Sarah Waisler

@sarah-waisler | contributor
Chronically ill and chronically sassy. I take my days one nap at a time.
Sarah Waisler

What It’s Like When My Ehlers-Danlos Syndrome Has a ‘Party’

I have Ehlers-Danlos Syndrome (or EDS, for short), a type of connective tissue disorder. EDS means that my body produces faulty collagen, the stuff that holds the body together. Think of collagen like a rubber band. In a “normal” human, that rubber band snaps back into place. In an EDS human (specifically hEDS, the kind that I have) the rubber band is loose and stretched out. Meaning, my joints tend to slip out of place. Oops! But that’s not the worst part of EDS. No, the worst part of EDS is that it’s insecure. That’s, right, EDS is that one girl from high school who could never go anywhere alone (looking at you, “Jessica”*). So, what does this mean? It means that EDS invites friends to the party (aka my body). And the friends all show up. In my body, EDS invited three dysautonomia siblings, postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS) and  orthostatic intolerance (OI). EDS also sent out invitations (that were unfortunately accepted) to gastroparesis, global intestinal dysmotility and Raynaud’s phenomenon. Hashimoto’s, mercury toxicity and antimony toxicity saw how much fun the party was and decided to show up as well. Two others were invited, common variable immune deficiency (CVID) and mitochondrial disease, but the RSVPs still haven’t come back on those yet. As you can tell, it’s a bit of a full house. So, what exactly is happening at this gathering? Well, EDS is having a grand ole time sublaxing (think of this as a partial dislocation) shoulders and fingers. Sometimes elbows and hips, too. POTS is deciding to speed up the heart rate to dangerously high levels, while NCS sees this and tries to correct it by bringing both the heart rate and  blood pressure down really low, really fast, resulting in fainting, or near fainting. These two just can’t get in sync! And OI is letting it happen with every change in position. And when these siblings get together, they impact everything the body is supposed to regulate on its own, like heart rate,  blood pressure, temperature, breathing, etc. Gastroparesis is hoarding everything that enters the stomach, not letting it pass for hours or sometimes days. Global intestinal dysmotility doesn’t think that’s fair and decides that for however long the stomach gets to hold on to its contents, the intestines will hold on twice as long! Raynaud’s has decided that the slightest change in temperature will result in diminished blood flow to extremities, because, why not. Hashimoto’s has decided to attack the thyroid to prove how much stronger it is. And the metal toxicities are having a blast in the brain and gut, messing with neurons and nerves and generally making mischief wherever they go. If CVID is here, it would explain getting sick after doing too much. Like, having people over for dinner. And if mitochondrial disease is here, it would explain the insurmountable fatigue and loss of muscle coordination. All in all, it’s a busy place. And that’s not even everything! I’m so used to living like this, I tend to forget what I experience isn’t “normal,” and that “healthy” people don’t have these same symptoms. I forget that it’s not normal to have nearly died twice or to have been fed through veins, or to have veins give out. I forget that healthy people may know what hunger feels like and when they’re full. I forget that waking up covered in bruises is not  something that happens to everyone and that no, you shouldn’t feel like you’re about to faint just by moving positions. So, what’s a girl to do about it? I take more medications than I care to admit. I have a feeding tube for daily saline to help keep me upright. I don’t eat solid food or anything  thicker than juice. I rest during the middle of the day and have a rollator (think walker with wheels and a seat) to go long distances. I shower sitting down, and I am always dressed in layers. I have a wheelchair for emergencies and use my disabled parking pass on bad days. I’ve been to the Cleveland Clinic (was told that I am too complicated), spoke with the country’s top motility specialist (who told me that, after  seeing my records, there was nothing he could do for me) and am currently being treated at the Mayo Clinic, in addition to my doctors in Georgia, Texas and North Carolina. I get my groceries and prescriptions delivered because leaving the house is difficult. But I also fight. And I fight dirty. I’ll do/try anything and everything to live a “normal” life. Juicing, coffee enemas, mantras, meditation, yoga,  acupuncture, acupressure, power of positivity … you name it I do it. Because I deserve to have my life back. While none of my conditions (other than the metal toxicity) currently have a cure, the minute they do I’ll be shutting down their party. I know it  won’t be easy, but it’ll be worth it. I’m more of a curl-up-with-a-good-book-and-tea kind of girl, anyway.

Sarah Waisler

What It’s Like When My Ehlers-Danlos Syndrome Has a ‘Party’

I have Ehlers-Danlos Syndrome (or EDS, for short), a type of connective tissue disorder. EDS means that my body produces faulty collagen, the stuff that holds the body together. Think of collagen like a rubber band. In a “normal” human, that rubber band snaps back into place. In an EDS human (specifically hEDS, the kind that I have) the rubber band is loose and stretched out. Meaning, my joints tend to slip out of place. Oops! But that’s not the worst part of EDS. No, the worst part of EDS is that it’s insecure. That’s, right, EDS is that one girl from high school who could never go anywhere alone (looking at you, “Jessica”*). So, what does this mean? It means that EDS invites friends to the party (aka my body). And the friends all show up. In my body, EDS invited three dysautonomia siblings, postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS) and  orthostatic intolerance (OI). EDS also sent out invitations (that were unfortunately accepted) to gastroparesis, global intestinal dysmotility and Raynaud’s phenomenon. Hashimoto’s, mercury toxicity and antimony toxicity saw how much fun the party was and decided to show up as well. Two others were invited, common variable immune deficiency (CVID) and mitochondrial disease, but the RSVPs still haven’t come back on those yet. As you can tell, it’s a bit of a full house. So, what exactly is happening at this gathering? Well, EDS is having a grand ole time sublaxing (think of this as a partial dislocation) shoulders and fingers. Sometimes elbows and hips, too. POTS is deciding to speed up the heart rate to dangerously high levels, while NCS sees this and tries to correct it by bringing both the heart rate and  blood pressure down really low, really fast, resulting in fainting, or near fainting. These two just can’t get in sync! And OI is letting it happen with every change in position. And when these siblings get together, they impact everything the body is supposed to regulate on its own, like heart rate,  blood pressure, temperature, breathing, etc. Gastroparesis is hoarding everything that enters the stomach, not letting it pass for hours or sometimes days. Global intestinal dysmotility doesn’t think that’s fair and decides that for however long the stomach gets to hold on to its contents, the intestines will hold on twice as long! Raynaud’s has decided that the slightest change in temperature will result in diminished blood flow to extremities, because, why not. Hashimoto’s has decided to attack the thyroid to prove how much stronger it is. And the metal toxicities are having a blast in the brain and gut, messing with neurons and nerves and generally making mischief wherever they go. If CVID is here, it would explain getting sick after doing too much. Like, having people over for dinner. And if mitochondrial disease is here, it would explain the insurmountable fatigue and loss of muscle coordination. All in all, it’s a busy place. And that’s not even everything! I’m so used to living like this, I tend to forget what I experience isn’t “normal,” and that “healthy” people don’t have these same symptoms. I forget that it’s not normal to have nearly died twice or to have been fed through veins, or to have veins give out. I forget that healthy people may know what hunger feels like and when they’re full. I forget that waking up covered in bruises is not  something that happens to everyone and that no, you shouldn’t feel like you’re about to faint just by moving positions. So, what’s a girl to do about it? I take more medications than I care to admit. I have a feeding tube for daily saline to help keep me upright. I don’t eat solid food or anything  thicker than juice. I rest during the middle of the day and have a rollator (think walker with wheels and a seat) to go long distances. I shower sitting down, and I am always dressed in layers. I have a wheelchair for emergencies and use my disabled parking pass on bad days. I’ve been to the Cleveland Clinic (was told that I am too complicated), spoke with the country’s top motility specialist (who told me that, after  seeing my records, there was nothing he could do for me) and am currently being treated at the Mayo Clinic, in addition to my doctors in Georgia, Texas and North Carolina. I get my groceries and prescriptions delivered because leaving the house is difficult. But I also fight. And I fight dirty. I’ll do/try anything and everything to live a “normal” life. Juicing, coffee enemas, mantras, meditation, yoga,  acupuncture, acupressure, power of positivity … you name it I do it. Because I deserve to have my life back. While none of my conditions (other than the metal toxicity) currently have a cure, the minute they do I’ll be shutting down their party. I know it  won’t be easy, but it’ll be worth it. I’m more of a curl-up-with-a-good-book-and-tea kind of girl, anyway.

