Preparing For The New Year

As the holiday's come to a close and we prepare for the new year, I have been reflecting on this past year. It has truly been a roller coaster of a year. From stoping the Cytoxan treatment early, doing weekly methotrexate, meeting with the transplant team at Texas Children's Hospital (still waiting to hear back from them), to my grandfather having to have to major surgeries, and maybe undergoing another one in the next few months, my mother finally earning her PhD, and learning that I need to have a hysterectomy, it has been a crazy year for me and my family. Despite all of that we are still going strong, and are family is as close as ever. I am also beginning to reflect on the year 2013, and how I know it is truly going to be an awesome year. I know God is going to bestow even more blessings on me and my family. Although my year may not start out the best with me having to have a hysterectomy on the 17th, it will get better as we prepare for the transplant. I am not just simply hoping for it but preparing for it. Scripture talks about how in order for us to make something happen we have to talk and plan like it is a for sure thing. Some people may think that a BMT isn't something to look forward to, but for me it is. I know that the transplant will give me a new life and a cure. I will be able to walk, and maybe even run, I will be able to breath better, and have less joint pain, swelling, fatigue, and muscle weakness, and that is definitely something to look forward to. I will finally be able to go to college, and travel, and be a "normal" young adult. 

As the new year approaches, we all make resolutions; eat healthier, exercise more, go to church, and do more volunteer work. Although that is a great thing to do, I personally like to think of the new year as a fresh start, and a time for rejuvenation. A time to close the doors on the previous year and begin again. As Romans 15:32 says, "So that I may come to you with joy, by God's will, and in your company be refreshed." I think this a perfect verse for the new year, because it says that with God will be refreshed. And each new year that does happens. As you and your family prepare for the new year, I hope that you find it as a time for refreshment and new beginnings. I wish you all a Happy New Year!!!!


Joyful Love
         &
Blessings In The Lord 
Alexandra K. Acosta 

Merry Christmas

I hope everybody had a wonderful Christmas, I know I did. The day began with mom and me waking up and opening are stockings. I got some new earbuds, and eucalyptus stress relief bath gel, which I could really use, and mom got some goodies as well. We then enjoyed raspberry turnovers (which was something we used to have at my grandparents when it was cold outside, it brought back fond childhood memories) and coffee. Then we spent the morning relaxing and hanging out. The two of us then went to see Anna Karenina, which was a good movie. We tend to go to movies Thanksgiving and Christmas day while my great great Aunt Martha and/or my grandmother are cooking dinner. After the movie, we met my grandparents at my great great Aunt Martha's house, to open gifts and have Christmas dinner. I got an iPhone 5, new slippers, bath stuff, a wonderful scarf and hat, and both my mom and I got Keurig K-cup coffee makers. We then enjoyed a wonderful dinner of standing rib roast, potatoes, green bean casserole, cheese and onions, and cranberry relish. For dessert we had a wonderful ginger pudding with coffee. My Aunt Martha is a wonderful cook, and it was nice just the five of us, enjoying conversation, laughing, and just being together. Are family may be small, but we truly have a wonderful family. Although I did enjoy getting gifts, I would of been happy just being with my family, because they along with Jesus Christ, are the most precious gifts that I could ever receive. I am so blessed to have the family that I do, not just the one that I spent Christmas with, but all my aunts, uncles, cousins, second cousins, and my half brother and sister. While I was with my family and opening gifts I thought of all the blessings given to me and my family, which are really gifts from God. Thats how I see blessings, as gifts from God. 1 Corinthians 12:4 says, "There are different kinds of gifts, but the same Spirit distributes them." I find that scripture so very true. I hope that every day, just like on Christmas that we can all think about the gifts that the Spirit has distributed to us. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta 

Preparing For Christmas

Preparing for Christmas usually means decorating the house, running from party to party, spending money on expensive gifts, baking and cooking, and getting the house ready for visiting family that you only see about once or twice a year. For me, preparing for Christmas is preparing for the birth of our savior Jesus. I wonder how the people of Israel prepared for Jesus' birth long ago. I doubt it was the way we prepare for Christmas. This is such a wonderful time of year and I am filled with immense joy, knowing that tomorrow will be the day in which we celebrate God joining the human race through Jesus. It is very easy to lose sight of what the true meaning of Christmas is in today's world. It seems as though Christmas has become such a commercial, retail obsessed holiday, where all we think about is getting presents, and the stress level becomes so high with the preparations, that the joy of the holiday season is gone. Since I have a lot of time on my hands, I have been meditating and reflecting on the holiday season, and the true meaning of it. I have really been turning to scripture and reading the story of Jesus' birth, and for some reason it has really been spiritually nourishing to me. I feel with everything that has happened this past year, that this Christmas is really special to me. I am so blessed to be able to have a wonderful family and friends, and to not be in the hospital this holiday season. I do know that the greatest gift that I can receive is the gift of Jesus. As we are busy making last minute preparations for Christmas, I hope we can all take a minute to slow down and remember what we are really preparing for. As Luke 1:76-79 says, "And you, my child will be called a prophet of the Most High; for you will go on before the Lord to prepare the way for him, to give his people the knowledge of salvation through the forgiveness of their sins, because of the tender mercy of our God, by which the rising sun will come to us from heaven to shine on those living in darkness and in the shadow of death, to guide our feet into the path of peace."


