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    Update

    Update: It hurts my heart and soul so much that I am not worth the help, trouble or time to my 'doctors'.

    My Rheumatologist told me he couldn't help me. He suggested i find a new doctor. This after I spent a year trying to hold out like my parents wanted in hope that he was a good doctor in the long run-but my base instinct was correct in that he would only bring me harm.

    He put me on this medicine that he didn't know would help but it did for two ish weeks and then it stopped working. I told him I could see the bad effects it brought, more pain like holes drilled all in me, significant hair loss-I now have half of the hair I use to( a whole new traumatic experience that I had never wanted to go through, and yes I am on vitamins to lessen those effects. I imagine I would be hairless without them), swelling even more than I already am, painfully in my hands and face. I have lost a Lot of my muscle strength and not just because I am bed-bound, even more exhausted beyond belief. If I walk around my room once I am exhausted and starting to blackout, a few other problems and the worst side effect of them all: SEVERE SCARY Hallucination!!

    Needless to say I have not been helped and only added to by my MANY doctor visits here. The real concern is that they think I am just a bad patient when I just don't have doctors who want to stick it out and help me and that is the worst thing in the whole world that I can't really explain. It is like a vital part of life that everyone else gets lovely access and help with, you start off with the worst ones that add trouble and debt with their crazy costs and if they don't help you, they still get to keep your money while you are left with the severe hurt and pain.

    I told this doctor a month and 2wks ago that I wanted OFF this medicine and I needed an appointment to get that but he refused and instead told me to increase the medicine 35%!

    I decided that forget him I was going to try to go off it on my own. The only one who has gotten me off medicine safely with no side effects was me. I know best how to do it after all these years, how nuts is that to realize??
    So I tried going off it and the pain was UNBELIEVABLE! My hands were without any use whatsoever. I couldn't move and my body wouldn't work at all.

    My appointment with the Rheumatologist on Tuesday said he couldn't help anymore when the fact of the matter was a fellow doctor asked about my full body psoriasis and despite him telling me last time he didn't care to look at my full body rashes at their worst, he now cared when we finally had gotten things slightly calmed. He scoffed at our explanations and thanks to my severe horrible memory issues that no doctor will help me with, I had left my phone with pictures of my rashes at its worst, at home! So we couldn't prove the troubles not that he was in the mood to listen of course. *sigh* It hurts my heart and soul so much that I am not worth the help. They don't see me as worth the trouble and time.

    The reality was that this doctor just didn't care enough to work hard to help me. And I wasted a whole year on him to prove to my parents that he was a bad doctor like I warned them after a first meeting with him. Now I am on this medication that he put me on. That is a weekly medicine so it will take me at LEAST a month and a half to safely go off this medicine and by then who knows what I will have had to go through. I am so scared and in pain too of course.

    When he told me he wasn't going to be my doctor anymore he told me I could just go off this medicine cold turkey that caused me to lose half my hair, break out in full body painful itchy red rashes for the past few months, swelling body, SEVERE awful hallucinations 24/7 extra pain, blurry vision, so much more exhaustion that I can barely change clothes with help every three days and that is it. He has never listened to my side effects before and I of course knew he was wrong as he hasn't understood my meds even up til now(The pharmacist I talked to verified I was right in tapering off so score for me! ;) ), 🤦‍♀️

    The beginning of going off these horrific meds starts today. I am SO SO SO not ready for more scary hallucinations. I am sure my parents aren't ready either.

    oh my gosh I am just so tired and angry at all doctors here. none of them are helping me and just causing more issues I have to deal with on my own. I comfort myself that I called him out on his nonsense the last 3 appointments. lol that was so very satisfying. I may look young but I have been around the medical block all my life. I like to think I would make a semi decent doctor too! 😁😁😉 Heaven knows I would NEVER abandon my patients or make them take a drug that gave them horrible side effects. Effects that made them seek out a therapist and made others think they were crazy! I would actually listen to them and take note of each change they mentioned as I would recognize that they know their body better than I do.

