few years of my illness, I collected diagnoses of exclusion including #InterstitialCystitis, irritable bowel syndrome, post-viral chronic fatigue, mitochondrial dysfunction, food intolerances and #SinusTachycardia. Yet, no cause or treatment was offered and specialists adopted a “wait and see” approach year after year. My life was passing me by…

    Twelve years after that fateful day when my body broke down, I was assigned a new family physician who turned out to be both a blessing and a turning point. She meticulously studied my case and listened to me with intent as I told her about my journey into #ChronicPain and illness. She did not doubt the severity of my pain being expressed through dozens of symptoms plaguing me from head to toe. Dr. O. was clear from the start that she and I were to form a therapeutic alliance built on trust and truth. Under her medical leadership, specialists ordered tests and offered medical hypotheses to help figure out the puzzling mystery. Tests were done for #Hyperthyroidism, pheochromocytoma, carcinoid tumour, mast cell activation disease, porphyria, #Vasculitis, acromegaly and #AdrenalInsufficiency. All turned out to be negative. And yet, my pain persisted as did a myriad of symptoms ranging from episodes of sudden elevation in blood pressure and tachycardia to complete intolerance to heat, an inability to concentrate, unusual sweating, flushing and edema of my face, hands and feet, burning skin, migraines and shock-like pain in my legs, anosmia, and most of all, incapacitating left-sided abdominal pain. For the last 14 years, I’ve been trying my best to manage 30-odd symptoms. Pain does not take a vacation…

    As of 2019, some of my symptoms have been given a “home” (diagnosis). After two years of ongoing testing and follow-ups from March 2017 to May 2019, most arrows are pointing in a clearer direction: neurology, auto-immunology, rheumatology and oncology. Recent diagnoses now include #Nystagmus (a vision condition in which the eyes make repetitive, uncontrolled movements), #Erythromelalgia (intermittent episodes of severe, burning pain), #Rosacea (chronic inflammatory skin condition) and #Osteoarthritis (wearing down of cartilage). Other investigations still in process include myalgic encephalomyelitis (ME), small intestinal bacterial overgrowth (SIBO), #Fibromyalgia, central sensitization pain syndrome, #Dysautonomia and a neuro-endocrine secreting tumor. It’s quite the load.

    As I enter my 61st year of life, my journey to wellness is far from over, yet I take comfort in the fact that I am still here, still resilient and still committed to finding solutions, treatment and stability in my symptoms. I wish to share some encouragement and personal insights on resilience with all of you who are experiencing chronic pain and #ChronicIllness.

    • How do we maintain a sense of hope when the medical community doesn’t have answers, and thus, cannot formulate a treatment plan for us?

    • Where do we find solutions when our illnesses are rare and research on orphan diseases is scarce?

    • How do we get back up after collapsing emotionally, physically and spiritually on a daily, if not hourly basis?

    • How do we maintain a love of life while our health is in turmoil and we have lost all sense of normality?

    LIVING FIVE MINUTES AT A TIME

    On my worst days, I would commit to making it through the next five next minutes without allowing my brain to worry about how long my suffering would last “this time” or even if it would ever stop. Although I was in a constant level of daily pain and fatigue, flares would drive it up to the point of being unmanageable and I often wound up at the emergency department. I’ve had 24/7 flares lasting up to three months at a time, sometimes longer. By focusing only on the few minutes ahead of me, I could survive and maintain my resilience minute by minute. Living five minutes at a time has been a saving grace.

    ASKING FOR A PEP TALK

    When I had a particularly difficult day and felt the darkness of despair shadowing me, I would ask my husband for a pep talk to get me through. He would sit by me, hold my hand (without stroking it as even the slightest touch created even more fatigue or pain), and would pronounce four key words that got me through many, many difficult moments. He would use his most compassionate voice and say to me, looking straight into my eyes: “This too shall pass”. Every single time he did that, he empowered my resilience and helped me find calmness in the midst of adversity.

    GRIEVING IN SMALL STEPS

    You know how a bookmark allows you to find your place in a beloved novel and if you misplace your bookmark, you lose your place in the story and you find it a little frustrating? Illness is like the lost bookmark in the sense that it takes away your “place” in life, and that is more than a little frustrating! The life I used to have and enjoy is no longer a possibility (at least, not in this moment) and I understandably grieve such an immense loss. Yet, if I only see the “big picture” of that life-altering loss, I tend to panic and struggle because the grieving process is requiring more energy than I can produce. To maintain my resilience and uphold hope, I break down my losses in little pieces and grieve the lost bits and parts of my life in manageable increments. I allow myself as much breathing room as I need in between my grieving moments.

    RESISTING COMPARISON

    When I compare my life today to the life I had before chronic illness, I feel my resilience go dark and I lose my way on the journey. It takes a fair amount of courage to accept a new normal and I resisted it for a long time thinking that if I accepted it, I was allowing illness to settle in. Acceptance is not surrender; it is simply accepting what is in this moment. No more, no less. The trick for me is to keep remembering that there may come a time when science and medicine will have a better understanding or a treatment for what ails me. I could get better. My health could improve. There could be a doctor out there who will figure out how these symptoms fit together and how to help me recover, rebuild, restore. Resisting comparison and maintaining hope in a small corner of my mind shines a light on my resilience.

    CHOOSING WORDS WISELY

    Chronic pain and chronic symptoms tend to play the same tune over and over again in our mind and body. A never-ending cascade of sour notes and disharmony! We know all too well the words to the song and each note scratches our heart like fingernails on a blackboard. My most fragile self tends to show up at bedtime when my home is filled with stillness. It is then that my mind starts to work in overdrive and weakens my resilience. In those moments, I choose wise words to quiet down my worries. I borrow from the Emotional Freedom Technique whereby a certain phrase is used while tapping on specific acupressure points. Although I don’t do the actual tapping exercise while I’m in bed, I adapt the EFT phrase to my reality of the day and repeat it in my mind to block out negative thoughts that interfere with falling asleep. For example, on a day when I feel overwhelmed by fear, I might repeat a phrase similar to this one: Although I have insecurities about my future, I deeply and completely know that I am in the safest place I can be right this moment.

    I hope that what I have shared with you will resonate on some level and be helpful on your journey. How do you remain resilient? What tools do you use to help you stay in the light? What inner resources do you tap into to make it through each day? I would love to hear from you if you wish to share tips and advice on staying resilient. I look forward to learning from you.

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    Doing my best. #SimplyLivingRare #AcroRare

    #RareAndMighty
    My rare is #Acromegaly I'm doing my best to advocate for my own health. This illness is fairly new to me. It's difficult when doctors take the same approach with each patient. If you have only seen 12 ppl in 12 years with Acromegaly how do you truly know what works for every patient. I'm learning to speak up more in appointments and ask thought provoking questions. If you really think about it the doctor works for and with you. You pay the doctor for a service. You wouldn't keep going to a restaurant if they were rude, didn't know much about the menu, and blew you off when you ask questions. Would you? I encourage you to do your best to research your condition and find the best team that cares about you. Be mighty in your approach.

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