Full circle
It's been quite the couple months, so please bear with me. This post may not be as eloquent or concise as my typical posts, but I have had a lot going on and there is a lot on my mind. I have not had the chance to post in almost a month between work, medial appointments, the beginning of the onslaught of the many Fall Jewish holidays, and never-ending fatigue.
Amidst what amounted to 14 medical appointments (plus another 6 PT appointments) over the course of 6 weeks during which I continued working full time, I turned 26 years old and got booted off my parents' healthcare plan. For the first time in my admittedly privileged life, I am about to discover the true cost of living with a chronic condition. I work for a very small clinic, and while my boss allots a certain stipend toward healthcare I do not have a group plan to join, and will enroll in a Covered California plan.
It certainly doesn't help that this unavoidable event came at a time when I am going in and out of flare-ups every few weeks and I often feel what seems to be dysautonomic symptoms, though I have not been diagnosed. Needless to say, aerial has been on hold. I've mustered up the energy to go just 3 times in the last couple months. One time I got so dizzy I could not stand up afterwards, and another time my joints were not having it.
So I went to see a new dermatologist for a routine visit for my first time since moving to LA. I mentioned my frequent hives and itchiness and dermatographia, so he referred me to an allergist. Meanwhile, I mentioned my often painfully swollen lymph nodes to my new PCP along with my chronic fatigue, wooziness, lightheadness, poor temperature regulation, often feeling feverish without having a fever, and feeling short of breath. She had a bunch of bloodwork done, but, as always, my bloodwork all came back normal despite my feeling awful. She had me see an ENT for the lymph nodes and a cardiologist for the other symptoms. So I followed up. In addition to the awful experience in which the ENT offhandedly commented to me, "Well, there's always the option of an egg donor" when I in no way sought reproductive advice from him regarding my genetic condition, he told me the swollen glands were just allergies, and I was planning on seeing the allergist that same day anyway. He also said that my headaches are from clenching my jaw and grinding my teeth, a problematic habit that my dentist had previously pointed out, but my dentist and I decided that now was not the time to get a night guard. Meanwhile, I catch myself clenching and grinding just as much during the day, so I figure I'll try to be more mindful of that before trying a method that will likely interrupt my already challenged sleep.
The allergist was incredible. She fully listened, was curious about my EDS diagnosis but not skeptical, and took all of my concerns into account. When I mentioned I was concerned that I may be presenting with some elements of Mast Cell Activation Disorder (MCAD), she agreed it was possible and tested my tryptase levels, the accepted preliminary diagnostic test. The tryptase test came back perfectly normal, indicating I do not have MCAD, and through allergy testing I discovered I have a pretty strong dust mite allergy. So I began a daily regimen of Claritin in the morning, Allegra in the evening, and a Zantac up to twice a day when I felt I needed more allergy medicine (I already always have Zantac on hand for my nausea as recommended by a past GI). I actually haven't had many hives since starting the regimen, but I continue to often be itchy, and I often still feel the swollen lymph nodes (both of these symptoms are here with a vengeance at the moment.)
Next came the cardiologist. He took a resting EKG and performed a basic orthostatic blood pressure screen, both normal. He did find an abnormally strong pulse in my abdomen, and had me come back for an abdominal ultrasound, which was also normal. During my initial visit, my new cardiologist looked at me, and listened to me, and said to me, "Are you sure you have EDS? You're so functional, and your skin isn't stretchy. I'm just not sure you have it." Never mind that I did not list to him all the other symptoms, as I did not go into the appointment with a goal of "defending" my diagnosis. After my cardiologist had an apparently long talk with my rheumatologist, who has been so helpful and was the one who finally diagnosed me, he called me back to tell me that they decided together that they're really not sure if I have EDS, and I need to go see a geneticist. I followed up with my rheumatologist and she confirmed the conversation, telling me that on the one hand we cannot be sure I do not have a more severe type of EDS than hypermobile-EDS, and on the other hand, we are not really sure I have EDS and I may "just" have joint hypermobility syndrome,* so she strongly recommends I go for the testing.
