I met an absolutely amazing woman yesterday who completely changed the course of my ongoing health journey. She is a older sister missionary who occasionally helps conduct a meeting that I attend, and prior to being called as a missionary she devoted herself to helping people with undiagnosed autoimmune diseases.
When I mentioned that I was currently going through the process of trying to receive a diagnosis for an autoimmune disease, we talked for a good half hour about symptoms and doctors and health plans and books and studies. For the first time ever, I received actual confirmation from a living human being that my plethora of symptoms actually mean something. I have never had someone tell me, medical professional or otherwise, that my abdominal pain and food issues are connected to my other symptoms. For years now, I have tried diets upon diets, meal plans for everything from Crohns to Celiac to IBS to lactose intolerance, and now someone has finally told me that yes, it actually is part of the autoimmune disorder. She gave me the name of Dr. Tracy Frech, a doctor she has seen for years who specializes in Scleroderma at the University of Utah, specifically focusing on diagnosing the "undiagnosable" or beginning-stage patients, with a huge system of clinical trials and treatment plans. Even with her 2-3 month waiting list, I called first thing this morning to get everything squared away to start seeing her as my new rheumetologist.
The sister missionary also told me about a book called "The Autoimmune Solution" by Dr. Amy Myers. She went on and on about how completely this book changed her life and how absolutely essential it had been to her recovery and treatment. You can only imagine the tears of joy that appeared as I wrote down every word she said about how she is now able to exercise for 40 minutes a day without pain, and how certain lesser-known changes in her lifestyle completely changed her quality of life. She said the book contains not only information about the diseases themselves, but details a step-by-step treatment plan based on your symptoms, focusing primarily on diet, supplements, and exercises. I ordered it on Amazon an hour after leaving our meeting, and I plan to follow it to a T. Even if it tells me to eat fish... at this point, having a plan and a timeline are the biggest blessings I have ever received! Dr. Myers not only published the book, but has an entire website - amymyersmd.com - with a whole detailed plan including grocery lists, recipe books, recorded interviews with other professionals, stress management tools, and just so many solutions that I never thought were possible.
This is the most hope I have felt since a year ago when my confounding symptoms began worsening. I've finally met a person who knows and understands and has information about the things I am experiencing. Sister Jenks was quite literally an answer to my desperate prayers.
Wednesday, June 7, 2017
Wednesday, May 3, 2017
A road not yet traveled...?
So I did a sleep study two weeks ago... you know the kind where you go to a hospital and sleep in a room with a crapton of monitors on your head and chest and legs and arms while they watch you through a camera all night? Surprisingly, it wasn't actually that bad. Unfortunately, I got the results back and nothing was abnormal enough to raise any red flags. So back to square one I guess, my fatigue problems are not apparently due to lack of quality sleep.
Something I have been thinking about bringing up with my doctor apparently is something down a totally different road that we (surprisingly) haven't even really addressed, and that's the possibility of a gluten intolerance. For any of you who have really ever met me, there's a very high chance that you know that my diet is rather limited. This, however, is not due to allergies as far as I know, and is mostly just a result of trial and error with different foods. For example, I haven't eaten potatoes in years because I know that they upset my stomach. I can only eat about 15 grapes at a time or a 1/4 cup of tomato sauce before my stomach starts getting angry at me. Grains though, I've always thought were never a problem. I mean, I can usually eat breads and pastas with no upset; in fact I practically live off pasta. But after searching all corners of possibilities with the symptoms I'm experiencing, most of them match up with the symptoms of a gluten intolerance. I don't usually get an upset stomach immediately after eating grains the same as I would with tomato sauces or juice or potatoes or corn, but at this point, my stomach basically hurts so often that it's hard to tell what caused it anymore. I'm getting little red dots on my chest and arms, there's the fatigue, joint pain, nausea, migraines, mouth ulcers, weight changes, inconsistent stools, vertigo, bloating... the list goes on.
I'm obviously not an expert on intolerances or sensitivities to food, but I'm just hoping to find some answers. When symptoms start to add up, I start looking at all possibilities. If this goes somewhere, I can't say I'll be relieved (due to my pasta habits), but at least I'll have an inkling of an idea what might be going on inside my body.
Something I have been thinking about bringing up with my doctor apparently is something down a totally different road that we (surprisingly) haven't even really addressed, and that's the possibility of a gluten intolerance. For any of you who have really ever met me, there's a very high chance that you know that my diet is rather limited. This, however, is not due to allergies as far as I know, and is mostly just a result of trial and error with different foods. For example, I haven't eaten potatoes in years because I know that they upset my stomach. I can only eat about 15 grapes at a time or a 1/4 cup of tomato sauce before my stomach starts getting angry at me. Grains though, I've always thought were never a problem. I mean, I can usually eat breads and pastas with no upset; in fact I practically live off pasta. But after searching all corners of possibilities with the symptoms I'm experiencing, most of them match up with the symptoms of a gluten intolerance. I don't usually get an upset stomach immediately after eating grains the same as I would with tomato sauces or juice or potatoes or corn, but at this point, my stomach basically hurts so often that it's hard to tell what caused it anymore. I'm getting little red dots on my chest and arms, there's the fatigue, joint pain, nausea, migraines, mouth ulcers, weight changes, inconsistent stools, vertigo, bloating... the list goes on.
