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in-pursuit-of-happiness-caroline · 5 months

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You don't believe it can happen to you - I didn't either...

...Health problems I have to live with caused by the 8 years I struggled with anorexia and orthorexia[and never believed I was "sick enough" for it to happen to me].

I want to preface this post by saying 2 things; First, this post will talk some about eating disorders, although nothing detailed and I will not ever post numbers or anything more obviously upsetting, I do still want to give that warning so if this topic might upset or cause problems for you, do what is good for you and don't continue reading this. Second, I am not a medical or mental health professional. I have no degrees of any kind so this post, like all my others, is purely my experiences, opinions and what I have learned from my doctors over the years. You've been warned now on to the real content/topic...

The past few weeks there has been these nagging thoughts and feelings of some regrets and anger and sadness about how much of my physical health alone eating disorders took from me. I can't go back to change anything but it is something that makes me angry how deceived and distorted someone who is in the depths of an eating disorder can be. For a little back story I struggled with Orthorexia and anorexia for 8 years. The behaviors & obsessions began when I was only 7 years old and I was diagnosed with Orthorexia at age 8 and given a second diagnosis of anorexia at age 10. I stayed in these disorders until I was 15 & only then did I actively pursue and work for recovery. I'm happy to say I have maintained that recovery and a healthy weight since, however, a lot of damage was already done to my body by the time I was 15 and unfortunately much of it was not reversed so I live with many physical health problems caused by anorexia and Orthorexia.

Like many who struggle with eating disorders I was, at different points, told about and warned of the damage it could do to my body, the possible long term consequences of continuing in my disorders. Also like many who struggle with eating disorders I shrugged off these warnings and facts. In my mind none of it would happen to me because I never saw myself as a "sick enough " orthorexic and anorexic to warrant such complications. Now, were there and are there people struggling with eating disorders whose cases would be called more severe and critical than me - yes of course and that is kind of the point- this idea people who struggle with eating disorders have that they have to be the sickest, skinniest, closest to death's door anorexic or orthorexic or whatever to have long term health problems from it or to deserve help or die from their disease is a complete garbage dumpster fire of lies and bullshit! It's not a competition and comparison will destroy! With an eating disorder it will never be enough until it kills you...you will not win anything ‐ or be smiled on, applauded, or envied for dying so thin. No one who knew you will remember you after your death and speak fondly, joyfully or boast about how sick and thin you were. It will not be a positive, admirable, inspiring, happy legacy you will leave if you die sick because of an eating disorder. Your loved ones will suffer, they will be angry about your sickness, angry that you couldn't believe you were sick enough/warranted help. They will be sad and grief stricken and wonder what they could have done differently. They will blame themselves. It's harsh, morbid and very depressing but it is the truth of the legacy you will leave if your eating disorder kills you because you weren't thin enough, sick enough, and you didn't believe any of it could happen to you. You won't die happy and fulfilled because you are thin and sick, you will die depressed, scared, anxious, tortured, and weak just as you were in the eating disorder that deceived you pushing you to hold on to and continue your behaviors, always promising you will be happy when but continually moving that goal- keeping it out of reach because it's never enough with an eating disorder. It's a lie!

Talking to my doctors, I have learned that a good portion of my heart problems were caused by/at least partially caused by years of starvation, malnutrition and stress from my eating disorders. These heart issues include: my heart murmur, mitral valve prolapse and mitral valve regurgitation(which I had to have heart surgery for last year), bradycardia, and thin heart walls! This accounts for every heart health problem I have besides one...it makes me cringe with regret, anger and sadness just to know that.

Anorexia and Orthorexia also caused the irreversible damage and basically shut down of my reproductive system meaning I am sterile/infertile...can not have children. Because I began struggling with eating disorders so young, becoming sick and emaciated/malnourished so quickly and basically remaining in that state or in a declining state for 8 years I have not ever had a period or menstrual cycle and I will not ever due to the damage to my reproductive system. This also caused problems with my bone density and I have osteopenia (basically the beginning stage of osteoporosis) and eventually that will progress into full osteoporosis. I also have permanent damage to my liver caused by my eating disorders.

I hate that I caused so much of my own health struggles and problems and as a result cause my family worry for my health, my well being, and my future. Not to mention the experiences, relationships, strength, health, life, personality, adventure, discovery, zeal, joy, love, rest, dreams the eating disorders took from me and I can't go back and have them.

I am a dancer. Dance is my biggest passion in life and some day I won't be able to dance anymore because the permanent damage and health problems from my eating disorders will end it. My bones will be too brittle and weak to leap and turn and hold a pose, have correct technique. My heart could get weaker- more stressed in time and I will have dance taken from me. I won't be able to follow that dream, to perform. The consequences of eating disorders reach my entire life and that is and/or can be the reality for anyone with an eating disorder who doesn't believe it will happen to them - who doesn't see themselves as sick enough. I did not see it or believe it either and yet this is my reality.

