GP and Colonic Inertia
Has anyone had any type of succesful treatment for both these disorders?
So up until about a year ago my vision has been perfect. Slowly and gradually it starting getting worse. I’ve seen an Optometrist and Opthomologist. Both says my eyes are healthy and glasses will not improve anything. So now I have been referred to a Neurological Opthamologist.
The phrase ‘the best years of your life’ usually refer to your teenage years. Parties, surrounded by friends, feeling and being rebellious, discovering new things and then, there’s school – studying for the most important exams that supposedly ‘set you up for life’. I always thought that having these exams at the most vulnerable time of our lives was strange. Teenagers are figuring out who they are, dealing with drama, going through puberty; there’s enough going on as it is.
For some, there’s even more going on. For example, from the age of fourteen my body started to become more fragile than before. I had always loved sport but began spraining and twisting my joints more and more. I remember, two days after fitness training for hockey, I woke up and couldn’t move my legs. It was terrifying and we had no idea why I seemed to have become paralysed from the hip down overnight. After being carried around to doctors and hospitals and getting an MRI scan done, nothing was found and no explanation was given. I was just given some crutches to use to hobble around on and I gradually started to walk again (fun fact: I still have those crutches today, seven years later).
A few months afterwards, I woke up with extreme stomach pain. And whenever I ate, it felt as though I’d been stabbed 20 times in my stomach. After seeing several doctors – including one who told me that I had to ‘get over it and put up with it’ – there were still no answers. I lost a lot of weight due to the pain when I ate. It was strange that, although I really was in agony, a little part of me felt a bit happy that I’d lost weight. I think it was because we are surrounded by diet campaigns and it seemed as though every advertisement I saw was to help you lose weight. I felt as though it was a goal that we are all predispositioned to have. I do have to stress: my pain was genuine and at this point, I hadn’t had any damaging thoughts and didn’t avoid food on purpose. My digestive system just wasn’t working properly.
My GP referred me to a consultant at the local hospital who noticed that I was hypermobile and had just gone to a medical conference linking hypermobility to digestive issues. He then told us about a genetic medical condition called Ehlers Danlos Syndrome (Ehlers Danlos Syndrome) – a connective tissue disorder, affecting all of the collagen in the body which supports joints, muscles and organs. I was then referred to a specialist in London, put on some gut stimulating medication and laxatives, advised to go on different diets to see what worked for me (I quickly found out that gluten and dairy were not my friends!) and I was sent for some tests to determine what was actually wrong with my digestive system.
Long story short, it turns out that my digestive system works very slowly and has structural abnormalities, meaning that digesting and passing food in general was difficult (I have colonic inertia, a rectocele, a rectal intussusception and a rectal prolapse). This was because Ehlers Danlos Syndrome has caused certain parts of my digestive system to become weak as it doesn’t have the strength and support it needs from my muscles in the digestive system. As a teenage girl, these problems made me very self-conscious as I was quite embarrassed to explain this to my friends as it was essentially all about how I was constipated – I felt abnormal. It is a very taboo subject, after all. I had this condition which no one knew about and I became the girl who couldn’t eat certain foods and who got injured all the time as my joints are a lot more susceptible to sprains, subluxations etc. I ended up giving up a lot of the sport I loved, although I could still do some running. (Giving up hockey was devastating.) I became quite withdrawn and didn’t feel like I fitted in with the majority of people at school.
depression soon took over and, boy, it really did take its toll. I was in a relationship at the time which often became difficult. I tried my best to hide my feelings at school – I became quite good at it – but at night, when I came back home, I was self-harming myself for being ‘different’ and hating who I was and how I looked. Living with a chronic illness at the same time as battling with your own mind is absolutely terrifying. I started thinking how I could fit in with others at school and how I could feel better and less ashamed of who I was. I envied how everyone’s bodies worked properly. I then remembered how I felt when I first lost weight – I felt good; as though I had ‘achieved’ something, thanks to our messed up society. The images I saw on social media didn’t exactly help my confidence either. These can be destructive and only display society’s ideals and when I think about this now, it actually sickens me and fills me with so much anger about the number of lives that these have ruined or even destroyed by trying to live up to these ‘ideals’. I will not describe the images that I used to idealise, but they were extremely unhealthy. I soon began to hate everything about the way I looked. I hated my stomach and the way it bloated so much, the way my legs looked and I called them ‘stumpy’, the way my nose looks big, the way my ears stick out, the gaps between my teeth.. There was very little I could stand to look at in the mirror.
