Hello,
I’m sorry it’s been quite awhile since I last updated my blog. I like to be able to share happy, uplifting posts but the truth is living with chronic illnesses there are ups and downs and all those in between and I have always been honest and really like to be truthful with my experiences as I know there are others out there struggling and maybe this will make you feel less alone. I share my journey not for sympathy or for people to feel sad but to show the truth of what living with EDS in Canada is truly like. For each day you live and don’t have health challenges that hold you back from life those days are worth more than anything in this world. Those are the best days of your life.
Everyday I put a smile on my face remembering I am lucky to be alive for another day. I am grateful for the early morning sunrises and all the summer flowers in bloom. I am grateful for my girl Roxette (my doggy) and for my parents and family members and friends but honestly lately I have been feeling a lot of why’s. I have always been the type of person that does it all and could never sit down always going and going, doing this and that and everything in between. These last 5 years my life it has been a 360 degrees turn.
The truth is just because you eat healthy, exercise and do all the right things to take care of yourself doesn’t guarantee that you will never get sick or have a chronic illness. I don’t think anyone truly understands this until you become chronically ill. I lived a holistic healthy lifestyle took care of my body only ate organic foods, avoided medicines stuck to just holistic ways. I exercised practiced yoga, meditation, I went to wellness centres and did preventative care. If I did all of these things then WHY am I the way that I am now? I took the time to take care of my body and I was good to myself. I did all the things that I could think of to care for my body and provide the best environment for me to be healthy.
I wish I had the answers to my question but as I have been learning life is a series of lessons & learning and good & bad things that happen. I can’t help but think back to all the things I did to take care of myself. I was a Registered Massage Therapist I knew how to take care of the body. Healthy people that haven’t been chronically ill will always offer their opinion, do that eat this, do more exercises be more positive and think better thoughts. No one can truly understand what a person feels until they feel it themselves. I think the people that would make the best doctors are the ones that have been thru it themselves, they can relate to it and as humans we don’t understand things unless we can relate to them. what most people fail to recognize is that most chronically ill persons are probably the most positive people in the world as they are the ones feeling awful everyday but still try to lead as normal lives as possible.
I feel so misunderstood by the majority of the medical community where I live. Imagine needing glasses because you had bad eyes but the people that were in charge said just focus more and you’ll be able to see better, the person tries with all their might to see better but just cannot see no matter how hard they try, without the glasses. The person reports that they need the glasses but are denied the glasses because they aren’t trying hard enough so they walk around unable to see and keep being told that they are simply not trying hard enough and are just de-conditioned. This is a battle many people with chronic illnesses face, there is so much misunderstanding as many of these conditions do not have a cure the best bet is managing the symptoms on a day to day basis. The person knows what their body needs and yet the professional can’t understand this because it didn’t say that in the outdated, misinformed documents, books, etc or in my case its not in a article or suggested by a Canadian doctor.
It seems so crazy how there is such differences between Canada and the USA and even in Canada between provinces. I saw a electrophysiologist in Alberta and because he is in Alberta my GP’s office said I don’t have a opinion from a BC doctor. BC does not have a autonomic clinic set up to properly do the testing. BC medical pays for patients to travel to get the testing done in other provinces but then diagnoses are then questioned if they are not made in the patients province. My head is just spinning I can’t understand why people wouldn’t work together to get a person the proper care that they need regardless of what area of soil there feet are planted on. One specialist told us that “the USA over operates”, so we posed the question does that mean Canada under operates and under his breath he said “maybe”. Don’t the majority of the published medical journals come from the USA? I can’t understand why there is such a discrepancy when most of the EDS knowledgable physicians are in the USA why wouldn’t the physicians in Canada be open and want to get the opinions of the specialists that do have the knowledge or experience?
With my Dysautonomia (hyper pots) my electrophysiologist in Alberta told me I must consume a minimum of 3L of water a day and 3 tsp of salt per day. It was even written in my notes passed on to the referring doctors. You know what I was told by one of my GP’s is that salt is a placebo and if I told any other doctor that salt and saline infusions help me they would laugh at me. He also told me that I need to stop seeking help outside of Canada. He told me this is what I have to work with and I need to accept it. I was also told at that same appointment “no local neurosurgeon wants to touch me with a 10 foot pole”… I couldn’t even form words together, it took everything in me not to burst into tears. Nothing like feeling humiliated and invalidated with something that is actually working for you and your body the fluids and salt. Sure it’s not the typical “normal” healthy person thing to do but for a person that is suffering with a chronic condition they know what works, trust me anything you can do that helps keep your body at a stable place it’s everything to that person. A moment of having symptoms under control is very much welcomed with open arms.