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in-pursuit-of-happiness-caroline · 5 months

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Health issues & anxieties/worry thoughts

Yesterday I was able to come home from the hospital after a brief admission because I collapsed and had a seizure at home late in the evening on Saturday November 18th. I have no history of seizures so this was shocking, surreal, and scary for me and my family. After a lot of testing in the hospital the cause of my seizure was determined to be a major deficiency in vitaminB12 and magnesium as a result of my hyperthyroidism and malabsorption syndrome. I am relieved that the cause of the seizure was pre-existing conditions and not some sort of epilepsy, abnormality in my brain, or some other possible diagnosis discovered and added on to the list I've already been given. However simultaneously with the relief I still feel some anxiety, worry, fear, frustration, uneasiness and uncertainty. In and after circumstances where a new symptom/issue/mini crisis with my health emerges [in this instance it was me having a seizure], It's difficult to shake the anxious and worried thoughts and one of the biggest ones being that some new health condition/ something else wrong with me is going to be discovered and I will be forced to live, cope and try to battle/treat/medicate it as well. It's a sort of anxiety that is like an impending sense of...not really doom but more like something else is going to go wrong-the next shoe is going to drop. It's thoughts and worries about how this is going to effect my overall health if at all? Is this causing more damage to my already damaged heart, liver, bones, or eyes? How is this going to effect my family? Is it going to decrease my ability to function in life and my ability to do the things I love? Will l have to take more medication? What if I require some kind of surgery? Will I be in the hospital more? Will I be in the hospital longer? How much longer will I be able to dance and play sports and will my health problems put an early end to those passions?

Now this is NOT in any way me trying to insinuate that my health is so bad, and I am so sick and woe is me. I'm very aware that other people have much worse, some even terminal, health issues. However, on that side note who when they are sick or going through something is made better by being reminded that other people have it worse? One of the dancers in my acro and hip hop classes has asthma that gets pretty bad...should I or someone else go to her on a bad day and remind her that others have it worse...like at least you don't have lung cancer or lupus...it's only asthma! Will that cause her to need her inhaler less? Will it alleviate the anxiety that comes with not being able to breathe properly? No! Similarly, in the realm of mental health - the struggles of someone with depression are just as important, serious, difficult, valid and deserving of care as someone who has depression and schizophrenia or depression and drug addiction, depression and has attempted suicide, depression and an eating disorder. None of these needs to be ranked as having it worse than the other. This need we have to qualify and measure illness or situation against others and then determine what is worse is not only invalidating and shaming but gives space to this sick competitive one up‐man-ship vibe and conversation people can get in to...you know the kind where people tell of their ailments and struggles and in turn the next person tells their own that is suppose to be just as bad or worse than the person before. Anyways that's a soap box for some other time.

The issue with my hyperthyroidism and malabsorption syndrome is the severe deficiencies they cause do real damage-permanant damage to my organs and bones - every time more and more damage and I already have heart problems, I have already had to have a surgery on my heart. So each time something like this occurs where I am in the hospital I start to get the anxiety and worry - what's wrong now? Is it going to be so bad this time that I will have to give up dance and sports? One day it probably will come to that...I know that...my doctors have told me that and it's not that all my enjoyment and happiness in life or my whole identity is wrapped up in dance/being a dancer or a volleyball player, soccer player or tennis player. But those things are and have been a big part of who I am. They are things I love and am passionate about and good at...I work hard at. It will be a huge loss when that day where I have to give them up comes and that is scary for me.

The other big piece to this is the uncertainty, uneasiness and frustration. None of my immediate family has any health issues like I do! Not either of my parents or my brothers, not my Aunt and not my two cousins Kenzie and Grace. I am glad my family doesn't have these issues, don't get me wrong, but I still wonder WTF why is it all me? And what's coming next because if genetics play a part in any of my problems which science suggests it probably does then there's a lot of unease and uncertainty. If you don't know this from possibly my main blog then let me tell you that one whole side of my family tree and family history is a big question mark because my father was abandoned as an infant- he grew up in group homes run by the catholic church. He was named by those at the church he was abandoned at. My father lived and grew up in orphan group homes until He was old enough to be out on His own. He's never known his birth family- doesn't want to-and never had a family adopt him. My Aunt and my 2 cousins are the only extended family we have still alive and that is my mother's family. I wish I could explain to you just how uneasy this makes me. Maybe it doesn't make sense to you but it is very real and very much something I battle in my head a lot.