My medication (mainly laxatives) increased to help my digestion that I was making worse by not eating. My parents soon caught on and arranged some therapy on the NHS (through CAMHS; Children’s and Adolescent’s mental health Service) – which didn’t help at all since I wasn’t dangerously ill or underweight so I wasn’t taken seriously at that time as my BMI was still in the ‘healthy range’. If I had gotten the right help from the start, my future circumstances could have been a lot different. Still, my parents still kept an eye on me and we did argue about it all occasionally – which made me feel even worse about myself, as though I was a bad daughter and a disappointment. I soon felt as though the only thing I was good at was hiding how I felt and not eating. I managed to get by without being too unwell when I did my GCSEs and I, surprisingly, did well and I actually enjoyed my summer – a few times I skipped meals or self-harmed, but it wasn’t as frequent as before. It was after summer that broke me.
I started sixth form in September with a slightly different mind-set; a positive mind-set – at first. But I soon spiralled into old habits and it was much worse this time. By October, things had gotten so bad that my two year relationship ended – looking back on it now, I know it was the best thing to do but that didn’t make things any easier at the time. It was so difficult and depression smacked me in the face even harder – it was my first heart break after all. I didn’t want to eat at all, I harmed myself a lot more, I couldn’t concentrate at school and became even more withdrawn from my friends. My main focus was on how much weight I could lose. I thought that by doing that, all my problems would go away. It’s a horribly competitive illness and nothing was ever enough and the goals were always set higher and higher. It was never going to be enough until it was too late. I very quickly lost lots of weight and became dangerously ill – not that I believed I was ill. The school contacted my parents, who contacted my GP and arranged for some different mental health professionals to see me. Christmas soon came – the most terrifying time for those with eating disorders as food surrounds us. It was probably the most stressful and scariest Christmas we’ve had as a family. When my Grandad saw me, he couldn’t even stay as he was too upset to even look at me.
After the holidays, I returned to school for only two days before being told I couldn’t go back until I had gained weight. My parents took me to a meeting where we were met by the mental health professionals that had been arranged to meet with us – who actually took me seriously now that this had become life-threatening. The nurse told me I was one of the worst cases she had seen in a long time; I needed to be hospitalized and put on a serious diet to gain weight. I remember just falling to the ground at that moment. Screaming. Having a massive panic attack. Wanting to die. Anything to escape from the hell I was trapped in. It’s still one of the most terrifying moments of my life. I was incredibly lucky as my parents fought so hard to keep me at home (my dad works from home and my mum worked just next door so they were able to persuade them to keep me at home where they would keep an eye on me).
Fighting to prevent me from going into hospital and committing to take me to therapy at least once a week is one of the greatest things my parents have ever done for me. Over the next five months, I gradually gained weight, which was horrible to come to terms with and I hated them for it at the time. They know I didn’t mean it though. Anything that may have been used to hurt myself with was hidden and my mum even slept in my room at times to make sure I wasn’t exercising excessively during the night. They taught me how to cook and I tried lots of new foods. I found them delicious – but I wouldn’t dare admit it at first. It took ages until I started enjoying food again instead of crying whenever I had to eat. This was an incredibly lonely time for me as well; all my friends were busy with their lives at school and the things going on there – I missed out on a lot.
I eventually gained enough weight to go back to school, just in time for my exams. My teachers had sent me work to do from home and I received a lot of one-to-one lessons from them. Although I had physically recovered, I was still very fragile, mentally, and it was extremely difficult to not return to old bad habits. Needless to say, my closest friends were keeping an eye on me and I always went home for lunch so my family could make sure I was eating. My AS level results weren’t great and I did have to retake a lot of them the following year – not ideal!
