Sunday School Speech

Sorry I haven't posted in lately, I haven't had any real news until this past week, and I am so excited to share it with everyone. I have been asked to speak at my church's (St. Matthew's Episcopal Church) Sunday school, on Sunday, January 23rd at 9:15 AM. I will be telling my story about my journey living with my diseases, and how my faith has had such a big impact in helping me through this roller coaster ride. I have always wanted to share my story, in the hope of encouraging and inspiring others, not just those who are living with a chronic illness, but others as well. I want to share how when going through a difficult time, when you feel like giving up, that hope, and faith in the Lord can help you to get through it. I have gone to my church since I was around three or four years old. I went to Sunday school, Vacation Bible School in the summer, and my family and I always prayed before we ate. For me that was ok. But the summer before sixth grade, something changed. I was getting ready to start a new school with only two or three kids from my elementary school going, so as you can imagine I was pretty nervous. I decide that since I was going to a new school, and making new friends that it would be a chance to have a fresh start and sort of reinvent myself. A sweet neighbor of mine, who I have sadly lost touch with, shared with me some scripture verses, and prayed with me, to help calm some of my fears about starting middle school. As I read the verses she gave me, I decided I wanted to read more of God's word. I had seen a Teen Study Bible at my church, in   Sunday school, and I went to the Christian bookstore and bought one. After reading a few verses, I made a commitment as part of my fresh start, to freshen my relationship with God. I decided to start reading my Bible and praying more, and that summer, recommitted myself to Christ. This decision came at a time, when I was just starting to feel like I needed something more powerful in my life, with starting a new school, moving from just going to Sunday school to going to youth group at church, and my dad moving back to Texas with my stepmom and half-sister, after spending five years away living in Colombia, South America. Little did I know that this recommittal to the Lord would have such a profound impact on my life.

When I became ill at the beginning of eighth grade, it had been two years since my recommitment, and I definitely felt as though I had grown both spiritually in my relationship with God, and as a person. I think that this is what really helped me in dealing with my illness. I feel that by sharing how much my life has changed since I became sick, and how God has helped me to deal with these changes, I can show others that when life deals you an unfair hand, relying on the Lord and your faith, and trusting Him, instead of giving up and turning away from Him, will help make dealing with challenges, and life in general much easier. That you can feel at peace and content with whatever happens in life, as God has already laid out the path for our life before we were even created. I hope others can take away a message of hope, inspiration, encouragement, and God's love. 2 Thessalonians 2:14  says, "He called you to this through our gospel, that you might share in the glory of our Lord Jesus Christ." I feel that this is perfect in describing the reason why I want to share my story, in that God has called me to do so, and to share in the glory of our Lord Jesus Christ. 

Changing subjects, I wanted to give an update on whats been going on health wise. They have weaned my chemo down to 25mg (I have said they are weaning me down 5mg every two weeks), and with this decrease, I have definitely noticed some increases in symptoms, particularly fatigue, more joint pain, stiffness and swelling, increased shortness of breath requiring me to use my oxygen more frequently, and my tachycardia has started to return. I met with a palliative care doctor (Dr. Robert Friedman) last Wednesday, and he is such a wonderful doctor, very thorough, caring and compassionate. The goal of palliative care is quality of life, and keeping you comfortable. He recommended that I increase my Methadone from 30mg 3x a day to 40mg 3x a day, to help better manage my pain. I also started an appetite suppressant Phentermine, to help me lose some of the weight I have gained from being on steroids for so long. Coincidentally the phentermine is a stimulant that could help with my fatigue, which is something that Dr. Friedman wanted to help me with. If I wasn't on Phentermine, he would prescribe me Ritalin another stimulant, commonly used to treat kids with ADHD, to help with the fatigue. Even when I am off of the chemo I will still have to be very careful about getting infections, avoiding crowds, and wearing a mask when necessary. I have to be particularly careful of respiratory infections, because I have diminished capacity in my lungs due to the muscles around my lungs being so week because of the Dermatomyositis. This makes it much more difficult for me to breath in, so if I get a respiratory infection it would be even more difficult for me to breath in and cough up all the krudd, so my chances of getting pneumonia are increased, and if I get pneumonia it could be deadly. In regards to chemo, when I get to 20mg, they will keep me at that dose for a few months and then wean me back down 5mg every two weeks. 20mg was the dose at which I had started getting the methotrexate as an infusion instead of an injection, and when my hair started falling out again. I asked the nurse yesterday if when I get to 15mg will it start to grow back, and she said probably not, because of how long I have been on the higher dose, and the fact that I get it weekly. As you can imagine, I wasn't very happy to hear that, but not having to worry about my hair is one less thing to worry about. 

I want to say thank you to all of you who read my blog, to my family, friends, church community, and doctors and nurses. Without the love, support, and encouragement that each of you have provided individually, and as a whole, this roller coaster of a journey would have been/and continue to be much more difficult. You all are there when I need to vent or a shoulder to cry on, to provide humor and laughter when I need, and provide me with friendship and unconditional love and support. For that I am so very blessed, and grateful to God. Thank you again. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta