Well then… Visit with Dr. Francomano

I’m currently flying back from my quick trip to Baltimore from Seattle, the entirity of the experience striking me as somewhat ironic. I was there visiting Dr. Clair Francomano, head of genetics at GBMC and one of the most renowned specialists in connective tissue disease. The ironic part is my level of exhaustion and symptom flare-up. And, then there’s some feeling’s I haven’t processed I’ll try and work out here as time goes on, so maybe other people like me have something to compare to.

I was diagnosed with Ehlers-Danlos Syndrome back in 2014.  That year things had come to a head medically and mentally due to the emotional exhaustion of pushing through pain and ongoing dysautonomia. I was grateful to know what was going on, and at the same time, being the way I am, I had an extremely hard time accepting a diagnosis made clinically. Yes, the criteria used are based on objective data. And, no, finding the genetic marker would not change management of the conditions. Still, it was a condition with no cure, little understanding in the medical community, and a heavy reliance on extreme adaptability to a body that doesn’t behave normally and hard work.

Many people I’ve met with EDS work hard to maintain. Sometimes that hard work doesn’t look like much to an outside observer. We have to be the educators with doctors not familiar with EDS and its complications. We do the research to learn how to protect joints as they one by one succumb to the effects of instability. It’s an emotional roller-coaster. It’s a juggling act of knowing when to fight for something and when to let it be. And, it’s the learning process in chronic illness of living while being aware of how to take care of yourself without becoming the illness. Without letting it make your world small. I feel like I have repeatedly had to bash out the walls that try to close in.

The entire thing is very difficult. And, it can feel very lonely. All of this amounts to many of us reaching out to support groups where we can safely talk without fear of judgment.

For me, in the very places I was getting support is where I started to really deny the illness. A surge in awareness in the last few years led to a surge in diagnosis. It seemed like EDS was everywhere, but really, it was just everywhere for people like myself because we are actively coping with it. When I would see people who seemed minimally effected, I would doubt my diagnosis thinking “Everyone is getting diagnosed with this thing who’s hypermobile.” Hypermobility is not great for the joints, but it is not necessarily to the degree an individual with connective tissue issues is effected systemically.

When I would see individuals with a chiari malformation or dysautonomia causing a heart rate of 200 bpm, I would say the same thing. “I’m fine. Everything I feel must be normal, and I’ve been misdiagnosed.” There’s a lot of awesome denial involved here.

So, I basically began to ignore the diagnosis, though my symptoms have somewhat gotten worse. I have to add though, that even though my symptoms have gotten worse, I do not feel worse. Your ability to cope does get better. Hopefully I will continue to feel better overall.

Then, at the end of last year I got the call that there was an opening to see this amazing doctor, and I prepared myself to be told that I did not have EDS, especially since they did a huge thing this year and completely revised the criteria based on new data. It is much ‘stricter.’ And, many people with EDS (and some who may be suffering from another malady they are desperate to find an answer for) were worried they would “lose their diagnosis.” I was not so worried about this because of my  relationship with the diagnosis itself. I understand it’s a tool to guide treatment. Though, I understand the fear very well from when I wanted so very much to know what was going on and had nowhere to turn. Doctors would tell me my dysautonomia caused by stretchy blood vessels was anxiety. They would say m pain was depression. I tried to believe them, because they are doctors, but nothing I did changed what I was experiencing. Though mental wellness definitely effects how you experience these difficulties in my opinion.

Is this a way more medical professionals can think about these things? Chronic pain often causes depression and anxiety. A heart that beats with insufficient blood flow fatigues. Blood pressure swinging causes a myriad of mental symptoms. Why is it judgment instead of treatment? Why is our culture so punishing of things not within our control? That’s how it seems to me.

However, many people who have experienced chronic illness themselves or dealt with the effects of it in their personal experiences understand more clearly. Are kinder in general.

Just thoughts I want to share if you’re struggling with judgment.

So, I was not so worried about “losing the diagnosis” as others put it, but my reasons are in part because I’ve been avoiding doctors in general. Were I to need help with something urgently and if EDS were the cause, I’d be less likely to get timely help I imagine without the right diagnosis. So, yea, that’s where a lot of people become fearful after dealing with something for so long that was rare and not easy to figure out in the first place. Would you want to start that process all over? You may know it’s logical to do so if the diagnosis doesn’t seem right. But, you probably would be upset. You know?