My final year at school. I had been discharged from therapy now that I was at a healthy weight. It still didn’t mean that I was mentally recovered. It ended up being slightly different. I had a better relationship with food but it was all very controlled. I allowed myself to eat – but I still restricted myself in eating a lot of things and often stuck to my ‘safe foods’ and I made sure I was moving around a lot and doing lots of exercise; as I wasn’t losing lots of weight very quickly and was still eating, I think I got away with it. My dysfunctional digestive system kept getting worse and worse and I still had to increase the laxatives I was taking but after doing this after a few years, I just got on with it. This carried on until I left for university. Over the summer I had lost quite a bit of weight – my mum knew this and had a word with me. I just said that I’d promise I’d get better.
I really did try to turn it around at university. Unfortunately, with Ehlers Danlos Syndrome you need to pace yourself as it is extremely easy to overdo it. I didn’t take this into consideration by going out every night at Freshers – every night for two weeks. I felt that I ought to ‘catch up’ on what I had missed when I was home bound; I wanted to be normal and part of everything. It came at a price though. I became so ill and my body gave up on me, leaving me to live on soups and smoothies as solid food couldn’t be digested and caused extreme pain if it wasn’t blended up (as I was severely constipated). So I came back home, upped my laxatives (again) and slowly started to increase the amount of solid food I ate, whilst relying on lots and lots of coffee for its ‘magical abilities’ with the digestive system. I started to eat solids again – still being a little cautious of ‘unsafe’ foods (ie. food high in calories) until one day in June 2017, I couldn’t eat at all, yet again.
This time, even soups and smoothies made me constipated and I ended up on Ensure Nutritional supplement drinks. Five months later, my mum and I went to see a colorectal surgeon in London that I had been referred to a while ago to see if surgery could help. I read, before the appointment to see if I had any options, that some people with Ehlers Danlos Syndrome had a stoma in order to bypass the most problematic areas of their digestive system (eg. the colon and rectum for me). A stoma is a bit of your intestine (small or large) that sticks out your stomach and waste passes through it, into a bag – also known as an ileostomy, colostomy or urostomy – depending on the type. This option was the only one that gave me hope as my quality of life was awful; I was on a liquid diet, took loads of laxatives and became incontinent because of them. The surgeon told me that he wouldn’t want to do anything as my case was too complicated. When I asked about having a stoma, he seemed… sort of open to the idea but still reluctant to do anything as he didn’t think it would help.
We got a second opinion from another colorectal surgeon and voila! He said that something had to be done as I couldn’t keep living like this and that overtime, all my digestive problems would just get worse and worse. I soon got a date for my ileostomy to be formed and it all became very real. I turned to the internet for some advice from others who had stomas and I found this incredible community on Instagram, sharing their everyday lives, being positive whilst still sharing the problems and difficulties that come with having a stoma and, as well as this community, I found another one celebrating diversity, body acceptance and confidence and self-love which has (and still does) inspire me so much. I tried stoma bags on so I knew what my body was going to look like so I could get my head around the surgery and how I was going to be after. In June 2018, after just over a whole YEAR of a clear, liquid diet, I had the surgery that I hoped would change my life for the better. It’s ironic how I became so desperate to eat food again.
Two days after I had the surgery, I was able to have a vanilla pudding and wasn’t taking any laxatives and my stomach and small intestine were okay and they worked! I still never felt hungry and so, the process of ‘weaning’ myself began (not many people are weaned into solid food twice in their lives!). Months later, I’m able to go out and eat and, what’s even more important, I want to eat and finally fully appreciate food again. A year after my surgery, I tried gluten and dairy again. This was terrifying for me, as I was so traumatised by the pain they used to cause me. I tried little bits, one thing at a time. And I’m so please to say that I am now able to eat gluten and dairy. This is because it was my colon that couldn’t digest these (due to the FODMAPs) and now my colon is out the way, I have no problem digesting bread and cheese anymore.
For the first time in 6 years, I actually feel comfortable in my own skin and comfortable with who I am. Sure, I might have one or two bad days every now and then but I push past it, I can eat what I want and I do not feel guilty. I don’t exercise excessively in order to lose weight and to fit into society’s ideal of what is normal and how we are supposed to look. I’ve come to love and accept the way my stomach, legs, nose, ears and teeth look, instead for getting surgery – like I originally had planned to. I look in the mirror and I don’t cry anymore. It’s ironic how a bag of poo attached to my stomach could change my whole perspective on how I feel about myself.
