I'm sorry that I haven't updated in quite some time. The past few months I've had to make the decision to only do what was most important to me because it was all I had energy for. I chose to focus my energy on my job and doing the POTS treatment that my internist had me begin on October 26th. It has been getting more difficult to do the simple things that I used to be able to do without even thinking the past few months. I think back to the big run I did May 28, 2016 and I have no idea how I survived that run. I'm so grateful for having accomplished that and hope to one day do so again, but for now I am trying to do exactly what the doctors tell me to do.
QUICK UPDATE-I had a second j feeding tube placed in November. That surgery went well and I was excited to begin receiving nutrition again after almost 2 weeks of nothing.
-I ended up in an ER in North Carolina while visiting family over Christmas break. I was then admitted because of abnormalities in my abdomen. It ended up being a ruptured ulcer, which caused air to be in my biliary sphincter (bowel). They did an endoscopy and cleaned out scar tissue in my esophagus, duodenum, and checked for holes in my stomach and bowel. The best part was when my mom accidentally pushed the CODE BLUE BUTTON and we hear everyone in the halls yelling, "Where's the crash cart?" It was an entertaining moment as my mom ran out to tell them that I was breathing just fine.
-The past week my left knee has began to swell and I've struggled to bend it. It seems like it is filling with fluid of some sort. I've tried icing and heating, but it continues to swell more each day. This could be another symptom of POTS. Hopefully we will hear from my internist soon.
January 17thI was able to get into a specialist on January 17th in California. My mom is headed with me to meet with this surgeon. He is a specialist with SMA syndrome and we are hoping for the possibility of surgery to help increase blood flow through my organs and bring some relief. This is one of the genetic diseases that I was diagnosed with in September of 2016.
SMA Syndrome Explanation
As my health has continued to worsen instead of improve, I would be so grateful for your thoughts and prayers that January 17th is a day of answers for my mom and I. Me being sick has not only effected me, but it has had a huge impact on my family, especially my mom.
As my health has continued to worsen instead of improve, I would be so grateful for your thoughts and prayers that January 17th is a day of answers for my mom and I. Me being sick has not only effected me, but it has had a huge impact on my family, especially my mom.
This quote reminds me of my mom and how much she has sacrificed for me the past 5 years. I don't know what it is like to be a mom and have a child that is ill, but I do know that my mom goes above and beyond every day to make sure that I am not going through this alone. I also know that she and my dad would take my pain away in a heartbeat and go through it themselves. I hope to someday be able to experience that kind of love for children of my own. I know that I've been in all of your prayers and I will be forever grateful for that, but I ask now that you not only keep me in your prayers but also my family and my mom. Help to give them the strength to go through this with me.
Thank you all for being so willing to help with rides, being a friend, a positive example, for having faith and hope when I've struggled to, giving me blessings, putting my name in the temple, and so much more. Tomorrow is going to be a big day. I'll keep you all posted as we find out news.