So I am frustrated. I feel like I wasted a year of energy and now I'm back at square one, having only progressed to an NSAID prescription and a new ability to muscularly shift my SI joint back in place when it starts slipping out. It seems that I meet all the diagnostic criteria for hypermobile EDS, and it is unlikely that a genetic test will show anything because a specific genetic marker has not yet been identified for the vast majority of individuals with EDS. And yet, I will need to take yet more time out of my work schedule, and potentially pay out of pocket for an expensive specialist and for expensive genetic testing to confirm what I thought we already knew. Meanwhile, I feel that I have gotten very few answers to help me manage my symptoms outside of the joint pain. While I am so thankful that I am not dealing with anything severe enough to show up on basic immunology, cardiology, and endocrinology screening tests, it can be very frustrating to spend all of the time, effort, and emotional capacity running around between doctors with no answers and therefore no implementable plans. I am thankful every day that my body can do all that it can, and that I am able to continue living a very functional life; however, I am in constant discomfort and pain, and I am sometimes not sure how long I can sustain this high level of function while feeling the way I do.
But there has been one step in the right direction through all of this. Back in June, I went to see an ophthalmologist to screen my eyes for EDS complications, and an optometrist to test my vision. My eyes are structurally sound, and I was given a slightly updated glasses prescription. After I picked up the glasses and tried them out, I found I was seeing better without them than with them. As instructed, I tried them for 2 weeks before making an appointment to recheck the prescription. At this point, I brought up vision therapy since I have long felt my difficulty is more in focusing my eyes than in visual acuity. The optometrist agreed and referred me to a vision therapy specialist. I went to see the vision therapy specialist during these past crazy weeks, and she found that my eyes are quite uncoordinated and I have poor depth perception and sometimes even a sense of motion sickness as a result of my eyes trying to focus. She believes that it is at least in part due to my two past concussions, and some of my further research indicates it may also be an EDS manifestation. Most likely, it is a combination whereby my concussions on top of the EDS-related visual problems brought it to a point of impacting my function. Though we have no way to go back and determine the exact source of the problems, we do know that they are present and can be addressed through specialized corrective lenses and vision therapy. So I will be beginning yet another therapy just as I wind down PT. But it is a plan. It is a step forward. It may not cover all of my symptoms, but it can certainly be one contributing factor to my fatigue and even some wooziness. And seeing how slow progress can be, even after thinking I finally was given a workable diagnosis, I am happy to be taking any step toward feeling better and living a less limited life.
*Terminology clarification: As of March 2017, the Ehlers Danlos Syndromes have been reclassified, in addition to what is being termed Hypermobility Spectrum Disorders. It is clear that if I do not, in fact, have hEDS, then I am on the next most severe "category" on the spectrum, where I have all of the symptoms but do not perfectly meet the criteria. However, based on reading through the criteria for hEDS, it does seem that I have it.
Amidst what amounted to 14 medical appointments (plus another 6 PT appointments) over the course of 6 weeks during which I continued working full time, I turned 26 years old and got booted off my parents' healthcare plan. For the first time in my admittedly privileged life, I am about to discover the true cost of living with a chronic condition. I work for a very small clinic, and while my boss allots a certain stipend toward healthcare I do not have a group plan to join, and will enroll in a Covered California plan.
It certainly doesn't help that this unavoidable event came at a time when I am going in and out of flare-ups every few weeks and I often feel what seems to be dysautonomic symptoms, though I have not been diagnosed. Needless to say, aerial has been on hold. I've mustered up the energy to go just 3 times in the last couple months. One time I got so dizzy I could not stand up afterwards, and another time my joints were not having it.
So I went to see a new dermatologist for a routine visit for my first time since moving to LA. I mentioned my frequent hives and itchiness and dermatographia, so he referred me to an allergist. Meanwhile, I mentioned my often painfully swollen lymph nodes to my new PCP along with my chronic fatigue, wooziness, lightheadness, poor temperature regulation, often feeling feverish without having a fever, and feeling short of breath. She had a bunch of bloodwork done, but, as always, my bloodwork all came back normal despite my feeling awful. She had me see an ENT for the lymph nodes and a cardiologist for the other symptoms. So I followed up. In addition to the awful experience in which the ENT offhandedly commented to me, "Well, there's always the option of an egg donor" when I in no way sought reproductive advice from him regarding my genetic condition, he told me the swollen glands were just allergies, and I was planning on seeing the allergist that same day anyway. He also said that my headaches are from clenching my jaw and grinding my teeth, a problematic habit that my dentist had previously pointed out, but my dentist and I decided that now was not the time to get a night guard. Meanwhile, I catch myself clenching and grinding just as much during the day, so I figure I'll try to be more mindful of that before trying a method that will likely interrupt my already challenged sleep.
