I Will Take Care Of You

I was born April 5, 1986. A genetic disease by the name of Tuberous Sclerosis came with me that day and has stayed with me since. My parents had the gene and that gene passed on to me and my 32-year-old brother, Ashley. 

Tuberous Sclerosis is a disease that leave benign tumors in the brain, eyes, heart, kidneys, bones and skin of the individual. My brother got the severity in the brain where he has struggled with reasoning more than I have but we have both lived a normal, happy  and healthy life. When I was six months old I had seizures until the doctors prescribed shots, which eliminated the seizures for life. 

Throughout my adolescence MRIs, check ups and ultrasounds were a regular procedure to keep up on the activity in those organs. Through those years no change has ever been made and reported. If anything ever did happen we were told surgery would proceed. With the fact  that the tumors are non-malignant and not cancerous, worrying hasn't been in our minds. 

On November 19, 2013, I was snowboarding on my day off at Brian Head Resort when I wrecked, lacerated my kidney and bruised my left lung. The doctors decided because of the tumors in my kidney and  abnormalities, surgery and taking the kidney out was not an option they wanted to choose. Since my discharge from the hospital, I have met with my nephrologist in St. George twice.

The condition— Tuberous Sclerosis— isn't something doctors really know much about. It is a rare disease. I have had many experiences where doctors think they know how to handle things and they don't really have a clue.  I have lived with the disease my whole life and all they have done is research. 

Before I went on my mission I went to a doctor I had never been to before, I was there to get a recommendation to remove my tonsils because I had severe tonsillitis that only increased year after year. The solution was to remove them, but this doctor barley looked or considered what I was there for. Instead he looked at me and said "So what do you do for your acne?" I said, "It's not acne. I have Tuberous Sclerosis." He said, "You know you can get those removed with lazer surgery?" It really frustrated me and I told him so.. Here I was getting sick from my tonsils and he brings up something that is not causing me to get sick, something that already had been a self-esteem killer for many years.. There were many days I thought I was not beautiful because my complexion isn't like other girls, but I know that is a lie. I am beautiful! It also made me upset because here I was going to college at the time and money toward that was more important than improving my looks. The other thing is that if you remove the skin tags and spots that Tuberous Sclerosis creates on the skin doesn't mean they will stay away. I have heard they do come back eventually. 

The only doctor I've known who KNEW much of what my disease was really about was my pediatric neurologist at the University of Utah. 

With that said, my new nephrologist still scared me when he DOESN'T know much of anything about my condition except through minimal research. The week before last I was so excited to return to his office and find out how my tests went because previously I was told that my kidneys were only functioning half as much as they should be. In the time between the first appointment and second appointment my nephrologist wanted to find out if the lack of function was present before the accident because of the kidney disease. 

However, when he walked in the room he started going off about how the FDA had approved a pill in 2013 that is to help and possibly cure those with kidney cancer. He went off on how it could help shrink the tumors in my kidneys. He said I have one tumor that is seven millimeters long. He said there is a possibility that when I wrecked may have burst one tumor and started bleeding. The problem with this pill is that it may decrease the size of my tumors in my kidneys, but then comes the side effects of possible other cancers, sores in the mouth and if I ever want to have children there could be birth defects in the fetus. 

As he started telling me all this I started getting scared. Feeling as though he was telling me I could die or that my life could be over, that my kidneys were really failing. I was so scared for my future. The doctor could see it. What he didn't understand though was that I have lived with this my whole life, I've ran track, cross country, snowboarded, hiked and trained for 10-mile races with no issues. 

At the time I was getting scared I felt the spirit stronger that I've felt it in a long time and I heard "Did I not tell you I would take care of you? I will take care of you." I was reminded of a blessing given by my mission president in April and remembering that I was told Heavenly Father would take care of me. If he wanted to take me out of this life he would have during the accident as I lost all the blood, but he didn't! He allowed me to survive and to live. I am not afraid of death. If my disease hasn't killed me by now why would it in the next 30 years or more? Why would I trust to take a pill that could cause more harm that do any good? Why would I take it when the doctor who recommended it had never given it to another patient and didn't really know much about it himself? I know as Heavenly Father has taken care of me through my whole healing process he will take care of me the rest of my life. As the Hymn "Come Listen To A Prophet's Voice" says "Tis not in man they put their trust nor on his arm rely.." I will not rely on man, but I will rely on my God for he knows the path of truth and righteousness.

Thankfully, after the whole spill about this pill, he did tell me that my kidney function had gotten better, that I still lacked the Vitamin D I needed and my parathyroid wasn't functioning well as it should as a result, also my blood count has gone up to 37 and a half now 38 or more.. I was given a recommendation to the Vitamin D supplements, a MRI was ordered for June on my kidneys to see if there has been any change since my last MRI in 2007. I am to get an MRI every 6 months and an ultrasound on them every year just to monitor it. 

I know that I can go on and keep working to become the best that I can be. I am not allowed to snowboard or do contact sports but I can do much more! Today was the best day on the mountain! I reached 98 on my oxygen saturation and my energy is getting up! That's better than ANYONE else on the mountain (even Ski Patrol!!) Can't wait to work out and get back up! 

I am so blessed. I will not give up. I will live my life and live it to the best of my ability. I feel great! The doctors get scared when they see what I'm dealing with and want to fix it but with the help of God I can live a normal life! 

Thank you again to all for love and prayers everyone!

Forever Unstoppable

Life isn't easy. It's not something that comes without LOTS of patience. I've found this out in more ways than one. Both in my healing process and otherwise, but I'm not giving up!! I feel like a new person since my accident as I mentioned in my last blog. I feel like I am taking life much more seriously now, but that still makes it a trying time.