    Oh my heart. Dear friends I am so very lost and hurt and hurting. It has been such a horrific 6 months. But onward we must go because the more awful things get, the better they can become. Please let the good finally find me soon. I am SOOO Beyond ready!!!

    #AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #bedbound #ComplexRegionalPainSyndrome #CheerMeOn #ChronicIllness #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #Grief #HypothyroidismUnderactiveThyroidDisease #Insomnia #Lupus #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #PTSD #Psoriasis #MightyTogether #MentalHealth #Migraine #MemoryLoss #Hallucinations #HairLoss

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    Some things in life can really make you mad

    Brain fog from new supps recommended by the results of the private lab test recently received has me feeling like I’m in a state of arrested development. I can’t easily get out, and I’ve become a pariah to most who know me. I’ve written about this before… many people don’t know what to say to me, so now they simply say nothing at all.

    But that doesn’t make it hurt any less.

    Feeling like if I’m not whole and actively participating in life, I am not worthy of their time. It cuts ever so deeper when I realised that when I had nothing left to give, I lost most of my family. Many are apparently “there for me” but in an abstract way only that doesn’t require them to do more than send me texts. I have been relegated to acquaintance status. And I find my health problems are conveniently diminished by the use of reductive phrases like me being “sicky-poo”. One; I haven’t been “sicky-poo” since I was a toddler and two; I know this is a means to downplay the severity of my illness, because you don’t have to show up for someone who you refuse to acknowledge as being chronically ill.

    Then there’s the people who treat chronic illness like it’s a competition.

    I’m sure you know the type. If you complain about sleep problems, they instantly bemoan their own. If you’ve stubbed your toe; they’ve broken their own. When I was hospitalised with chest pains and high blood pressure, a family member had to change the conversation to them having visiting the hospital for an ingrown fingernail. Apparently routine outpatient treatments are equatable to being admitted to a cardiac assessment ward.

    Being chronically ill, brings out the worst in most people.

    And to add injury to insult, I find myself having to self treat and order my own lab tests to try and improve my health. Of course, the first thing doctors will say is that I shouldn’t self treat or self diagnose, yet in their unwillingness to help me, what else am I supposed to do? I’ve lost count of the number of times I’ve been declared to be the picture of perfect health based on basic bloods. Yet the advanced lab tests I have done reveal a completely different picture.

    Worse, poorly informed doctors can hurt patients with bad advice. Case in point; the private GP who told me that I should treat my heavy metal poisoning with graded exercise therapy (GET). Never mind that it’s been scrapped from the treatment guidelines for people with CFSME, moreover, my body is so depleted of nutrients and my detox pathways so overloaded with oxadative stress, forced exercise would undoubtedly make me so much worse.

    And I am no exception to the conditioning that society attachs to looks and our worth.

    Which makes my continued hair loss and the burning peripheral neuropathy, yet another assault on my everyday life. It’s hard to feel like you matter when you know you are an afterthought to the people who proclaim to care about you, have doctors invalidate your illness, and feel the eroding effects of your condition on your body. I feel suspended in time, yet time is taking it’s toll on me nonetheless—both physically and mentally.

    I’m not entertaining any thoughts of ending it all, but I can’t help but think of what my funeral might look like. A staged event with all these people rushing to say wonderful things about me after I’m gone. Virtue signalling writ large. There may even be some tears. All this from people who can’t be bothered to speak to me while I’m still here.

    As always I find that whatever I’m going through, there is someone who has covered similar ground and in this case I find myself thinking of Monty Python’s “Always Look On The Bright Side of Life” from Life Of Brian. Specifically this part…

    “Life's a piece of shit, When you look at it, Life's a laugh and death's a joke, it's true, You'll see it's all a show, Keep 'em laughin' as you go, Just remember that the last laugh is on you.”

    #MentalHealth #Thoughts #MyCondition #HairLoss #Neuropathy #PeripheralNeuropathy #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #BrainFog

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    I Complete Me

    Embracing my thyroid hair loss hat look 🤓. Thankful that it’s winter, and a special shout out to my Alopecia and cancer hair loss sisters. You do not have to be brave for me, or inspire me. I just want to say I see you and acknowledge how vulnerable hair loss makes us in a society which places extreme value in all of us with chronic illnesses being “whole again.”

