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The Last Year (Major Update)
6 years ago
I've been trying to find a way to share what 2018 has been for me. It's been a wild ride that I wouldn't wish on anyone.
The TLDR version is: My Daughter got a new Rare Disease Diagnosis that will change the rest of her life; I did 3x the amount of conventions of my previous years and I'm still struggling with my Health and now have a Service Dog to Support me.
Most of this has been shared to Twitter Previously but I felt it was important to serve it here as a complete account of what happened when we were admitted to Children's Hospital last year:
So to start with the first part of that sentence. In June 2018 my Daughter was admitted to BC Children's hospital presenting with a complete loss/blackout vision. She is already Deafblind but the nature of her regular vision means that she sees everything as Whitewash/Brightness Saturation. The sudden and complete loss/Darkening of her vision was distressing to her and to me. It was 5 episodes of this before we were able to be seen by the right team. And we were hospitalized immediately. During this time we did a full Neurological workup, were seen by Ophthalmology, Nephrology, Gastroenterology, Psychology, Genetics and Cardiology.
They came to a conclusion but didn't want to confirm the diagnosis without DNA/Genetic Sequencing. We got the funding almost immediately which was a huge surprise and they were able to get the blood work done, send to Finland while we were still in the Hospital. When we got it back it confirmed a diagnosis of Alstrom Syndrome. She has complications of Blindness, Sensory-Neuro Hearing loss, Diabetes and Pancreas Dysfunction, Kidney Dysfunction and Liver Fibrosis. She doesn't yet present with Cardiac complications but that may present during adolescence. They haven't been able to give us a definite prognosis for her and it's really stressed me out. I've been taking time to try and make her days as fun and adventurous as possible.
I am so grateful we live in Canada because MOST of our healthcare is covered. At some point we may have to do some fundraising for additional medical equipment (specialized meters, pumps etc) but for now, we're ok. She is happy, she doesn't know the full scope of her diagnosis yet, but we'll have to tell her eventually.
As to my own health, I'm still struggling with my own diagnoses. I had a Psychiatric Evaluation in Late 2016 that identified a number of things going on with me that I'd suspected but wasn't fully sure of. My Bariatric Surgery Program has moved me into a Pre-Surgery Program where I am learning lots of new Nutrition and Obesity Management, how to handle the stigma and biases associated with my chronic condition and where to go from here. I am hoping that I will be undergoing surgery sometime in the next year but only time will tell. Some of the medications they have me on are really distressing and causing very painful joint and muscle pain and deterioration. For this I've been coping with the use of more mobility aids and periods of resting. It's why some of you may have seen me in a wheelchair at FC this month.
My Service Dog, Merlin, passed his BC government qualifications in 2018 and is now able to accompany me everywhere to support me and it's given me wings. I managed to do FC, VF, BLFC, FurEh, Howloween and ANW last year! That is SO HUGE. I can usually only handle the Social obligation of two events in a year and have managed to hold my own at so many simply because of his support. I am looking forward to many more events in the next coming months and will have him in attendance with me through most of them! I am happy to report that Furries appear to be the MOST respectful of the communities I am a part of in Ignoring my working dog. Y'all are the best at that.
So, with this all said, I am... managing. I get stressed when people ask me how I am because it usually goes into this long winded Tirade about everything going on, and I often forget who I have told and who is new to the story. I am stressed out but coping most days, and while I haven't been posting much, I am still creating. Not nearly as prolifically as I used to, but still keeping on. I have missed my friends here and am hoping to reconnect with many of you in the next little while.
If you'd like to chat as Friends I'm on Twitter and Telegram as Rhari and will answer when I'm around
If you'd like to Chat Business I am available at Rhari.Draws[at]gmail.com and will Answer Mon-Fridays and OCCASIONALLY on weekends!
I missed you all and am Glad to be Back.
<3
Rhari
The TLDR version is: My Daughter got a new Rare Disease Diagnosis that will change the rest of her life; I did 3x the amount of conventions of my previous years and I'm still struggling with my Health and now have a Service Dog to Support me.
Most of this has been shared to Twitter Previously but I felt it was important to serve it here as a complete account of what happened when we were admitted to Children's Hospital last year:
So to start with the first part of that sentence. In June 2018 my Daughter was admitted to BC Children's hospital presenting with a complete loss/blackout vision. She is already Deafblind but the nature of her regular vision means that she sees everything as Whitewash/Brightness Saturation. The sudden and complete loss/Darkening of her vision was distressing to her and to me. It was 5 episodes of this before we were able to be seen by the right team. And we were hospitalized immediately. During this time we did a full Neurological workup, were seen by Ophthalmology, Nephrology, Gastroenterology, Psychology, Genetics and Cardiology.
They came to a conclusion but didn't want to confirm the diagnosis without DNA/Genetic Sequencing. We got the funding almost immediately which was a huge surprise and they were able to get the blood work done, send to Finland while we were still in the Hospital. When we got it back it confirmed a diagnosis of Alstrom Syndrome. She has complications of Blindness, Sensory-Neuro Hearing loss, Diabetes and Pancreas Dysfunction, Kidney Dysfunction and Liver Fibrosis. She doesn't yet present with Cardiac complications but that may present during adolescence. They haven't been able to give us a definite prognosis for her and it's really stressed me out. I've been taking time to try and make her days as fun and adventurous as possible.
I am so grateful we live in Canada because MOST of our healthcare is covered. At some point we may have to do some fundraising for additional medical equipment (specialized meters, pumps etc) but for now, we're ok. She is happy, she doesn't know the full scope of her diagnosis yet, but we'll have to tell her eventually.
As to my own health, I'm still struggling with my own diagnoses. I had a Psychiatric Evaluation in Late 2016 that identified a number of things going on with me that I'd suspected but wasn't fully sure of. My Bariatric Surgery Program has moved me into a Pre-Surgery Program where I am learning lots of new Nutrition and Obesity Management, how to handle the stigma and biases associated with my chronic condition and where to go from here. I am hoping that I will be undergoing surgery sometime in the next year but only time will tell. Some of the medications they have me on are really distressing and causing very painful joint and muscle pain and deterioration. For this I've been coping with the use of more mobility aids and periods of resting. It's why some of you may have seen me in a wheelchair at FC this month.
My Service Dog, Merlin, passed his BC government qualifications in 2018 and is now able to accompany me everywhere to support me and it's given me wings. I managed to do FC, VF, BLFC, FurEh, Howloween and ANW last year! That is SO HUGE. I can usually only handle the Social obligation of two events in a year and have managed to hold my own at so many simply because of his support. I am looking forward to many more events in the next coming months and will have him in attendance with me through most of them! I am happy to report that Furries appear to be the MOST respectful of the communities I am a part of in Ignoring my working dog. Y'all are the best at that.
So, with this all said, I am... managing. I get stressed when people ask me how I am because it usually goes into this long winded Tirade about everything going on, and I often forget who I have told and who is new to the story. I am stressed out but coping most days, and while I haven't been posting much, I am still creating. Not nearly as prolifically as I used to, but still keeping on. I have missed my friends here and am hoping to reconnect with many of you in the next little while.
If you'd like to chat as Friends I'm on Twitter and Telegram as Rhari and will answer when I'm around
If you'd like to Chat Business I am available at Rhari.Draws[at]gmail.com and will Answer Mon-Fridays and OCCASIONALLY on weekends!
I missed you all and am Glad to be Back.
<3
Rhari
Best wishes for your daughter and give Merlin a pet for me!