Holly's Brain Blog and Beyond
My brain tumor diary and the years beyond
Thursday, March 12, 2015
I am having trouble sleeping tonight. So much stress and anxiety about my upcoming surgery making me so sick tonight. It's a worry I have before all my surgeries....what if I don't wake up?? I'm told I shouldn't worry but I truly cannot stop. Thanks for everyone for donating. If you can't donate please share my story. Send me sleepy thoughts as well.
Monday, March 9, 2015
An Update
Hi Friends and Family!
It's been awhile since I wrote on my dear ol' blog, but some new medical problems have come up again and I want to tell you all what's new.
As some as you know, I was diagnosed with avascular necrosis (AVN) in January 2013. This terrible diagnosis is due to the fact that I was on an extended treatment of high-dose steroids after my brain tumor and staph infection that followed.
I started having terrible hip pain in July of 2012. I thought it was because I started to be more active and figured it was a pulled muscle or pinched nerve. I had an MRI arthrogram and was told I had AVN. I found a great orthopedic surgeon and he recommended that I have a surgery called core decompression of the femoral head.
Core decompression of the hip is usually employed before collapse and fracture of the femoral head to delay or avoid reconstructive surgery of the affected joint. It is generally carried out to preserve the function and the structure of the hip, as well as to relieve pain associated with AVN.
So the surgery was not entirely successful. (In hindsight, it was a complete failure). I was still in a lot of pain most of the time, but I was told I could wait until I was 40 to have a total hip replacement. Fast forward two years and the pain in my hip is downright excruciating. I got another MRI arthrogram and the results were not good, my hip had rapidly deteriorated and was near collapse. A total hip replacement, the three surgeons have told me, is now the only answer.
I have a great job at a local pharmacy. I work 4 10- 11-hour shifts a week. It's not easy to be on my feet all day but this job is amazing. It's fun and challenging and exactly what I love to do. I have only been working there for seven months so I do not qualify for FMLA or paid time off.
I need approximately 10 weeks off to recuperate and get strong. I have insurance but that will only cover part of the actual surgery, because once I stop working, I only have a couple of weeks of coverage before I'm dropped from the plan. Then I'm out of luck. I hope the Affordable Healthcare Act will help fill in the gaps until I can return to work, but the co-pays, followups, prescriptions, medical equipment (walker, crutches, etc.) and mostly sudden lack of income are what have really been keeping me up at night.
As some of you might know, my past medical complications makes this surgery not only scary and dangerous, but also more expensive than for most. Since I have Acute Respiratory Distress Syndrome (ARDS), I've had to see my pulmonologist to get cleared for surgery, and will have to pay for her services while in the hospital. I'm also likely to stay in the hospital for much longer than others, who could possibly go home the very next day.
Every doctor bill is going add up to quite a lot of money. We will be living off of Bryon's income for that time. And while he loves his job, newspapers don't pay like Wall Street does.
I have had experience with huge hospital bills with my brain tumor and staph infection and as a result had to file for medical bankruptcy several years ago. I was young and single and didn't have health insurance. I didn't have much options because I needed emergency surgery to remove the tumor. I don't want to have to go down that road again.
I am hoping to get a little help from my friends. In addition to drastically cutting expenses and using what little we've been able to save over the past couple of months, I am starting a Go Fund Me account in hopes of paying all the upcoming bills, as well as all the bills from multiple MRI's, doctors visits and medication that I have incurred in the last few months getting ready for my hip surgery. I know this is asking a lot. I know I have amazing friends and family and I know that the kindness of strangers can change the world.
Today I had an MRI of my shoulder because I had surgery to repair slap tears two years ago, (believed to be related to nerve damage after falling from tumor-related incident) and I think I have re-injured my shoulder.) It hurts a lot. As I lied in the coffin that is an MRI machine, I struggled and cried and they were finally able to coax me in. My mind wandered and I started feeling really bad for myself.