    For me, courage is saying I may never be whole again—and that’s okay 🖤

    #ThriverThursday #AlopeciaAreata #PostchemotherapyAlopecia #Cancer #HairLoss #HypothyroidismUnderactiveThyroidDisease #ChronicIllness #MyCondition #ChronicFatigue #ChronicBeauty #Fibromyalgia #Spoonie #thisismetrying #iamwhole #wholeself

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    The Autumn Of My Years

    Frank Sinatra famously sang in “It Was A Very Good Year”—a survey of his life of sorts—observing that it was a very good year when he was 17, and again at 21, and 35. Later the days grow short and he finds himself in the autumn of his years. Frank doesn’t share with us what age he is, but it’s 2022 and I’m 42, and I feel that I have reached the autumn of my life.

    I am rooted in my bed. I can stretch my limbs as far as downstairs maybe once, twice, a day. I manage to water myself about twice a week, but even then, my trunk groans and creeks with the effort. Most things that I enjoyed when I it was in the summer of my life, have lost their lustre. And like the autumn tree, I have begun to shed my hair.

    My branches held onto my leaves as long as possible. For that I cannot fault them. The rings of decay from the physical—and emotional—stress that were forming unseen inside me just become too many, and without my awareness. I saw countless doctors, all of whom failed to identify the rot that had set in, declaring me a mystery with my inverse T-waves, shaking limbs, falling leaves, and general failure to thrive. Finally, after two emergency room visits, a hospital stay (2 out of 5 stars, do not recommend), I finally saw an endocrinologist after a two month wait. He was confident that I had most likely gone from a state of hypothyroidism to hyperthyroidism without knowing it, for at least a year. With all the stress this imbalance of hormones placed upon my body, my hair started to break and then fall out.

    So now I am in the literal autumn of my years.

    The forecast is hopeful in that with the right treatment, most of my hair will grow back. And, after having weathered an unrelenting storm for the better part of the past year, my body just wants to hibernate. I am grateful that we are approaching winter, which makes sleeping all day feel like less of an indulgence. But I think about my hair loss and how for the past two months I have been lost for the right words to talk about it… particularly in the absence of a diagnosis.

    There are things I can tell you though.

    I can tell you that even though I couldn’t walk, developed alarming peripheral neuropathy, and needed a wheelchair, the thought of losing my hair scared me more. Despite developing what the doctors repeatedly referred to as “concerning” cardiac symptoms, my concern remained with the loss of my hair and with each parting strand, a part of my identity felt at risk. I can tell you that after being admitted to hospital for observation, I became even more afraid when my body hair started to fall out. Making each trip to the bathroom into a turbulent storm of anxiety, grief, and depression, as my body continued to shed more leaves.

    This being a major outward sign of my condition, every day of increased hair loss made me feel like I was ever closer to being visited by the famed hooded logger, and thrust into the great wood chipper. And no Friends like Pheobe, Monica, and Joey to save me.

    As I fixated on my hair loss, I learned many things.

    I learned that there are all sorts of potions that you can buy, that promise to help regrow hair. There are wigs… so many wigs. But the choice really only comes down to two questions. “Can I pull off this radical new look?” Or, “if I cut this wig in a certain way, will it make me look like I did before?” Thyroid related hair loss apparently means any hair that does grow back, might not be the same colour as before. So that’s kind of like a present to look forward to, only it’s unlikely to arrive by Christmas. A full head of medium length hair apparently takes two, maybe three years to regrow. In that respect at least, I feel like I will be like a sapling again, with literal tufts of juvenile hair sprouting between what remains of my established leaves and locks.

    I can tell you that in addition to the emotional pain, hair loss hurts, quite literally. It hurts to pull on it, and my hair band falls out often—I just don’t have enough to bunch together anymore. So I’ve invested in cancer hats. Only I don’t have cancer, so I also feel like an invading alien species. And of course derogatory as the term is, it is accepted that cancer patients are “brave”. The only thing worse than this enforced bravery is that there is no accepted lexicon, or field guide for what I am.

