My Break From Chaos:
I know my life isn't as chaotic as some people's lives; But lately, it's one thing after another. To fully understand the clinical trial, weight & Gi issues, and the potassium scare make sure to read my last post HERE. But, finally some GOOD NEWS: the re-do test I got drawn at the local hospital for my potassium came back in the normal-ish range. Which means that it WAS a fluke and some of the red blood cells did rupture when they drew it in the office. So yay, good news!
The only bad part of it came later when Doc's office called, the clinical trial researchers won't accept the local hospital's sample. So I have to do the test a third time and on Andrew's day off tomorrow we will be spending the day driving 2 hours one way to get one blood test done at doc's office and then driving home.... I'm a lil annoyed. Seriously, why didn't they figure this out before I spent a whole day calling & registering at the new hospital, sitting there waiting, and getting my blood drawn (We only had one working car that week too, so I had to drop & pick up Andrew). Plus, with the insurance problems I'm having lately, I'm sure I will get a bill for the hospital's test.
So needless to say the last few days have been a little hectic and annoying, but I'm soooo happy to know my potassium isn't crazy high. whew... and the chaos is worth it to do clinical trials and I hope it helps out the CF population in the future.When I get too stressed out we go for a walk around the lake by our place, or go for a drive and just chat. Anyone who knows me KNOWs I love to chat & can gab anyone's ear off.. Andrew can usually tell when everything is bothering me. :-)
We are also working hard on helping me to gain weight back with the diet I have to stay on ( by the way it's permanent, I guess people though it was a one time thing). Read more about the Diet here. We invented a 850 some calorie frosty knockoff (from Wendy's) using low-fat and non-lactose products. It's hard keeping weight on, when I can't have meat, dairy, high fat or high fiber foods, raw veggies, or anything cooked with butter, creams, or is fried. So we were pretty proud we made this drink... (see pic on right)
So hopefully, my next appointment in a week and a half will show a bit of an increase in weight & lungs :-)
AND
Yesterday, Andrew got to meet a few more family members ( he's been to 3 events on my dad's side, but still hasn't met all the cousins...haha). Driving home last night, he goes "So have met everyone now..." I was like " Haha, no I still have 15-20 cousins you haven't met yet (and that's just dad's side)." We really wanted to go home and see everyone (esp. my grandparents). Plus, I found out my cousin, Lenny was home for a few days. I haven't seen him in almost 7 years, last night I got to meet his wife, Sara and their new child. Plus, my Aunt Linda was home too (his mom). They have lived overseas all my life, mostly for my Uncle's work in Africa, South America, India, Egypt, and now Liberia. My cousin & his wife work for the Summer Olympics & move quite often too.So I didn't want to miss a chance to see them before they all flew back.
It was really nice, having a family get-together and quite a few family members were able to come for it too. It's a big summer for my dad's side. I'm one of 4 cousins that are/did get married this year! All within a short amount of time. So I'm sure by the end of the summer Andrew will have met the majority of the cousins (except the 8 that live out of state/overseas). I was able to take my mind off all the medical tests, and trials, and chaos for the night and just have a good time. It was really nice to see my immediate family too.
Ada has been busy working on wedding stuff for me (shower, etc). Mom is been really kick-a** at helping out with the Great Strides Walk. I'm super excited about all the raffles too!
If you have a raffle please drop it off to me in the next few weeks. Watch for more updates on my CF Facebook page!
So thanks to my amazing family for all their help with my bit chaotic summer.
Today, I've had to do lots of calling around to get my cayston switched to a new company, since my pharmacy doesn't dispense it anymore. Plus, I'm still trying to get Medicaid to update my info for my insurance, and I'm trying to get a few of my meds refilled, despite my insurance problems. Tomorrow, I drive back to northern Chicago area for Doc's blood test (again). Andrew's SUV is finally getting fixed tomorrow, while we are gone. AND I'm very much looking forward to Friday. Friday-Monday I don't have any medical tests, appointments, or calls I need to make (so far). A 4 day stretch is the longest I have gone in a least a month or two without having to deal with something medical.
It will feel like a mini -stay-cation :-)
So cheers to my coming up weekend & yours!