Today, I’m in a very happy relationship, where he understands and accepts my chronic illness, and I’m taking part and modelling for campaigns about diversity. I’m dedicated to raise awareness for Ehlers Danlos Syndrome, for stomas, mental health, for eating disorders, for diversity and for encouraging people to love and accept their bodies the way they are. I want to be the girl I needed to see when I was struggling. I want to be the best role model I can be. Everything I do and am doing, is for my younger self and all the other people who may be struggling with the same things I did.
When I was 17 I was a junior in high school. I was eating out with friends and noticed that within the first two bites of food I all of a sudden became so full it bordered I’m feeling sick, in pain and like I couldn’t breathe. My throat felt like it was closing up too. After many hours this subsided. The next day it happened again when I took only the first couple bites of food. I thought this was my esophagus as I was not aware of the anatomy of my digestive system, why did I need to be? I was fine, right? This went on for weeks and months and sometimes I’d gag violently but vomit minimally. I lost weight so rapidly I was completely unaware of how I looked. I just was aware of the fact that I was suffering some mysterious eating symptom in what I assumed was my esophagus. I went to gi dr after gi dr and had endoscopy. They were inconclusive. They said I had heart burn. Yes I did but it’s something else I pleaded. Meanwhile I’m failing out of school because I’m so sick that I have to drop out and home school. I don’t eat. I finally land at a motility Dr. They do some testing and diagnose me with Gastroparesis or delayed gastric emptying. I was put on medicines that help make my stomach pump. Motility means movement. My stomach was not moving. At this time there were not many strides in motility. The medicine was not perfect. We even put me on an all liquid diet to starve off bacteria for two weeks. I could only have a yucky powder drink three times a day for two weeks and then see what happens when I eat. I went to prom starved I remember and dreaming off pizza. Over time my colon was getting worse. Over the counter laxatives gentle and non gentle were starting to not work. I was on Miralax before it was otc and it was an rx. I was on all the first trials of IBS – C medications. I didn’t have IBS-C I had something called Colonic Inertia and small bowel dysmotility They would even give me medications for other uses that had diarrhea as a side effect in hopes it would make me go. Between my stomach and colon my whole digestive tract was becoming slow and partially paralyzed. This is a torture and pain that is hard to fathom and it happened to me. I went 20 years living half a life due to these disorders and medicine not making many strides in motility. They don’t know if it’s totally idiopathic or if it’s due to an underlying disease I’ve not been tested for yet. I always knew it would get to the point that my colon would be totally useless. It was so painful and suffocating. I wouldn’t go to the bathroom for a month at a time and I’d have to go to get colonics and those stopped working in the end … just in time for surgery. Bowel preps wouldn’t work either so before surgery I had a series of two back to back colonics and cried in pain the whole time. I was malnourished as well as I couldnt eat. I had the total colectomy and my small bowel connected to my rectum. The surgeon said it was redundant, twisty, stretched and nothing would go through it anymore. Plus my testing showed little to no movement. I was so surprised it showed any because nothing was working. I needed the Jaws of Life to get that organ working . After surgery, For two months I felt something was wrong. I had no bowel movements. Was back on laxatives and it was more painful this time. Testing such as mris and ct scans and torturous enterographies came back normal. I was in a very dark place. I just had my colon removed. How can this be. My Dr was starting to blame me and I was starting to blame me. Finally one last test showed something. I went in for emergency exploratory surgery and they found my rectum where they made the connection of my bowel was linking and tipping over. My small bowel fell into my pelvis and I had a huge internal hernia as it was being smashed between my rectum and sacrum and some adhesions. I was right. Something was VERY WRONG. Goes to show you always know your body. They fixed my rectum , the hernia, the adhesions and gave me a temporary loop iliostomy. Three weeks later I had a bowel obstruction called an Intussusception. This is rare and it’s hands down the worst night of my life. It is when your intestine telescopes inside itself like an actual telescope. The pain is … no words are invented in the English language. It released in diagnostic testing when I drank barium. I had pseudo obstructions from there in my bowel. Went home on iv nutrition called tpn. Survived two back to back episodes of sepsis. This all happened within the span of 7 months, the first surgery in Dec 2019 to present. I’m 36 now . Now I’m just trying to recover from it all and don’t know where I go from here. I’ll always have these complex hard to treat disorders. I might have to be on ivs on and off my whole life. I’m not sure if I’ll have my ostomy forever or not. I have a lot of pain still, get obstructions and cannot freely eat but I am trying to keep hope . I do have some better days! Medicine is still making strides I’m telling my story now though and the main thing I want to say is you know your body more than anyone. If you think something is wrong, advocate advocate advocate.