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

The Hiding Place

Yesterday I finished reading The Hiding Place, a book that tells the incredible story of Corrie Ten Boom. Corrie, her sister Betsie, and her father were watchmakers in Holland, and hid Jews in their home when the Nazis began occupying Holland. They were arrested and Corrie, and her sister were taken to a concentration camp in Germany. They hid a Bible, and ministered to the women in their barracks, and even prayed for the guards who were harming them. While Corrie was concerned about the prisoners, her sister was more worried about the sousl of the guards. Her sister kept on referring to 1 Thessalonians 5:18 which says, "Give thanks in all circumstances." She gave thanks for the tight conditions, for the women, the cloth dresses they received. Betsie even told her to give thanks for the flees, but Corrie said she wouldn't. Betsie said that the Lord said, "Give thanks in ALL circumstances'", not just pleasant circumstances, so she gave thanks for the flees. The fact that Corrie was able to keep her faith, rely on God, and turn to scripture, in such a difficult time is extremely inspiring.  Her sister said that when they got out of the camp that they must start a home for survivors of the camp, to help them recover and share God's word. Betsie died in prison, and Corrie was released (it was later learned that she was only released because of a clerical error, and shortly after her release the women of her age were gassed). When released Corrie began sharing her testimony, and started the home, one of which was in a former concentration camp. She preached to prisoners about forgiving those who harmed them, which many did. After one of he presentations a former guard at the camp she was in approached her, and thanked her because he knew that God forgave him for his sins. He reached out to shake her hand but she couldn't do it, yet this is what she preached. She prayed to God that she would be able to forgive him, and when her hand touched his, a wonderful feeling came over her. It was amazing that she was able to forgive and connect with the guard at the camp. All but one of the Jews who were hiding in the Ten Boom house when the gestapo arrested them survived. God was truly with Corrie during her darkest hour. As scripture says, when we are faithful to God, even in difficult times, we will be greatly rewarded and blessed. Corrie's story has taught me to continue to trust and have faith in the Lord, even in this most difficult time. I must trust him, and know that he is always with me and will never forsake me, and that when I am in pain and hurting so is he. I believe in a loving God, and want to be able to share his love and word with those around me. As Proverbs 3:5-6 says, "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight." I truly believe in this verse, and just like Corrie Ten Boom, I will rely and trust in God even in my darkest hour. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

The Power Of Prayer

I have always prayed before meals, at bedtime and in church. But when I became ill, prayer became a much bigger part of my life. Now, in addition to praying at meals and at bedtime, I pray at least once a day in the morning, and read my Bible every day, except for chemo days when I am completely out of it. But even then I read some sort of scripture verse. When I don't pray I feel empty, as though I need to be spiritually nourished and fed. When I pray and/or read scripture I feel at peace. I always have my prayer shaw (given to me by the prayer shaw committee at my church) wrapped around me when I read my Bible and pray. I can feel God's arms around my shoulders, and I know that those who knitted it just for me have prayed over it. Prayer is a kind of meditation for me, it allows me to refocus and become grounded. I feel as though I am having a one on one conversation with God, and were the only to people in the world. Even though I have had prayers that have not been answered, or have been answered in a different way, I still feel peace. I know that I have left it in God's hands. I do believe in the power of prayer, and I believe that God does here our prayers. He may not answer them in the time in which we want them answered, or even in the way we want them answered, but he knows whats best for us and what we need. Prayer gives me strength, and it helps me to be able to continue to fight each day. I know that without that spiritual food, and God's love, I would be empty, and feel so incomplete. There is something that only God's love can fill, and we all need it. I encourage you all to find a time each day to pray. Maybe its before bed, when you first get up in the morning, or in the car on your way to work. I guarantee that you will be spiritually fed, and filled with God's love. 

Psalm 66:19 "But God has surely listened and has heard my prayer." 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Another Bump On The Roller Coaster

This past Thursday I got some discouraging news. I learned that I need to have a hysterectomy. I have been having some issues, that would have usually been treated by medications and a minor surgical procedure. After my doctor learned that the fertility doctor told me that my eggs have already sustained damage from chemo (and even more so now because I have had much more chemotherapy) so my chances of having biological children are slim to none, she told me that even if I went into remission it would not be safe for me or a baby to carry a child. Women with my diseases can be in a remission and even go into a remission during but after birth get extremely sick and have bad flares (some even die), and getting control over their disease and going back into remission is very difficult sometime impossible. Pregnancy is hard on a healthy women, so for someone like me its even harder. Babies of women with my kind of diseases often do not develop well in-utero and are often premature. The fertility doctor had told me that my only way of being pregnant would to use an egg donor, where another women's egg is implanted in my uterus. When they do that though they usually implant more than one to increase the chance of pregnancy so the chances of having twins or other multiples is increased. With my lung and heart issues is another reason why pregnancy is not recommended. Since the only purpose of having a uterus is to carry a baby, and that would not be good, and I would be facing having pills and the minor surgery every 6 to 9 months, its just best to take the uterus out and do the hysterectomy. This news was not as hard to hear as it was from the fertility doctor, because when I went to him with hope. I am also happy they couldn't freeze any eggs because that would of made the decision even more difficult. I am still in the "shock" phase, and I know it will be harder in coming years when all my friends are pregnant and having babies. I have been turning to scripture a lot. As Psalms 28:7 says, "The Lord is my strength and my shield; my heart trusts in him, and he helps me." I truly believe that and I know that if I trust in him I will be at peace. I have a bit of an update regarding the transplant at TCH. Dr. CB my oncologist here, talked with Dr. Martinez (the transplant doctor in Houston), and she is having a hard time finding the right conditioning regimen. Cytoxan is one of the drugs used to condition the body for a transplant, and her concern is because I failed it giving me higher doses wouldn't be beneficial, and she wants to find a regimen that is safe and won't kill me. So she is not sure whether she will proceed with the transplant. Its NOT a no, but she is trying to work things out. I asked Dr. CB to remind her that the Cytoxan worked for while, it just eventually stopped working, same with the Methotrexate. But in the cancer world that would mean the drug failed. Its difficult for Dr. Martinez, because when a person has leukemia, or lymphoma, their is a conditioning protocol that they know works, and for my case they don't know. Its a guessing game. I am just continuing to have faith, and hope to hear something soon, most likely after the new years, because of the holidays. 

On another note, my heart goes out to the families, and the community of the Sandy Hook school shooting in Connecticut. 20 precious angels lost their lives, and eight adults. Evil exists in this world, but God did not create evil. Its even more difficult for the families and the community because it is so close to Christmas. As Lamentations 3:32-33 says, "Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to anyone." As Jeremiah 33:6 says, "Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security." I know that the families must feel anger towards God, and that is understandable. We never know what God's plan is. I hope that the families and the community can find comfort in scripture, and prayer. May they know that God is feeling their pain and that he is with all of them and watching over them, and that heir children, are in heaven smiling and playing free of all pain. Please keep these families and the community in your thoughts and prayers.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Christmas Trees, Gingerbread Houses & The Birth Of Jesus

This week has been filled with some Christmas fun. On Wednesday, my grandparents and I went over to Red Barn Garden Center to pick out a Christmas tree to put up at my great great Aunt Martha's house. It didn't take us very long to find the perfect tree. I think the second tree that I saw was the one we picked. It was extremely fun, because I was actually able to be apart of the process. The past few years just my grandfather and Aunt Martha went, but I actually got to go this year. Then today, my mom and I attempted to make a gingerbread house. It started out looking like a kindergartener's art project, then the whole thing collapsed. My mom and I couldn't stop laughing. Despite not being able to have a finished product we had fun anyway. We may attempt to do another one next year, but with a different kit. We were definitely not going to make one from scratch. That is one of the things that I love about the holiday and Christmas season, the fun memories that our made. The gingerbread house fiasco is definitely a fun memory that I will always have. 