Sarah Waisler

What to Know When You Feel Like Giving Up Because of Chronic Illness

Dear You, You are absolutely right. This does suck, it’s not fair, you do deserve better. This is not what you had planned and you would have done more if you had been given the chance. But you weren’t given that chance and my heart breaks for you. I won’t tell you it gets easier or better. You probably wouldn’t believe me if I did and let’s face it, it may not get easier. It may not get better. It may get harder and it may get worse. I won’t tell you not to lose hope, that one day there will be a cure for your incurable illnesses, that you need to be strong and try new treatments as they become available. I won’t tell you not to lose hope when they don’t work.   I won’t tell you this is all part of some plan, that it’s for the best. I won’t tell you this will make you a better and stronger person or that what you’re going through is a lesson of some sort. I won’t play the comparison game and tell you “at least it’s not (insert something here).” You’re smarter than that. I won’t tell you to be grateful for what you have and to be thankful you’re as lucky as you are. I won’t guilt and shame you into putting on a smile because “you’re depressing everyone around you.” So what? Feel what you need to feel. I won’t tell you to exercise more or eat better. I won’t tell you to get a better night’s sleep and to stop napping. I won’t tell you about this pill my aunt’s cousin’s best friend’s father took for a completely unrelated condition and that it cured him. You’ve had enough false hope to last you a lifetime. I will tell you that you are brave. Most people wouldn’t be able to do what you do on a daily basis. You have made it through 100 percent of your bad days and you are capable of making it through this one too. Cry, if you need to. Scream into a pillow. Talk to a friend. Have a photoshoot with your dog. Find one thing that will make this day bearable. Find it and do it. You owe it to yourself. I know it’s overwhelming. I also know you can do it. I know that, just for today, you can do it. Just for today, you can find the strength. Just for today, you can be hopeful. Just for today, you can hang in there. One day at a time. I believe in you. I love you. You are worth it. Love,You We want to hear your story. Become a Mighty contributor here. Thinkstock photo via FrancescoCorticchia.

Sarah Waisler

Grieving My Old Self After Chronic Illness Changed Me

I’ve been crying a lot. I cried this afternoon in frustration. Another doctor appointment, another diagnosis, another problem to fix. One that may not even be fixable. I cried early this morning, 3 a.m. to be exact. I was woken from a deep sleep, nauseous and in unbelievable pain. All to vomit food I had eaten 31 hours prior. I cried yesterday. I had walked into a doctor’s office with three diagnoses. I left with four. Four chronic, incurable conditions that severely impact quality of life. I cried the day before that, too. That was the day my shower chair arrived. I cried while using it, but was grateful, knowing my risk of passing out was significantly lower. And the day before that I cried because I knew I would need to use my wheelchair for a family outing. I’ll probably cry again tomorrow. I’ll cry when I get my disability placard too. I see a lot of crying in my future. And I am OK with that. Because I am grieving. I am grieving the loss of the life I thought I would have. I am grieving who I used to be. This loss is so profound – how do you grieve for someone who is here but not here? I no longer recognize myself. I don’t know who I am anymore. And I don’t like who chronic illness is turning me into. I am turning bitter, trapped in a body that no longer works, betrayed by the one thing I thought I could count on. I am becoming angry and jealous of those who can because I can’t. I am clinging to the ideas of should and would and could because I should get better, I would still be the same if I wasn’t sick, I could be independent before so why can’t I now? I don’t like this person. I don’t want to be this person. But right now I am, and that’s OK. Because I am still grieving. I’ll find myself again one day. I won’t be the same self I once was. Maybe I’ll be better, maybe I’ll just be different. Maybe I’ll still feel those pangs of jealousy, watching other people live the life I had once dreamed of. Maybe I won’t – maybe I’ll be able to just be happy for them. Maybe I’ll find a new life to dream about. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via g_muradin.