I'm obviously not an expert on intolerances or sensitivities to food, but I'm just hoping to find some answers. When symptoms start to add up, I start looking at all possibilities. If this goes somewhere, I can't say I'll be relieved (due to my pasta habits), but at least I'll have an inkling of an idea what might be going on inside my body.
Wednesday, April 5, 2017
Okay, what next?
The main thing that's been getting me down lately is my lack of energy that I used to have so much of. I took a trip to the ER today after getting off work early because I was just so fatigued, so weak, so nauseous, everything was just getting to be too much. I had some pretty bad and pretty weird chest pains yesterday, so they took chest x-rays. As usual, they didn't find anything, as no one ever really has, but it never hurts to make sure new pains aren't bad pains. Between the chest pain, sore throat, and bad coughing and fatigue, I'm just hoping and praying that mono hasn't decided to come by for another visit. When I got mono last May, it kept me bedridden for more than 2 weeks, and that's what sort of kicked off my whole fatigue party of 2016-2017.
I don't want to keep being tired. I want to feel okay with driving more than half an hour by myself and not being afraid that I might fall asleep. I want to be able to go on a spontaneous hike and not feel the need to sit down every five minutes. I'm ready to figure out what's wrong with me.
Next up in the Allie Treatment Plan is for me to do a full sleep study, the creepy kind where they watch me while I sleep. Not sure what's in store after that, but we're taking it slow I guess, making sure we don't miss anything or move too fast. I have new sleep meds to try to jump-start my sleep cycles, which so far have worked a little better than melatonin, but time will tell.
Friday, March 17, 2017
In Limbo
The ICD-10 hospital billing code Z71.1 denotes a patient "with feared health complaint in whom no diagnosis has been made." If I'm being honest, I hate billing codes. The hospital registrars or coordinators sometimes use these codes on orders or accounts instead of writing out the actual or suspected diagnosis, and it is my job as a radiology clerk to figure out what they mean and replace the code with the diagnosis. I'm pretty sure we have a program for it, one where you can search either the code or the diagnosis and it gives you the other, but honestly, it's easiest to just google it.
I like working at a hospital. I applied for my job because I figured I would know what I was doing, since I've been in and out of hospitals since high school. I've probably gone through close to 10 primary care doctors since I was 14, some helpful, some rather dismissive. As a discloser, this blog is in no ways discrediting the amazing and difficult work that doctors and nurses do to diagnose and treat their patients. I just happen to be one that has been struggling to receive a diagnosis for quite some time.
I read through reports, check in patients, look at images, and receive calls every day about people struggling with every health issue imaginable, and I can't help but just being slightly envious of the majority of them who know what is going on in their bodies. They know why they're sick, they might have received a diagnosis, they are receiving treatment or are obtaining further examinations to begin treatment. Of course, some of the diseases, disorders, sicknesses, and ailments affecting these patients are terrible, and I don't envy or undermine that at all. I envy the peace of mind that they might not even know they have.
To sum up the last year or so, I have simply been declining in health. I guess it all started in the summer of 2015 when my shoulder started hurting intensely at random times. I had just moved to Colorado (weeks after my knee surgery) and would be starting school in the fall. I began going to physical therapy twice a week, but whenever I played percussion, lifted heavy objects, or even just slept on it wrong, it could be painful all day. This lasted my entire school year, and in early spring of 2016, I began experiencing extremely intense chest pain during percussion rehearsals. I went to the emergency room twice to learn that it was most likely a case of costochondritis, or inflammation of the tissue and cartilage in the ribcage. They gave me muscle relaxers and told me to ease up on the physical exertion and stress, which proved to be very difficult, and it only got worse as time went on.
Fast forward to May, and I was getting ready to drive up to Alaska with my boyfriend and best friend to work for the summer. Later that month, I got mono. That was a terrible time. I was out of work and bound to bed for close to two weeks. My whole body hurt, my throat was closed up and hurt to swallow, I was exhausted and weak, I had no appetite, I lost close to 10 pounds. After that incident, I got sick almost 15 more times that summer. The last 2 months consisted of once-weekly sick days where I could hardly get out of bed, my whole body felt weak, I could barely stand and had awful migraines, and I was unbearably nauseous. I started getting ulcers and sores in my mouth and my hair was falling out more than usual. I blamed stress from my then 50-60 hour work weeks, but upon coming home to Utah in September, I continued to get sick. Not as often, but still sick.