I am sorry this post is kind of rambling...just needed to get this crap out. I am glad to be home and I am doing okay and thank you to everyone...many from my main blog who messaged me concern and well wishes when I had the seizure 😊

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in-pursuit-of-happiness-caroline · 11 months

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How my mental & physical health impacts my family. 2 questions, their answers.

I have had this idea for a few months now to ask my family what it is like for them to have a daughter, sister, niece, cousin with multiple physical health problems as well as mental health issues. There is a famous quote about how no man is an island. So even though for myself I do have a tendency towards isolation and withdrawal- keeping everyone further than arms length it is a reality like it or not that one person's actions, choices, words and struggles do impact the people around them. I can write about my experiences and how I think about things but it's one sided if I don't also talk to the people who have walked with me through all of it, the ones closest to me and still bear witness to my struggles every day.

The people you will hear from are my father, my mother, my brother Theo (25 years old) , my brother Liam (22 years old), my Aunt Melody/Mel, My cousin Kenzie (16 years old) and my cousin Grace (15 years old). Liam's fiance, Caitlyn, wasn't comfortable answering at this point & I totally respect that. I asked the same 2 questions to everyone separately & asked they be brutally honest with their answers.

Question 1: How have my health struggles and issues impacted you personally & how have they impacted your relationship with with me?

Question 2: What is/has been the hardest part for you?

Trigger warning: before we get in to these answers I need to warn everyone reading this that for the purposes of authenticity I didn't edit any answers given except cutting out mention of specific weights and numbers. These answers will mention eating disorders, abuse and there's brief mention of suicide so if these things could possibly upset you in any way don't read further!

My father's answers:

Question 1 response - "I question if I made the wrong choice going in to the military. I wonder if serving the country has been at the expense of you and your brothers - like I can protect my country but not my own daughter are you fucking kidding me? There's a lot of anger and guilt over the fact that we entrusted you kids to a woman who hurt you physically, mentally and sexually and I didn't see the truth about her sooner. If I would have been here I could have kept so many things from happening and that eats me up inside. There is a lot of worry & stress too - like I have to stop myself from being overbearing and let you go & live your life because to be frank what I want to do is have you home always- just letting you go to the dance studio or drive or anything is hard because I worry someone else could try to harm you, I worry about your mental state and what if there are self destructive things you are doing secretly because of your reactive attachment disorder, eating disorders and trauma... there's so much more risk for you to turn to other things like drugs or drinking or cutting ya know? I also worry because what if you have some cardiac crisis on the dance floor or the volleyball ball court or soccer field? On the other hand I think I'm a more understanding, empathetic and emotionally intelligent man because of what you deal with. I am more of aware of enjoying time and enjoying family and friends. Relationship with you is a hard balance for me. I don't want to bring up in every conversation you and I have something about your health or your struggles because you are not those things but you are also so guarded, quiet and aloof so much of the time that it's hard to know what is going on with you. I don't know if you're happy or getting better because you don't let me in I don't think very often if at all. I just try to make you smile and laugh..."

Question 2 response: "The hardest part always is the responsibility I feel for things you've been through and just trying to reach you kind of like connect or bond or something...getting you to talk and trust is so hard, it's frustrating sometimes and painful for me as your dad."

My Mother's answers:

Question 1 response: "Personally, I think your struggles have forced me to deal with myself more. I've had to work on my guilt over what you deal with. I have had to look at my own childhood traumas because we all have some I think. I pay more attention now to my own self talk and emotions so I can be better & be better for you because after my cancer I was very depressed and not a great mom. I also worry for you though. My mind comes up with worst case scenarios that might happen in the future like what if you relapse back in to anorexia one day and you stop taking your thyroid meds to lose weight more quickly... that would bring you to death's door so fast! Sometimes I get angry trying to have a relationship & conversation with you- like I want us to be close but you won't let that happen and I know it is because of the attachment disorder and trauma so that knowledge keeps me from directing my anger and frustration at you but it is so hard to be a mom with one child who doesn't have relationships like the other kids, doesn't communicate or socialize or Express emotions or to some extent even feel emotions like my other kids. It's definitely a challenge."