The other reason why I truly love the Christmas season, is because we are celebrating the birth of Christ. Jesus is the best gift that I and anyone else can receive. God sent his only son to do such wonderful things, and then had him die on the cross for our sins. Of course I like getting presents, decorating the tree, and drinking egg nogg, but I like celebrating the birth of Jesus more. For me Christmas is a big birthday party, and that is how I like to think of it. When we exchange gifts on Christmas morning, I like to remember how the wiseman brought gifts to baby Jesus. As I have gotten older, I have started to really understand the true meaning and spirit of Christmas. Its not just about the presents like it was when I was little. I am so excited for the Christmas season. I hope that we can all remember what we are truly celebrating this Christmas.

As Matthew 2:11 says, "On coming to the house, they saw the child with his mother Mary, and they bowed down and worshiped him. Then they opened their treasures and presented him with gifts of gold, frankincense and myrrh."



Joyful Love
         & 
Blessings In The Lord
Alexandra K. Acosta

Season Of Giving

This Advent and Christmas season always inspires and encourages me to give back more. Though we should give back when we can no matter what time of year it is, I think most of us can agree that the holiday season reminds us to do it even more. You see the people ringing their bells for the Salvation Army, the Austin American has its Season's For Caring, and many other organizations run advertising for donations. I feel that I have been given so much and the Lord has blessed me more than I can imagine, that I want to give back in any way that I can. Its hard when you are sick, and money is tight, to find a way to give back, but it is possible. One of my favorite things to encourage others to give back is something that Macy's does for the Make-A-Wish Foundation. Each year they have something where you can "write a letter to Santa" and drop it off in a mailbox in Macy's and they will give a dollar to the foundation. This is a great thing to do if you have young children, grandchildren, cousins, nieces and nephews, or if you are a kid at heart. As Romans 12:8 says, "If it is to encourage, then give encouragement; if it is giving, then give generously; if it is to lead, do it diligently; if it is to show mercy, do it cheerfully." Scripture talks a lot about giving, this verse along with Matthew 6:4 which says, "So that your giving may be in secret. Then your Father, who sees what is done in secret, will reward you." I encourage you all this holiday season, and all year around, to give back to a cause close to your heart. I know for some finances are tight, but even 5 or 10 dollars can make a difference. Some of the organizations close to me are: The Make-A-Wish Foundation, The Myositis Association, The Arthritis Foundation, and the Spondylitis Association. I hope this holiday season allows you to get bitten by the "giving bug" And as scripture says, we will be rewarded for our good deeds.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Busy Week

This week is going to be a bit hectic and stressful for my family. My grandfather is scheduled for surgery on Thursday, and is expected to be in the hospital for about 4 to 5 days. Please keep him in your thoughts and prayers this week. Of course I also have chemo this Friday, but a sweet friend of the family has agreed to drop me off and pick me up from chemo. It is such a blessing to have so many kind and generous people in our lives. In times of sickness you can really tell who your friends are. I am so thankful that I have a group of wonderful friends who are always there for me. I know that this week will be stressful for my grandmother, but I know that she has the strength to get through it, and so does my grandfather. Some people may say that it is so unfair that are family has to go through all of these difficulties. But who said life was fair right? As James 1:2-4 says, "Consider it pure joy my brothers whenever you face trials of any kind because you know the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete not lacking anything." I have to trust that God knows what he is doing for me and my family, but that is not an easy thing to do. It is a true testing of my faith. I know that as long as I give my worries and anxiety to the Lord, I will be at peace. And peace is the one thing that I want to achieve right now (besides getting better). Thank you all for your prayers and support, they mean more than you will ever know. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Two Times The Fun

Well this is/has not been one of my favorite weeks. Due to last week being Thanksgiving I didn't get the opportunity to go to chemo because the doctors office was closed, so I ended up going on Monday, as well as having to go this Friday. Because my chemo was delayed a few days I ended up having to go to the ER late Monday night/early Tuesday morning. I had a terrible headache and some stomach issues. I ended up having to get fluids for some dehydration and IV pain and anti-nausea medications, luckily they were able to get my symptoms under control so I was able to go home and sleep it off, which was my goal. I have had these "episodes" before, and I practically tell the doctors what to do. I am feeling better, but still having that post chemo ache, and by the time I should start to feel better, I will have to go back again on Friday. Although I must say, that even having my chemo delayed just a few days caused me to flare with joint pain, swelling, fatigue, and the rash on my face. So this week is twice the fun. Everyone else is OK, except for my mom, who as I am writing this is in the ER for dehydration, the doctors say she's got a stomach infection, I don't think she will have to be admitted, but were hoping she is back up on her feet soon. While I was at chemo on Monday I found out that my oncologist here in Austin talked to Dr. Martinez (transplant doctor at Texas Children's), apparently she is still consulting with the rheumatology people to make sure that the benefits of the transplant outweigh the risks. Dr. CB (Cline-Burkardt, oncologist here) gave Dr. Carrasco  Dr. Martinez's number, so the two of them can talk. So the waiting game continues, and with the holiday's approaching nothing will probably happen until after the new year. I know that they need to be thorough and dot all their I's and cross their T's. As Dr. Martinez said, "we want to do whatever we can to help you, but our first priority is to not harm you." It is frustrating that I have to continue to wait, but I  am not going to get discouraged, and continue to have a positive attitude. I know that it is all in the Lord's hands. As Romans 15:13 says, "May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." I know that when I trust in the Lord I will be at peace, and that helps me to stay positive and encouraged. I know that God will never leave me nor forsake me. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Happy Thanksgiving!!!!