    But I can tell you how I feel.

    I feel like the lonely tree in a forest that doesn’t look like, or feel like, I belong with the others. I’m not quite sick enough to be offered any support to help prop me up, even though every day is a struggle just to hold myself upright. Being my kind of sick is to be that lonely tree in a field that people are happy to shelter under in a storm, but quick enough to cut down at the first sign of disease.

    And I do not know when it will be spring again.

    But I hope that when that day finally arrives I will rush out into the wilderness and hug every tree I see. Even more so in winter—for I will know what it is like to be bare, and suffer from a lack of kindness or care.

    #HairLoss #Hypothyroidism #Hyperthyroidism #GravesDisease #Grief #Loss #Depression #Loneliness #ChronicIllness #Alopecia #MyCondition #Anxiety #Stress #MentalHealth #MightyTogether #SpoonieProblems #Selftalk #Selfimage #Selfesteem #PeripheralNeuropathy #Neuropathy #WritingThroughIt #Disability #Homebound #ChronicFatigueSyndrome #Spoonie #Hope

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    What Losing 50% Of My Hair Taught Me #HypothyroidismUnderactiveThyroidDisease

    Hair is everywhere. Not just literally (and personally speaking) on my bedroom, kitchen, and bathroom floor, but all around us wherever we look. Our hair is one of the most important pieces of our own identity; whether it is short, long, spiked, or even bald… it tends to be the first thing people notice when they look at you — sometimes, sadly, to an extreme level.

    I grew up in a family with long, thick-ass hair and was always the girl with the long hair. Growing up during preschool and kindergarten, boys would literally follow me around and see me as this superior symbol of strength, obsessing over my hair. If I graduated to the big girl potty, they’d want to follow me. If I climbed the monkey bars, they’d want to as well. My hair had always been to my waist or my bottom; it was truly my identity and deep inside, I know it always will be. Even if I temporarily shaved all my hair off, I will always be the girl with the long hair; but at the same ironic (and maybe hypocritical sounding) time… I’ve not attached to it anymore though.

    To this day, I’m still not exactly sure I can pinpoint what fully happened but one day…it simply started falling out to my own surprise and mental demise. It would be like Rapunzel going bald (what else is the girl honestly known for?). I went to a bunch of doctors not long after and was diagnosed with a scalp condition called Telogen Effluvium; a (mostly) reversible condition in which hair falls out by the root. The problem though, was that no one could figure out where exactly it was coming from. It can typically be caused by a shock to the system; whether that be childbirth, physical or emotional trauma, surgery, extreme stress, physical illnesses, etc. And the issue was that I had multiple root causes and have still not found the exact reason 3 years later.

    I feel in my gut and have had many people including doctors, naturopaths, psychologists, therapists, loved ones, and many others truly believe that it is a mix of physical and (mostly) emotional trauma; it was as if my body truly imploded. My mind went into overdrive and made itself physically sick and lost everything all at once (in other aspects of my life), so at this point, I’m sadly not that surprised. After what felt like months and then years, I couldn’t find the strength to accept it. Hair was who I was. Hair was my love. It was my support blanket. When I was a little girl and got scared, I would hide in my hair; it was my room, my safety, and my security. So many showers had been spent having massive breakdowns pulling it out in handfuls, praying to God, and to this day it’s still not exactly pleasant but I’m more so indifferent…with a dash of acceptance at times (hopefully).

    My hair had always had a root connection to my father also; my father loved my long hair and if I no longer had that… would he still even see me as beautiful? Would I still be pretty? It might seem like a silly thought but there’s still a small part inside of me that feels that way. After so much research I came across so many people (especially men) that hated short hair on women and it continued to push the repetitive belief in my head that a woman with short hair or no hair at all is simply not beautiful. Not feminine. Maybe cute if she had the right face or body…but if even that. So much of the time it takes losing something important to you to realize what you had and then to learn to simply live on without it and for me, that was my hair.

