Health update. Travelling interstate in hope of treatment for dysautonomia.

in life •  4 months ago

I have been using steemit fo the past 2 years.

My husband @azurejasper encouraged me to register a steemit account to record my then recent week long trip around Australia for charity.

That was over 2 years ago.

I visited Melbourne although only very briefly,
(as well as 6 other states that week).

That was the last time I travelled.

I was running marathons if you believe it, I did 7 that week.
Now I can hardly walk.

Living with Ehlers danlos syndrome has become increasingly challenging for me in the past couple of years.

Being diagnosed well into adulthood, the pieces of my life's puzzle that impacted my well-being for decades and were considered unrelated, are coming together.

Unfortunately it has taken a complete demise in health and function, and a huge degree of self advocacy to get to this point.

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If you google Ehlers danlos syndrome you will see pictures of stretchy skinned or double jointed people. This is because people with EDS have a genetic fault that effects their connective tissue.

Connective tissue makes up a large proportion of our bodies. There are several types of EDS and people are effected in many different ways, involving any number of systems in the body.

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I have been floored by this condition.

While muscular skeletal instability and damage has been incredibly impeding, I have multiple problems.

The impact of dysautonomia, something that remains largely untreated and unacknowledged has robbed me of participating in life.

It prevents from being involved in the lives of my children and husband.

EDS specialist do not exist in Australia.

At best someone can hope to find an EDS aware clinician in the speciality they require treatment, which is potentially every system.

Autonomic nervous system dysfunction presents with symptoms across all systems and can involve cardiopulmonary, renal, neuro, gastrointestinal or arterial function.

Postural orthostatic tachycardia syndrome (POTS) is a big problem for me and very common in EDS and dysautonomia.

Simply standing up can cause my pulse to hit 160 beats per minute.
Often people with EDS have POTS in conjunction with low blood pressure. Strangely I have raised blood pressure, that goes up dangerously high when I lie down to rest. Something I need to do a lot.

I become fatigued, pained, tachycardic and sweat like crazy, just doing basic things at home. This results in the need to rest (sometimes for days) to recover. A cycle of pain, fatigue and a growing sense of hopelessness.

When I lie down, as I said my bp goes up. Sleeping more than a few hours means I wake in pain, as I frequently dislocates my joints (usually shoulders, ribs, neck and pelvis).

Something very concerning to me however is lose sensation in my hands and feet when I lie down.


I mentioned diminishing hope.

I have been trying for years to get on top of this.

Specialists rehabilitation programmes surgical interventions and medications.

Some time back I heard about a doctor in Melbourne who has a specific interest in dysautonomia among patients with EDS.

I have been waiting for months to see him.

On Thursday I will fly to Melbourne from Sydney to consult with him.

Being upright in a car for 10 minutes can be tough for me. Flying to another state feels like an impossible task.

But I have to try. I must keep trying.

I am scared.

I'm not scared of diagnosis or treatment interventions or even pain. I'm scared of investing hope and not finding any help for my condition.


We have spent money that we don't have on treatment, surgeries, consultations, hospital admissions and now interstate travel, flights and accommodation. We lost the income I used to bring in as a registered nurse. We are now also looking to move our family away from everything they know to be close to my mother who is my support.

Of all of these things, it is the investment of hope in this trip that frightens me the most.

I manufacture hope from nothing everyday in order to keep trying.

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I wait months to see the next genius, in the hopes that I may be able to regain some dimension of life and purpose.

I'm scared to go to this appointment and leave without the last piece of my hope.


The puzzle images used in this post are courtesy of https://www.ehlers-danlos.org . If you wish to read more on the subject I have found it to be a great resource.

Steemians have been an amazing support to me. Have played a huge roll in keeping a reserve of hope to grow from.

Thank you.

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Above Image created by @lauralemons x.

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My dear girl. My heart aches reading this. I emphasize as I have severe migraine for decades which limits my life. At this moment, I am trying to recover from poison oak of all things this past week. I've been placed on Botox injections for the migraines and finally the second set has started to remove them almost completely. I'm almost afraid to hope that this can be my future. Every 3 months the injections need to repeat if this is to continue. It is however wonderful to be able to think clearly for the first time in a year to visit. Although, not to minimize the severity and rarity of your condition. I will be praying for you and do not let Hope go.

<3 is there a way they can let you be transported on a stretcher to make it easier for you :( I thought healthcare here is crappy seems Oz is even worse :( if you need me please feel free to Dm at any time <3

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I really feel for you M. I can relate all to well with some of the above mentioned. I know that Hope feeling too. It was, is, has been the same here. I normally dont say this for a few different reasons but I am praying for you. <3

Sending you lots of <3 and good vibes. I truly wish that this doctor can help you in some way.

La Fé es la que nos mantiene, El poder Confiar, Asi que animo y con el sacrificio que hara sera una lucha mas de cada dia. No hay que desmayar.

First of all i will pray to the Almighty Father regarding your situation and wish that everything will be fine soon and just keep up.

And good to know that Steeming is really giving an great support to you and in my opinion that is great aspect to hear.

And life holds the testing phase too and in my opinion these are your testing phase so push hard and you will be fine.

Wishing you an great day and stay blessed.

@girlbeforemirror,

I am scared.

I'm not scared of diagnosis or treatment interventions or even pain. I'm scared of investing hope and not finding any help for my condition.

Geese ... I'm scared for you.

I looked up EDS and spent a couple of hours reading. There don't seem to be many specialists in this field. More in the US than in Australia. Would there be any point in looking for specialists in the US? I'm sure you would have researched this at length.

I'm not sure what Australia's healthcare system covers respecting foreign treatment, but if money becomes an issue, we could organize a Steemit fund-raising campaign. It's been done before.

Quill.

Well written.Thanks for sharing

From where you get such good content?