I know my life isn't as chaotic as some people's lives; But lately, it's one thing after another. To fully understand the clinical trial, weight & Gi issues, and the potassium scare make sure to read my last post HERE. But, finally some GOOD NEWS: the re-do test I got drawn at the local hospital for my potassium came back in the normal-ish range. Which means that it WAS a fluke and some of the red blood cells did rupture when they drew it in the office. So yay, good news!
The only bad part of it came later when Doc's office called, the clinical trial researchers won't accept the local hospital's sample. So I have to do the test a third time and on Andrew's day off tomorrow we will be spending the day driving 2 hours one way to get one blood test done at doc's office and then driving home.... I'm a lil annoyed. Seriously, why didn't they figure this out before I spent a whole day calling & registering at the new hospital, sitting there waiting, and getting my blood drawn (We only had one working car that week too, so I had to drop & pick up Andrew). Plus, with the insurance problems I'm having lately, I'm sure I will get a bill for the hospital's test.
We are also working hard on helping me to gain weight back with the diet I have to stay on ( by the way it's permanent, I guess people though it was a one time thing). Read more about the Diet here. We invented a 850 some calorie frosty knockoff (from Wendy's) using low-fat and non-lactose products. It's hard keeping weight on, when I can't have meat, dairy, high fat or high fiber foods, raw veggies, or anything cooked with butter, creams, or is fried. So we were pretty proud we made this drink... (see pic on right) So hopefully, my next appointment in a week and a half will show a bit of an increase in weight & lungs :-)
AND
Yesterday, Andrew got to meet a few more family members ( he's been to 3 events on my dad's side, but still hasn't met all the cousins...haha). Driving home last night, he goes "So have met everyone now..." I was like " Haha, no I still have 15-20 cousins you haven't met yet (and that's just dad's side)." We really wanted to go home and see everyone (esp. my grandparents). Plus, I found out my cousin, Lenny was home for a few days. I haven't seen him in almost 7 years, last night I got to meet his wife, Sara and their new child. Plus, my Aunt Linda was home too (his mom). They have lived overseas all my life, mostly for my Uncle's work in Africa, South America, India, Egypt, and now Liberia. My cousin & his wife work for the Summer Olympics & move quite often too.So I didn't want to miss a chance to see them before they all flew back.
It was really nice, having a family get-together and quite a few family members were able to come for it too. It's a big summer for my dad's side. I'm one of 4 cousins that are/did get married this year! All within a short amount of time. So I'm sure by the end of the summer Andrew will have met the majority of the cousins (except the 8 that live out of state/overseas). I was able to take my mind off all the medical tests, and trials, and chaos for the night and just have a good time. It was really nice to see my immediate family too.Ada has been busy working on wedding stuff for me (shower, etc). Mom is been really kick-a** at helping out with the Great Strides Walk. I'm super excited about all the raffles too!
If you have a raffle please drop it off to me in the next few weeks. Watch for more updates on my CF Facebook page!
So thanks to my amazing family for all their help with my bit chaotic summer.
Today, I've had to do lots of calling around to get my cayston switched to a new company, since my pharmacy doesn't dispense it anymore. Plus, I'm still trying to get Medicaid to update my info for my insurance, and I'm trying to get a few of my meds refilled, despite my insurance problems. Tomorrow, I drive back to northern Chicago area for Doc's blood test (again). Andrew's SUV is finally getting fixed tomorrow, while we are gone. AND I'm very much looking forward to Friday. Friday-Monday I don't have any medical tests, appointments, or calls I need to make (so far). A 4 day stretch is the longest I have gone in a least a month or two without having to deal with something medical.
It will feel like a mini -stay-cation :-)
So cheers to my coming up weekend & yours!
Cheriz, I enjoy following your blog - I found you on twitter! I am a pharmacist in Texas and work for a pharmacy that is one of three pharmacies that provide Cayston - I would love to help you out in getting your Cayston transferred and taking care of all of your CF needs!! Please let me know if we can assist you in any way! I have enjoyed your blog and I learn so much from you about living with CF that is such great information for me to know as we help other patients with CF through our pharmacy and other programs!!
ReplyDeleteThanks! I'm glad you like reading about Life w/CF. I love twitter, I've met lots of people w/ CF or some attachment to it there. My Cayston got switched over pretty fast. Whew. Walgreens just took over the accounts at my old pharmacy. Which is nice for me, considering I get all my other meds from Walgreens. But thanks. and thanks for reading my blog. :-)
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