I was having a lot of abdominal pain and constipation, I missed a lot of school, and I went to numerous doctors and had numerous tests, and they would pretty much all come back normal, which was very frustrating, in fact, one doctor suggested that the pain I was having was all in my head, and my mom had to be hospitalized because she was getting so stressed and worried for “believing me” needless to say we never went back to see her. I finally went to a wonderful pediatric gastroenterologist (Dr Janet Harnsberger) and she had me do a Sitz Marker Study (it’s where I swallowed a clear capsule with 20 rings in it that show up on x-rays) and so after I had an x-ray every day for a week, the X-ray showed that all the rings were still in my colon, so I was diagnosed with Colonic Inertia, I was 13 years old, so we found a surgeon who knew a lot about Colonic Inertia (Dr Dayton) he was so awesome, I wish that he was still my doctor and hadn’t retired! So I had my total colectomy (my colon was removed) and the small bowel was attached to my rectum. I was fine for a while but eventually all the pain came back, it turned out that the cause was my rectum, it was Rectal Inertia, so at about 16 years old, they removed my rectum and made a j-pouch, and I had a temporary ileostomy until that healed, then he connected the small bowel to the j-pouch, unfortunately it wasn’t very long before the pain came back again, so I had to have the ileostomy again. After a while I wanted to try to have it reversed because I didn’t really like having it, well obviously my surgeon thought/knew it wouldn’t work, but I really wanted to have it reversed and I basically begged him, so he told me that he would do it, but if it doesn’t work and all my pain came back, he wouldn’t reverse it again, so I agreed, and of course after having it reversed, it wasn’t very long before the pain did come back, so I now have a permanent ileostomy. I’m 38 years old now, and I pretty much have inertia throughout my entire digestive system, and So I live with chronic abdominal pain.
A few doctors have told me I was too elite of an athlete to have EDS. However, that myth was proved wrong yesterday. I just happen to have an incredibly high pain tolerance, so Ehler’s-Danlos Syndrome went undiagnosed for ten years.
I remember telling myself to “love the pain” as I raced with stress fractured, or dislocated, ribs (caused by coughing from asthma attacks because of loose ligaments due to EDS). And I would tell myself to “love the pain” when I was racing with stress fractured shins, that I brushed off as shin splints.
EDS (EDS) is a genetic connective tissue disorder. I have been searching for answers to my mysterious illnesses that have become severely debilitating over the past ten years. And I finally know now – it’s EDS.
I have been seen by, and done full work ups at many hospitals and clinics. I received diagnoses of Hyperadrenergic POTS (hyper POTS), Gastroparesis (slow gastric motility), MCAS, CFS, Colonic Inertia (no motility in my colon), Hashimoto’s, and a few misdiagnoses like Rumination Syndrome and Visceral Hypersensitivity.
I have been an inpatient or residential patient at eleven treatment center admissions over the past ten years, at eight different facilities. I have an eating disorders in addition to the medical illnesses. They get intertwined, because when my Gastroparesis causes me to throw up, I stop wanting to eat. And then when I get to a low, low weight my brain tells me to keep losing weight. I struggle with Anorexia (binge/purge type), so I have benefited from these admissions at treatment centers. However, they have never been able to help me stay in recovery, or even have any resemblance of recovery along the way. I typically would relapse before I was even discharged. I would keep it secret, because I didn’t want to be in treatment any longer. And I knew if they knew I literally couldn’t stop vomiting, they would step me up to a higher level of care. And I didn’t want to be at a higher level of care.
