grateful.
today was spent well.
i think part of the issue when getting prednisone pulses is to just give in.
if feeling awake i let myself be awake.
sleepy...then i sleep.
sometimes it just feels like i need to lay on a couch and watch crappy tv...so i do.
i'm lucky that i have the freedom to do that right now. i am staying at my parents and yes i have errands and things to do in preparation for toronto i just need to let myself do these tasks when i feel able.
like right now at 3:37 am on saturday night i am sitting in my basement watching 3rd season of Weeds and re-organizing all my pills and figuring out which meds i need refills on and which ones i need prescriptions for as I need to take 3 months of pills with me to Ontario before I'm covered by their healthcare.
As a side note to my American friends....I met with my CF social worker who has already spoken with the social worker in Toronto and pre-arranged to have all the paperwork sorted out for me, I can do it online and am never without coverage. The docs willingly send me with more than enough free meds with additional supplemental antibiotics just in case and are more than happy to send me more meds in the mail should I require them.
If politicians tell you that public healthcare in Canada doesn't get the patients the treatments they need when they need them...they are LYING! Even switching from being on disability in BC to having a fulltime job with coverage in a different province hasn't been difficult at all although I will keep you posted on how it goes once I get there.
My doctors and transplant co-ordinator have already sent all my files and x-rays and the like to the Toronto clinic and they have been briefed on the situation. My primary doctor here in vancouver has decided that if/when I do go to Toronto he will not entirely transfer care there. I will see the team there and get tests done in their clinic but he will remain in charge of my treatment as I am in a sticky situation right now and he has been following me very closely these past few months.
I feel so grateful that decisions regarding my healthcare are made by deciding what is best for me as the patient and not by who pays them or what insurance will cover. All the doctors here are paid by the government and therefor there is no denying care and there is no stealing patients or hiding information or any form of non-compliance in sharing information. We are all on the same team working as hard as we can to keep me healthy and I find such great comfort in that.
There is no stress in my life to pay copays or medical bills.
I have been on disability since before transplant which meant that the months where I wasn't able to work the government provided me with enough money to pay rent and groceries, and if I was able to work then they assured I made enough, making up the difference if my pay was lower. And if I did make more then enough that month then I didn't receive the supplemental income. It was a safety net. And even now moving to Toronto for this full time job I am giving up my disability file in BC but I checked with my social worker and if it doesn't work out, if I get sick and have to move home, my file is easily re-opened and my medications are instantly free again.
I am ever grateful to be Canadian.
Wow...that little rant came out of nowhere. I think it was because I came across an entry written by Talana about how hard it has been for her to maintain medical coverage and how some of her major life decisions have been made in order for her to keep her medications covered.
I know it's not as easy for everyone to access all the help they need with the Canadian system and it does help that I have the hardest working social worker in the country (in my humble opinion) but I just can't imagine dealing with all of these difficult health decisions and setbacks if I also had to worry about the financial side of it.
Ok...I was talking about my day.
I barely slept last night but this morning as we were driving to VGh to get my steroids injected I could barely stay awake. I find the pred gives me weird bouts of nausea so it could have been the gravol I took at 7. My ad drove me in and it was nice to spend some quiet time with him. I haven't seen Quinn or Namisha all week so my dad and I met with the girls at a Dutch Pannakoeken House called The Wooden Shoe Cafe after my treatment. It was lovely to sit for a couple of hours and catch up and chat about movies and plays and theatre with my friends.
Slept all the way home in the car and crashed in the basement most of the afternoon. Dad roused me up to join him in the park behind our house for a yearly neighborhood BBQ. It rained like crazy but it made it a bit more fun as everyone struggled to squeeze underneath the tents. Felt a little like the tea party in Alice in Wonderland with all the food piled high on the tables and everyone with wine in mismatched cups and mismatched chairs squished all together. I didn't last too long chatting with everyone although it was nice to pretend I was fine. I wore make-up and no one knew I was sick. I talked about Toronto and my new job and it was lovely to see old friends.
I excused myself and returned to my lair in the basement. Fell asleep around 8 and slept right through till midnight, which on pred is a wonderfully long sleep.
And here I am at 4 am wide awake and being terribly productive organising my meds and writing on here.
I think I felt a little better today. I walked to and from the car a couple of blocks today and I took your advise Kina and have been making sure to stretch and breathe deeply.
I'm thinking positively and allowing myself to look forward to this job and get excited.