You would think that with all the difficulties and hardships that my family and I have endured this year, that it may be difficult for us to be thankful. But it is just the opposite, we have so much to be thankful for. I am so thankful for my friends and family, for the support hey give me, and the fact that they are always there for me when I need them. They are truly a blessing to me. I am so fortunate to be able to have a roof over my head, a warm bed to sleep in, clothes on my back, shoes on my feet, and food to nourish my body. Sometimes I also can find blessings and be thankful for the things in the most unexpected situation. It may sound odd, but in some ways I am thankful for my illness. This illness has allowed me to grow not only as a person, but also in my faith and relationship to God. My illness has allowed me to meet friends who I consider family, and led me to my support group at Wonders & Worries, both of which I would be so lost without them. My illness has also allowed me to be a blessing to others. By that I mean if I were not ill I wouldn't have needed to receive infusions at Specially For Children, and see the need that they have for toys and there infusion suites, and in turn doing a toy drive through my church to collect toys and donate them. Its easy for us to see all the negative things that are going on in our lives, but its more difficult to see all we have to be thankful for and all the blessings that the Lord has given. But more importantly we must find a way to be a blessing to others, especially those who cannot repay us. As Luke 14:14 says, "And you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous." It is also key for us to be thankful for all that God has given, and be a blessing to others all year around, not just around the holiday's. Throughout the day you can say, "God I am thankful for being able to see another day." Just simple things like that. As 2 Corinthians 9:11 says, "You will be enriched in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God." What are you thankful for today? And how can you be a blessing to others and thankful to God, today and all year around. I hope you have a safe and happy Thanksgiving!!!!


Joyful Love
         & 
Blessings In The Lord
Alexandra K. Acosta

Back In Town

This past week my grandparents and I went down to McAllen TX for a business that my grandfather had. We left last Sunday and came back on Thursday, just in time for chemo on Friday (not fun). My grandmother and I just stayed in the hotel during the day while grandfather was working. SuSu (my grandmother) taught me how to platy gin rummy which was fun, and we mainly just relaxed and vegged. I did bring my GED workbook along and did some studying in the morning so that was good. It was a nice little getaway for me and SuSu. Although PaPaw (grandfather) had to work, he said he did enjoy having our company. Of course being in "the valley" in south Texas, we had some terrific mexican food. My grandparents went to this same taco place for lunch everyday (the owner of the restaurant has a couple different restaurants their and throughout south Texas) had the most wonderful homemade tortillas and fajitas. We also went to this "old mexico" restaurant that we like to go to on our last night their. We also had a fun time playing the LOGO board game when we got back to the hotel, SuSu won twice, PaPaw once, and me 0. We had a terrific time. It was a nice little vacation for me, and a change of scenery since I have to spend a lot of time at home because my immune system is so weak from chemo. I also loved the quality time with my grandparents (though I did miss my mom). I am happy to be back home and to have life get back to normal. We still have not heard anything from Texas Children's, but my oncologist here is trying to get in touch with them to see what the status is. They want me to continue with the weekly "lemonade" (methotrexate chemo). I had it this past Friday, and was very happy because my mom was able to take me (Del Valle) had off because of Thanksgiving and the Formula 1 race. It has been a pretty busy weekend by my standards. My mom and I went to see Twilight: Breaking Dawn Part 2 at the Alamo Drafthouse. This morning we had church then breakfast at one of our favorite restaurant's (where I always get the cinnamon short stack of two pancakes, even for dinner). This afternoon my mom, grandparents and I are going to the IMAX to see the new James Bond movie Skyfall, so that should be fun. I may just have to take it easy tomorrow, since this is quite busy for me. I'm hoping to call TCH tomorrow to see if I can get an update, and with any luck get an appointment with Dr. Martinez. I will definitely keep you updated when I know anything. Right now, I am just praying that God will give me the strength and patience that I need to continue waiting, and continue with the chemo. I know that he has a wonderful plan for me, and as Ecclesiastes 3:1 says, "There is a time for everything."

Joyful Love 
          &
Blessings In The Lord
Alexandra K. Acosta

Still Waiting

Well we are still waiting to hear from the BMT unit in Houston. My grandfather thinks that if it was a no go we would have heard something by now. We have many theories about why its taking so long. Financing, space availability, when they can start things, waiting to discuss with the rest of the team members, maybe waiting for a full report from rheumatology and other test results? The list can go on. In the mean time I continue to go for my weekly methotrexate infusions (or as I like to call it "lemonade" because its yellow) at Texas Oncology Seton-Williamson. Dr. CB (Cline-Burkhardt) and her staff are fabulous, I'm very lucky to have all of them. Each week the chemo is more difficult, but I know it will be much worse when I have the transplant. I have been trying to study for my GED a little bit each day, and keep my mind as occupied as possible. But its hard not to think about it. The chemo has caused my taste buds to change. I have been wanting breakfast foods like french toast and pancakes, and things with cinnamon, like cinnamon rolls, and apples and apple sauce with cinnamon. I also can't eat as much as I used to (which is not necessarily a bad thing), and I can't eat certain foods anymore. I get full so much more easily, and its definitely a learning process. Something that would be a normal size meal makes me feel like I ate 3x as much. On a different note, we have had some terrific news recently. Last Monday the 29th, my mother defended her dissertation for her PhD and is now officially Dr. Katherine Fugate. The fact that she has been able to accomplish this, having a sick child and a full time job is wonderful. I am so proud to call her my mom. Everyone else is doing well, and were just trying to to take each day one at a time and to "let go let God." In the meantime we will continue to live our lives, pray for some good news, and rely on each other and God for support. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Tests, Tests, And More Tests

Sorry I haven't posted in a while, things have been a little crazy around here, between my weekly chemo, my grandfather having an unexpected major surgery (he's doing well now), my mom preparing to defend her dissertation, and 3 out of 4 of us getting over a bad virus. 
But, things seemed to have settled down a bit. This passed Wednesday I spent the entire day wheeling around Texas Children's in Houston, in my electric wheelchair getting testing done, ordered by the BMT doctor. I had a 24 hour urine/creatinine study to make sure my kidneys are working, a pulmonary function test (PFT), chest CT, an echocardiogram, and several tubes of blood taken. All of these tests were ordered to make sure that my organs are functioning well enough to withstand a transplant, and to help the doctors determine what kind of protocol to use. Dr. Martinez (transplant doc) said that she and her team will review the results and other notes in their weekly meeting (which is on Thursday's), and then they will probably call me back down their to discuss a plan. Since my tests were done last Wednesday, and they wont get the results right away they will probably discuss them this coming Thursday, but who knows? My family as well as my oncologist and nurses here in Austin, take this as a good sign that they will be doing the transplant, unless something is really wrong with my organs, which is unlikely. I am just praying very hard that God will provide me with this transplant, this is the closest that I have ever been, and I hope it happens. I am trying to stay as busy as possible, studying for my GED, reading my Bible, and keeping my mind distracted, but you can't help but think about it. I have such wonderful friends and family that are so supportive, loving and encouraging, and of course I have God and my faith. I know that he has this divine plan for me and I hope that a transplant is part of that plan. In the meantime I just have to get through the waiting as patiently as possible, try not to get sick, and to stay as positive as I possibly can. I will post as soon as I have any news. Thanks for all the support!!!!