I have experienced less than ideal care in some of these treatment centers. Some of these hospitals and treatment centers were amazing and saved my life, and others treated me without compassionate care because they thought I had control over my involuntary vomiting.
The most recent stay I had in treatment was this past January to February. I was told my feed was too expensive, as if my life is worth twenty bucks, so I was put on a feed formula I’m allergic to. I was fed the largest size snack, even though the dietician knew I would vomit after eating it, for hours. And this happened day after day. The only person I trust at this facility still is the dietary director. On my last day, we spoke about how my health keeps declining. And now I have my answer for WHY my health keeps declining. It explains why I vomit 15 hours after ingesting food. It explains why I’m nauseous all the time. It explains why I have dry mouth all the goddamn time. It explains why I have post nasal drip constantly. It explains why I used to be able to eat food and why I can’t anymore. It explains why I needed an ileostomy after 7 years of trying medications and laxatives. It explains why my body feels like it hasn’t aged in some ways (can still sit frog legged and lie back), but feel like I’m 80 already in other ways, like how my joints crack and pop every step I take. It explains why I sweat so much and have hot flashes at the age of 29. It explains why I had compartment syndrome, and why the first surgery to release my compartments didn’t work.
I have Ehler’s Danlos Syndrome. I can finally understand why I have all these diagnoses and symptoms. Yes, I still am in recovery for an eating disorders, and I must keep up with my nutrition or else I will be forced to go back to a treatment center, where providers don’t know much about EDS and they think it’s all in the patient’s head. So, I have to continue feeding myself. But I don’t have to feel so much shame for causing my stomach to stop working, when I agreed to put in a feeding tube. I don’t have to feel shame that I couldn’t get through this past treatment center’s step down program. I don’t have to feel shame. I didn’t ask for any of this. I didn’t cause any of my symptoms. I’m sure having an eating disorders (that was brought on by EDS symptoms and Gastroparesis), made my GI system less able to function, but it didn’t CAUSE the medical illnesses. The EDS did.
A lot of eating disorders patients are finding out they have EDS, like me. We have all been chronic relapsers at some point; always in and out of treatment. Nobody knows why these two are linked, but I can say for sure that the stress of being chronically ill and not in control of how you feel physically, causes a lot of distress. And those of us wired for black and white and obsessive thinking, sometimes develop eating disorders. Maybe there is more of a connection, but I know that chronic illness and chronic pain can cause significant mental health issues for people.
When a doctor hints that we are causing our symptoms due to past trauma, or current stress and anxiety, it only makes us feel crazy. I have been told it’s all in my head for ten years. And now that I know it’s not my craziness that has caused me to need a feeding tube and an ileostomy. I now know it’s a genetic disorder getting progressively worse. And that is hard to accept. It hasn’t sunk in that this doesn’t have a cure, yet. But now I have an answer. And that validates my memories, my experiences, my symptoms, and my truth.
I’ve been told by so many therapists that I need to get off the internet and stop researching medical illnesses, and to just accept that my anxiety and past trauma is the source of my vomiting and GI issues.
I didn’t listen. I googled every rare illness that I could possibly have. I went on facebook and became a member of a bunch of different groups. I read the posts, I asked questions, and I would research every insomnia-filled night, in every waiting room, on long car-rides to doctor’s appointments, on airplanes across the country for treatment or doctors. I researched everything from Cyclical Vomiting Syndrome, to Lupus, to Mitochondrial disease. I found out a lot of people who have POTS, MCAS, Autoimmune diseases, CFS, and Gastroparesis often have EDS too. But after hearing from a doctor that I couldn’t have been the athlete I was with EDS, I stopped reading the posts about it. I wrote it off for a few years.
I met this delightful young lady at treatment this past January and February and she knew a lot about EDS because she has it too. So we got talking and she made me realize I am hypermobile and I do have a lot of the symptoms. She gave me her Geneticist’s name and I called to make an appointment, figuring it would be months. He got me in three weeks from when I called. Now I wish I could free my friend from treatment, who helped me find this Doctor who diagnosed me with EDS. We are waiting to find out which type I have, in addition to Hypermobile EDS.