Question 2 response: "One of the hardest times in my life was being deployed and getting pictures of you and your brothers and my 8 year old little girl is wasted away- a skeleton, starving and exhausted. Eating disorders are heart breaking no matter how old your child is but something about an 8 year old so ill with that disease is just surreal, chilling, heart breaking and wrong. Definitely there are images from those years you were really sick and emaciated that are just burned in my memory...it's haunting and horrifying. The other really difficult thing was when you had to have heart surgery...I think in general just the worry and fears for your health and well being are the most difficult parts for me. "

Theo's answers:

Question 1 response: "Growing up was such a whirlwind of I guess just not knowing what to do or how to act. As kids it was confusing to even try to play with you because you were like a really skittish cat, just different. Sometimes it felt like your issues and struggles and health over shadowed me and Liam which really sucked. I never felt really angry at you for it I guess because I could tell you really fucking hated all the focus on you. I could tell you were living a hell I couldn't even imagine. For a long time I put this pressure on myself to just have my shit together all the time and not cause any problems or contribute to the stress and tension in the house. I'm glad we're past a lot of that now at home. When it comes to being your brother I just try to go with the flow...like if you are not wanting to talk at all and want to be by yourself then I don't push it but I will just still be here and ready if you come out of that. I try not to worry too much because I know you aren't weak...your a fighter and your so smart. "

Question 2 response: "The hardest part is just seeing you struggle or seeing you sick and I just don't feel like it's fair...you should not have to have so many health problems and all the emotional or mental stuff too but I can't fix it or change it either and that's hard because your my only sister and I feel like we're pretty close so I just want to make it better and fix it."

Liam's answers:

Question 1 response: "If you want the absolute truth I ended up with so much pent up anger and just rage...watching you starve yourself pissed me off so bad and mom and dad not being home just added to it. I think that's a huge reason I got into fitness and majored in exercise science- becoming a personal trainer, weight lifting, kickboxing, running it is the way I can get rid of the rage. Maybe it makes me kind of an ass but I used to purposefully avoid you when you were in your eating disorders because I just wanted to grab you and shake you and sometimes it is just really hard to come to terms with the reactive attachment disorder and how it causes you to just really suck- to be blunt- at relationships, communication and everything. I guess maybe because I don't deal with those issues the fleeting thought sometimes for me is 'this is a crock of shit...if she tried harder she could be better ' and I know it's not like that but that's still my automatic thought sometimes. The thing I love about you though is despite all your trust issues, anxiety and all, you are loyal AF - like you are my ride or die!

Question 2: The hardest things...well first would be the eating disorders like I already said but the other that pops in my head is just the always present, looming kind of tension or worry in our family that we don't really talk about- it's just in the atmosphere and it's worry for your health because with some of your other health issues and complications it puts your heart more at risk when you already have heart problems! There's the concern and worry that you could end up with full blown osteoporosis and have to give up dance and sports...we all worry that if that happens it would break you. It just seems like you are so prone to health problems I think we all worry and are afraid of when the other shoe is going to drop ya know? It's really scary...

Aunt Mel's answers:

Question 1: In a strange way I think it has made our family as a general whole more deliberate and intentional about spending time together. How it has affected me personally? I'll be honest it had a really negative effect on me - when you were in some really dark places when you were younger I was the only family your parents had to talk with about it & i felt they depended on me to be the one to listen and be the sounding board - like a therapist for them and I am not cut out for it but I felt a duty to be that. I can't explain the pressure and heaviness I felt- some of it was too much. I started not being able to sleep, I was having panic attacks because I felt a responsibility to help come up with solutions...to make you better and heal your parents and brothers and I could not. I was fearful all the time for my girls- hearing what you had been through- I had nightmares and intrusive thoughts like scenarios play in my through the day of Kenzie and Grace getting abused or one of them committing suicide, or getting seriously sick with cancer or a heart problem. Your mom and dad had so much more experience being parents than I did when you started having problems and so I think in a way going through it with your parents kind of forced my eyes open as a mother- it was like a violent smack of reality that there are some horrible things that could happen to my girls! I was so fearful of losing someone else...I had already lost your Uncle Bryan and I think all the negative, unexpected, tragic things that had happened with your uncle and then you and your family- it just overwhelmed me. I have so much admiration for you and how strong you are and how much you've fought through. All of this I believe has made the relationship between you and I stronger and better because I treasure you...you survived when we thought we might lose you.

Question 2: I think the hardest part for me - well first like I already said was just the brutal eye opening of the bad things that happen to kids - it could happen to my kids and the fear and anxiety of all of it. The fear that I can not stop bad things from happening to the people I love. I can't stop illness and death from taking people I love most. The other hard one was when you had to have heart surgery because your Uncle Bryan died of a heart attack. I had a really rough time with that.

Kenzie's answers:

Question 1: Knowing what you have been through and seeing how it has impacted you I have a really hard time trusting people's intentions when it comes to romantic relationships. Every boyfriend I have scares me even when they have done nothing themselves to warrant the fear. I just don't feel safe. As far as my relationship with you...I feel like us being only a year a part it has made us really close - your like my best friend and I trust you more than anyone because you have dealt with so much and told me so much so I know I can tell you anything.

Question 2: The hardest part is dealing with your physical illnesses...it scares me because I don't want something to happen and you die. I can not lose you Caroline! You are the person that makes me feel the most safe and protected!