So, at the appointment, they had my records. It was 2 hours long and she did a battery of measurements in joints and neurological exams. I was mostly quiet and answered her questions and just let her do her thing. I heard some surprising observations… things about my face shape even. They remarked on a thing with my rib cage which is seen in Marfans, a more well-known connective tissue disease. Blue sclera, things with my hands that I didn’t know about like having the “wrist sign” and “thumb sign.” Mildly stretchy skin, excessive bruising, and a high narrow palate. An arm span greater than my height. In fact, by the end of it I was convinced I had Marfans even though I’m short! (Think Michael Phelps who is speculated to have Marfans).

Long story short, it’s Ehlers-Danlos Syndrome. Even my neurological symptoms are being caused by complications from the condition in her opinion. Going forward, I decided not to have imaging on my neck though she suspects it’s unstable and may be causing some of the neurological stuff. I wouldn’t get surgery unless it was much worse, and so I do not see the point. Maybe I’ll change my mind and want to know. Well see..

A lot of it is wait and see, and I’m okay with this. I wish I didn’t feel so tired. I wish I didn’t have to work so hard. But, it’s really okay because it’s the way it is, and we adapt as human beings. I have to be okay with all of it, and in many ways I’m lucky I’m as ‘okay’ as I am.

So, I wanted to write my reaction to all of it and what happened at the appointment. I went on some tangents, but I think they’re related to all this and how we deal with uncertainty in life and human nature. Overall, I’m grateful to have such an amazing doctor I got to see on such a confusing topic as genetics. She also happens to by an amazingly kind and brilliant woman.

Until next time!

*Unedited on a plane. Please excuse my typos! ☺️

The Umibozu Wish by Tara McPherson
The Umibozu Wish by Tara McPherson

Hypermobilty and Yoga: An Ongoing Journey

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I was very much my father’s child at fifteen years. My dad was a bit of a philosopher and instilled an innate curiosity. I remember roaming the aisles of Barnes and Noble for my next fix when I stumbled on Richard Hittleman’s Yoga, a 28 Day Exercise Plan. The book was jam-packed with black and white illustrations of a lithe and graceful seeming woman in odd poses. I decided I wanted to try it out, and went home that day to start my practice.

From the beginning, the poses were pretty easy for me because of my hypermobility and muscles that were still loose at this age. The breathing exercises were a welcome relief from anxiety I struggled with, and so it became something I did closed in my room several days a week burning some sandlewood incense. It was my own little sanctuary I mostly kept to myself, but my baton coach would comment on my increased grace only one summer after beginning. It was further reinforcement to this new thing that gave me respite.

The relaxation and relief I felt kept me coming back to the practice into my mid-twenties when I started to suddenly, it seemed at the time, have issues where I would lose balance or stretch past a now tightening muscle into the tendons and ligaments. I would sprain and sometimes things would pop and become inflamed. I became increasingly fatigued and struggled with chronic headaches and painful muscle spasms. Gradually, I stopped not knowing what was causing these issues.

Fast toward to today, and after almost eight years I have started yoga again in this last month. The decision was made after having been through the gamut with learning about what was going in with my joints. It was a combination of getting a more accurate diagnosis, so much physical therapy, and reading other people’s personal experiences with exercise. It’s a lot of trial and error too.

Why yin yoga?

The idea was that the slow, prolonged poses used in yin yoga would give me the opportunity to patiently monitor my body and pay extra attention to proper alignment. I didn’t want to be in a class and feel pressure to practice like I used too. I didn’t even want to give myself the temptation. So, I went with the passive stretching that uses the weight of your own body and gravity to stretch into the fascia. You do not push in yin… it’s more of a chill… I’m gonna fall asleep but feels so good, sorta thing.

A couple sessions in, I noticed that the ongoing tingling in my hands had let up a bit. Not to mention the relief from working on those chronically spazzed muscles. Within four or five classes I noticed I felt more comfortable in bed and was falling asleep more easily. Yoga is no panacea, but for me the benefits are enough so far to outweigh higher risk of injury.

The decision to do it regardless is a complicated one and made with the understanding that I’ll have to concurrently continue to maintain muscle as much as I can. I’ll have to have a knowledgeable teacher who knows which poses I need to modify, such as any that stretch the shoulders forward causing subluxation and pulling into the already weak ligaments there. Poses that focus on the SI and hips need to be modified as well for some people.