I will do this. I can do this. I am doing this.
i think part of the issue when getting prednisone pulses is to just give in.
if feeling awake i let myself be awake.
sleepy...then i sleep.
sometimes it just feels like i need to lay on a couch and watch crappy tv...so i do.
i'm lucky that i have the freedom to do that right now. i am staying at my parents and yes i have errands and things to do in preparation for toronto i just need to let myself do these tasks when i feel able.
like right now at 3:37 am on saturday night i am sitting in my basement watching 3rd season of Weeds and re-organizing all my pills and figuring out which meds i need refills on and which ones i need prescriptions for as I need to take 3 months of pills with me to Ontario before I'm covered by their healthcare.
As a side note to my American friends....I met with my CF social worker who has already spoken with the social worker in Toronto and pre-arranged to have all the paperwork sorted out for me, I can do it online and am never without coverage. The docs willingly send me with more than enough free meds with additional supplemental antibiotics just in case and are more than happy to send me more meds in the mail should I require them.
If politicians tell you that public healthcare in Canada doesn't get the patients the treatments they need when they need them...they are LYING! Even switching from being on disability in BC to having a fulltime job with coverage in a different province hasn't been difficult at all although I will keep you posted on how it goes once I get there.
My doctors and transplant co-ordinator have already sent all my files and x-rays and the like to the Toronto clinic and they have been briefed on the situation. My primary doctor here in vancouver has decided that if/when I do go to Toronto he will not entirely transfer care there. I will see the team there and get tests done in their clinic but he will remain in charge of my treatment as I am in a sticky situation right now and he has been following me very closely these past few months.
I feel so grateful that decisions regarding my healthcare are made by deciding what is best for me as the patient and not by who pays them or what insurance will cover. All the doctors here are paid by the government and therefor there is no denying care and there is no stealing patients or hiding information or any form of non-compliance in sharing information. We are all on the same team working as hard as we can to keep me healthy and I find such great comfort in that.
There is no stress in my life to pay copays or medical bills.
I have been on disability since before transplant which meant that the months where I wasn't able to work the government provided me with enough money to pay rent and groceries, and if I was able to work then they assured I made enough, making up the difference if my pay was lower. And if I did make more then enough that month then I didn't receive the supplemental income. It was a safety net. And even now moving to Toronto for this full time job I am giving up my disability file in BC but I checked with my social worker and if it doesn't work out, if I get sick and have to move home, my file is easily re-opened and my medications are instantly free again.
I am ever grateful to be Canadian.
Wow...that little rant came out of nowhere. I think it was because I came across an entry written by Talana about how hard it has been for her to maintain medical coverage and how some of her major life decisions have been made in order for her to keep her medications covered.
I know it's not as easy for everyone to access all the help they need with the Canadian system and it does help that I have the hardest working social worker in the country (in my humble opinion) but I just can't imagine dealing with all of these difficult health decisions and setbacks if I also had to worry about the financial side of it.
Ok...I was talking about my day.
I barely slept last night but this morning as we were driving to VGh to get my steroids injected I could barely stay awake. I find the pred gives me weird bouts of nausea so it could have been the gravol I took at 7. My ad drove me in and it was nice to spend some quiet time with him. I haven't seen Quinn or Namisha all week so my dad and I met with the girls at a Dutch Pannakoeken House called The Wooden Shoe Cafe after my treatment. It was lovely to sit for a couple of hours and catch up and chat about movies and plays and theatre with my friends.
Slept all the way home in the car and crashed in the basement most of the afternoon. Dad roused me up to join him in the park behind our house for a yearly neighborhood BBQ. It rained like crazy but it made it a bit more fun as everyone struggled to squeeze underneath the tents. Felt a little like the tea party in Alice in Wonderland with all the food piled high on the tables and everyone with wine in mismatched cups and mismatched chairs squished all together. I didn't last too long chatting with everyone although it was nice to pretend I was fine. I wore make-up and no one knew I was sick. I talked about Toronto and my new job and it was lovely to see old friends.
I excused myself and returned to my lair in the basement. Fell asleep around 8 and slept right through till midnight, which on pred is a wonderfully long sleep.
And here I am at 4 am wide awake and being terribly productive organising my meds and writing on here.
I think I felt a little better today. I walked to and from the car a couple of blocks today and I took your advise Kina and have been making sure to stretch and breathe deeply.
I'm thinking positively and allowing myself to look forward to this job and get excited.
I will do this. I can do this. I am doing this.