Why is it that the chronically ill are at the mercy of persons that won’t or can’t help them and when they come with ideas or strategies that are working for them they are shot down. It’s a real tragedy that happens to many many people. I have been trying to see a neurosurgeon since 2014 and I have been denied with every referral made. Every new specialist that I see tells me I need to see a neurosurgeon but they won’t refer me themselves and leave the referring to my GP who has literally zero clue at how to refer me for my conditions. I am asked what do you want me to write? Ummm I’m the patient isn’t that your job to write the referrals? Or am I suppose to write them and then have them send them in? (SMH)
I contacted my MLA who then contacted the Health minister and they called me and I explained my situation and how I can’t get in to see a neurosurgeon or get a out of country medical form signed so I can go back to Maryland to get help from my neurosurgeon that knows me and they said sorry all we can do is give you a list of all the BC neurosurgeons and you and your GP can go thru the list and write formal referrals to all of them……. I said ok but what happens when I get written denials from all of them they said well you could contact the college of physicians and surgeons and file a complaint…. I said that is there to protect the doctors who is there to protect the patients and get the patients the medical care that they need… again they said sorry we can send you the list of the surgeons or you’ll have to make a complaint with the board. My parents did write them and asked them if they did C1-2 fusions in BC and they replied and said that this surgery is available in Canada but is reserved for “trauma” patients only. Well I did have a trauma to my neck that’s what started this whole thing…..
Again I explained I need someone to sign the out of country medical form but I can’t get in with a surgeon here again they said sorry you need a neurosurgeon in BC to sign it I said I can’t get in with one I have been denied by over 10 of them…… this is what happens it’s a never ending circle. What am I suppose to do? I have all of my documentation, I have folders and folders of notes and published peer reviewed medical journal articles explaining what I am going thru and what I need. It’s all political and you can bet if one of those persons or family members were suffering they would be getting the help they need. I’m left with no answers and no help just a list of 80 something neurosurgeons that are practicing in BC. The only thing I can think of doing is to send a personal letter to each of them begging for them to see me to at least fill out the form or offer me some help here. My neurosurgeon in Maryland would be happy to come here and teach them he has offered this many times but no one has shown any interest. He has offered to speak to them in what I need and it’s denied as well.
Sometime in March or April I came to the realization and threw my hands up in the air and decided that I cannot fight for help here anymore. I am thoroughly worn out and I just cannot handle this battle anymore. If things are meant to be they will happen but I just can’t use my energy to fight for care anymore. The toll that it has taken on me and my family is awful. I can’t continue going to appointments just to keep getting told there is nothing that can be done for me or what I say works for me is completely disregarded. Logically a person just has to give up and stop trying. Since January I manage my own PICC line I buy my own saline fluids, my own dressings, and somehow manage to reuse IV lines more times than I should to get me thru keeping my body hydrated which keeps me out of the ER which is the most dangerous place for a person with chronic health conditions that are not commonly known about.
My joints have been more unstable and every time I swallow I can feel my throat dislocate, which is a really awful feeling. When I do manage to eat or drink I have to pay such close attention to swallowing and if I forget I choke very easily. I even choke on my own saliva if I swallow and don’t pay attention, it truly pathetic. My Tethered spinal cord has been really bothering me. Somehow I keep convincing myself that it will get better tomorrow but there have been hundreds of tomorrows and it’s just not getting better. With this tethered spinal cord it can cause neurogenic bladder & bowel and I think both are affecting me. I literally cannot feel anything in my abdomen and I think my GI system has shut down, like the nerves are not working for motility. I don’t feel hunger like I used to when I had not eaten. I have absolutely zero energy and even chewing food I have to use my hands to help my jaw chew because I am too exhausted. I don’t understand this because this has never happened to me before. Eating or drinking is a energy zapper for me. I am going to be undergoing some testing as my doctors think I have Gastroparesis which is basically where your stomach and intestines stop working. If I eat something small I feel sick and I am full for hours and hours even a cup of liquid leaves me stuffed for hours and hours. I’ve lost 50 pounds in a few months as I have not been able to eat or drink as usual.
My neck at C0-1 has been dislocating it is the worst feeling because it will make a loud thunk and crack & go back into place and I will feel stunned for a few minutes, I can’t speak or move then things settle and I feel ok until I move my neck and it slips out again which happens dozens of times throughout the day. The scary thing is that I know what’s going on with the joint in my neck and I can’t help but think it’s only a matter of time and I could literally just internally decapitate. My first thoughts are would anyone even be able to help me would they even realize that it’s my neck? Or would I just lay there dying while the medical persons all ran around stunned and confused as to what was wrong with me…..
I wish people knew how much I push myself to just lay in a reclining chair. To just get dressed in the day is so energy zapping it sounds ridiculous and before 5 years ago I never understood how much energy it takes to just get dressed for the day. To just act “normal” like I am fine and not showing any symptoms. I try to act this way on most days but then my body just can’t keep up and I crash.
No one would choose to be chronically ill and I would do anything in the world to go back to my old life or trade with anyone. I miss working, I miss interacting with people, I miss being able to just get up and get in a car and drive. I miss my friends that I used to always see. I miss being able to eat and hydrate without having consequences.