Any decision like this in chronic illness is ultimately going to be personal and individualized. Each of us is different in how EDS has effected our joints and muscles. Our necks can be especially troublesome, and dysautonomia can make it impossible at times to exercise the way we want. It’s a good idea to become familiar with how the body works to bypass areas of resistance, such as tight muscles and to understand the difference between hypermobility and flexibility the post I linked to last month describes.

I’ll give you a simple example of stretching through the muscle as I think of it. This is your knee “locking” if you’re not familiar…

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During head-to-knee forward bend, your knee is likely touching the floor. When I stretch like this, I feel pulling in my knees since the muscle is not aligned properly. The legs stay tight, and the stretch pulls at ligaments that certainly don’t need stretching. A solution is to prop the knees up with something. I’ve had trouble finding a good prop for this and tend to ball my fists beneath my knees.

There’s going to be a lot of opinions on whether a hypermobile person should stretch. I was told not to by my physical therapist with them saying how I already have good range of motion. And, I believe they hope the more I strengthen each muscle, the less my muscles will need to tighten to stabilize the joints. Because they’ll be stronger.

The issue is that I’m already significantly stronger than I’ve been in years with no noticeable improvement in muscle tightness. Most of us have a significant amount of adhesions, “scar tissue,” in the muscle as well. The tension is fatiguing in addition to the dysautonomia-caused fatigue. It’s something I can proactively try to address. So, I decided to go forward with yoga anyway despite the assertion that my range of motion is so good. I would disagree and say that my joint range-of-motion is so significantly greater that the stiff muscles are causing me to feel abnormally restricted. There might be a middle ground. Plus, hypermobility does not equate flexibility.

I want to emphasize that this decision is a personal one and not one to take lightly. It could be a mistake, but this is something I want to pursue. And, I’ll stress that I’m concurrently working and maintaining my core most days and would not pursue this without increasing stability first.

So, maybe I can gently work muscles without allowing them to completely relax causing the joints to slip around and further degrade. It’s something that I wouldn’t recommend doing without a yoga instructor well-informed on modifying for hypermobility, or better yet, a physical therapist that will do ongoing mobile therapy. Luckily, people are attracted to what they’re good at in general. And, there seems to be an increase in yoga articles addressing hypermobility and instructors dealing with it themselves.

So, what if you you have muscle weakness? In the first yin yoga class I did, we did a twisting motion on the ground. You lay on your back and tuck your knees. You let the knees fall to one side in the same direction while keeping the back on the floor and arms outstretched. You do this stretch passively in yin yoga meaning you hold it for a longer time and let gravity gently stretch you getting the benefit of taking stress off compressed nerves in my case from muscle spasm. (Massage would probably work too, but it’s so expensive and hurts your poor masseuse!)
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On the right twist, I was fine. On the left twist, about a minute in my legs started to fall substantially more. Within a few minutes I felt a strange wobble as I fought against my left hip seeming to ‘flop’ and cautiously started to hold my knees even though I felt no pain. Within the five minutes you lay there for, my knees had completely touched the ground, because I was too tired to hold them up from a weakened left glut I’ve developed from SI joint dysfunction. I flopped.

I didn’t feel the pain until I sat up. It was sharp and sudden, and it was difficult to lift my left leg. I had to grab ahold and place it back in front of me. My SI had slipped again is what I think happened. I laid down and did some self-adjustments and was okay, but it still had inflammation for a few days and had spasmed. During my first class, I had not told the instructor about my hypermobility. She ended up modifying this move to prevent this.

That weaker muscle made me think of the “stiffness dilemma,” because that weaker muscle is less stiff for me (It became smaller and inhibited from SI Joint Dysfunction).

When the muscle is smaller, there is more flexibility (but the same hypermobility) with a general floppiness. And that floppiness stresses already stressed ligaments when you stretch since there is no muscle to “catch the joint” from hyperextending for the ligaments. You are going to damage your joints.

And where you have muscle, (or sometimes with age it seems with hypermobility) you have spasm and adhesions. Your super-floppy days are over, and now you are just kinda floppy. However, you still have to pay attention and remember to actually engage the muscle during a stretch.  And, when you’re stiff but have more strength, when your knees are locked or elbows are backwards…

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I had a personal eureka moment where I finally understood what all that talk about “your muscles are doing the job of your ligaments” meant because of that weaker left side of my body. I understood the statement, but I didn’t understand how it applied. My inhibited muscle was much like the muscles I grew up with before they stiffened more. And, that flopping is how I am and remember being with that stiffness. It’s the same floppiness found in smaller joints still, like the ankles and fingers maybe because there is less muscle in these areas? I don’t know, but I’d add to that statement I’ve heard so many times that ligaments will try their best to do the job of your muscles in yoga, because it’s just easier like that. It’s such a balancing act.

