This is so beautifully written. You are an amazing couple and I wish you both all the support, energy and healing to get through this. It is such an honor to read writing from both of you. You both have a way of elevating something right under our noses, so important, so that we can stop and take notice of another's experience. Thank you for sharing.
I was JUST wondering how you were holding up during Athen's marathon hospital admission. You capture the exhausting mix of pressure and boredom, chaos and routine of an acute care admission well. It must be disorienting to switch from home mode to work mode to hospital mode and home over and over again.
Sending you both lots of love, strength and patience. (And for Pete's sake, lay off the Baby Reindeer! That show is soooo painful to watch! It does not count as mind cleansing, end-of-stresful-day-amid-80-others day entertainment my friend!)
I could tell you all of my experiences having lived in Calgary since 2011, but they have not been promising. I could also tell you which hospitals specialize in what fields and where I’d suggest you to go but I tried to give my experience and knowledge to Athena. Living here is very complicated when it comes to our medical needs. I have had to be my own advocate my entire life but more so in Alberta. I have broken boundaries and ignored a lot of their suggestions, rules, etc. because none of their procedures, policies and guidelines were ever designed for anyone with Osteogenesis Imperfecta. I know A LOT of people here on a professional medical level but I can’t say that I trust them all. I don’t even have the same number of doctors as I did when I lived in Vancouver. Instead of the 20+ specialists I saw in B.C. I am down to only 5 or 6, only one or two that I trust. The only thing is for certain, I know from my life since living on my own in Vancouver for 15 yrs. and now living back in my parents’ home, you should have caregivers and the funding like many, to hire someone to help with basic personal care needs, etc. and if you don’t have insurance of your own, I would highly recommend getting onto the AISH program (Alberta Income for the Severely Handicap). I know it sounds all very opposite from what you and Athena are used to, but I have been on such programs and assistance since I graduated from high school in 1997, because that’s the only way I made it this far in life. Sure, I have friends and family, but at the end of the day the reality is, my body is not the same as it was when I was a teenager and when I was 20, my neurosurgeon already told me, my body had been through so much, that it was the body of a senior already. I used to only take 2 inhalers everyday but when I moved to Calgary, my health went downhill and I now take approx. 12 medications to manage my pain alone. My caregivers help me with transfers, toileting, bathing, light housekeeping chores, etc. so it really makes a difference in my life. However, my quality of life was much more positive and independent in Vancouver and also the Yukon where I grew up. I wasn’t even supposed to live past 2 yrs. old and I lived in the hospital for my first 5 years of life. That was the only home I knew until I was allowed to go home. When I was born, my parents had just moved to Canada from Hong Kong and doctors told them to meet Athena’s family because they would know what to do and what to expect in taking care of me. That’s how I know Athena. I have known her since I was born and even though we’re not as close, I worried about her when you both decided living here would be a great idea. Lifestyle, people and scenery wise, Calgary is nice but heath-wise, I am just a number and no usu knows what to do with me as I am even tinier than Athena. Nobody can even take my blood pressure and I have been overdosed before, here. That is truly my biggest heartbreak and regret.
Thanks for your note and sharing your struggle to access appropriate healthcare. You’ve been through so much. I am sorry to hear your experience in Calgary has been so negative. I can honestly say that my and Athena’s experience has been on balance positive despite recent setbacks. We love our family doctor and have built a small but supportive network. With a rare condition like OI it can be a challenge to find experts - that is to be expected even if it is unfair. It’s always a balance in any location - some good things, some not so good things. While we are going through a difficult time at the moment I think I speak for both myself and Athena that we have no regrets. We had good times in Vancouver (and struggles as well), and Calgary has come with its own adventures and challenges. Wishing you lots of strength and good health in your path forward.
This is so beautifully written. You are an amazing couple and I wish you both all the support, energy and healing to get through this. It is such an honor to read writing from both of you. You both have a way of elevating something right under our noses, so important, so that we can stop and take notice of another's experience. Thank you for sharing.