I’m excited to have an answer, but I am not excited to have an incurable genetic disorder that I have a 50% chance of passing on to my future children. Luckily my mom doesn’t have symptoms, so she had no reason to find out she and my grandmother had EDS too. However, for reasons I don’t understand, I am very symptomatic, and in a lot of ways I am crippled by my symptoms. The diagnosis doesn’t mean now we are going to know exactly how to treat the involuntary vomiting. So, in a way, the diagnosis doesn’t make my daily living any better or worse. But knowing that I’m not crazy, allows me to sink into the knowing in me that just knew this was medical and not all psychological. I am proud I kept asking questions and kept digging even after therapists had told my parents I shouldn’t go to doctors appointments anymore because I saw too many specialists. My parents have witnessed my symptoms and so they were able to fight for me and believe that something medical was underlying these issues.
My parents and siblings have been my biggest supporters along this journey. My mom and dad have spent weeks living out of a hotel room while staying at the Mayo Clinic, spent days traveling to and from treatment centers, they’ve spent hours sitting next to me in the emergency room’s waiting room, and then hours getting one blood draw and fluids. My parents have fought for me when treatment centers tried to tell me something that I knew was wrong and/or detrimental. When treatment centers wouldn’t listen to me, my parents would call, email, and demand they listen to me, because I know my body best. My siblings have come to visit me in treatment as much as they can. They have spent hours on the phone with me balling my eyes out because yet another doctor had dismissed me, or told me it was all in my head. My brother and sister have done weekly therapy with treatment centers with me on multiple occasions, as have my parents. My brother came to visit me weekly while I was in Denver in treatment. My sister drove from Iowa to Colorado to visit me while I was in treatment. I have an amazing family who I love so much. I am grateful for my family. They have believed me, and believed in me. They have been the ones who can really tell if I’m actually crazy (from malnutrition), or if I’m in a sane mindset. They are the ones who lift me up when my health is really poor.
My service dog, (whom I owner-trained) is the reason I am alive today. If not for him, I would have given up a long time ago. But I didn’t want to leave him wondering where I went. The joy I see in his eyes when I come home after being in treatment for months reminds me why I never want to leave this sweet dog ever again. I could not kill myself, or let myself die, and leave my dog to witness it. I couldn’t do that to this beautiful creature, who loves so unconditionally, who is loyal to me, who is deeply connected to my inner workings and knows exactly when I am going to pass out, and alerts so I can sit down. Training him to do tasks and tricks brings life to both of us. We are inseparable. He is my other half. I’ve felt like half a person my whole life, and Ector’s pieces fit so well with mine. He is sassy, lovable, gentle, playful, mischievous, and clever. My healer asked me to imagine a time when I was overwhelmed by feeling love, and I immediately thought of my love for Ector. A pet may just be a dog, but for me, Ector is my lifeline. If only dogs could speak! I’m sure he knew exactly what was wrong with me this whole time.
Never give up on yourself. Trust that voice that KNOWS something is wrong with how things are being addressed. I don’t know my reason for being on this earth yet, but I know it’ll become apparent as I begin to heal.
Today I am simply grateful to know my WHY.
feels like all I ever do is suffer. feeling very bed bound lately and I don’t have anyone in my life who I feel like supports me. years of my young adulthood have been robbed by this chronic illness. I’ve been so done for so long. it feels unethical at this point that I’ve had to beg my parents to allow me to see the right doctors. I’ve had to plead my case to my mom so many times about how I truly am physically sick and how I can’t get better with ‘positive thinking’. its useless. I’m in so much pain today that I have to cancel my dermatology appt. did I mention I have a contagious skin disease too??? yep. the cherry on top. it’s treatable but for some reason I’m “the worst case my dermatologist has ever seen” and it won’t go away and it keeps spreading on my body. I feel like an untouchable. I don’t even know how I got it.
I guess I’m still mourning who I could’ve been. and still mourning who I used to be. I had so much going for me. But this illness just got worse, not better. and everything I’ve worked for has crumbled in front of my eyes.
but mainly today I’m just focused on surviving the pain. ugh.
#ChronicIllness #ChronicPain #Headaches #BackPain #ColonicInertia #PelvicFloorDysfunction #Depression #nausea