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!