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Rheumatology Appointment At Texas Children's

Yesterday I had an appointment with a pediatric rheumatologist at Texas Children's Hospital in Houston. Luckily, this wasn't the same rheumatologist that I had seen a few years ago that told me I was crazy and had "conversion disorder." The meeting went smoothly. We spent two hours with him, and he was a very nice and thorough (a good combo when it comes to doctors). He said that he would like to order some blood work, he took x-rays of my hands, wrists, elbows, and ankles, he also needs to review my images and other tests from the past two years, I may need another MRI or other testing, but hopefully night. Once he reviews the testing he said he can hopefully figure out what "box" to put me in and give the transplant doctors his report and evaluation. The doctor felt bad about being put in the position that he is in, as he has not treated me the past few years, and the fact that he has only met me once. Ultimately, it is the transplant teams decision as to whether or not they will do the transplant. They want to make sure that they are not going to do any harm by performing a transplant. So the waiting continues. I will continue to get my weekly chemo infusions of methotrexate. I am just trying to take each day one at a time. I am praying to God that I will get this transplant, and that we will begin the process with in the next few weeks or month. God is truly my rock. I know that he is watching over me, and that he has plan for me. I know that if I just trust and have faith in him, I can be at peace. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Back To School...Not For Me

This time of year we see all the commercials, and advertisements for back to school sales on clothes, and supplies. Kids get ready for new student orientations, and start having to go to bed and get up earlier, in order to prepare their bodies for the school years. Teachers begin decorating and organizing their classrooms, preparing lesson plans and course syllabi. Parents are ready to get their kids out of the house and back in the classroom. And kids are both excited and nervous. Excited about seeing their friends, beginning elementary, middle or high school. Nervous about who their teachers will be, the workload, and the social aspects of school (will they like my new clothes, who will I sit with at lunch, etc...). All and all this is a busy time of year. For me its really weird. Even though I haven't been going to regular school since the beginning of 11th grade, it is still very odd. If I were healthier, I would be beginning my sophomore year of college, studying to be a Child Life Specialist. Instead, I am slowly studying to take my GED at some point in the future. A lot of my friends have gone away to college, and I really wish I were to. I'm not the only one who is having that "back to school blues", but my grandmother is to. She was a teacher for 44 years, and this past years she retired, due to her having some health issues of her own. She is now spending her retirement being my caregiver, taking me to chemotherapy, and doctors appointments, and just being a pillar for me. After being in the classroom for so long, its difficult for her not to be teaching, because it was her life. Each time we see one of those back to school commercials, we talk about how odd it is for us. For me, I feel so non productive. Although people tell me that I shouldn't be because I am so sick. I try and study as much as I can, but its so difficult when you feel so miserable. I know that my time will come, and by the grace of God, hopefully be going back to school this time next year. I try not to get discouraged or depressed about it, because that doesn't solve anything. I know that this is all part of God's plan for my life. I may not understand it, but I know there is a reason for it. We all must trust that God has a divine plan for each of us, and it may not be what we wanted, but it exists. As I see my mother preparing for her first year as the lead counselor at Del Valle High School, I see how it can be stressful for those who are going back to school, but in a different way. No matter what our situation is in life, we will always wish that it was different in some ways. The people going back to school wish they could be at home (minus the illness). We need to learn to accept the situation we are in and embrace it, because that is God's plan.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Books Books Books

I have never really considered myself a big reader, but lately I have been reading some books that have really helped me cope during this tough journey. I like to read a variety of things from christian, self help, to mysteries from Agatha Christie. But the past three books that I have just read were truly some of my favorites. They were:

• Why Bad Things Happen To Good People by Harold S. Kushner
• Purpose Driven Life by Rick Warren
• Journeys Of Hope: 30 True Stories Of Faith In Adversity collected by Allison Gappa Bottke

These three books really helped me to be able to deal with my chronic illness and a different way, and also helped me to see the role that God and faith played in that journey. There have been so many different emotions that I have had during this process, that I sometimes haven't been able to see things clearly and rationally. Lately there have been numerous instances where I have questioned God and my faith, and have come very close to cursing God. These books have served as a source of inspiration for me. I have begun to understand that God has not done this to spite me, and that these things haven't happened to me because I wasn't praying hard enough or the right way, or because I wasn't reading my Bible often enough. I try and read my Bible every day, and pray at least once day. I used to think by doing that, and by doing everything the way God would want me to, that he would reward me with a Bone Marrow Transplant. Its like if you study hard enough you get straight A's, or if you did all your choice you would be rewarded with a new outfit. I started to realize after reading these books that it doesn't way. I also came to realize that my illness is part of the laws of physics, its an occurrence in the body that just happens, not something that God can control. 

Its wonderful that these books were able to teach me such important lessons, and were able to help me in such a positive way both spiritually and not. People always stress the importance of reading. I am now trying to read everyday, not just because I have to for studying but just because I want to. But these aren't the only books that I have loved. I am currently more than 80% done with the book The Help, and I absolutely love it. Reading can provide such a wonderful escape. It helps me to clear my mind and get a new perspective on things. And with this roller coaster ride I'm on, I can use any escape I can get. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Appointment At Texas Children's

This past Monday I had an appointment with the BMT doctor at Texas Children's Hospital in Houston. I was very nervous going into the appointment, but after meeting the doctor they subsided. Dr. Martinez, was absolutely wonderful. Her plan is to do an Autologous Stem Cell/Bone Marrow Transplant (where they use my own stem cells or bone marrow). She agreed that this was pretty much are only option left. Before we can start there are protocols that need to be followed. She needs to have a meeting with her colleagues to make sure they are all in agreement and develop a more specific plan (since transplants aren't usually done for people with my condition. She thinks they will agree with her on me having the transplant. Part of the protocol includes me having to see how well my heart, lungs, and kidneys are functioning to decide whether or not to use radiation. I also have to see one of the rheumatologist's there. When I heard that I got an odd feeling in my stomach. I started having flashbacks from several years ago when I saw one of their rheumatologist's, Dr. De Guzman. She told me that my problems were all in my head and that I basically needed to see a psychiatrist. Later on I found out that she had said these things to some other kids in my chronic illness support group. When I told Dr. Carrasco and Dr. Patel about her, they new who I was talking about, they were being professional and didn't say anything negative about her, but you could tell that they weren't very fond of her. Dr. Martinez had never even heard of her, and Dr. De Guzman is one of the chiefs of pediatric rheumatology there. She says there are two other rheumatologists she likes working with. 