Grace's answers:

Question 1: You and my dad are the reason I want to become a cardiologist. I think my relationship with you has always been fun - I remember being really little and noticing how you smiled and laughed and how you didn't do either much so I just started joking with you all the time because I wanted you to smile and laugh more and now we laugh so much when we are together and have so much fun! You bring out the funny and spontaneous in me.

Question 2: The hardest part for me has been your eating disorder. When I don't like the way I look sometimes I get envious of the ability you had to not eat and everything. I know it's not healthy and everything but it still tempts me sometimes to try to not eat and just do what you did...I don't know why it's so tempting for me but it is.

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in-pursuit-of-happiness-caroline · 11 months

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Hyperthyroidism part 2 of 2

With hyperthyroidism there are certain things I have to be aware of in order to avoid causing a flare which could make me very sick for instance eating alot of fish and seafood like crab or lobster even though I love those foods they can cause my thyroid problems to act up worse. I have to keep my dairy, soy and gluten in take to a minimum as well as certain vegetables like broccoli, cauliflower and spinach. I also have to really watch my salt intake. These are all things that could trigger worse problems and flare ups with my thyroid and potentially cause me some major health repercussions. Trying to just avoid dairy and gluten alone makes grocery shopping stressful sometimes and more expensive. The combination of hyperthyroidism and malabsorption syndrome makes it hard for my body to get essential nutrients and vitamins and this causes deficiencies, some of which can cause serious damage to my body and organs and if not caught and treated have real potential to kill me. This is why I get blood work and tests done regularly [most of the time once a week] because my potassium is a continuous concern along with my magnesium, iron, vitamin D, Calcium, and zinc. These are the nutrients, vitamins and minerals I seem to end up deficient of more often than not. Usually these deficiencies happen quickly and drop dangerously low fast for me which usually requires me to be admitted into the hospital. Some of the potential outcomes to these deficiencies are: heart attack, stroke, heart failure, breathing and lung problems, weakened immune system making a person more susceptible to infection and the inability to fight it off, cuts and wounds that do not heal, developing diabetes, kidney problems/failure, developing osteoporosis, loss of taste, loss of smell, & loss of eye sight. I would be a liar if I said these things don't scare me if I allow myself to think on them too long.

Another thing I have learned I have to do different because of hyperthyroidism is I have to consume a lot more food than most - especially since I play sports and dance and have a very active lifestyle in addition to having hyperthyroidism and malabsorption syndrome I burn off what I consume very quickly and my body has a difficult time absorbing the nutrients it needs so I eat about every 2 hours. I have to have nutritional supplement drinks prescribed by doctor multiple times a day. I also take a lot of vitamins and supplements I am prescribed.

By far the hardest thing I've had to learn to do is to be aware of how and what I feel physically. It's important for me to be able to recognize the signs in my body that could mean I am dealing with an extreme deficiency so I can get treatment. This ability is something extremely unnatural and sometimes distressing for someone like me because I prefer to live disconnected and disassociated from my body because of PTSD. My mind and emotions really hate being in my body but I have to remind myself that the alternative is potentially suffering a heart attack due to a potassium deficiency or some other deficiency and I could die. I have to choose the uncomfortable, unpleasant thoughts and emotions over disassociating from my body and putting my life at risk. It is a mentally and emotionally draining battle for me but it is worth it because I do enjoy living and there is a hell of a lot more of that to be done!

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in-pursuit-of-happiness-caroline · 11 months

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Hyperthyroidism part 1 of 2- what it is, symptoms, and diagnosis story

I was diagnosed with hyperthyroidism at the age of 15. Hyperthyroidism AKA over active thyroid is a condition where your thyroid produces too much thyroxine hormone. It is a manageable condition with medication which I take daily and I have regular appointments with my endocrinologist for this condition...left untreated or not regularly managed under the care of a doctor hyperthyroidism can cause very serious issues that can be fatal...the major ones include heart attack, stroke, and thyroid storm but let's talk about what happened leading up to the diagnosis...

