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 posted printable, trifold brochures along with wallet cards… yes!

Printable trifold from


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…

Numbness & Compression Neuropathy

So, I want to tell you about the onset of a new problem I was dealing with this year. It was eventually diagnosed as compression neuropathy (in my hips). Basically, my ligaments in their looseness cause some sort of problem in my hips and impinge nerves from the base of the spine. I now lose feeling in my upper legs and up into the bum when I walk ‘long distances’ and then sit in a normal upright position.

The only relief I’ve found to prevent it from happening is to sit minimally and to spend more time slightly reclined or standing or laying down. Not cool. Whenever I think, “no, I’m sure it’s fine and I’m going to vacuum and then cook and then walk the dog…” it comes back, and despite knowing what it is, I’ll admit, it disturbs me.

My neurologist at UW explained the compression, diagnosed a little vaguely as compression neuropathy, is caused by the hypermobility in my hips and repeated stretching of the ligaments followed possibly by responding muscle spasms. She did research on case studies with EDS patients with these symptoms prior to even seeing me, and she was able to narrow down the diagnosis. What?! It’s what we all hope for in a doctor, that they’ll do their ‘due diligence.’  I almost cried when she came in and knew what Ehlers-Danlos was and familiarized herself with the secondary complications we can develop.

Anyway, I don’t notice a lot of this going on in my hips, because it’s normal for me and muscle spasms elsewhere feel more troublesome day-to-day. Plus, as I’m sure you’ll understand I start to tune-out sensations that interfere with ‘living life.’ You learn to survive this, and more than surviving, you eventually learn to live more often than  survive. Or, always strive for it… every situation is different.

This troublesome, embarrassing, and potentially serious problem started in May of this year. I ignored it! (Don’t do that… 😊). In June, very ironically after a visit to the first doctor I could find after we needed to move to Washington for my husband’s job, I ended up in the ER. :sigh: My doctor was a whopping 2 hour situation to get to that morning. I drove to Bremerton from our rental in Gig Harbor, rode on a ferry for 45 minutes, sat upright in a chair for an hour waiting for said appointment at a coffee shop, then walked a mile to the doctor’s office to then repeat this going back home. Sometimes my stubborn nature startles me looking back.

On the ferry, of all places is when my legs up the inner thighs all the way into my lower back, and in-between, went completely numb. No feeling at all.

I called my doctor who told me to go straight to the ER. My husband was riding back on the ferry with me from his work in Seattle watching as I laid there unable to 1. panic, because there was nowhere to go or 2. talk, because I was shocked thinking it was the onset of something called cauda equina, an emergency that requires spinal surgery.

After many hours at the ER and imaging and a slightly freaked out looking doctor (that’s never a good sign), I was told they didn’t see evidence of cauda equina at this time. I was immensely relieved and simultaneously reserved and sad not knowing what was causing this to happen.  That was that.

A sad fact, I started experiencing this problem over a year and a half ago off and on. I’d previously been admitted to an ER in Oregon with the same symptoms. This is how I knew about the possibility of cauda equina. But, then, I had been summarily dismissed after the physician couldn’t see the problem on imaging, as if that doctor’s job was confined to diagnosis by MRI lacking any clinical insight.

I’m happy I have such an intelligent and discerning doctor now. I know it will still be difficult because of the lack of awareness about EDS. I’ve continued to experience weakness in my legs and numbness, but I was told to expect it.

So, the point of my story is to illustrate you’re not alone in dealing with ‘mysterious symptoms,’ that eventually (hopefully) are figured out or perhaps work their way out through our own diligence and trial and error. Some things I deal with remain a mystery, and I’m okay with that right now, because I will keep pushing for a good team on my side when I can in-between living.

We fight too hard for good care. But, it’s important to keep fighting for good care.




On Changing with the Course of Life

“Imagine that you are brought to a time when illness has caused the energy in your body no longer to be sufficient for you to participate in the world in the ways you have become used to. The ways that have nurtured your self-image. The ways you have cultivated to reaffirm this imagined self that you keep building and rebuilding like an armour about you. What happens when you can no longer keep up the kind of employment that brought money into your home and created your self-image as a good provider? What happens when you are no longer able to keep up your image of yourself as a valuable member of society? When you can no longer maintain your identity as a teacher or plumber or poet or parent? What happens when you can no longer be someone with “responsibilities” to the family or community? … And you ask yourself, “Who was that … person?” Can you sense how your resistance, your desire for things to be other than they are, would be like a vice closing in on you? … The resistance is so painful, the pushing away of the present so isolating and fearful, that a feeling of helplessness arises. The more we resist, the more we contract, and the less space we have in which to live our life. … The confusion and suffering arise from our attachments to how it used to be and how we thought it always would be.”

Another voice – ‘The Injustice of Living with a Chronic Invisible Illness’ Reblog

I so want to create a page listing helpful blogs, websites, and articles. Since I haven’t yet, I have to reblog this post by an amazing young lady with Ehlers-Danlos Syndrome. Give this blog a good look; there is genuineness and wisdom. I have a shot below of the post for you to take a glance at, but click here to read the full article. Peace.

“Being told ‘you look well and you would never know you are sick’ has always felt like a back handed compliment to me. I know people mean well however it makes me feel like because my illness is rare and misunderstood, it’s also maybe slightly irrelevant to others. Those commenting on your looks don’t see that everyday is usually a bad day, low mood, the effort it takes to complete the smallest tasks and the amount of medication you possibly take during your day to day life. They just see the present you, who is usually vacant from all the pain you are trying to comprehend and cope with. Pain that can often force you to live a life with limitations, yet there is no obvious sign of this to others…”

Screenshot of Blog Excerpt
Blog of a Chronically Ill Adolescent… Click to read more.

No Entry Today, Just Some Therapy

I’ve been a little more effected by symptoms since around the time I had stopped writing as much. It’s both increased difficulty with my autonomic system working (diagnosed with postural orthostatic tachycardia syndrome some years ago) and my hip area seizing up causing pain. I cannot tell if it’s dislocating or if the muscles on my left side just are being grumps.

Regardless, hence my hiatus. My doctors through an HMO would not address these problems, and I lost insurance in December also. Now, it’s a long story, and it’s pretty unfair… but, I don’t think it’s helpful to write about until I have more distance and things start to look up more.

So, I am posting this video as therapy. I’m too emotionally exhausted right now, but I can share this cuteness. Take some time for yourself to step back when you need to; the battles AND the joys still go on.