Where we are less toned, we are vulnerable. And, even when we are toned, we have to be careful of our bodies not bypassing the too-stiff muscle to pull on a ligament further down to get us where we are urging it to go. And then, we have to have a smart and careful teacher who can watch for good body alignment and that you are engaging that muscle.

So, I’m going to keep at the yoga for now. I’m skipping poses that engage a weak muscle or where I don’t know the proper body alignment. And, I’m avoiding yin yoga poses where I do not feel the muscle stretching which maybe indicates I’m stretching ligaments. Also, my instructor and physical therapist seem to agree on holding back and always doing less than where we can ultimately go to in any position.

So, my final answer for myself to the question in last month’s post is to ‘kinda’ yogi.’ It seems really limited at first glance, but really I am empowered by knowing these limitations and will go further I hope.

When I was writing this post, I was looking around for others talking about yin yoga and hypermobility and happened upon a post I thought was well-written and helpful. She describes her experience here.

“Most people assume that a hypermobile person will present as extremely flexible – and we often do – but where hypermobility has been accompanied by inactivity and deconditioning, and widespread muscle spasm has gone unchallenged, the person may be very, very ‘tight’ – although they will still often have tell-tale hyperextending joints, sometimes with subluxations and / or dislocations. In this scenario, a modified yin practice could be very useful, probably with shorter than the usually recommended hold times (over-stretching will cause muscles to go into even tighter spasm, remember) and with very carefully targeted work. An experienced teacher can help the person to avoid flopping into familiar and already overstretched areas, and instead to access areas that may have gone offline, so that more functional, less painful movement patterns can be established.”

I think those are some helpful observations to explore in our own journey.

I remain perpetually hopeful. I do think that with eduction and intelligent thoughtful instructors there is a way to reap the benefits of yoga if your doctor thinks it is safe in your individual situation. And, stretching in general could be a powerful part of management in EDS when done properly.

EDS creates fragility, but we can adapt to it, and it is somewhat manageable. Lack of awareness puts an undue burden on patients, and when I think of how much I’ve learned in the last four years since being diagnosed, I know that I am more adaptable than I believed I could be. I know little, but I know enough to realize I can learn more.

Further reading…

Yoga International on JHS – Yoga’s Enigmatic Epidemic 

Reference Book, The Contraindication Index for Yoga Asanas. I’ve heard of this but did not download it and cannot attest to its helpfulness. However, it may be worth asking your instructor about.

Have more resources or suggestions to improve information in this post? Please add them in the comments section! 

 

Feelings on the New EDS Criteria and Being Mindful of a Diagnosis

Most of you know the criteria were revised for EDS this year for the first time in forever. It was important to tighten up the parameters under which a person is diagnosed with EDS given the confusion over differentiating people with more so-called benign general hypermobility from those that appear to fall under the syndrome of EDS. Only some of the genes that cause or contribute to heritable connective tissue disease have been found, and so usage of objective, scientifically arrived at criteria for diagnosis by a specialist is pretty darn important.

You can read the new criteria here.

The difference to me, between someone with hypermobile joints and someone with a more systemic connective tissue disease is big. I want to know that when I see a doctor, he or she understands my bendy joints could mean I also have stretchy blood vessels causing blood pooling in the heart and insufficient blood output. The heart beats fast and blood pressure fights to normalize. There is a higher likelihood of vascular incidents, and diet can also be challenging with reduced motility in the stomach and intestines.

This distinction, in my opinion, doesn’t discount hypermobility that can cause musculoskeletal problems, pain and fatigue. It can be disabling, and these people (myself included if I’ve been misdiagnosed) need support and a medical team that will assist them in having a better quality of life. This distinction between EDS and hypermobility is an important distinction to me as someone who has dealt with neurological, vascular and digestive issues as well. I am grateful to the people who are doing everything they can to improve our healthcare and quality of life. Especially for friends who are dealing with chiari malformation, thought to develop sometimes from instability in the neck.

So, in a couple weeks I’m going to see Dr. Francomano, the geneticist and specialist in Ehlers-Danlos Syndrome who speaks at our yearly conferences and who was a part of updating the criteria for EDS. She’s one of the practitioners who also contributes to finding the genetic markers for these heritable connective tissue diseases. I was on a two year waitlist to see her, and I really want her opinion after the implementation of the new criteria.

My goals in seeing her have been to be directed to the care I need most, to make sure nothing’s been overlooked that can improve my neurological symptoms, and to coordinate a kind of “low-maintenance” future care. I want to be able to live my life without really having to think about this big thing that effects me because I have a few good specialists to turn to if something is interfering with my living.

I want to do everything I can for this, whether it is EDS or turns out to be something else, but my focus will be on ways to help others, writing poetry and maybe trying acting classes again. I completely chickened out last year! I want to live well within these difficulties and maintain joy. I really would like one day to be working in mental healthcare in some capacity again, and I may start working on my masters this year.

There’s a lot that has happened, and there’s still a lot to figure out. And, I never would have had the strengths I’ve developed without this struggle, and in some ways I’m grateful for it and in awe of the resiliency of the human spirit. I cannot help but have hope.

Is it Flexibility or is it Hypermobility?

I’ll be back to talk about chronic muscle spasm and some surprising issues I’ve been dealing with because of it. In the meantime, I want to share this blog post in the link below which nicely addresses some misconceptions about hypermobility and being flexible.

Food for thought… when my muscles loosen, my pain increases same as if I were to lose muscle and depend solely on unstable joints. But, when my muscles stay perpetually in a contracted state, I fatigue easily and ache much like I have the flu or like when you pull an all-nighter studying for an exam. So, short of forking out money I do not have for professional massages, how do I get the muscles to release when taking deep breaths just isn’t going to cut it?

This realization and many, many months of physical therapy got me hopping back on the yoga wagon hoping to find some relief.

To yogi or not to yogi? That is the question in the next few months as I try to find a balance between stability and stretching without injuring myself if all goes well.

Blog post mentioned above: Flexibility refers to muscles and hypermobility to those pesky ligaments… read more.

I’ll update this post in the next week discussing symptoms that led me back to PT and what I’ve learned with my own trial and error coming to an agreement of sorts with my unstable body. It is a fine line we learn to navigate between crippling injury and living our best version of ourselves in this condition. And, though our stories are similar, each of our “best selves” looks different.

I’m hoping that the more I learn about what I can and cannot do, the less I will have to live in that grey area of uncertainty. The more I share, and others like me, the less we will flounder with a diagnosis with little treatment and proper support.

 

 

 

Thoughts from ‘The Pain Train’

“I need to get something straight for people. Pain is pain. We all experience it, admittedly, at varying lengths and degrees. My chronic pain isn’t worse.”

Source: Pain Train

I had some thoughts after reading Shiloh’s post I get into below. It’s unedited, so please forgive. I just wanted to write it and will get back to it later…

The post above is from an online friend of mine, Shiloh. It reminds me how the very people that must often fight to be heard must keep learning better ways to speak to others and can become particularly hard on themselves as their ideas and opinions and even facts are challenged.

It is interesting to me. I see myself in Shiloh’s thinking and recognize how I have in the past shut down my own needs because of my understanding that the person across from me could be inconvenienced by them. I tend towards a general wariness when talking to another person. I wait and actively listen. Part of this is an inherent curiosity and tendency towards thinking before I speak. The other side of it is realizing many have not cared to listen in return.

That has been my experience of things. And, I am okay with that. This experience brings me to Shiloh’s dilemma. She appears to be balanced on a double-edged sword. As a genuinely caring individual, how can she balance raising awareness of her own illness with those who are dismissive with the possible outcome that when she is heard, others who are sensitive and caring will not feel it’s valid to express their own pain?

We all seem to compare ourselves to other people. It’s like when we were children, and we didn’t want to eat our broccoli. When my dad would tell me to eat my ‘little trees’ and that didn’t work, my mom would remind me that “children in Africa are starving.” This one did work. It doesn’t work on all kids, but it sparked an uncomfortable childlike hypocrisy after which I’d gulp each little tree down guiltily.

For me, I started out sensitive in an insensitive world. And, then I had to get tough and tougher still towards the things around me that didn’t make sense. Things full of hypocrisy. The tipping point was getting sick. It was the moments where I was only surviving each moment and so many things seemed out of my control. I could control whether I would remain indifferent to hypocrisy through my words. I could control authenticity of self. Maybe that is why it became so important to speak about the truth of things as I see them while remaining open to alternate truths and adjusting my understanding of things.