The helpless feelings of not being able to drive, not being able to cook or bake a meal like I used to. Nothing is the same. I have had no choice but to accept this and I have accepted it but somedays I really do dream about the life I had. I haven’t spoken about this but I am open about it now because that’s the only way a person can heal is by being open and honest. I used to be married, I was with my then husband for 12 years. I thought I had a husband that would be there for me in sickness and in health but instead I was abandoned like I was some dreaded parasite, like a piece of garbage that was tossed away and replaced without any regard. You really don’t know a person no matter how long you have known them until you get sick then that is when the true colors come out and you see if they were the person they claimed to have always been or you find yourself all alone. I smile and tell people I am fine but honestly I am hurt, and confused as I was never able to get a truthful answer or explanation I was gaslighted till the end. I am alone and the truth is I will always be alone. I have to be fine with that, I can barely take care of myself thru the day I couldn’t even imagine having a relationship with another person. I don’t have enough energy for myself let alone another person, and in all honesty I would find it very hard to trust another person so why would I even want to set myself up? been there done that is what I feel now. This spring I did one thing for myself that made me feel stronger I reverted back to my maiden surname and it felt great to take a piece of my old self back.
Chronic illness is a unwanted thief, bursting into your life and stealing every bit of the life as you once had known. The only thing a person with a chronic illness can do is accept the thief for what it is and pick themselves up and somehow dust themselves off and find a new way to live life. Live life in the new way with all the memories that once were and have always been, but live life alone almost like a child alone learning how to live from scratch with all the memories of what once was and had always been buzzing around your head. I often lay here thinking this must be what it feels like for people that get abandoned in nursing homes. They become a burden to their family members, the people that they once cared for and are just dropped off with a few items that are familiar to them. They are visited on special holidays or celebrations but forgotten about during the rest of the times. Tears flood my eyes as I type this my heart breaks as I think of how our society is there for people when they are able bodied and can make contributions to the community but as soon as a person is unable to they are dropped and forgotten about. 😦
For a person with a chronic illness people care and want to help at the beginning stage but then as time marches on people get tired of seeing a person staying sick, they can’t understand how a person isn’t getting any better already. The person doesn’t get better, which logically we are programmed & conditioned to believe as most illnesses have a beginning a middle and a end. For chronic illness it gets awkward and people are forgotten about or cut out. Chronic illness folks don’t have a end in site, this is something that we are told we will just have to learn to live with for the rest of our lives, there is no cure, there is also not a end in sight this will go on for the rest of the days that we are alive.
I have given up but not in the way it sounds. I’ve given up seeking help for my medical problems whatever is meant to be will happen and I am learning to trust in this and I have stopped trying to explain my situation to others. People will only understand what they can at the time. What conclusions they come to in their own mind about me or anyone is not my business and none of us have to prove our illnesses to others. I can go blue in the face trying to convince medical professionals, family members, friends etc about what its like and what I need but the truth is unless they have been thru it they just can’t understand. All I can do is get thru each day as best I can and just ignore all the judgements and misunderstandings people have as someone will always have a opinion on what they think you should be doing. When people ask how I am it’s always going to be I’m fine because I have no more energy left to explain that no I am not fine I am struggling and I have a chronic illness for life Like it will be here for the rest of my life there may be better days but the truth is a lot of days I am struggling in silence praying for a miracle of help to come along or for the suffering to end because I am not living I am only surviving dreaming of the days I could live again.
I have accepted that I cannot get the proper medical care here in BC, Canada for the neurological issues that I am facing. Its taken me 5 years to accept this. Its taken me 5 years to realize that it is not my job to educate and make doctors believe me. It is not my job to go to appointments and leave crying because I can’t get help or not being believed. Its just not my job to take on any of this burden, I do not have any more strength to give to this burden. I have carried this burden for over 5 years and I just cannot do it anymore. All I can do is keep holding on and pray that one neurosurgeon will see the light and stand up for me and fight for the care that I need.
As my health continues to decline it is what it is there is literally nothing I can do about it except accept it, or literally win the lottery to get back to the USA where the specialists are. I have fought for over 5 years, I’ve fought for help here. I just don’t have anything left in me to give to keep seeking help here, I feel completely empty and completely let down by the BC medical system. My candle has been burned at both ends and there is just nothing left but ashes. I am so tired everything exhausts me these days. I feel grateful to have my blog and to all my followers and my fellow EDS warriors. I hope that information on this blog helps you in some way. I have & always will be a advocate for the chronic illness community. We have Strength in numbers and alone we may be fragile but in #’s we are strong. 💪🏻
In a dusty corner of my heart I still hold out a shred of hope that a miracle will happen that will get me back to Maryland to see my neurosurgeon. some days the hope is stronger than others.
Thank you for stopping by my blog, I am wishing each of you a summer full of peace and sunshine and many happy moments. 💜☀️ 😎 ✌️ 💜
***I have received several messages from people trying to find me on FB to send me a message you can find my page on FB:
Sarah’s journey thru Ehlers-Danlos Syndrome & Spinal Instability
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chronicallysarah64