One of the main reasons I was nervous about seeing the rheum doctor, other than them thinking that I was crazy/it was all in my head, is I didn't want them to tell me go and try this treatment and other things like that, and I didn't want them to disagree with Dr. Carrasco's diagnosis. Dr. Martinez says that the rheumatologists will not be deciding if I get the transplant, and that made me feel better. And of course insurance needs to approve it. There is an article that has statistics for stem cell transplants in patients with autoimmune diseases, and she will be writing a letter for why she feels the transplant is necessary. My grandfather, mother, and I got the feeling that she will do everything she can to get me the transplant. In the meantime God and the Bible is whats keeping me going. I pray every day, and try to read the Bible every day. I am particularly reading versus that help me with being worried, discouraged, and anxious. I know that God is with me and watching over me. Its difficult to feel so miserable day after day, so tired and in pain. On a good note though, the pulmonologist said that I have no lung disease, and my heart looks good, so the disease is not affecting my lungs, and that I don't need the oxygen at night, but if I feel I need it for exertion I can use it.

You know, it seems as though almost every day I feel like just staying in bed and sleeping because I just feel horrible. But I keep on getting up every weekday at 7:00 AM (8 o'clock on the weekends), and I get dressed and everything. I thing God is what is giving me the strength to do it. I know that I have to have a routine, People ask me why do you go out if you feel miserable? Why don't you just  stay in your pajamas and sleep? I am not going to feel any better at home or sleeping all day. To most people my days seem non productive. Its extremely hard to study, but I do the best I can. I try to take each day one at a time knowing that I have the support of my loving family, wonderful friends, and of course God. I thank everyone who has taken care of me, visited me in the hospital, and is just here for me when I need to talk to someone. I am so blessed, and thankful for my life, because even though I am very sick, I have more than most. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Insurance Insanity

I know that insurance companies are important and necessary in regards to healthcare in our society. Although I am very grateful that I have insurance I am currently very aggravated with them. As you know I am in the process of trying to meet with doctors at Texas Children's Hospital in Houston about the possibility of a Bone Marrow Transplant (BMT). The doctors have agreed that I can go down there for a consultation but we are now waiting to hear from the insurance company. According to the financial counselor at the hospital, the insurance company does not have a problem with me going to meet with the doctors for a consultation, but they are waiting to hear whether or not insurance will pay for the actual transplant. They don't want me coming for a consult unless they know insurance will pay for a transplant. What could be a snag with insurance is that they have to decide whether or not a transplant could be used to treat my diseases, with my particular diagnosis. As you may know my conditions are not really treated with a BMT because the medications they have to treat them are so effective, that transplants are so rare to treat them. According to the insurance company my case is still in review. Its so upsetting that a group of people who have never even met me, are not my physicians, and are just reading a few things about me, are the ones who get to choose whether or not I can receive a transplant. It just makes me so mad that I want to scream. I know life isn't fair but his is just truly unfair. But meanwhile I am sitting hear with immense fatigue, a lot of pain and weakness, and using supplemental oxygen. I am just waiting and waiting, it feels as though nothing is happening, even though it is. In the meantime, I am praying every day that insurance says yes to a BMT, and that I can get an appointment in Houston. My faith in God is the main thing that is keeping me going. Patience is something that I am running low on, but I know that with prayer and a positive attitude I can get through this. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Object Of Attention

Yesterday I went to see my primary care physician Dr. Meyerson, because I have been having some difficulty breathing despite using my inhalers and other medications. The doctor ended up prescribing supplemental oxygen during the day, for when I am walking from like the house to the car or into a restaurant and pretty much when I'm out and about. As you can imagine I wasn't happy and was pretty surprised, although my mom and grandmother were not. This was just another sign of what the disease was doing to my body.  I was/am angry and upset. One of the reasons that I am so upset is because of all the looks that I get when I go out in public. I'm bald, use a walker/wheelchair, and am now on oxygen. I feel as though I have the word sympathy stamped on my forehead. Being a 19 year old female, appearances are everything. I try to ignore it and "get over it", but I just can't. I know that there is nothing I can do about the way people will react, but I can control how I respond. I need to keep my head held I, and know that my illness does not define me. I know that I am strong, and that my faith in God will help me get through this, and make me even stronger. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Getting Away

A week ago yesterday we left to spent three nights in Port Aransas. My grandfather had a conference in Corpus Christi, so while he and my grandmother were there for the conference, my mother in I were relaxing in Port Aransas. Unfortunately, I was not able to actually go to the beach because we couldn't get my wheelchair there. But I was able to see it up close outside of my grandparents hotel in Corpus. Feeling the breeze, smelling the salty air was so peaceful and relaxing. The hotel we were at in Port Aransas has a wonderful pool, and I enjoyed relaxing in the sun by the pool drinking a virgin Pina Colada. And the seafood was delicious. I had shrimp everyday, sometimes even twice a day. Just a few days before we left, I had gotten the news about meeting with the BMT doctor in Houston, so the trip came at a perfect time. It was a place where we could get away from all the stress, and not worry about doctors appointments and treatments. When your sick and have a difficult time getting around, going on trips that aren't for medical purposes are a big treat. We all need a break every once in a while, whether we are sick or not. I enjoy getting time away to relax and just be "free". I thank GOd for the beautiful things that he he has created for our enjoyment. I know that life is meant to be enjoyed and we should enjoy it to the fullest. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Pleasantly Surprised

Yesterday I had an appointment in San Antonio with my Oncologist Dr. Patel. I have to admit I was pretty nervous because when I saw my rheumatologist Dr. Carrasco about a month a go we were under the impression that they were not going to do a sub-ablative autologous stem cell transplant, and instead they were going to do the HiCy treatment (the maximum dose of Cytoxan over a 4 or 5 day period). When I heard that I was crushed, something in me told me that I shouldn't do that treatment, so the time leading up to the appointment I was going crazy, having all these fears and anxieties. When Dr. Patel walked into the exam room he greeted us and handed my grandfather a piece of paper and said, "that is the name and phone number of the transplant coordinator/doctor at Texas Children's Hospital in Houston." My first thought was transplant doctor? I had pretty much given hope on a Bone Marrow Transplant no longer being in option. He said that he had talked to this doctor in the BMT unit, and she really wanted to meet me to see if I would be a good candidate for a BMT. We had thought that a transplant was not an option due to protocols, but Dr. Patel said that protocols should not be an issue. Of course after receiving this new my grandfather and I were pleasantly surprised, after we left I couldn't (and still can't) stop smiling. I am trying not to get my hopes up, but my grandfather says its OK if I do.They have to get insurance approval before I can schedule an appointment, so I am just praying that insurance is not a problem. In the mean time Dr. Patel has pit me on 20mg of injectable Methotrexate a week to help keep me as stable as possible, and of course I am trying not to constantly think about it. I need to stay in the positivee. My mom and I will be spending three nights in Port Aransas, starting this coming Sunday while my grandparents are in Corpus Christi for a cofference. Its nice that we will be able to have some time to get away and relax before having any treatment. Both mom and I could definitely use a break. I know that whatever happens in regards to my treatment, it is all  in God's hands and I need to let go let God. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

The Importance of Diet, Healthy Eating & Exercise

One of the things that the doctors have been telling me since I was diagnosed, is how important diet, healthy eating, and exercise is. For every extra pound that you have that is 4 extra pounds on your joints. Before I got sick I was pretty active, I played basketball for a local league and I was pretty good. I worked out at the gym, and tried to eat healthy when I could. I wasn't thin, but I wasn't morbidly obese either. When I became sick, due to the incredible pain, and the fact that I couldn't really move caused me to gain weight. I had tried diets such as Jenny Craig, but then I had to stop doing to the food having preservatives, and I gained the weight back and then some. When I finally go diagnosed I was put on steroids because the inflammation was so bad. At one point I was taking 1000 mg of IV steroids every week for several months, and was on 60 mg of oral steroids daily. When the doctors tried to lower the steroid dosages my inflammation would get really bad and they had to increase it again. I have literally gained 100 pounds due to steroids. While on them I had side effects such as hot flashes, weight gain, and cravings of foods (particularly salty foods) which added to the weight gain. I couldn't really do any exercise, so the only way I could move and get any (exercise) was physical therapy on land, or in a heated pool. I loved being in the heated pool it felt so good on my joints. I had try different ways of eating healthier, from a gluten free diet ( which my doctor endorsed, but had no benefit so I had to stop), and meeting with a nutritionist. I had lost some weight here and there but gained it back during flares, and since I was on the steroids, that made it even harder. It was also difficult because there are times when I had such bad sore in my mouth that I could only eat soft foods such as ice cream, pudding, milkshakes, mashed potatoes and other soft foods. I lost some weight while on chemo, and I haven't gained it all back. I am still on steroids but not as high a dose as before (Im on 7.5 mg orally), but my doctor wanted to see if it could be increased a bit to help with inflammation while were waiting for a treatment plan. I desperately want to lose weight and I have made several unsuccessful attempts to do so. Right now I am trying to make better choices with food, particularly when eating out, and I am trying to watch my portions. Many of the other diets such as Atkins or South Beach have induction phases that don't let you eat cheeses, certain fruits, and carbs. I can't do those because while you lose quite a bit in those 2 week induction phase, they not only burn fat, but also you lose muscle. Because I have a degenerative disease which causes muscle inflammation and weakness that is not good for me at all. I am not eliminating carbs completely, but I am cutting back, and choosing healthier carbs, such as fruits vegetables, and whole grains.

Because my immune system is so week I can no longer do physical therapy at a physical therapy gym, and can't use their heated pools. I have to have a PT and sometimes an OT come to my house, and work with me on  gentle exercises that I can do to help me keep moving as much as I can and keep my range of motion (ROM). I have been trying to do the exercises daily, because my condition is so poor, and I have been declining they are very difficult to do. I frequently have shortness of breath, joint pain, stiffness, swelling, and muscle weakness after I do them. Im trying as best as I can to do them so that I can try to keep moving as much as I can. 

Being a very spiritual person, I try to live my life the way that God wants me to. When it comes to my body, God and the Bible says that it is a temple. With that said I need to nourish it with good things, and try to exercise and move it as much as I can. Its hard for everyone to eat healthy and exercise all the time and keep our body in good shape. It is something thats very important, whether you have an illness or not. But when you have a chronic illness its even more important to keep our bodies as healthy and possible. I know that it is very difficult for me to do that with my illnesses. I just have to take it one day at a time and know that I am doing the best that I can to take care of my body and do good things for it. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

The Importance Of Friends

The past two weeks I Have gotten together a couple of times with a very good friend of mine that I have known since second grade. We have gotten to catch up (he goes to school at UT in Arlington), and last Sunday we were out until about 1 o'clock in the morning after having coffee and seeing a movie. He is just one of the friends that I have that has been there for me since I got sick, and has even defended me to other people who didn't know why I had to leave school. Having friends and family as a support system is extremely important when you have a chronic illness. The friends that I have are very understanding of my condition, and see me as more than just a sick person. They don't treat me any different as they do there other friends, but they also help me when I need it they sometimes help me push my wheelchair and things like that. Since most and soon to all of my friends have moved away for college, I mostly get to talk to them through Facebook, texting, and on the phone. But even though I don't get to see them frequently (except on breaks and over the summer) they are still there for me. I thank God for the friends that I have. They are so wonderful and amazing. In my situation I have to be very careful of choosing friends. One of the main thing that I love about my friends is that when I'm with them they make me feel as though I'm not sick. They ask me how I'm doing but they don't obsess or constantly talk about my illness, if I bring it up or want to tell them something about my treatment there open ears. I think having good friends is an important thing in life whether you have an illness or not. Knowing that you have friends that are there for you, make you laugh, and listen to your problems is something that is special and precious. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Helping Those In Need

I believe in giving back as much as I can, doing volunteer work and helping charities. Due to my current condition I  am not able to be around people a lot so my chances to give back  usually involve making monetary donations, which is still a wonderful thing. There are four organizations which are dear and near to my heart. The Arthritis Foundation, The Spondylitis Association of America, The Myositis Association, and The Make-A-Wish Foundation. I am asking you and your friends to make a donation and perhaps get involve with these organizations. By donating to the Arthritis, Spondylitis, and Myositis associations/foundations, you will help fund research, and possibly cures, as well as improve the lives of those affected by these conditions. Millions of Americans live with the conditions, but most people have never heard of them, yet they can be very devastating. These three organizations are important to me because I live with these conditions everyday, and I can't wait for the day when I and other people can live a pain, limitation free life.