As an example, I used to be angry at doctors in general. I believed that if I was being sincere, and they still chose to not believe me then they had failed in their profession. Partly this anger was resentment at having to fight so hard to be heard and pain at unfair treatment. Over time, I found my anger was not working. Being sincere and painfully honest wasn’t enough. I learned my sincerity would only be respected once it was proven I had fought long and hard. It seemed I had to prove I’d been raked over the coals and had come out quiet but firm but patient. This is my impression of things anyway in hindsight.

The day I gave up, truthfully gave up on doctors, was the day I saw something a change in my doctor/patient dialogue. I attribute this discovery to the unhappy truth of my moving so much. Doctors I’d previously found through hard work looking for the best were now out-of-town, and I was tired of going through the same experiences. It wasn’t all positive at first the day I gave up, but it was different from the dismissive ‘there’s nothing I can do for you’ eyes flicking sideways discomfort.

The first time was at a physiatrist appointment. The previous time I’d been to this department, I had come in during a severe episode of dysautonomia. The doctor, a woman, had never met me before, and she saw a young women whose pulse wouldn’t go below 100 sitting there and who’s blood pressure was high and who hadn’t slept the night before from the symptoms. (That’s the last time I drag myself to an appointment while that sick).

I appeared overly anxious and shaky. I was there to get some answers about what was going on in my shoulders having a severe tightness I was feeling on the left side of my chest and numbness down my left arm I thought could be from muscle spasms. I could visibly see spasms and feel the tight cords running under my left arm. I hardly remember the content of this appointment, but I do remember she decided it was more worth her time to verify I was hypermobile because I had a diagnosis of EDS. So I did. I’m unsure what the point was, except to assert her authority on the matter as a physiatrist.

This physiatrist did not have a good impression of me. That’s fine. However, now I had been referred back to this department and was scheduled with a different doctor. After that last appointment I had been simply done aside from working with my neurologist. I ignored the tightness and I learned to live with the spasms. This new doctor entered without saying hello and started by saying, “So I hear you have fibromyalgia” loudly.

I’ll let the facts above stand on their own. There is too much going on in those interactions to break down in this blog entry.

I didn’t get defensive. I didn’t feel little for once. Instead, I felt this empowerment. I knew, after everything I’d been through up to this point, that what was happening was a waste of my time. Instead, I decided to see if he was just confused and answered back just as loudly with my small voice, “I do not. I have Ehlers-Danlos Syndrome. Has someone undone my geneticist’s diagnosis?”

I wasn’t wrong about him and he proceeded to smile and talk loudly and quickly over me how he saw I have been there before. I wish I had taped this interaction, and maybe in the future I will. I was so done, I felt a quiet anger beneath the surface. I became so still that I imagine I appeared very calm. I kept asserting why I was there, because my doctor had sent me to be seen for my SI Joint. He replied there was nothing he could do for my SI Joint unless I ‘wanted surgery.’ I replied I did not want surgery (who the heck wants surgery??) and that I was hoping he could direct me towards some help since this was the University of Washington and I assumed they have great physical therapists. He then proceeded to examine me after which he finally lowered his voice, said that I have SI Joint Dysfunction after looking at my collapsed arches and one leg that was shorter than the other when I laid on the table, and done a few other tests.

After all this antagonism I was handed a script for physical therapy and a nurse came in after saying the doctor had also written me a script for massage therapy. I felt like it was some sort of guilty parting gift.

After this appointment, where this doctor acted so shamefully, I stood in the elevator with my husband and calmly stated I would never seek medical care again unless I was literally in an emergency. I meant it too.

Some months later I still needed a doctor unfortunately to prescribe my medications since our last move. My husband ended up looking for me, because I found the entire ordeal overwhelming. He found one of the top rated doctors in Seattle, and we set up an appointment. I imagine that the success of this was a combination of this doctor being quite brilliant and my own giving up.

The first time I saw him, he sat calmly and listened as I despondently told him why I was there. He then asked questions. Lots of them. I answered, because he was respectful and seemed kind. By the end of this appointment, an hour later, this amazing doctor looked at me and tried to explain how my situation must have been particularly difficult. He said, “Not many people have to deal with all you have to cope with on a daily basis.” Something to that effect. Whatever it was, it told me if anything, this doctor was empathetic.

For once, when I had stopped caring, when I just answered the questions asked and when the doctor cared enough to know, is when I had that moment where I felt not just heard but protected by my doctor. It was obvious he’d reviewed my medical record. Another first, sadly. It was obvious he understood what I was dealing with. And, he also acknowledged that he down-the-line would check my inflammation markers periodically to make sure this was not also an autoimmune connective tissue disease.

