The fight for basic medical care in Canada & the reality of the lack of care that is being provided.

Here’s another blog update & reality…

I am not much of a video person but the other day I had such a let down I was seriously feeling so let down, frustrated and just so confused I decided to do a video. I think video probably conveys the pain, frustration and hurt that I am feeling better than I could explain it. I was trying my hardest not to cry because I wanted to get out what I was feeling so there are 2 videos because I needed to compose myself and honestly I don’t know how to edit videos or even merge them together so this is the best I could do.

I saw this saying the other day and it’s just so true. Until a person has faced a situation themselves they cannot really know how hard a person is trying and truly pushing themselves.

I will also add that it’s very clear that Canada especially the west coast of Canada does not help EDS patients with neurosurgical or even with basic medical care. I had hopes that perhaps I could be provided some basic care and quality of life needs… this has proven to not be available.

A quick run down I cannot walk properly I haven’t been able to walk properly without any assistance for 2 years now. Things became worse on October 11th when I woke up numb from the waist down. My right leg stopped working and it drags behind me. I am very unsteady on my feet and I am very weak and have a lot of fatigue and adding my POTS into it I am short of breath and cannot stand or walk very far at all, even with my rollator. Most of the time my vision goes black and I have to suddenly sit down before I pass out. It was suggested that I have a Occupational Therapist come for an assessment, I was somewhat hesitant at first because I don’t like a lot of medical persons in my home because it is my safe place away from all judgements and ridicule of how the uneducated medical person thinks I should be living my life. They don’t understand about EDS or POTS and place their personal opinions onto me about how they think I should be living my life. I did however agree because I am grasping at straws for any help that I can get here. I am being open to everything suggested to me, I really truly just want some quality of life at least somehow being able to get outside and take my dog for a “walk” and just be in nature. I’ll leave the rest for the videos.

It’s just exhausting trying to access basic medical care. I know they are not providing the neurosurgical care that I and so many Canadians require, but now I am being blocked from basic quality of life. Even my own family doctor has zero idea what I face, a office visit does not portray how much I am struggling, I can’t even get to my doctors office anymore so I am at the mercy of asking for phone appointments when they can be fit in. I am having to prove myself and I know they don’t understand me or my conditions and they transfer their personal opinions onto my home care team and it creates further blocks in my care. When a patient comes to you sick the last thing they should have to do is convince you they are not well. Yes a EDS patient does not fit into your typical cookie cutter box, some people just don’t fit into these typical boxes that they seem to squish everyone into. I wish this was just a nightmare that I could wake up from. We Canadians with EDS and other less common conditions deserve basic care. Every single human deserves access to basic proper health care. This is a human rights issue.

Do I and others born with genetic conditions not deserve essential medical care? Why is this even happening in Canada? Other countries look to Canada as such an amazing place to live with access to the best universal health care, the problem is this care is provided only for people who fit into the cookie cutter boxes. If your truly a medical zebra the walls are put up and they don’t know what to do for you, except wash their hands of you. We are left fighting on our own, having to do all the research and tell them the type of care that we need. Honestly we become our own doctors without the certificates. This is not a job I should have to do nor want to do but it’s necessary to keep us safe from all the neglect and dangerous interventions that are offered to us… Not dangerous to the average “normal healthy person” but for a EDS patient a spinal injection could have devastating consequences.

I lived thru this in 2014 I suffered a spinal fluid leak. I was sent home from the hospital with this leak and told to get some rest and I just had a complex migraine (I actually had undiagnosed severe C1-2 atlantoaxial instability) which is why I was there my neck was so bad it looked like I was having a stroke or they thought maybe it was MS….the leak was caused from a botched attempt at a lumbar puncture that was done to rule out the cause of the neurological brain stem signs I was presenting with. Had I known I had EDS then I would have avoided that nightmare. I had to fight to get this leak repaired it took 2 blood patches, the first failed and I had to fight so hard to get them to do a second patch. During the second patch I passed out because the pressure in my head was too much and all of a sudden everything went black and I woke up to people screaming my name the nurse said that’s never happened before, she had a scared look on her face… looking back I am sure my undiagnosed EDS played a huge role in this. Had I known this I would have never agreed to this lumbar puncture which can cause so much harm to EDS patients because of the fragile, weak tissues.

On March 1, 2018 when they misdiagnosed me as having a aortic dissection they acted fast and quick and for the first time, as scary as it was I knew that I would be able to get the care that was needed, for once I fit into the cookie cutter box. Thank goodness it turned out to not be that but it got me wondering how many times has this happened…. I am sure a lot of money was spent on the inter hospital emergency transfer and they also had a ICU nurse accompany me along with the paramedics. The cardiothoracic surgeon was even waiting for me as I pulled into the hospital bay. Thank goodness this man had the sense to re do the CT scan, can you even imagine if they had cracked my chest open for nothing, that’s just terrifying, I will never forget that terrifying day. I was terrified about having anaesthesia because of my neck and the doctors not understanding EDS and my fused neck and I was so worried that they would break my hardware and mess up my fusion that I had to sell my house and use my parents retirement savings to fund. I have nightmares about this still. Without asking me they gave me some medication to relax me, they assured me they give it to pregnant women all the time and it was “safe” and of course I had a adverse reaction to it. I literally couldn’t move or even speak. Thank goodness this nurse was there she grabbed my hand and held onto it the whole ride down to Victoria. I had no way to communicate how I was feeling and my throat felt like it was so tight, they were asking me questions and I couldn’t even speak I just stared at them tears pouring out of my eyes hoping they would realize something wasn’t right. I had my phone in my hand and I couldn’t even type I wanted to call my mom and tell her something wasn’t right and she would be able to tell them.