New symptoms have started to present themselves since then. In addition to my periodic weakness and constant fatigue, the chest pains have returned and my abdominal pains from my 4+ year struggle with dietary restrictions began to worsen. I began having heat flashes and fevers, the migraines got worse and more frequent, I gained 20 pounds out of nowhere, I am cold all the time (and I was terribly susceptible to the winter cold), I started having periods of faintness and lightheadedness, and the slight tremor I've had for years has begun to get worse at random times. Overall, I am just lost and confused with only slightest of ideas what could be wrong with me.
On that depressing note, know that I don't blame my doctors. I understand that they're only trying to prevent misdiagnoses or making my problems worse. It's just gotten to the point where I almost have to make separate visits for different aspects of my pains and symptoms. This visit I'm going to focus on my fatigue and migraines. This visit is for concern about my tremors and faintness and concern towards my aunt's recent diagnosis. And so it has continued.
I'm not sure the reason for my starting this blog. I think it might be mostly to get it all off my chest. Maybe it's my feeble attempt to reach out at last straws. Whatever the reason, there's my story thus far! I suppose I'll keep this updated with my health status every now and again.
I like working at a hospital. I applied for my job because I figured I would know what I was doing, since I've been in and out of hospitals since high school. I've probably gone through close to 10 primary care doctors since I was 14, some helpful, some rather dismissive. As a discloser, this blog is in no ways discrediting the amazing and difficult work that doctors and nurses do to diagnose and treat their patients. I just happen to be one that has been struggling to receive a diagnosis for quite some time.
I read through reports, check in patients, look at images, and receive calls every day about people struggling with every health issue imaginable, and I can't help but just being slightly envious of the majority of them who know what is going on in their bodies. They know why they're sick, they might have received a diagnosis, they are receiving treatment or are obtaining further examinations to begin treatment. Of course, some of the diseases, disorders, sicknesses, and ailments affecting these patients are terrible, and I don't envy or undermine that at all. I envy the peace of mind that they might not even know they have.
To sum up the last year or so, I have simply been declining in health. I guess it all started in the summer of 2015 when my shoulder started hurting intensely at random times. I had just moved to Colorado (weeks after my knee surgery) and would be starting school in the fall. I began going to physical therapy twice a week, but whenever I played percussion, lifted heavy objects, or even just slept on it wrong, it could be painful all day. This lasted my entire school year, and in early spring of 2016, I began experiencing extremely intense chest pain during percussion rehearsals. I went to the emergency room twice to learn that it was most likely a case of costochondritis, or inflammation of the tissue and cartilage in the ribcage. They gave me muscle relaxers and told me to ease up on the physical exertion and stress, which proved to be very difficult, and it only got worse as time went on.
Fast forward to May, and I was getting ready to drive up to Alaska with my boyfriend and best friend to work for the summer. Later that month, I got mono. That was a terrible time. I was out of work and bound to bed for close to two weeks. My whole body hurt, my throat was closed up and hurt to swallow, I was exhausted and weak, I had no appetite, I lost close to 10 pounds. After that incident, I got sick almost 15 more times that summer. The last 2 months consisted of once-weekly sick days where I could hardly get out of bed, my whole body felt weak, I could barely stand and had awful migraines, and I was unbearably nauseous. I started getting ulcers and sores in my mouth and my hair was falling out more than usual. I blamed stress from my then 50-60 hour work weeks, but upon coming home to Utah in September, I continued to get sick. Not as often, but still sick.
New symptoms have started to present themselves since then. In addition to my periodic weakness and constant fatigue, the chest pains have returned and my abdominal pains from my 4+ year struggle with dietary restrictions began to worsen. I began having heat flashes and fevers, the migraines got worse and more frequent, I gained 20 pounds out of nowhere, I am cold all the time (and I was terribly susceptible to the winter cold), I started having periods of faintness and lightheadedness, and the slight tremor I've had for years has begun to get worse at random times. Overall, I am just lost and confused with only slightest of ideas what could be wrong with me.
On that depressing note, know that I don't blame my doctors. I understand that they're only trying to prevent misdiagnoses or making my problems worse. It's just gotten to the point where I almost have to make separate visits for different aspects of my pains and symptoms. This visit I'm going to focus on my fatigue and migraines. This visit is for concern about my tremors and faintness and concern towards my aunt's recent diagnosis. And so it has continued.
I'm not sure the reason for my starting this blog. I think it might be mostly to get it all off my chest. Maybe it's my feeble attempt to reach out at last straws. Whatever the reason, there's my story thus far! I suppose I'll keep this updated with my health status every now and again.
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