    I eventually came across a whole platform of women online (and some in real life, too) that went through this exact disheartening experience. It was like this huge, sad secret club that no one could possibly understand the emotional burden of until you are living it. But one of the things that began to rub me the wrong way one day was that it continued to be all they talked about, all they suffered over, and all they identified themselves as. All these sad, lovely women brutally beat themselves down for not looking how they or others wanted them to look. I was, in no way, holier than thou, and yet…I wanted to be more than that feeling. I didn’t want to continue to hurt so severely over this; I wanted to break up with the idea of who I thought I was, who I’d been seen as, and who I should be.

    While I feel deeply that it’s not permanent, for now, while this is still happening, I didn’t want to continue to shift this tough experience into harsher resentment and anger towards the cold, hard truth of my reality; that this is really happening. I am losing my hair. And to a certain extent, it is okay and I’ll be fine. It has become yet another true test of my inner strength and patience to sit down with myself, change my perspective about this and realize that my body is ringing its alarm bell and telling me to continue to calm (the f***) down; to continue healing and take it easy. 18 years of extreme, consistent trauma to my mind will understandably put my body in overdrive and will take years to heal. And to expect more of that would be unfair to me. I am alive and breathing and am getting better every day — and at the end of the day, what more could I ask for?

    While I still mourn and accept this loss, it has been the smack-in-the-face realization by looking myself in the mirror, that has made me laugh in tears at the small box I have buried myself in for something I cannot control. Something that doesn’t even begin to define an inch of who I am. How unkind could I be to myself to think that I am nothing but an empty, ugly shell for not marking off everything on my checklist of : How to be Beautiful? And as I continue to hold space for myself to feel all that I feel towards this…I now at least realize that I am not less of a woman or a person for any of this. I’m still me.

    #MentalHealth #HairLoss #hashimotos #thyroid #Depression #Anxiety #Hope #Happiness #philisophical #telogeneffli

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    This is soo me .... #Selfcare #Anxiety #Depression #selfconscious #mental health #SkinCancer #COVID19

    Over the past months all the things that having covid had effected for me both physically and mentally I still deal with everyday .Due to now having long covid this battle is constant.
    On top of the blood clots, the breathing issues ,my pain ,my constant sickness every day which has lead to 3 stone weight loss which now had made my body so weak and I am in constant pain .I now have major severe hair loss. To the point it just comes out in clumps ! I have never felt so insecure and self conscious in my life I see someone looking at me and instantly get that hot flush ,sick feeling and feel my hands starting to sweat and shake ......I don't even want to leave the house now anymore.I am soo exhausted and scunnered and I am drained of dealing with this everyday .I am finding it so difficult to find my positives which is how I know I'm struggling so bad.....

    #Selfcare #Anxiety #Depression #selfconscious #mental health #SkinCancer #COVID19 #Insomnia #Bekind #beautiful #youmatter #CheckInWithMe
    #loveyourself #HairLoss

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    Soap opera life

    Sometimes it feels like my life is a soap opera.

    I now have a harasser/ stalker. I haven’t felt safe where I live but don’t really have anywhere else to go until tomorrow, which would then mean being in the same house as my ex boyfriend and that’ll just have a whole other impact on my mental health.

    I’m hoping I am actually safe here though as my neighbours and flatmates know what the person looks like, as well as the buildings security. Been clear so far as far as I know.

    In great news (understatement), my blood test results came back normal!! On the lower end of the normal range but it’s normal and that’s all that matters.

    I’m still bruising and losing weight though, so I have a doctors appointment on Tuesday. I’m now below 7 stone, and I don’t remember the last time I was. Also losing hair.

    ENT appointment on Monday and I’m impatiently waiting. I just want to know what kind of course of action they want to do. And also to confront them about why they never told me about the cholesteatoma.

    Chronic pain has been bad unfortunately. I actually had to take painkillers. It’s a lot of sudden sharp pains and it seems to be pretty constant. It is what it is though.

    #ChronicPain #ent #Stalker #Harassment #bloodtest #WeightLoss #HearingLoss #HairLoss

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