Sunday's Speech

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

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

Discouraging News

This past week I got some very discouraging news. On Wednesday morning, Dr. Martinez (the BMT doctor at TCH in Houston), called and said that at this time I was not a candidate for transplant. They didn't have a protocol for me and couldn't create one, and because of my history of infections even on IVIG (an immune boosting medication) they couldn't do the transplant. This is the same thing that we have heard from all the other transplant clinics that we have sent my case. As you can imagine we were devastated. We had been waiting, praying and believing that they were going to do the transplant, and things that she had said at our last appointment indicated to us that it was going to happen. It felt as though we had been strung along for the past few months, and my grandfather believes that she, and the rheumatologist did not handle my case well. After hearing the news, my mom, grandfather and I met with my pediatric rheumatologist here Austin, Dr. Carrasco for over an hour on Thursday. He said that he had talked with several pediatric and adult rheumatologist in Austin, Houston, Dallas, Seattle, Chicago, Duke in North Carolina, and Philadelphia. They all said the same thing their is nothing more that they can do for me, that he is not already doing. I will never be able to get into a clinical trial because of my multiple diseases, and the fact that none of the doctors have heard of anybody else with my particular combination of auto-immune diseases. There is a drug that I could try called Rituxan, but the fact that I have failed so many other drugs, and have an unusual disease combo, makes the chances of it working very low. Their is also a very rare neurological side-effeect of the drug, called PML that is almost always fatal. That, with the other severe side-effects of the drug, and my history of rare side-effects on other medicines I've taken (mainly aseptic meningitis from IVIG), make the risk of taking the drug greater than the benefit. Their is nothing left that the doctors can do for me. I have been on chemo for so long (18 months), and the long term side-effects of it (developing cancer, organ problems, and other side-effects) are not good, so the doctors have decided to taper me off of it 5mg every 2 weeks. They could have stopped it cold turkey, but knowing my body I preferred to taper off of it. At least afterwards my hair will start growing back. We then will just let my body do what its going to do, and try to manage my pain as best as we can. Because of my age, for how long I have been sick, and the complexity of my diseases, the chances of my condition spontaneously going into remission are very low. They say that usually people flare about 1 1/2-2 months after stopping the medicine, so I go back and see Dr. Carrasco in July, so we can evaluate how I am doing. I will be able to travel in about 6 weeks (the dose of chemo will be low enough), so that I can go on my Make-A-Wish trip to go see the cast of NCIS. They are working on getting everything arranged. As you can imaging we are all in shock and devastated about the news. I had never seen Dr. Carrasco so emotional, that he almost cried. He never really has to tell patients that there is nothing more that can be done for them.

I have been reflecting, praying and meditating a lot lately about all of this. My perspective on life is changing. I want to live my life to the best of my ability each day. The day we found out the transplant wasn't going to happen I ate sushi, even though I know it's not good for me to on chemo. I didn't care anymore, I just wanted to enjoy life, and still do. I prayed everyday that they were going to do the transplant, and I know that God heard my prayers. Even though the transplant didn't happen, I know God has a reason for it, and that it hurts him to see me in pain. I am becoming more at peace each day, and I do have my moments where I cry, yell, scream, get angry, frustrated and discouraged. I know that this didn't happen to me but for me. 

Yesterday, my grandfather sent me the following poem:

God, give me grace to accept with serenity
the things that cannot be changed, 
Courage to change the things
which should be changed, 
and the Wisdom to distinguish
the one from the other.

Living one day at a time, 
Enjoying one moment at a time,
Accepting hardship as a pathway to peace, 
Taking, as Jesus did, 
This sinful world as it is, 
Not as I would have it, 
Trusting that You will make all things right, 
If I surrender to Your will, 
So that I may be reasonably happy in this life, 
And supremely happy with You forever in the next. 

