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. ūüėČ 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… ūüėä). 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! ūüėČ

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.

Lara Bloom’s Documentary is Here!

I was so inspired by this documentary. I know I haven’t been writing, but the ideas are there. Too many hard days lately. I hope to see Dr. Franconamo this year… I just need to fill out the paperwork. ūüėČ …then there is a long wait during which I’ll update on what has been going on.


“Published on Jan 19, 2015…

Issues with my Tissues follows the epic emotional journey of Lara Bloom, an Ehlers-Danlos Syndrome sufferer, as she attempts to complete the London Marathon.”

Lost in the System and Fighting Back

I’m very tired lately, and I’m trying to figure out an increasingly¬†painful (out-of-control)¬†problem with my hips and lower back. They’ve become so bad that my left leg gave out, just stopped working,¬†a couple weeks ago. I don’t have any answers yet but will write about it when I do. All that’s been found so far by my non-specialist doctors is narrowing of the spinal canal (moderate). Now, I didn’t have that last year…

I think it is actually related to hip dysplasia, but I cannot get my doctors here in Portland through the insurance I have to understand the secondary complications of connective tissue disease. They focus on typical explanations, which is good and also bad. It’s bad because there is no consideration of the primary condition I have. It’s good because they don’t assume it is related to a connective tissue disease. Both of these scenarios should be considered. My clinicians are just¬†not educated on connective tissue disease, so the other obvious consideration is negligently overlooked. In fact, I think there are only a few specialists on Ehlers-Danlos Syndrome and related disorders in the country, usually the doctors you see at the EDNF national conference every year.

My doctor put in a request to have my insurance pay for me to go see Dr. Franconamo, but I honestly do not feel much faith for my insurance company, a huge corporation that provides its own care. They are insurance, and they are the healthcare provider. It is wonderful for the general population probably, but I am getting lost in the system.

It’s a hard story, and I’ll tell what has gone on with my experiences in this system¬†one day. My husband is so upset with what he’s experienced just going with me that he is working on a public interest piece to show what is happening in¬†this specific¬†system.

Until then, I’m still working on a resources section. I want o write more often, but it is very hard lately with increased pain and decreased medication. I am also struggling with feeling hopeless; the hurtles to getting as well as I can be feel insurmountable. Luckily, I have some good friends, and they’ve been a great comfort to me.

I got this video from a friend that gave me a big smile, and I thought I’d share it with you. Take comfort in this little “video hug” and keep fighting for fair treatment when you can. And, if you’re tired like me, find a medical advocate through a loved one, friend or¬†local medical advocacy groups to speak up even louder¬†for you. We do not have to fight this hard for healthcare, and if¬† doctors are held accountable for not referring to a specialist¬†in the condition when dealing with a complicated and¬†less-understood condition, then I think that is a good first step. How many cases of tethered cord and acqu8red Chiari and¬†vascular complications could have been spotted earlier? How many become disabled or die each year before doctors are accountable for referring for rare diseases?¬†Prevent complications; don’t wait for them.