This past Sunday I spoke at the adult Sunday school at my church, where I shared my story of the journey of my illness, and how my faith has played a significant role in being able to handle everything that I have been through. I was also pleased that my dad, step mom, brother and sister were able to come and hear it. They came down to have dinner with me the previous night, and were able to stay and hear the speech. At least seventy-five people were their and I didn't expect that it would touch and inspire so many people. My grandmother said that nobody was fidgeting in their seats, nobody got up and left or talked to their neighbor. I also didn't expect people to cry, but they did. Even I got teary eyed a couple of times, and I did not expect that. I had numerous people come up to talk to me afterward to say how inspired they were, and how they didn't know all of what I had been through, and have gotten sweet and encouraging cards since then. My grandmother also said many people, including former Sunday school teachers from when I was younger, come up to her and said similar things.
For awhile I have had this void, because I have always been the type of person who enjoys volunteering, doing service projects, and being a blessing and encouraging others, and because of my illness I have felt I have been more on the receiving end instead of the giving. I had been praying that God will help me to find a way to be a blessing and encourage and inspire others. When I got the opportunity to share my story, and heard how people were excited and looking forward to hearing it, I felt that void could begin to be filled. It wasn't until after I shared my story that I really felt that void actually beginning to be filled. I have been thinking lately about what I could do in life, knowing what the situation is/could be with my illness. I realized that I could continue blogging, and eventually turn the blogs into a book. I can also try and look for religious organizations, magazines, and websites that would allow me to share my story of illness and faith. I also would like to start volunteering in the playrooms at Dell Children's, work more with the Make-A-Wish Foundation, and maybe even start a teenagers with arthritis support group through my pediatric rheumatologists office. I feel that these things are what I am called to do. I love what 1 Corinthians 9:23 says, "I do all this for the sake of the gospel, that I may share in its blessings." I think that this scripture is so true. I feel that by sharing my story and helping others, I am doing it for both therm and God, and at the same time everyone will be blessed. I also love Romans 15:29 which says, "I know that when I come to you, I will come in the full measure of the blessing of Christ." This piece of scripture comforts me, because it helps me to know that by doing what the Lord calls me to do, I will receive his blessings, because I am being called to be a blessing, and to encourage and inspires others.
On a different note, things are going along. I am down to 20 mg of the weekly Methotrexate, which I like to call "lemonade", because its yellow, and lemonade sounds like a positive way to describe a poison. With this lower dose, I am experiencing more symptoms, including increased joint pain, swelling and stiffness, increased muscle weakness, shortness of breath, and fatigue. They have increased my methadone to 40 mg from 30mg. I am not sure how long they will keep me on the 20, before going down to 15, but because I am feeling worse, I hope that it is for a little while at least. I meet with my Hem/Onc doctor, Dr. Cline-Burkhardt (Dr. CB) next Friday, and Dr. Carrasco the following week. I was pleased to have some fun in the past two weeks. I had dinner with one of my best friends from my support group the week before last, spent the night at the Holiday Inn with my god sister last Monday, where we watched movies, ordered room service, and read gossip magazines while eating our favorite candy Dazzlers. I got to see my dad, step-mom, brother and sister on Saturday where we went to the Cheesecake Factory and then Barnes & Nobles, and had breakfast after my speech. Sunday afternoon I went to the Domain with another best friend from church, which was really fun. This is my mom's last week of work, so I am looking forward to spending some quality time with her, and going on a little getaway, and maybe going on a trip with two of my best friends. With all the stress, I am glad to be getting some fun in, even if it causes increased pain and fatigue, it is totally worth it. I am continuing to try and trust God with all that is going, but its definitely a process. Knowing that I have Him as my rock and strength, gives me peace and comfort, because I know that He can accomplish things that I can't do on my own. By giving my life and heart to Him, He will be able to do more than I could ever imagine.
I believe they will be posting the recording of it on the church's website, and possibly make CD's. I will let you all know how you will be able to hear the recording of it, if you so desire.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Thursday, June 27, 2013
Saturday, June 8, 2013
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
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
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