Amen

I plan on posting this on the mirror in my bathroom and reading it each morning. I think that this prayer is very true. I need to know and trust that all of this is part of God's will, and of course that is easier said and done. Despite this illness, I am truly blessed. I have a roof over my head, clothes on my back, shoes on my feet, food to eat, a warm bed to sleep in, and wonderful friends and family. My life may be difficult at times, but who's isn't. We have to accept and deal with the challenges that life brings us. As long as we have, faith, determination, and the willpower to keep living life to the fullest, than we will be OK. I trust that God only has good things planned for me, and I know this, because of all that he has already given me. This roller coaster I'm on, is the most wild ride of my life. Even though I have been sick, I wouldn't trade my life for anything, because it has made me into who I am today, and has taught me so much in life. I know that whatever happens in my life God will be right there with me. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Mother's Day

Yesterday was Mother's Day, a special day in which we honor our mothers, grandmothers, aunts, and all the motherly figures in our lives. This Mother's Day was low key for our family. We went to church, had breakfast at our usual restaurant where I gave my mom and grandmother handmade cards, and then we had a wonderful dinner later in the day at my great great Aunt Martha's house, where my grandfather barbecued some delicious ribs. I am so pleased that I was able to have a day in which to honor my mother and grandmother. They are the backbones of my life. Not only have they taken care of me during this roller coaster of an illness, but they provide encouragement, love, and wisdom. I am so blessed to have them in my life. They are their for me no matter what, even when I can be not so pleasant to be around. 

I was thinking about how our mother's deserve to be treated as though it is Mother's Day, every day of the year. I don't mean giving gifts and cooking nice dinners (though I'm sure they would love that). I mean we should tell them and show them with our actions daily, how much we love and appreciate all that they do for us. I hope my mom, and grandmother, and all the mother's out their had a relaxing, blessed, and joy filled Mother's Day. We would not be who we are, without all that you do for us. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Let Go Let God

I have a charm from James Avery, that says "Let Go Let God." It was given to me by my grandmother to put on my charm necklace. She thought that this was a perfect charm for me, considering my situation. Whenever I get frustrated and discouraged, my grandmother always says, "Let Go Let God." I can tell you that when she says that, I get really annoyed and frustrated. I think its because that it is something easier said than done. I know she is just trying to be positive and encouraging. Me being the religious and spiritual person that I am I really try to put in practice trusting and having faith in God. One of my favorite examples of this in scripture, is the story of Joseph. Joseph was thrown into the pit, had his coat stollen from him, and sold into slavery by his brothers, yet he continued to trust and have faith in God that his dream would come to pass. His master Pottiphar let Joseph run his home, but Pottiphar's wife seduced Joseph, but being faithful to the Lord Joseph rejected her, and she took his coat, gave it to Pottiphar and said Joseph attacked her. He was put in prison, and he continued to remain faithful. While in prison he met Pharoh's cupbearer and baker, and interpreted a dream for them. He asked the cupbearer to put in a good name for him to Pharoh. The cupbearer and baker were released and the baker ended up being killed. Joseph continued to spend the next two years in prison, but the warden ended up putting him in charge of the prison. One day the Pharoh told his cupbearer about a dream that he had, and the cupbearer said, oh their was this dream interpreter in prison, and the Pharoh asked him to be brought to him. Joseph was released from prison and brought to Pharoh. He told Pharoh that a great famine would occur and that he needed to appoint someone to rule. Pharoh appointed Joseph because he said that since God gave him the ability to have and interpret these dreams, that he would be perfect for the job. Joseph ended up becoming second in command, and was given a linen robe, and Pharoh's signet ring as a sign of his authority. Joseph's brothers who betrayed him, ended up coming to him for help during the famine. Joseph's continuing faith and trust in God allowed his dream and destiny come to pass, and he received abundant blessings. 

This story inspires me to continue to have faith and trust in God, even when I have difficulties and hurdles in my life. I love what Hebrews 11:1 says, "Now faith is confidence in what we hope for and assurance about what we do not see." I know that even though I can't see the light at the end of tunnel, I have faith that it is their, and have faith that God will get me through it. 