I cried for myself, for my husband, for my family. I have been a difficult patient at times. I thought about what I had missed out of because of all this crap. All the times I couldn't get out of bed, couldn't be released from the hospital even though my boyfriend (now husband) Bryon had 2nd row tickets to our favorite band Pearl Jam. He even organized a fundraiser for the Wishlist Foundation and raised more than $1,600 to donate to charities the band supports.
I thought about the baby I will probably never have and the sacrifices Bryon has had to make.I know this is my trial in life. I believe in science and I believe in luck. I have not been lucky, but science has saved my life. If it weren't for the hardworking doctors, nurses and staff at Intermountain Medical Center, I wouldn't be here. If Bryon hadn't carried me to the ER on Sept. 15, 2009 — I would have died.
This time around, I just hope there are no complications and I can spend my recovery time without too much pain.
It's been awhile since I wrote on my dear ol' blog, but some new medical problems have come up again and I want to tell you all what's new.
As some as you know, I was diagnosed with avascular necrosis (AVN) in January 2013. This terrible diagnosis is due to the fact that I was on an extended treatment of high-dose steroids after my brain tumor and staph infection that followed.
I started having terrible hip pain in July of 2012. I thought it was because I started to be more active and figured it was a pulled muscle or pinched nerve. I had an MRI arthrogram and was told I had AVN. I found a great orthopedic surgeon and he recommended that I have a surgery called core decompression of the femoral head.
Core decompression of the hip is usually employed before collapse and fracture of the femoral head to delay or avoid reconstructive surgery of the affected joint. It is generally carried out to preserve the function and the structure of the hip, as well as to relieve pain associated with AVN.
So the surgery was not entirely successful. (In hindsight, it was a complete failure). I was still in a lot of pain most of the time, but I was told I could wait until I was 40 to have a total hip replacement. Fast forward two years and the pain in my hip is downright excruciating. I got another MRI arthrogram and the results were not good, my hip had rapidly deteriorated and was near collapse. A total hip replacement, the three surgeons have told me, is now the only answer.
I have a great job at a local pharmacy. I work 4 10- 11-hour shifts a week. It's not easy to be on my feet all day but this job is amazing. It's fun and challenging and exactly what I love to do. I have only been working there for seven months so I do not qualify for FMLA or paid time off.
I need approximately 10 weeks off to recuperate and get strong. I have insurance but that will only cover part of the actual surgery, because once I stop working, I only have a couple of weeks of coverage before I'm dropped from the plan. Then I'm out of luck. I hope the Affordable Healthcare Act will help fill in the gaps until I can return to work, but the co-pays, followups, prescriptions, medical equipment (walker, crutches, etc.) and mostly sudden lack of income are what have really been keeping me up at night.
As some of you might know, my past medical complications makes this surgery not only scary and dangerous, but also more expensive than for most. Since I have Acute Respiratory Distress Syndrome (ARDS), I've had to see my pulmonologist to get cleared for surgery, and will have to pay for her services while in the hospital. I'm also likely to stay in the hospital for much longer than others, who could possibly go home the very next day.
Every doctor bill is going add up to quite a lot of money. We will be living off of Bryon's income for that time. And while he loves his job, newspapers don't pay like Wall Street does.
I have had experience with huge hospital bills with my brain tumor and staph infection and as a result had to file for medical bankruptcy several years ago. I was young and single and didn't have health insurance. I didn't have much options because I needed emergency surgery to remove the tumor. I don't want to have to go down that road again.
I am hoping to get a little help from my friends. In addition to drastically cutting expenses and using what little we've been able to save over the past couple of months, I am starting a Go Fund Me account in hopes of paying all the upcoming bills, as well as all the bills from multiple MRI's, doctors visits and medication that I have incurred in the last few months getting ready for my hip surgery. I know this is asking a lot. I know I have amazing friends and family and I know that the kindness of strangers can change the world.
Today I had an MRI of my shoulder because I had surgery to repair slap tears two years ago, (believed to be related to nerve damage after falling from tumor-related incident) and I think I have re-injured my shoulder.) It hurts a lot. As I lied in the coffin that is an MRI machine, I struggled and cried and they were finally able to coax me in. My mind wandered and I started feeling really bad for myself.