Sarah Waisler

What to Know When You Feel Like Giving Up Because of Chronic Illness

Dear You, You are absolutely right. This does suck, it’s not fair, you do deserve better. This is not what you had planned and you would have done more if you had been given the chance. But you weren’t given that chance and my heart breaks for you. I won’t tell you it gets easier or better. You probably wouldn’t believe me if I did and let’s face it, it may not get easier. It may not get better. It may get harder and it may get worse. I won’t tell you not to lose hope, that one day there will be a cure for your incurable illnesses, that you need to be strong and try new treatments as they become available. I won’t tell you not to lose hope when they don’t work.   I won’t tell you this is all part of some plan, that it’s for the best. I won’t tell you this will make you a better and stronger person or that what you’re going through is a lesson of some sort. I won’t play the comparison game and tell you “at least it’s not (insert something here).” You’re smarter than that. I won’t tell you to be grateful for what you have and to be thankful you’re as lucky as you are. I won’t guilt and shame you into putting on a smile because “you’re depressing everyone around you.” So what? Feel what you need to feel. I won’t tell you to exercise more or eat better. I won’t tell you to get a better night’s sleep and to stop napping. I won’t tell you about this pill my aunt’s cousin’s best friend’s father took for a completely unrelated condition and that it cured him. You’ve had enough false hope to last you a lifetime. I will tell you that you are brave. Most people wouldn’t be able to do what you do on a daily basis. You have made it through 100 percent of your bad days and you are capable of making it through this one too. Cry, if you need to. Scream into a pillow. Talk to a friend. Have a photoshoot with your dog. Find one thing that will make this day bearable. Find it and do it. You owe it to yourself. I know it’s overwhelming. I also know you can do it. I know that, just for today, you can do it. Just for today, you can find the strength. Just for today, you can be hopeful. Just for today, you can hang in there. One day at a time. I believe in you. I love you. You are worth it. Love,You We want to hear your story. Become a Mighty contributor here. Thinkstock photo via FrancescoCorticchia.

Sarah Waisler

Grieving My Old Self After Chronic Illness Changed Me

I’ve been crying a lot. I cried this afternoon in frustration. Another doctor appointment, another diagnosis, another problem to fix. One that may not even be fixable. I cried early this morning, 3 a.m. to be exact. I was woken from a deep sleep, nauseous and in unbelievable pain. All to vomit food I had eaten 31 hours prior. I cried yesterday. I had walked into a doctor’s office with three diagnoses. I left with four. Four chronic, incurable conditions that severely impact quality of life. I cried the day before that, too. That was the day my shower chair arrived. I cried while using it, but was grateful, knowing my risk of passing out was significantly lower. And the day before that I cried because I knew I would need to use my wheelchair for a family outing. I’ll probably cry again tomorrow. I’ll cry when I get my disability placard too. I see a lot of crying in my future. And I am OK with that. Because I am grieving. I am grieving the loss of the life I thought I would have. I am grieving who I used to be. This loss is so profound – how do you grieve for someone who is here but not here? I no longer recognize myself. I don’t know who I am anymore. And I don’t like who chronic illness is turning me into. I am turning bitter, trapped in a body that no longer works, betrayed by the one thing I thought I could count on. I am becoming angry and jealous of those who can because I can’t. I am clinging to the ideas of should and would and could because I should get better, I would still be the same if I wasn’t sick, I could be independent before so why can’t I now? I don’t like this person. I don’t want to be this person. But right now I am, and that’s OK. Because I am still grieving. I’ll find myself again one day. I won’t be the same self I once was. Maybe I’ll be better, maybe I’ll just be different. Maybe I’ll still feel those pangs of jealousy, watching other people live the life I had once dreamed of. Maybe I won’t – maybe I’ll be able to just be happy for them. Maybe I’ll find a new life to dream about. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via g_muradin.

Sarah Waisler

Fears of Someone With Chronic Illness

I was dying. Not in the “OMG that’s so funny, I’m dying” way, or the “every second we’re alive we’re closer to the time we’re going to die” way, either. I was “we’re not sure if she’ll make it to her next doctor appointment” dying. I was terrified. Now, I’m not dying. But I’m still scared. I’m scared I won’t be able to set out and accomplish everything I had imagined for myself. I’m scared I’ll have to settle for something less than (less than what, I don’t know). I’m scared I’ll develop a new autoimmune disease or my gastroparesis will get worse or dysautonomia will leave me bed-bound, or a combination of all three. I’m scared I’ll never get better than I am right now, in this very moment. Which, granted, is a hell of a lot better than where I started, but is still not good enough. I’m scared I’ll never create meaningful relationships because I’m a burden. I’m scared my health will scare others away. And I’m scared it won’t but I think it will so I’ll push others away first. I’m scared I’ll have to prove myself to every new doctor. I’m scared I won’t find a doctor who cares about finding the root cause and I’ll be stuck on a million different prescriptions for a million different things. I’m scared my medications will stop working. I’m scared I am more scared than angry. At least anger can be turned into motivation. Fear is debilitating. I am scared that I won’t be able to make it on my own and will be forced to move back home. And while that isn’t the worst thing in the world, I’m scared my parents would come to resent me for it. I’m scared I have “peaked,” that at 23 years old I’ve done all of the cool things I’m going to do and it’s all downhill from here. I’m scared I’ll have to stay overnight in a hospital. I’m scared I will never get back my independence – that I will always have to rely on someone for something and they’ll resent me for it. And I’ll resent them as another symbol of what I am not. If I’m being truly honest, I’m scared of getting better. I don’t know what that is anymore. I’m scared of the maintenance that comes with being chronically ill. Remembering all of the medications and vitamins and supplements. Charting symptoms. Forced time to rest. Conserving energy like it’s a precious resource. The doctor appointments, the exercise limitations, the dietary restrictions longer than my arm. I’m scared I’m not up to the challenge. I’m scared I’ll have to do it for the rest of my life. I’m scared no one really understands how hard it is to live in a body that doesn’t work. I’m scared that when I complain, I’m seen as overdramatic. And when I put on a smile and force myself to get through the day, people think I’m OK, I’m not sick. I’m scared I won’t be taken seriously. That I’ll be judged for not “looking sick” when I really and truly am. I’m scared to publish this post. And I’m scared if I don’t it’ll eat me up inside. And so, I hit submit. And I breathe. And I hope. And that is all I can do. That has to be enough. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via KatarzynaBialasiewicz.

Sarah Waisler

Hashimoto's, Gastroparesis, Dysautonomia: Sharing Burden of Illnesses

I don’t like feeling vulnerable and I’m not good at opening up. I firmly believe my problems are my own responsibility. But I have learned this past year there are some things that are too big to handle by myself. So, world, I am sharing my burden with you. My name is Sarah, and I am chronically ill. I have three chronic conditions – Hashimoto’s hypothyroiditis (an autoimmune disease that attacks and destroys the thyroid), gastroparesis (delayed emptying of the stomach) and dysautonomia (a condition where the parasympathetic and sympathetic nervous systems don’t know how to communicate properly). All three conditions are incurable and all three have limited treatment options. All three conditions have had drastic impacts on my life. Because of Hashimoto’s, my energy levels are almost nil. I need to nap in order to make it through the day. Gastroparesis caused me to lose 40 percent of my body weight in seven months…because I could not keep anything down, I was vomiting upwards of 20 times a day. It got to the point where I was scheduled for a surgery to place a feeding tube directly into my intestines. Thankfully, we found a medication that works, but has caused a tremendous amount of weight gain in a short period of time. Dysautonomia means almost passing out every time I get up and sometimes needing to use a wheelchair to get around. I have had to delay my life by a year just to try and manage these conditions.   To my friends, I am sorry. I pushed you away instead of letting you in. I was so afraid you would leave me, so I left first. Most of you don’t know how sick I got and that’s on me. I hope we can eventually get back to the friendship we once shared. To my family, thank you for pushing back, for letting me cry on your shoulder, for supporting me, for celebrating my victories and catching me when I fell. I know how much you worried and how much you care. I literally wouldn’t be here if it wasn’t for you. I was diagnosed with three chronic conditions before the age of 23. While this isn’t fair, it’s life. And what I’ve learned so far on my journey is that life is much more enjoyable when shared – even the difficult parts. So, world, thank you for letting me share. A burden becomes less of a burden when shouldered by more than one. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via blyjak.