Sydney is sick and needs your help
In the summer, after years of learning how to live with my chronic condition and how to gain strength with my g-tube feeds, I was on a trip to stay on an island. My body was doing so well and I was so confident. I had a g-tube that was finally giving me the nutrients I needed and I had been able to gain weight and muscle. I was the strongest I had ever been since I had become disabled and I was so happy to be able to walk further, to go on trips on my own, to be able to drive again, and walk down the beach. In my confidence, I drove 3 hours North to Parry Sound, got into a boat, landed on the island, my favourite place in the world, unpacked my things and continued to read and meditate for two days. It was lovely. I went to sleep on the second night relaxed and the happiest I've been.
I woke up at 4am vomiting. I ran to the bathroom. I think I threw up for around an hour, and if I wasn't vomiting I was heaving. I was sweating then shivering, trying to cover myself in blankets and take them off with the hot and cold flashes while holding myself over the toilet. Finally the vomiting slowed. I was covered in sweat, my back hurt, but I went back to bed hoping that maybe I would sleep it off, as I usually do when my gastric system acts up. At 6am I woke up, and I couldn't move.
My back was seized, my chest and stomach were in the worst pain I'd ever experienced and I was vomiting again. I had slept with a bowl beside my face. I called my mother and I told her I couldn't move. I was alone, on an island, in the worst pain of my life and I couldn't move myself other than my arms, but slowly.
It was an extremely painful trip to land with the help of a family friend. We visited the hospital in Parry Sound that tried to get the pain down enough to get to Toronto, but I was vomiting too much to be in the car. It took us two days to get home. We were in and out of hospital briefly, I was determined to keep getting home and staying home, but the pain was getting worse and finally, at an appointment in the hospital, the pain cracked me. We ran to the ER and I was admitted. That was on October 1st, 2018, I have not been able to leave the hospital since.
For the past months every day we do our best to bring new research and ideas to the table to help stabilize my condition, but unfortunately, our team has not been doing the same. I am feeling as though we may need another team that has more motivation to discover the origin of my pain, in contrast to a team that wants me to stop investigating and have me sit at home while my body deteriorates.
Currently, the hospital here has decided that there are no further medications or testings that they feel are necessary to determine what is going on. They sat us down and told me that they feel they “are nearing the end of what they can do”, and told me that I should start meeting with psych to deal with “loss of independence and body function” and to “find meaning in life as it is”. It is discouraging but we continue telling them that our goal is to fight for my life and independence, not to just stabilize me temporarily.
I went from the best I’ve ever felt since being disabled to “one of the worst cases they have seen” within 4 hours, while unconscious. Over the total of my hospitalization time, I've been here 8 months on May 2, we have been telling them that something has happened to my body that is not part of my genetic condition, that has not been identified, and that it is getting worse but they do not want to continue with any investigations.
We have seen my condition decline steadily over the past months.
As a summary:
I cannot eat or drink because I have esophageal dysmotility. When I swallow, the food doesn't move down my esophagus. To help this I got a g-tube, and it did help for 6 months.
I cannot use my g-tube now due to vomiting. Anything that goes into my stomach comes up almost immediately. They placed a J tube so I could keep my feeds down.
Soon it became extremely painful to have feeds put through the j-tube. As I no longer could get enough nutrients in to survive, they put me on TPN, "vein food", life support.
TPN is very unsafe. They told us that after 1 month of being on TPN the risks outweigh the rewards, but right now the other option would be to starve in two weeks which isn't ideal either. I have already had one blood infection from the line, and those are extremely dangerous. With me on TPN, my prognosis was at less than a year. With my first endoscopic nerve block w steroid, the pain decreased enough for me to get off of the TPN and onto my feeds of Resource 2.0 again. The block is wearing off, I am hoping they will agree to another to make sure I don't need to be on TPN again.
I love to live, and I want to fight this battle to keep moving forward. I'm not done with this life yet, but unfortunately, Canada can't help me right now, and we need to seek EDS specialists that have access to a larger amount of information from the larger population.
We will be traveling twice in the next year to see Dr. Hsu in the USA. The first visit will be for a posterior nerve block that is unavailable in Canada. That procedure costs est. $8,000. They are booking surgeries 1 year out, and the surgery will cost around $40,000. The total will cost around $48,000 not including flight costs, room and food/feeds. Thank you to all who have donated already, and to those open to donating in the future. I am thankful beyond words.
My Instagram for more info: @sydneyiskindasick
Medical conditions diagnosed:
EDS Type 3 - Hypermobility - collagen flowers
Severe fragmented sleep disorder with micro arousals every 4 mins on average
Asthma - mostly exercise induced
Bladder cysts and small bladder issues
Scoliosis + kyphosis + lordosis
Dislocations and subluxations in every joint
Labral hip tear on left side
J-tube. Resource 2.0
I've spent Halloween, Christmas and Easter in hospital, and am coming up on my birthday in June. As I write this it is May 19, 2019 and it has been 8 months and 17 days. I am excited to get the procedure and surgery as hopefully they will be able to improve my quality of life enough to be able to exercise, read, dance... to do the things I love.
All of your donations will be going to the procedure, surgery and trip necessities to conquer this pain and be able to live life freely again, uninhibited with the pain that is leaving me bedridden.