The allergist was incredible. She fully listened, was curious about my EDS diagnosis but not skeptical, and took all of my concerns into account. When I mentioned I was concerned that I may be presenting with some elements of Mast Cell Activation Disorder (MCAD), she agreed it was possible and tested my tryptase levels, the accepted preliminary diagnostic test. The tryptase test came back perfectly normal, indicating I do not have MCAD, and through allergy testing I discovered I have a pretty strong dust mite allergy. So I began a daily regimen of Claritin in the morning, Allegra in the evening, and a Zantac up to twice a day when I felt I needed more allergy medicine (I already always have Zantac on hand for my nausea as recommended by a past GI). I actually haven't had many hives since starting the regimen, but I continue to often be itchy, and I often still feel the swollen lymph nodes (both of these symptoms are here with a vengeance at the moment.)
Next came the cardiologist. He took a resting EKG and performed a basic orthostatic blood pressure screen, both normal. He did find an abnormally strong pulse in my abdomen, and had me come back for an abdominal ultrasound, which was also normal. During my initial visit, my new cardiologist looked at me, and listened to me, and said to me, "Are you sure you have EDS? You're so functional, and your skin isn't stretchy. I'm just not sure you have it." Never mind that I did not list to him all the other symptoms, as I did not go into the appointment with a goal of "defending" my diagnosis. After my cardiologist had an apparently long talk with my rheumatologist, who has been so helpful and was the one who finally diagnosed me, he called me back to tell me that they decided together that they're really not sure if I have EDS, and I need to go see a geneticist. I followed up with my rheumatologist and she confirmed the conversation, telling me that on the one hand we cannot be sure I do not have a more severe type of EDS than hypermobile-EDS, and on the other hand, we are not really sure I have EDS and I may "just" have joint hypermobility syndrome,* so she strongly recommends I go for the testing.
So I am frustrated. I feel like I wasted a year of energy and now I'm back at square one, having only progressed to an NSAID prescription and a new ability to muscularly shift my SI joint back in place when it starts slipping out. It seems that I meet all the diagnostic criteria for hypermobile EDS, and it is unlikely that a genetic test will show anything because a specific genetic marker has not yet been identified for the vast majority of individuals with EDS. And yet, I will need to take yet more time out of my work schedule, and potentially pay out of pocket for an expensive specialist and for expensive genetic testing to confirm what I thought we already knew. Meanwhile, I feel that I have gotten very few answers to help me manage my symptoms outside of the joint pain. While I am so thankful that I am not dealing with anything severe enough to show up on basic immunology, cardiology, and endocrinology screening tests, it can be very frustrating to spend all of the time, effort, and emotional capacity running around between doctors with no answers and therefore no implementable plans. I am thankful every day that my body can do all that it can, and that I am able to continue living a very functional life; however, I am in constant discomfort and pain, and I am sometimes not sure how long I can sustain this high level of function while feeling the way I do.
But there has been one step in the right direction through all of this. Back in June, I went to see an ophthalmologist to screen my eyes for EDS complications, and an optometrist to test my vision. My eyes are structurally sound, and I was given a slightly updated glasses prescription. After I picked up the glasses and tried them out, I found I was seeing better without them than with them. As instructed, I tried them for 2 weeks before making an appointment to recheck the prescription. At this point, I brought up vision therapy since I have long felt my difficulty is more in focusing my eyes than in visual acuity. The optometrist agreed and referred me to a vision therapy specialist. I went to see the vision therapy specialist during these past crazy weeks, and she found that my eyes are quite uncoordinated and I have poor depth perception and sometimes even a sense of motion sickness as a result of my eyes trying to focus. She believes that it is at least in part due to my two past concussions, and some of my further research indicates it may also be an EDS manifestation. Most likely, it is a combination whereby my concussions on top of the EDS-related visual problems brought it to a point of impacting my function. Though we have no way to go back and determine the exact source of the problems, we do know that they are present and can be addressed through specialized corrective lenses and vision therapy. So I will be beginning yet another therapy just as I wind down PT. But it is a plan. It is a step forward. It may not cover all of my symptoms, but it can certainly be one contributing factor to my fatigue and even some wooziness. And seeing how slow progress can be, even after thinking I finally was given a workable diagnosis, I am happy to be taking any step toward feeling better and living a less limited life.
*Terminology clarification: As of March 2017, the Ehlers Danlos Syndromes have been reclassified, in addition to what is being termed Hypermobility Spectrum Disorders. It is clear that if I do not, in fact, have hEDS, then I am on the next most severe "category" on the spectrum, where I have all of the symptoms but do not perfectly meet the criteria. However, based on reading through the criteria for hEDS, it does seem that I have it.
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