Day 3

My friend Jenna is documenting her journey after developing aplastic anemia following pregnancy. She is a fellow Ehlers-Danlos patient and friend from Portland. I’m sure she would benefit from the support of this community. Thanks guys.

Strength In the Moment

I will start with the good news. Today I did not have rigors because they took better precautionary measures to try to prevent it. I was shaky and lightheaded today but overall did much better on that front. Unfortunately, whenever I stand up to do anything, I get faint and shaky. The worst of this happened while my family was here. I was organizing my things when I had to sit down and I had what felt like rigors but they think it must have been something else because it happened so far away from my ATG treatment.

In the bad news category, my pain is still through the roof. I’m pretty solidly anywhere between an 8 and a 10. I think this is due in part to the rigors yesterday and also because I’ve been so weak today that I haven’t done much walking and the bed, while nice…

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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. 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 showed blood pooling in the artery retuning to my heart which points to blood vessels that don’t constrict the way they should. 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, 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. 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 Hulu 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 . I’m not Hulking out or anything! Just simple exercises. 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 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, and Storytime

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 minimally, sit ‘normally,’ 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. You’ll understand the tears of hope?… joy?…if you’ve been diagnosed. :smiles:

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. 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.

On the ferry, of all places!, that’s 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 and can happen in EDS.

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, and I’m immensely grateful.  That’s that, and you know the rest.

So, the point of my story is to illustrate you’re not alone in dealing with ‘mysterious symptoms,’ that eventually, hopefully, are figured out. 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 also  important to keep fighting for good care. I got unbelievably lucky being pushed into an appointment with the top neurology clinic in the country. Lucky isn’t my normal, but look, it does happen! 😉

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. Well.

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. The difference is I now have a plan and have been told when this could be a more serious problem, and how it will be handled.

Knowing you are cared for and looked over makes all the difference in the world. Right?



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 so much gnu 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.

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.