After my 2nd CT scan you know what they told me that the CT scan machine at the first hospital was out of date and old so it incorrectly showed this aortic dissection…. so if it’s old and out of date could that also mean that it is missing stuff as well? How are they even allowed to still be using this old out of date machine? It’s December now and that was in March and they’re still using that scanner in the hospital, I inquired about it at my most recent hospitalization. It makes me wonder how many more times this has happened how much wasted money has been spent on this sort of diagnostic errors? Is this why the out of country funding is not being approved because of all these errors in wasted money there is no money left for us to get the essential neurosurgical care we require that can bring us EDS patients some quality of life?

It was after this terrifying ordeal my dear friend suggested a medical binder with all my info in it so if I ever found myself in a situation like this again the papers can speak for me. My next blog post I will show you how to make a medical binder. I recommend it for everyone that has any condition it’s helpful to keep you safe but also helpful for the medical staff as well. I had my binder at my most recent hospital stay and all the nurses appreciated it. Especially having an uncommon condition it’s a life saver. EDS is complex and that’s another reason we require these specialists that know EDS we do not respond the same ways in which a normal person does to any interventions. A EDS body metabolizes medications very differently. For example during anaesthesia EDS patients require larger amounts of medications to put us to sleep and to keep us asleep we metabolize these types of meds very quickly and can wake up during surgeries etc. On the other side of that there are some medications that EDS bodies cannot metabolize such as that relaxer med they gave me during my false aortic dissection. It took me 4 days to metabolize that medication. At the hospital I felt like I needed to bolt out of the door but I couldn’t walk I was trapped. I was in the resuscitation bay and I pulled off all the heart monitors because the only thing I could do was stand up with my moms help. This medication gave me such anxiety I never normally feel this need to bolt. I came home and it took 4 days for me to metabolize that medication. For 4 days I had the worst anxiety in my life. Finally after the 4th day once it was out of my system I was back to my normal me. Drug induced adverse reactions are horrible especially medications given thru IV just way to intense for my body to handle. I have that listed on my adverse reactions now but it’s these little things that make it crucial that we only be treated by knowledgeable EDS doctors. This is what happens when I take medications it’s very scary to try new ones because more than likely it will be a adverse reaction. My neurosurgeon Dr. Fraser Henderson completely understands all of these things and so does the hospital staff at his hospital. A EDS patient can go there and feel relaxed knowing that they are safe in regards to EDS and all the complications that EDS patients could face.

This is a page from Dr. Spanos this is a page that every EDS patient should always have with them. Go to his page print it off and put a copy in your purse or fold it up in your wallet.

https://alanspanosmd.com/wp-content/uploads/2018/07/Surgical_and_Anesthetic_Precautions_2nd_revision.pdf

For those wondering why the zebra?? Except that EDS is not rare it is under-diagnosed and take years to decades to be diagnosed and some even have to go out of country to get diagnosed properly.

Thank you for reading and sharing my blog around. I appreciate every single person who takes the time to go thru this. I also really hope that others out there see this and helps them not feel so alone. All of the zebras out there your voices matter and they count and together we are a dazzle and that makes us even stronger! Feel free to message me anytime with questions the more information and knowledge we can get out the more likely we will be into getting basic care and neurosurgical care here in Canada or at least getting the funding for us for these life saving essential surgeries.

They do so many elective non urgent surgeries in this country yet life saving neurosurgeries are being denied… this is a problem and we won’t be swept under the rug we need help, we need care, we need the funding to go to the USA if it won’t be provide at home here for us. This is a basic human right. Just because we have EDS which we are born with and did not cause were denied access to essential medical care? If you will not help Canadians with these essential surgeries here or approve out of country funding is this not violating our human rights for access to medical care?

Side note:

Another article explaining why Canada needs to get a upright MRI machine for proper imaging. Are you being told that your static supine imaging is “normal” trust your body you know it best. Upright MRI is available in the USA or in England and some other places thru Europe. Canada does have a upright MRI in Vancouver but it’s only allowed use is for research, this is such a shame. Many EDS patients in Canada could have answers if they were allowed to have a scan done in the MRI here. This would show the neurosurgeons here our unstable spines due to ligament laxity, as when we are lying down the spine seems stabilized and therefore looks “normal” but this is furthest from the actual truth.

https://medtechengine.com/article/buried-alive-why-traditional-mri-machines-need-to-go/?fbclid=IwAR1c6vk80zJwdUh0736fYXbOHoQgb4hzwnyuxzeD00dz-hwXvbA8boTB_JE