Having this interaction taught me that there were better ways to handle my dialogue with a physician. There are times I should have been more outspoken and there were times I should have been more patient and not voiced my worries. It shouldn’t be that way, but doctors are just human beings. We do have to work with them for things to ‘work.’

But, as human beings they are fallible, and they are not always our best option. I never went back to that physiatrist. I do not want to make it my personal mission to teach him how wrong he was. If I find the energy, I may write him a letter, but it’s a tricky situation when that letter will become a part of your medical record.

Shiloh’s post sparked these thoughts, and it brings me back to what I was saying, how I have “in the past shut down my own needs because of my understanding that the person across from me could be inconvenienced by them tending towards a general wariness when talking to another person. Actively listening. This curiosity in me has not served me well with finding answers to my physical problems when I was younger.

It allowed the doctor’s personality, biases, and initial thoughts to run the show with no firm self-advocacy on my own end when I was in an uncomfortable situation. I would think I was advocating for myself by standing firm, but instead it was perceived as unreasonable. It didn’t work.

It did work in that that firm resolution is what kept me resilient enough to withstand multiple setbacks and years not knowing why I was so exhausted or having such severe muscle spasms. Instead being told it must be anxiety and stress. So, maybe it wasn’t inherently wrong but now that I have a diagnosis, I face an entire new set of challenges created by the nature of the diagnosis itself. The very fact that people are raising awareness has been both wonderful and horrible. A post for another time. The negative impact of awareness.

It has required me to learn that the person listening to me, the doctor, has a reason for feeling unsure. No, it isn’t fair and yes, in my case they are incorrect. No, a doctor should never intentionally overwhelm a patient with loud and quick assertions to shut them down like that physiatrist did on a power trip. I won’t stand for it.

I will keep striving to remember though in new encounters with doctors, the amazing experiences I have had and try to let go of the negligence of others for my own sake. It is difficult, but it is for the best.

Which brings me back to pain and Shiloh’s post on the effect of awareness on her family and friend’s not feeling it is fair to express their own pain. We share something in common with doctors. The doctor is wary and has to overcompensate for the number of individuals self-diagnosing themselves with rare illnesses. As a result, they can be especially reactive and behave poorly when someone comes in who has been diagnosed. Like humans do, they react to this wariness on a spectrum of acceptable behaviors.

In the chronic illness community, we are wary of others believing us, because we have been tried time and again by both strangers and those we love. Will they dismiss us? We do not want to feel alone. We do not want to feel doubted, when many of us tend to do all the doubting for ourselves. We fight to accept the illness, and then others fight back to bring us back to doubt. That is why support is so important in this community. We have to remind each other that these feelings are normal.

So, what do we do? Shiloh already is doing it, and I was so proud to see her post. She is not afraid to be self-critical, to point out hypocrisy, to care when family is uncomfortable by her situation. This critical eye is vital to both the patient and the doctor. And, those who we love, we just need to remember these potential effects of disclosing our own difficulties. Try to reach out to them. To remind them that their pain is valid, just as troubling, and that we will support them, because more than many we know what it means to be empathetic and careful.

Dysautonomia in Autumn

My last post was in August of last year. By the end of September, my dysautonomia took a turn for the worst.

I do not know if it was the season or if it was the natural course of living with a condition like this. I do not know if the house we were renting that had a mold infestation we didn’t know about that made me more ill or if that is a coincidence.

I found many days I was fighting to simply “be okay.” I would have good days, and then I would have horrendous days where I tried to stand, and I quickly fell to the ground. I had to crawl to get what I needed. The indignity of it all, when I retell this, does occur to me. But, at the time, I simply did what I had to do… like I do. Like we do.

My blood pressure would plummet, and sometimes my heart rate would not increase to try to correct it. I would have difficulty speaking and on two occasions ended up in the ER middle of the night, because my husband and I thought I was having a stroke. I would wake up with parts of my body numb from lack of blood flow, difficulty figuring out where I was and the most troubling inability to express myself. I was speaking through a fog, and I couldn’t be sure the words being said made sense through the obscure sense of disorientation.

Most-oft, because of the lack of awareness about this disease, doctors concluded I was dehydrated. It didn’t matter that I had drank nothing but water with electrolytes during the day. And, I wasn’t correcting the doctors I would encounter, because I was tired. I was tired of having to educate the people I had been taught would protect me and would know better.