When I was 15 I was in a residential treatment facility for Orthorexia and anorexia nervosa. It was difficult at first for me to actually get diagnosed because many of the symptoms I was experiencing mimicked symptoms of someone who has anorexia and Orthorexia & is either actively engaged in the unhealthy behaviors of these eating disorders or is going through the re-feeding process[which I was in that time]. The symptoms I was experiencing were rapid weight loss and extremely fast metabolism despite what I ate, over heating easily and often, high levels of anxiety, fidgety, antsy, need to be doing something constantly, irritable- lower than average tolerance to frustration/inconveniance/ annoyance ,hair loss, trembling in hands and fingers, fatigue, insomnia, my skin was always damp and clammy to the touch, I had issues with digestion...everything I ate went right through me very quickly so I was in the bathroom a lot, I was experiencing irregular heart beat [heart murmur], my stomach hurt pretty much constantly and I was forever bloated . So if you are reading this & you are not familiar with eating disorders and the effects of them and the effects of early recovery and re-feeding let me just tell you that almost every one of those symptoms could be attributed to eating disorders and re-feeding. All the professionals at the residential I was at understandably took my symptoms and complaints as part of my eating disorders, malnourishment and being early in to re-feeding. The problem was the symptoms continued, even got worse as time went on and I was losing more and more weight. I actually ended up being accused multiple times by the staff , my therapist, nutritionist and psychiatrist at the residential of secretly exercising while in treatment, purging, hiding food...doing something I was NOT supposed to be doing to cause my weight loss to continue....I was becoming thinner and sicker being treated for my eating disorders and it was absolute hell because ironically I was not engaging in any of the things I was being accused of but the treatment center still treated me as if I was...I was given a feeding tube, put on one to one observation with a staff member 24/7 which meant I had to be with a staff member no matter what...a staff had to watch me while I slept, while I ate, showered, used the bathroom, sat in group, walked down the hall etc. It went even further to where I was put on wheelchair restriction so I was not allowed to walk anymore to keep me from losing weight . None of that helped and I got worse - my blood work showed that my kidneys were not functioning properly, ekgs showed my heart murmur was getting worse- I was very weak, my neck and eyes looked puffy and swollen, my stomach pain increased and I was nauseous most of the time. The residential sent me to the hospital at this point and after 4 days in the hospital I was diagnosed with hyperthyroidism and put on medication. I spent 6 days total in the hospital and then went back to the residential treatment center. I have no underlying condition or disease that caused my hyperthyroidism and it is not something that is brought on by eating disorders...it is just something I developed. According to my doctors my hyperthyroidism is pretty severe which presents more risk of other complications mostly with my heart, my eyes, my bone density, and reproductive organs. It is a little worrisome because I already have heart problems and have already had a heart surgery. I already have the sort of precursor to osteoporosis known as osteopenia and my reproductive organs have long ago bit the dust [I am completely infertile/sterile] due to struggling with eating disorders from age 7 - age 15. On medications for my hyperthyroidism- my symptoms are less & much more manageable however there are things I have to avoid but that will be covered in part 2

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in-pursuit-of-happiness-caroline · 1 year

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My journey & experience with eating disorders [Orthorexia and anorexia nervosa]

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in-pursuit-of-happiness-caroline · 1 year

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Health issues & uninformed doctors and nurses...how I deal in eating disorder recovery

Let me warn anyone reading this: this post does deal with eating disorders & things like getting weighed & although I won't ever give specific details that could be more obviously sensitive/triggering I do want to still give a forewarning. It's important for me to mention too, that I am NOT in any way a professional in anything...all my blog posts are solely my opinions and my own experience and what has helped me etc. Also this particular post might be a little disorganized. My posts on this blog are things that I pre-plan & think on and rewrite before I post them because when it comes to mental health issues and even some physical health struggles I don't ever want to be reckless with my words, however this post is not planned - a very impulsive blog post triggered by an interaction at a doctor appointment this morning. You have been warned.

To start this out let me give you the situation from earlier today that was the catalyst for this blog...

I had 2 doctor appointments this morning the first was just my annual bone scan because I have osteopenia I have my bone density checked once a year to make sure it has not decreased any further and moved in to full on osteoporosis. My second appointment was with cardiology and I was not seeing my main cardiologist today, this was a last minute squeeze me in kind of appointment because my medication has quit working quite as well as it should - not anything really major but something to sort out before things get worse and become a major problem so they just squeezed me into whichever doctor at my cardiologist office could fit me in their schedule. Got through my first appointment & bone scan with out an issue and so I go to my appointment at the cardiologist. Now had I seen my regular cardiologist today I don't think this would have happened because He knows my background and history but I didn't see him I saw a female cardiologist today...we'll name her Dr. Jones for this post. Dr. Jones comes into the room after the nurse has done my weight and vitals and noted the issue I am being seen for & made sure the list of medications I take that they have on file is up to date and correct. Along with my heart medications I take thyroid medication [I have hyperthyroidism], an antidepressant, a prescription sleeping pill and a few different prescribed supplements and vitamins [again because of the hyperthyroidism and also malabsorption syndrome I have]. So Dr. Jones comes in to the room and is looking over the nurses notes. She asks me about what condition I have that I take thyroid medications and a list of supplements and vitamins for. My answer; I have hyperthyroidism(aka an over active thyroid) & malabsorption syndrome. Dr. Jones is kind of chuckling when she next says to me "that must be your secret to being slim but I guess you could probably get skinnier if you didn't take those medications!" & you can just cue my face palm after that comment.