I cried for myself, for my husband, for my family. I have been a difficult patient at times. I thought about what I had missed out of because of all this crap. All the times I couldn't get out of bed, couldn't be released from the hospital even though my boyfriend (now husband) Bryon had 2nd row tickets to our favorite band Pearl Jam. He even organized a fundraiser for the Wishlist Foundation and raised more than $1,600 to donate to charities the band supports.
I thought about the baby I will probably never have and the sacrifices Bryon has had to make.I know this is my trial in life. I believe in science and I believe in luck. I have not been lucky, but science has saved my life. If it weren't for the hardworking doctors, nurses and staff at Intermountain Medical Center, I wouldn't be here. If Bryon hadn't carried me to the ER on Sept. 15, 2009 — I would have died.
This time around, I just hope there are no complications and I can spend my recovery time without too much pain.
Wednesday, October 10, 2012
Hawaii so Far
It's super hard to write on vacation just sayin.
I have found out some very interesting things while in Hawaii:
A: The ocean is really salty, like unbelievably so
B. If I use a fake accent on an elevator just for fun I will be asked if the weather in Australia is nice this time of year and I will be unable to answer correctly.
C. Kava is freaking disgusting and has no effect on me
D. You will get sand in your nether regions if you sit in the sand
E. Always pack more than you think you should
G. Turning 30 in Hawaii is much better then turning 30 in Utah
H. Turns out I am even less photogenic than I thought
I. Tropical vacations are the best vacations!
Also my husband is a hero and saved a group of Japanese ladies who spoke no English from certain death! They were drifting off to sea and Bryon towed them back in. He kept giving them a thumbs up to keep them calm.
So tomorrow we are gonna hit up the swap meet, swing by some sweet beaches and then go to a Luau for my birthday. I know it will be an amazing day!
I have found out some very interesting things while in Hawaii:
A: The ocean is really salty, like unbelievably so
B. If I use a fake accent on an elevator just for fun I will be asked if the weather in Australia is nice this time of year and I will be unable to answer correctly.
C. Kava is freaking disgusting and has no effect on me
D. You will get sand in your nether regions if you sit in the sand
E. Always pack more than you think you should
G. Turning 30 in Hawaii is much better then turning 30 in Utah
H. Turns out I am even less photogenic than I thought
I. Tropical vacations are the best vacations!
Also my husband is a hero and saved a group of Japanese ladies who spoke no English from certain death! They were drifting off to sea and Bryon towed them back in. He kept giving them a thumbs up to keep them calm.
So tomorrow we are gonna hit up the swap meet, swing by some sweet beaches and then go to a Luau for my birthday. I know it will be an amazing day!
Sunday, October 7, 2012
You and Me in Waikiki
We started the great 2012 Hawaiian adventure on Friday @ 2:30 pm when Bryon picked me up from MCG. It was hard to say goodbye since I will be off for 1 whole week!
We headed straight to Jazzie's to look at her suitcases for a carry on if we needed it. We were very worried that our suitcases would be too heavy and we would be hit with huge extra charges. We got to see our 2 favorite boys Ayden & Myles and their perfect Mom Jasmine. Those Sorensen's make cute babies. Jazzy also lent me a super pretty beach wrap. I wanted to take all 3 of them with us!
We were on the road to St. George by 3:17 pm and we were very pumped. We love long drives together. (most of the time :)) I was feeling like I needed a smallish nap so I drifted off to sleep while we listened to This America Life.
We made it to St. George in record time because Bryon is a pro driver. St. George is one of our favorite places to go because we get to stay at G&G Colby's cute house. We made it in without seeing off the alarm which is a big deal as I am pretty sure I have set if off twice. (sorry Grandma!!)
We got settled and ordered a pizza and watched 30 Rock. We found a scaled and weighed our suitcases and they were both underweight, thank you universe! Bryon went to bed around 9:40 but I had so much anxiety + a little steroids in the system (I am old and have a bad hip) so I read for a bit and got to bed before midnight.