My dysautonomia symptoms are also not clear-cut. I am diagnosed with Postural Tacchycardia Syndrome where the heart goes above 120 beats per minute when standing. In addition though, sometimes my blood pressure is spiking now when I stand up, and my gut has been shutting down lately leading to all sorts of bloating and symptoms of severe acid reflux eating even small amounts of food. I am freezing at times, or my temperature will suddenly be higher than normal with a slight fever. Other times I feel hot, and my temperature is low. My thyroid is tested repeatedly as a result, but it is always functioning well.

My neurologist explained that many of these diseases of dysautonomia can occur on a spectrum. They can also present differently at different times depending on the cause.

In my case, the cause is believed to be Ehlers-Danlos Syndrome. Testing using the valsalva maneuver indicated blood pooling in the artery retuning to my heart which points to blood vessels that don’t constrict the way they should. This is a breathing test using forceful exhaling to see how blood pressure and heart rate responds. My doctor explained my response was ‘severe,’ showing a large plummet in pulse pressure leading to blacking out. His graph showed how my blood pressure continuously tried to return to normal, but instead it looked like the path of a zipper to me, with dips and small increases as it struggled and failed. That pattern, he explains is often seen in patients with hypermobility of the joints. And so it follows, the running theory is it must be a result of fragile arteries and blood vessels.

I am assuming most people on this blog are familiar with POTS, but you can learn more at Dysautonomia International in case you are new to this discussion. It is Dysautonomia Awareness Month after all!

So, last year, I became very incapacitated by things sometime around the end of September. I’ve heard this is actually a common phenomenon in dysautonomia patients. And, this year, after a summer of my blood pressure and heart rate being manageable, and my digestion actually working as much as I am used to, I began to think last autumn and winter were an anomaly.

Well, either my recent adventures into working part-time at a coffee shop have spurred another flare-up, or October truly is a difficult month. It is perplexing and bizarre. What is different about autumn for us? Is this specific to certain regions?

Again, I find myself struggling with sudden blood pressure drops and heart rate spikes and now… blood pressure spikes as well. My gut has been slowing down, and I am incredibly nauseated at times.

Despite it all, I feel like I am able to handle it a lot better. I hate taking salt tablets, but I have begun to take them at work to lower my heart rate quickly before it gets out of control. But, it’s not working as well as I thought it would. I am not eating so great, but I am continuing to exercise every. good. day. I have. I am finding it is necessary to keep me stronger during the bad times.

Which brings me to a an understanding I have based only on my personal experiences that conditioning does matter. If your illness has not progressed to the point where you are not able to exercise or stay active, talk to your doctor about gentle exercises. In fact, there is protocol for POTS patients that talks about Postural Training- standing in one spot for x amount of minutes per day.

I found a Pilates routine on Amazon Prime I do several times per week almost completely horizontal on the ground. Swimming is also wonderful, and it is recommended by my doctor. It is difficult for me to stay on top of it when so exhausted, but I find that it is more difficult to manage the dysautonomia with less conditioning. And, I do see a difference between last year and this spring when I started my exercise routine while still very symptomatic . Maybe it will take me longer than other people to get stronger, but I will.

It took me years to figure out how to get to this point where I schedule being active and have established a schedule at my new job with accommodations and limited hours. It’s challenging, but I won’t know until I give it a good go what I am capable of. I have big dreams, and I dream of going back to school for my PhD or traveling and exploring the world. Of having the energy and mental focus to try and publish my poems. Any of these things, maybe all of them.

I do believe we all have this strength within us to make it through the worst of times. We’ve done it before, and we will do it again. Hopefully, with more tools at our disposal and support from our inner circle of people each time we go around the dizzying wheel of dysautonomia.

 

New Awareness Materials Available

Last month www.chronicpainpartners.com posted printable, trifold brochures along with wallet cards… yes!

Printable trifold from http://www.chronicpainpartners.com

 

I love this, because explaining a lesser understood disease can feel overwhelming. I know that sometimes it gets hard to not get bogged down in the details of ‘explaining’ when we find ourselves needing to. Because, really, when those around us do not know how to communicate with us something that is difficult to understand, then how would we communicate it well ourselves?

There is almost too much information out there, especially on the internet. 😉 It places too much expectation on the person dealing with the problem. So, I love when wonderful resources like this one take the time to provide us with tools to simplify our lives. Go ahead and check out the brochure, share with loved ones and doctors, and if you haven’t already, explore the wealth of information and especially webiners on Chronic Pain Partners when you feel up to it. Until next time…