Here's the thing; I am in recovery for anorexia and orthorexia and I say in recovery rather than recovered because I don't want to portray myself in such a way where some, especially in the world of social media, see calling myself recovered as l have all my shit figured out (spoiler I definitely do not) and I don't need space held for a struggle or a mistake now and then. That being said I have been actively in recovery from anorexia and Orthorexia for a few years now. I have not known my weight since I entered recovery...my doctors and parents know. I do know I have been maintaining a healthy weight and I have been doing well enough in eating disorder recovery that I no longer have to have specialized eating disorder therapists and mental health treatment team (I see a therapist who is more specialized in treating PTSD and trauma now). I am happy in my recovery and although this comment from Dr. Jones today didn't shake me or "trigger " eating disorder thought patterns it certainly could have a few years ago. Also this is not the only experience I have had with a doctor or nurse that is eating disorder insensitive/could be triggering.

It is such a tricky thing because what I have experienced tells me most medical professionals are not adequately trained or educated in eating disorders and how to interact with patients who have a history of eating disorders. I don't blame Dr. Jones in this situation she just didn't know my history & really other than my initial face palm reaction to her comment...I didn't have any further negative reaction, feelings or thoughts over it at this point in my recovery. I did want to talk about some things I have done in order to deal with situations like this because eating disorders are quite common anymore and since my health puts me in a lot of doctor offices I find myself in these situations pretty often

First thing I have done in the past is to be sure I tell whoever I am seeing up front that I am recovering from eating disorders OR if you maybe don't want to tell them about an eating disorder you can just say you struggle with insecurities with weight and your body. I have found most of the time this helps whatever doctor or nurse be more conscious of what they are saying to you. I think in the world we live in weight loss, body shape and all of that talk is so main stream and common casual conversation that most see it as harmless small talk...it's something in America that is common ground to relate to and because most are not so informed & aware of eating disorders most of the things someone says that could be unhelpful to another's recovery is not intentional - it is said purely from a place of ignorance around eating disorders so being upfront with whoever you see is key.

Now since you can not really control other people the rest of my tips that help are all about work that you, the person who has dealt with an eating disorder, has to do in order to not react in a negative, triggered, upset, spiraling fashion when shit is said. That being said find people to vent to and to keep you accountable when things happen - Preferably find ...I'd say at least 3 people you can call on when you find an interaction or situation has stirred up some eating disorder shit [the list of 3 people should not count your therapist. I think it's important to have people to call on & talk to that are friends and family you can trust because you have to be able to get through things without a therapist at some point].

It was really important for me to work on, for lack of a better word, desensitize myself to the comments and situations that "triggered " the anorexia and Orthorexia garbage so eventually I stopped having a triggered reaction to them otherwise recovery is really fucking hard and even more isolating because others may trigger you. You can and should try to communicate and educate people about eating disorders but also you have to realize that the best way to avoid being eating disorder triggered by outside people, conversations, situations etc is for you to find a way to talk about, think about, & deal with those triggers so they don't trigger you anymore. It sounds so shitty but I found the most helpful thing for me is to take I guess responsibility for my triggers and accept that the world is not going to stop being triggering & they really are not responsible for how I respond either in a triggered or more healthy way to a comment, situation or whatever. It sucks but honestly it's one of the best things I did to help myself in eating disorder recovery because now there is not much that shakes me in my recovery.

I have to wrap this post up - it is already really long so the last thing I want to say is Dr. Jones was not out of line in what she said to me today. Even though yes, earlier on in my eating disorder recovery her comment could have sent me in a tail spin...medically her comment was factual...without medication to manage my hyperthyroidism I would lose weight & I have said that on this blog and my main blog before, without medication I would rapidly lose weight despite my food/caloric intake so this is just another reason why dealing with triggers, thinking about them differently and moving on from them being triggering has been so important because the outside world doesn't have much power over my emotions, behaviors, thoughts and decision for recovery anymore...they don't trigger me. Anyways again I am not any sort of professional in anything...this is all just my experience and my opinion having dealt with eating disorders and other mental health issues and physical health issues.

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in-pursuit-of-happiness-caroline · 1 year

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My diagnosis & experience with my reactive attachment disorder or RAD for short

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in-pursuit-of-happiness-caroline · 1 year

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Hyperthyroidism & seeing my doctor yesterday

So I have hyperthyroidism which basically means my thyroid is over active. The symptoms of hyperthyroidism are manageable with medication which I am on but those symptoms for me include

Being very jittery- the need to be doing something all the time

Higher levels of anxiety

Difficulty gaining weight and if I were not on medication rapid weight loss despite my intake

I over heat easily and have a pretty low tolerance to the heat

irregular heart beat (heart murmur)

Hair loss

insomnia but feeling tired all the time

digestive issues meaning food tends to go right through me

Its not a fun time but I manage and like I said a lot of the symptoms are at least alleviated with the medication I take for it and it's a manageable condition. I also have to note that my case is a bit out of the ordinary because I don't have a high heart rate and heart palpitations that most with hyperthyroidism experience. Because of damage done to my heart from years anorexia and Orthorexia and then also heart conditions I was more than likely born with but weren't discovered until 2022 I actually have a slowed heart rate.