I was JUST wondering how you were holding up during Athen's marathon hospital admission. You capture the exhausting mix of pressure and boredom, chaos and routine of an acute care admission well. It must be disorienting to switch from home mode to work mode to hospital mode and home over and over again.
Sending you both lots of love, strength and patience. (And for Pete's sake, lay off the Baby Reindeer! That show is soooo painful to watch! It does not count as mind cleansing, end-of-stresful-day-amid-80-others day entertainment my friend!)
Thanks Gwen :) I've finished Baby Reindeer now. You're right, it's not exactly mindless entertainment.
What a story of love and strength against so much adversity. Go “team unstoppable”
Wishing you continued healing and so glad you have each other❤️
Oh Stefan, my love and support is with you both 💚
I could tell you all of my experiences having lived in Calgary since 2011, but they have not been promising. I could also tell you which hospitals specialize in what fields and where I’d suggest you to go but I tried to give my experience and knowledge to Athena. Living here is very complicated when it comes to our medical needs. I have had to be my own advocate my entire life but more so in Alberta. I have broken boundaries and ignored a lot of their suggestions, rules, etc. because none of their procedures, policies and guidelines were ever designed for anyone with Osteogenesis Imperfecta. I know A LOT of people here on a professional medical level but I can’t say that I trust them all. I don’t even have the same number of doctors as I did when I lived in Vancouver. Instead of the 20+ specialists I saw in B.C. I am down to only 5 or 6, only one or two that I trust. The only thing is for certain, I know from my life since living on my own in Vancouver for 15 yrs. and now living back in my parents’ home, you should have caregivers and the funding like many, to hire someone to help with basic personal care needs, etc. and if you don’t have insurance of your own, I would highly recommend getting onto the AISH program (Alberta Income for the Severely Handicap). I know it sounds all very opposite from what you and Athena are used to, but I have been on such programs and assistance since I graduated from high school in 1997, because that’s the only way I made it this far in life. Sure, I have friends and family, but at the end of the day the reality is, my body is not the same as it was when I was a teenager and when I was 20, my neurosurgeon already told me, my body had been through so much, that it was the body of a senior already. I used to only take 2 inhalers everyday but when I moved to Calgary, my health went downhill and I now take approx. 12 medications to manage my pain alone. My caregivers help me with transfers, toileting, bathing, light housekeeping chores, etc. so it really makes a difference in my life. However, my quality of life was much more positive and independent in Vancouver and also the Yukon where I grew up. I wasn’t even supposed to live past 2 yrs. old and I lived in the hospital for my first 5 years of life. That was the only home I knew until I was allowed to go home. When I was born, my parents had just moved to Canada from Hong Kong and doctors told them to meet Athena’s family because they would know what to do and what to expect in taking care of me. That’s how I know Athena. I have known her since I was born and even though we’re not as close, I worried about her when you both decided living here would be a great idea. Lifestyle, people and scenery wise, Calgary is nice but heath-wise, I am just a number and no usu knows what to do with me as I am even tinier than Athena. Nobody can even take my blood pressure and I have been overdosed before, here. That is truly my biggest heartbreak and regret.
Hi Elaine,
Thanks for your note and sharing your struggle to access appropriate healthcare. You’ve been through so much. I am sorry to hear your experience in Calgary has been so negative. I can honestly say that my and Athena’s experience has been on balance positive despite recent setbacks. We love our family doctor and have built a small but supportive network. With a rare condition like OI it can be a challenge to find experts - that is to be expected even if it is unfair. It’s always a balance in any location - some good things, some not so good things. While we are going through a difficult time at the moment I think I speak for both myself and Athena that we have no regrets. We had good times in Vancouver (and struggles as well), and Calgary has come with its own adventures and challenges. Wishing you lots of strength and good health in your path forward.