Monday, January 7, 2013

The Worst Year of my Life Review

A recap in review for 2012

- started going to work on time 10-5pm for 3 days a week
- Hooray Frankster is in town. We had family dinner at Magic Wok. First time!
- KaKa came to visit from Seattle. I fainted when she arrived and she did CPR. EMS to rescue.
- Stayed 2 weeks at York Central, declined to go to St. Michaels and went home to rest. In retrospect perhaps I should have gone to St. Michaels. Whatever.

- attended Dennis and Ramona's wedding. My voice has not return so I was completely mute.

- My cousin Esther and her husband came to visit me from Edmonton. Fun week of activities.
- Shortly after they left, I had episode of massive hemoptysis and passed out. EMS was called and I stayed at York Central for 2 weeks then transferred to St.Michaels ICU for 1 week then 1 week in 6Bond. I was intubation for almost 3 weeks. I was pretty nerve racking when they extubate me. The ICU team were doing their rounds and there were at least 6-8 doctors surrounding me. I told them I was nervous and asked for them to leave. The RT removed the tape then pulled the tube out. I closed my eyes. When I saw the tube out it was rather short. There biggest concern was that I wouldn't be able to breathe on my own. But I did OK. Remained on the bipap for the next few days.
- 3 people died in ICU while I was there. Although when I told my mom to ask the nurse she said they did not die? WTF. They closed their blinds all night. In the morning someone came to take the body away. Please tell me I was not hallucinating!?

- Dora and I attended Oprah Lifeclass Tour at the Metro Convention Centre. It was fantastic and we were treated VIP style. Hehe! We were upgraded to Row10 from the stage. Mind you there were 10,000s of people jammed packed in one room.
- told work I can not return so I remain on leave of absence indefinitely. Yay benefits. Bye bye to the working world. :(

- first evening out this year. Attended Cheryl's bachelorette party at El Convento Rico (gay bar). Fun times.
- attended PH Golf Kids to raise funds for PHA Canada

- toss and turn on deciding if I should go to Florida for the International PH Conference. I had a chronic cough but in the recent weeks it started to get better thanks to the codeine. So yes, I decided to go
- after hours of flight delays we finally made it to Orlando. 48 hrs in Orlando!
- reunited with all the PHA Canada gang
- started taking 7.5mg Zipoclone

- G's birthday bash at the Mansion
- Kelly's baby shower for baby Lucas
- bought a treadmill but I hardly use it. It's now my living room decoration
- went to Coldplay Mylo Xyloto concert with hooeyJ - best fuckin concert ever!
- my birthday - invited the guys over and I cooked them a full meal
- Auberge du Pommier birthday date with Dora

- Yve's bridal shower
- Yve's wedding reception
- Denny&Ramona's baby shower with the bouncy castle
- Kat's baby shower
- Scarpetta date with Frankster

- feeling emo. Don't remember what happen this month

- PC and Nancy wedding reception
- Uncle in town for 5 days, went out to eat nonstop at Terroni, Yangs, Magic Wok, Solo Sushi.
- watched Amaluna Cirque du Soleli

- Vegas Night fundraiser raised over $11,000 for PHA Canada. I personally started contacting companies requesting for donations in July and received over $2,000 worth of items!
- 6 Minute Walk for Breath was a success

- went to One of a Kind Show to buy $70 worth of shortbread cookies
- finally got my stupid hair cut and donated to Pantanee
- hot pot for Christmas with cousins, and Frankster's family

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  1. We are in a way very alike. I too can not sleep anymore without my bipap machine. They sure have changed a lot! My pressures are currently set at 17/5 with a breath per minute (bpm) of 22. My CO2 is a big problem. It's always pretty high. Before I started using oxygen, I would wake up and have to run to the bathroom to dry heave because of excruciating headaches. They went away within about 15 minutes because I'd wake up and move around which caused me to breathe more deeply than when I slept. I would have blackouts while I drove and that caused me to have one car accident after another. That's when my parents took me to a Pulmonologist and the rest is history. I started with 1lpm at night only and I started using the Bipap in 1993. So you knit and I crochet! Neat!! Do you know what the measured degree is of your scoliosis? When I was born with scoliosis, it was measured at 71 degrees. I have a Harrington rod now and I wore a brace for 11 years of my childhood. That sucked!!!

    Keep in touch!

  2. I think it's pretty incredible to find someone who's almost like you. We are so similar (minus my neuroblastoma lol)! I have found some people on Facebook groups that have similar health issues like me... but I think you're pretty close to my current condition. My twin!

    I too have a harrington rod but I never wore a brace. I think because I was dx really quickly and then had my surgery within the month. Prior to surgery I was put in a sketcher bed, I don't recall the medical term for it.. but basically they put screws in your temple and knee with weights on each ends in hope to stretch out your body. i had to remain in 1 position for almost a week. not happy times!

    I will need to take a photo of my xray next time I visit the doctor!! Not a pretty sight! hahaha.

  3. My life is barely that exciting. I am mostly home these days with not much to do or look forward too. I try to be active by going out for my Starbucks, working on PH group stuff, maybe some knitting, TV. That's about it. My life is so boring now. :(

    I have been using the bipap since I was dx with kyposciolois at age 15. The bipap machines have changed a lot over the years, now they are much smaller and quieter! I actually can not sleep anymore without it so it is essential. I used to be able to take naps without it when I would wake up with headaches ( this was about 5 years ago). In Nov 2012 my c02 was 47, whereas normal range is 35-45. Mine has always been in the high 50s range so I was really glad to hear its has gotten down. My FEV1 is also about ~15%.

    My bi-pap pressure are quite high at 20/5. What are yours? I can't not sleep without it! I used to be so insecure with it but now I just don't care!!

  4. Your life sounds so exciting, minus the trip to the hospital in March! You are so active. I'm really impressed! You posted on my bravejournal site but I've since moved my blog to wordpress. Do you like the bipap? Are you still on it or was that just in the hospital?

    Christine -


Thank you.