Yesterday I went to see my doctor (I see an endocrinologist for my hyperthyroidism) and He brought up something to me that is called radioactive iodine treatment. This treatment is used to treat some forms of thyroid cancer but also doctors call it a cure for hyperthyroidism. Here is my problem with this: radioactive iodine treatment does actually "cure" hyperthyroidism in the sense that you won't any longer have an over active thyroid but you just trade one extreme for the other- one thyroid condition for another. The treatment slows the functioning of your thyroid so much that you end up with hypothyroidism which includes its own set of symptoms like:

cold all the time

Lethargy

High cholesterol

Unexplained weight gain which in turn statistically and medically speaking those who have hypothyroidism brought on by radioactive iodine treatment eventually struggle with obesity and that brings about its own health problems

dry skin

Brittle nails

Still with the hair loss

Slow heart rate which no thanks I don't need my heart rate slowed more than it is

Constipation

Also with radioactive iodine treatment I could end up

Needing hormone replacement the rest of my life

At least partially losing my sense of taste & smell

And for at least a week after the treatment I would need to keep my self isolated from any contact with any other living being because it would expose them to radiation. Not only could coming in contact with me expose them but coming in contact with any clothes ive worn, sheets, pillows, blankets I have used, & any thing I have used to eat or drink with or out of.

I just don't see that a treatment like this that replaces one set of issues with an even longer set of issues should be called something like a cure. Not a lot of pros to doing this radioactive iodine treatment at least not in my opinion. This treatment is a hell no for me. Maybe I am being cynical and pessimistic but just looking at the list of issues I have now with hyperthyroidism as opposed to the list I'd have after the radioactive iodine treatment I am just shaking my head in disbelief and aggravation because...this is not a cure or a solution.

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in-pursuit-of-happiness-caroline · 1 year

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Overview & timeline

This blog is specifically dedicated to writing about my experiences and struggles with my physical health and mental health. For anything else you can go to my main blog @inthegreycaroline

Right now I thought I would give an overview of what I am diagnosed with and a timeline of when I was diagnosed. It's important , in my opinion, to note that self diagnosing without confirmation, evaluation and testing by a treating professional/Doctor is not a proper, official or accurate diagnosis. It's important to be evaluated by professionals to get a proper diagnosis and treatment and also to avoid trivializing & mocking the struggles someone who actually has that diagnosis faces on a daily basis. For example its pretty common for people who value cleanliness or just like the control in things being a certain way to diagnose themselves with OCD[obsessive compulsive disorder] when in actuality this cleaning and neatness is just a stereotype of OCD that has been portrayed and sensationalized through media but actually statistically and diagnostically speaking within the population of people who deal with OCD only a very small percentage present with this compulsion of cleaning/washing. Cleanliness and order are not any deciding factor in diagnosing OCD . This is just one example.

Anyways...I will move on...

an overview of what I am diagnosed with

In the realm of physical health I have been diagnosed with Hyperthyroidism, Malabsorption syndrome, Osteopenia, amenorrhea leading to long term infertility [I can't have children], and a number of heart problems diagnosed as Mitral valve prolapse and regurgitation, bradycardia, a systolic murmur, and arrhythmogenic right ventricular cardiomyopathy.

As far as mental health I have been diagnosed with reactive attachment disorder, Orthorexia nervosa, Anorexia nervosa, major depressive disorder, generalized anxiety disorder, complex PTSD[post traumatic stress disorder], and OCD[obsessive compulsive disorder]

Timeline of when I was diagnosed

Age 3 I was diagnosed with Reactive Attachment disorder

Age 8 I was diagnosed with OCD and Orthorexia nervosa

Age 10 I was diagnosed with a 2nd eating disorder Anorexia nervosa as well as bradycardia and a systolic heart murmur

Age 11 I was diagnosed with complex PTSD

Age 15 I was diagnosed with hyperthyroidism, major depressive disorder, generalized anxiety disorder, amenorrhea [never had a menstrual cycle in my life] and osteopenia

Age 16 I was diagnosed with malabsorption syndrome

And this year at age 17 I was told I am infertile/sterile, I was diagnosed with mitral valve regurgitation and prolapse and arrhythmogenic right ventricular cardiomyopathy.

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