I had to get TONS of blood drawn today for testing for the next time I meet with my nephrologist next week. It sure is sad to get close to not being anemic and then they take blood from you again, but I will get better eventually right?

I named this blog "Forever Ustoppable" because I am fighting some battles, but I am "Forever Unstoppable." There is a song and here are the lyrics and the song you can listen to it. I take what he is saying and put it as a reference of me and my savior or Heavenly Father. When I have him I am "Forever Unstoppable." We all can be that way. Hope you enjoy it!

Forever unstoppable
Forever, forever, forever unstoppable

Falling stars don't crash through your window
If you want it, go get it, it's meant to be chased
All your scars won't heal till you let go
You're perfectly worth it, forget your mistakes
If you wanna fly, leave this world with me
We'll touch the sky, let's defy this gravity
Hold on to me tight, when it all falls down

You can take my heart, if yours won't beat
We're forever unstoppable
If you're torn apart, I'll make you see
That nothing's impossible
When you're broken, and you're shattered
Love will save you from disaster
You can take my heart, if yours won't beat
We're forever, forever, forever unstoppable

Yeah we've both been touched by the same flame
Don't worry, I've got you, I won't let you burn
You and I got played by the same game
We're in it, together, for better or worse
If you wanna fly, leave this world with me
We'll touch the sky, let's defy this gravity
Hold on to me tight, when it all falls down

You can take my heart, if yours won't beat
We're forever unstoppable
If you're torn apart, I'll make you see
That nothing's impossible
When you're broken, and you're shattered
Love will save you from disaster
You can take my heart, if yours won't beat
We're forever, forever, forever unstoppable

There's a feeling inside you,
Just dying to break through,
Open up and set it free
We're on a horizon
Just look in my eyes and you will see

When you're broken, and you're shattered
Love will save you from disaster
You can take my heart, if yours won't beat
We're forever unstoppable

If you're torn apart, I'll make you see
That nothing's impossible

When you're broken, and you're shattered
Love will save you from disaster
You can take my heart, if yours won't beat
We're forever, forever, forever unstoppable
We're forever, forever, forever unstoppable
We're forever, forever, forever unstoppable
Forever unstoppable
Forever unstoppable
Forever unstoppable
Forever unstoppable

A New Year And A New Beginning

 This last week I moved back to Cedar City and I went back to work up at Brian Head Resort. Because I am still healing and the doctors fear for me to get Hypoxia (low oxygen/ altitude sickness) I can only work at the base area and do light duty. I am not allowed to snowboard the rest of the season altho I don't want to especially when I'm concerned about my healing and I don't want to risk getting hurt again. So what I do is just check passes and visit with people, which I enjoy anyway especially when I'm on the bunny hill seeing the kids and my lovely friends—the ski/snowboard instructors!

My oxygen levels are still a bit lower up there ranging from 88 to 93 most often, but I'm still taking my iron and doing my breathing in my spirometer. Hoping of course it gets better.. Today was my third day working straight in a row and I've never been more tired. Going to make sure I get plenty of rest tonight  and tell myself to take it easy if I need to. I'm just happy to be back at work and my day was made today when my friend, Tate (an instructor) said "Holly I'm so glad you're back. We were all so worried about you. You're family." This is why I like working up there. The best people ever! I don't even care that I can't snowboard and go work the other positions. Checking passes and talking to people is the best time ever! It has been wonderful to hear people say they are glad I am back! I am too... Obviously ;)

Aside from work, which is now keeping me busy pretty much everyday (Monday-Friday). I have been spending time with my roommate, Marita. Its been fun being with her. She doesn't have much of anyone besides her boyfriend and it has been fun to have someone to see and talk to everyday. I do miss home, especially time with my mom and her home cooked meals, but having two great roommates has been the best for me coming back. 

I have made some changes through the time I had my accident. It did take awhile for my appetite to come back, since I was starved for two days in the hospital, I was on narcotics for quite some time and I haven't been real strong over the last month, but as it has grown I have only had the cravings for more healthy foods. I do still like my sweets but its not as high of craving as it used to be. I was told to stay hydrated so aside from a glass of orange juice in the morning and maybe one glass of milk I am drinking almost 100 ounces of water per day. It has been great to me to want to eat an apple, grapes, strawberries and veggies instead of a cookie or even a burrito or anything really processed. I know I need to take care of my body and I like the change. I definitely feel better doing so. 

In addition to the healthy eating, much of my other priorities have changed and my future is coming into place. I got my resolutions before the new year. It's strange but true that the accident changed me as a person. I do feel brand new. I feel brand new in my diet, I feel brand new in my goals and desires for the future. My desire for my relationship with my Savior and Heavenly Father has grown and I want it to get better. He has helped  me so much. I could have honestly died the day I wrecked. It was a very serious accident, but for some reason God wants me here. I know he has a plan for me and for that I know I CANNOT let him down. He left me here and so I must take care of myself and be the best HE KNOWS I CAN BE!! I am learning patience and humility in my healing. I look forward to strength and improvement in the church.. I will serve him with all my heart. And because of this improvement. I know I will not accept anything less than what he knows I deserve.. I've had some tough times in my life. I've had self-esteem issues and acceptance and fear of rejection issues, but I KNOW I am amazing. I know I am a loved daughter of God. I know I'm a wonderful beautiful woman. I don't mean to say that to brag only to know that I have confidence in me that I KNOW who I am and that I do LOVE ME FOR ME!! And I know I cannot accept any guy lower than what I deserve as I may have in the past. I can't accept anything less than what I deserve.. I am so blessed tho with the friends I have and the family I have.  I want to thank everyone for their love and support and prayers!! I feel them and I know they continue. I thank you all for that!

Love,
Holly