On another note, I am still waiting to hear from Houston. A week ago from yesterday, Dr. Martinez's office said that she was needing to meet with the rheumatologist this past week, and that if I haven't heard anything by Friday, to call back and hopefully she will give me her decision. I will call on Monday for an update. In the meantime I'm struggling and hanging in their, my muscle enzymes aren't looking good, and they shouldn't be as high as they are on the dose of chemo that I'm on, and my SED rate (which measures inflammation) is 3x the high normal. This increased chemo is taking a toll on my body, I'm having horrible nausea and mouth sores, but I know this will be a cakewalk compared to the transplant. I'm looking forward to seeing my friends who are home for the summer from college, and hanging out and catching up with them. I am trying to take it one day at a time and "Let Go Let God."


Joyful Love 
          &
Blessings In The Lord
Alexandra K. Acosta

Tough Week

This has been a tough week for our country, with the bombing's of the Boston Marathon and at MIT, and the fertilizer plant explosion in West, TX. I have been praying for those who were injured and lost their lives, and their families. Tragedies like the bombing makes it more prevalent that evil does exist in the world. When any tragedy occurs, many people wonder if their is a God, and if their is, does he care? The answer is yes. Our God is a merciful and wonderful God, and every tear we shed, and pain we feel, he also feels it. People always ask the question "why do bad things happen to good people?" I can't really answer that question, as its above my pay grade. I do believe that God loves us with all is heart, as He gave His only son for us. We can't stop bad things from happening in this world, but we can choose to continue to trust and have faith in God. I believe that His love is always with us, and that He will always take care of us and watch over us in the good times and the bad.

In addition to the tough week our nation has had, I had a tough day yesterday, as I got my first increased dose of my weekly chemo. I went up from 30 mg to 35. I have mixed feelings about it. I was upset at first, because I didn't want to deal with worsening side effects, but at the same time, I knew it could help some with my symptoms, and keep me alive and somewhat stable. Im feeling pretty blah today, and just flu-like. But I'm pushing through, and going to get a manicure and pedicure this afternoon with my mom, so that will be relaxing. Even though this has been a difficult week for me and many in this nation, I know that we will come out victoriously. I love what Deuteronomy 20:4 says, "For the Lord your God is the one who goes with you to fight for you against your enemies to give you victory." I love this scripture verse, it is so encouraging. It helps me to know that God is always with us, and will help us against our difficulties, so that we will come out stronger and victoriously. I believe that with faith, and determination we can get through any obstacle, and reap the fruits of God's abundance and blessings. May God bless each one of you, and this nation. 


Joyful Love
          &
Blessings In The Lord 
Alexandra K. Acosta 

Practicing Patience

One of the challenges that I have had through this journey of an illness, is practicing patience. I have been trying to be patient when it comes to many different aspects of my illness. First, it was being patient while waiting for a diagnosis, then being patient while trying to find the right treatment and seeing whether this one will be the "miracle", and now being patient while waiting to hear from the BMT team at TCH in Houston. I pray each day, that God will help me to be more patient, and sometimes I am, and other times not so much. It is such a daily struggle. I know that God has given me the strength to be patient, I just have to find it within myself. I think when you are in so much agony, and so drained (physically and emotionally), you have the desire to just get discouraged and want to give up. But those are the times when practicing patience and relying on the Lord are crucial. I once read that you should try not to think of something bad happening to you, but for you. I know that may sound strange, but I think its a positive spin on a negative situation. That saying resonated even more with me, when I read in scripture that God will reward us double for our troubles, just like he did with Job. But we have to stay in faith for that to happen, and that's where patience comes in to play. James 5:7 says, "Be patient, then, brothers and sisters, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop, patiently waiting for the autumn and spring rains." I think this is such a beautiful scripture verse. It helps me to know that I have to be patient in order to see the rewards of God's blessings, just as a farmer practices patience waiting for his crops. Patience is a difficult thing to practice, but so important. I know that by being patient and faithful that I will see an abundance of God's blessings. It may be a difficult journey, like it was for Job, but in the end, the rewards will be so worth it. 



Joyful Love 
          &
Blessings In The Lord
Alexandra K. Acosta