We were up at 3:15am and realized I had forgotten to pack my deodorant!! Craps! We cleaned up, locked up and headed out the door. We had a nice drive to Vegas and played a little would you rather.. barfing toddler next to you or screaming baby? Seated between Lohan and Paris or Mitt and Michael Fassbender. Of course I chose the second option. I love Mitt's hair and I love Fassbenders everything else.
We failed to get a spot at the cheap park and ride and we both had to pee so we hauled butt to long term parking. We got a little confused at the airport and couldn't find the ticket counter but after asking a Starbucks lady we got pointed in the right direction. Security was a breeze.
The wait for the flight was relaxing and we boarded the plane in peace. I also had a semi large dose of Xanax helping me along. Upon finding our seats we realized the Glath was WAY too tall for the puny seats. Poor guy! He was able to get moved to an exit row at the frontish part of the plane. My short legs got stuck in the back with strangers. I missed Bryon so much. I took another Xanax, put in my ipod and relaxed, even drifted to sleep for a bit. When I woke I decided it was time for a us to be in Hawaii but the pilot came on announced 3 more hours!!!
When we finally touched down and found each other it was very sweet and magically (lol) We bee lined it to baggage claim and then to the shuttle.
The last time I was in Hawaii we stayed at my Grandparents condo and it was so cool to see it again! The Koi pond full of huge fish were still here! The room is beautiful and the view is breathtaking! We unpacked and headed to Waikiki beach to take a look and get some dinner. We went to ABC and got some beverages and nuts. ABC stores are EVERYWHERE!!
We found great burger/bar place called Cheeseburger in Paradise and got dinner to go. I had the most amazing, unique meal called Loco Moco which is rice, hamburger patty, tons of brown gravy and onions with 2 eggs on top! I loved it I want to eat it for every meal!
I basically passed out on the couch at 9 and Bryon soon followed. So glad to be here with my amazing husband, he is so good to me especially when I get anxious or frustrated he knows how to talk me down.
Please enjoy these pics from our 1st Full day in Hawaii. I will get on post the excitement of Day 2 which includes salty salt lick ocean, 14 visits to the ABC store, sunburns and the time change. xoxoHVG
We headed straight to Jazzie's to look at her suitcases for a carry on if we needed it. We were very worried that our suitcases would be too heavy and we would be hit with huge extra charges. We got to see our 2 favorite boys Ayden & Myles and their perfect Mom Jasmine. Those Sorensen's make cute babies. Jazzy also lent me a super pretty beach wrap. I wanted to take all 3 of them with us!
We were on the road to St. George by 3:17 pm and we were very pumped. We love long drives together. (most of the time :)) I was feeling like I needed a smallish nap so I drifted off to sleep while we listened to This America Life.
We made it to St. George in record time because Bryon is a pro driver. St. George is one of our favorite places to go because we get to stay at G&G Colby's cute house. We made it in without seeing off the alarm which is a big deal as I am pretty sure I have set if off twice. (sorry Grandma!!)
We got settled and ordered a pizza and watched 30 Rock. We found a scaled and weighed our suitcases and they were both underweight, thank you universe! Bryon went to bed around 9:40 but I had so much anxiety + a little steroids in the system (I am old and have a bad hip) so I read for a bit and got to bed before midnight.
We were up at 3:15am and realized I had forgotten to pack my deodorant!! Craps! We cleaned up, locked up and headed out the door. We had a nice drive to Vegas and played a little would you rather.. barfing toddler next to you or screaming baby? Seated between Lohan and Paris or Mitt and Michael Fassbender. Of course I chose the second option. I love Mitt's hair and I love Fassbenders everything else.
We failed to get a spot at the cheap park and ride and we both had to pee so we hauled butt to long term parking. We got a little confused at the airport and couldn't find the ticket counter but after asking a Starbucks lady we got pointed in the right direction. Security was a breeze.
The wait for the flight was relaxing and we boarded the plane in peace. I also had a semi large dose of Xanax helping me along. Upon finding our seats we realized the Glath was WAY too tall for the puny seats. Poor guy! He was able to get moved to an exit row at the frontish part of the plane. My short legs got stuck in the back with strangers. I missed Bryon so much. I took another Xanax, put in my ipod and relaxed, even drifted to sleep for a bit. When I woke I decided it was time for a us to be in Hawaii but the pilot came on announced 3 more hours!!!
When we finally touched down and found each other it was very sweet and magically (lol) We bee lined it to baggage claim and then to the shuttle.
The last time I was in Hawaii we stayed at my Grandparents condo and it was so cool to see it again! The Koi pond full of huge fish were still here! The room is beautiful and the view is breathtaking! We unpacked and headed to Waikiki beach to take a look and get some dinner. We went to ABC and got some beverages and nuts. ABC stores are EVERYWHERE!!
We found great burger/bar place called Cheeseburger in Paradise and got dinner to go. I had the most amazing, unique meal called Loco Moco which is rice, hamburger patty, tons of brown gravy and onions with 2 eggs on top! I loved it I want to eat it for every meal!
I basically passed out on the couch at 9 and Bryon soon followed. So glad to be here with my amazing husband, he is so good to me especially when I get anxious or frustrated he knows how to talk me down.
Please enjoy these pics from our 1st Full day in Hawaii. I will get on post the excitement of Day 2 which includes salty salt lick ocean, 14 visits to the ABC store, sunburns and the time change. xoxoHVG
Sunday, September 16, 2012
Sunday, August 12, 2012
Sunday, July 29, 2012
Wednesday, July 25, 2012
Tuesday, May 8, 2012
My Grandpa Gus was born 100 years ago....
today. I miss him everyday. This is one of his favorite poems and mine as well.
The West Wind by John Masefield
It's a warm wind, the west wind, full of birds' cries;
I never hear the west wind but tears are in my eyes.
For it comes from the west lands, the old brown hills.
And April's in the west wind, and daffodils.
It's a fine land, the west land, for hearts as tired as mine,
Apple orchards blossom there, and the air's like wine.
There is cool green grass there, where men may lie at rest,
And the thrushes are in song there, fluting from the nest.
"Will ye not come home brother? ye have been long away,
It's April, and blossom time, and white is the may;
And bright is the sun brother, and warm is the rain,--
Will ye not come home, brother, home to us again?
"The young corn is green, brother, where the rabbits run.
It's blue sky, and white clouds, and warm rain and sun.
It's song to a man's soul, brother, fire to a man's brain,
To hear the wild bees and see the merry spring again.
"Larks are singing in the west, brother, above the green wheat,
So will ye not come home, brother, and rest your tired feet?
I've a balm for bruised hearts, brother, sleep for aching eyes,"
Says the warm wind, the west wind, full of birds' cries.
It's the white road westwards is the road I must tread
To the green grass, the cool grass, and rest for heart and head,
To the violets, and the warm hearts, and the thrushes' song,
In the fine land, the west land, the land where I belong.
I never hear the west wind but tears are in my eyes.
For it comes from the west lands, the old brown hills.
And April's in the west wind, and daffodils.
It's a fine land, the west land, for hearts as tired as mine,
Apple orchards blossom there, and the air's like wine.
There is cool green grass there, where men may lie at rest,
And the thrushes are in song there, fluting from the nest.
"Will ye not come home brother? ye have been long away,
It's April, and blossom time, and white is the may;
And bright is the sun brother, and warm is the rain,--
Will ye not come home, brother, home to us again?
"The young corn is green, brother, where the rabbits run.
It's blue sky, and white clouds, and warm rain and sun.
It's song to a man's soul, brother, fire to a man's brain,
To hear the wild bees and see the merry spring again.
"Larks are singing in the west, brother, above the green wheat,
So will ye not come home, brother, and rest your tired feet?
I've a balm for bruised hearts, brother, sleep for aching eyes,"
Says the warm wind, the west wind, full of birds' cries.
It's the white road westwards is the road I must tread
To the green grass, the cool grass, and rest for heart and head,
To the violets, and the warm hearts, and the thrushes' song,
In the fine land, the west land, the land where I belong.
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