The Make-A-Wish Foundation is a wonderful organization that grants wishes to millions of children, and gives them something to look forward to while dealing with a chronic or life threatening illness. Just before my 18th birthday I was given the opportunity to have a wish granted by the foundation. I had previously wished to meet the people of Fox & Friends morning show in New York, and although they did not no the were lagging with a response, so I decided to change my wish. My new wish is to be able to meet the cast of the hit TV show NCIS and see where they film it in Los Angeles. NCIS has granted wishes before and apparently are great to work with, they said I will find out more about the trip when they begin filming in the fall. Having this wish to look forward to is something that has made my treatments, hospital stays, and the days when I feel miserable and can't go on a bit better. Knowing something that is a once in a lifetime opportunity will probably happen, is a light at the end of a tunnel. Doctors and other healthcare professionals have sad that having wishes granted by the foundation is both emotionally and physically beneficial. It gives the child a reason to hope and gives them something wonderful to look forward to. It also allows parents to see there child happy and having a smile on their face amid a usually dark time. 

I know that due to the economy right now money is tight. But once again I encourage you, your family and friends to make a donations or get involved in these organizations. You could be helping millions of adults and children who could really benefit from what these organizations offer. Even a small donation, or just a little bit of your time can make a big difference. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

The Waiting Game Continues

This past Thursday I went to visit my Hem/Onc doctor in San Antonio. He told us that the plan is for me to have a sub-ablative Autologous Stem Cell Transplant. Sub-ablative means they won't completely wipe out my immune system they will only wipe it out like 98%. They have dot all their i's and cross their t's, so we will hopefully know in about a month whether or not we have the go ahead to begin the process. If they are able to do it, they will collect my stem cells, give me high doses of chemotherapy (not quite at the transplant dose) and then re infuse the stem cells back into me. In the meantime I have stopped my cytoxan and oral chemo and we will wait to hear from the doctors. Its hard to just sit hear and wait, but I know thats what I have to do. I will just need to be patient and leave it all in God's hands. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

The Good And The Bad

Sorry I haven't written in a while, I have just been tired and busy with appointments, treatments, and seeing friends. Anyway, a lot has happened since I last posted, both good and bad. But I'll start with the good. About three Saturday's ago I got to go to my dear friend Caitlyn's Senior Prom with her, and we had a blast. I met Caitlyn a few years ago at y support group for kid's with chronic illnesses, and we immediately hit it off. Not only do we both understand what its like because of our illnesses, but we have a lot in common besides that. She is a year younger than me but we don't care, and because she also is an only child we view each other as pretty much like sisters. Its also nice because our mom's our good friends and they can have someone that understands what its like to take care of a chronically ill child. Lets get back to the prom. So Caitlyn invited me to go with her because since I wasn't able to go my senior prom since I couldn't go to school she thought it would be fun to go with her. We were each others "dates." She goes to a private Christian school and there are only about 14 kids in the senior class so the prom is for all the high school students. All 4 high school grades make up the size of 1 senior class they may even have fewer kids. Before the prom me, Caitlyn, her mom and my mom went out to dinner at an italian restaurant and then headed to the prom at the Marriott in Horseshoe Bay. While we were at the prom our moms went out for a margarita and coffee. The prom was fabulous I knew a few of Caitlyn's friends and I met many more. Everyone was such open arms, they told me that Caitlyn told them all about me and how she admires me, it was so sweet, it just reaffirmed want a true friend Caitlyn is. After the prom we went back to Caitlyn's house watched TV for a bit and then went to sleep. The next morning we went to breakfast and just had girl talk (mom's included). The weekend was a blast and it was such a fun memory, and now I can say I got to go to the prom. 


Now for the bad. The Tuesday after the prom I ended up in the ER. What happened was, I had gotten up to go get my GED workbook, and my foot had fallen asleep from being swollen. I had gotten up to try to walk on it with my walker to wake it up the first step I took, my foot rolled, and I could hear and feel it pop. I screamed from the pain and my grandmother came rushing in. Now I have broken about 7 or 8 bones so I know the difference between a sprain or something fractured/broken. My foot immediately swelled to twice its size and my grandfather came home and took us to the ER. The doctor who first came to see me was just about to leave because his shift ended but he wanted to examine me before he left. He said that because of the way it rolled that it most likely was broken and he had seen the similar cases before. They did an X-ray and a new doctor came in and said it wasn't broken so we were relieved. However a day later it started to bruise and swell more and was getting worse and my home health nurse decided to take a look at it and said I needed to go get it checked by an orthopedist because there probably was a hairline fracture. So on Good Friday I went to see the orthopedist who has treated both my mother and grandfather. He took a look at the X-rays and my foot and thought it was a bad sprain, he then said it could be a hairline fracture and if it is it is so small its hard to see on the X-ray. He ended up putting me in a walking boot cast and said come back in three weeks and they'll do more X-rays. On top of that same week I came down with a bad cold and had to be put on antibiotics but luckily I was well enough to goto church on Easter. Then last Monday I had chemo and have been feeling miserable from it. My oncologist here in Austin is concerned because my muscles and joints are getting worse and she is concerned and almost didn't give me my chemo, she said i didn't look good. I got to San Antonio to meet with Dr. Patel on the 26th to discuss possibly a new treatment plan. They don't know what to do because the chemo has helped the lesions on my SI joints from the AS but it hasn't helped my RA or myositis. I am nervous about what's going to happen, but I know that it is all in God's hands and I need to have faith in him. I'll keep you all posted and try to blog more frequently. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Leading A "Normal" Life

For the past couple of weeks I have been working with an OT who comes to my home. He has been teaching me exercises that help to keep me from losing muscle strength, and to slowly help me increase my strength. We also work on things such as ho to conserve energy and to learn how to use adaptive tools to help me live a normal life. One of the things that we were talking about is how my grandfather wants me to live a normal life and be like any other 19 year old. I want that as well but my OT says that my normal will be different then his idea of normal. For people who live with a chronic illness or a disability our version of a normal life is different from that of a person who isn't in that situation. We learn to adapt to the world us, how to cook and make our own food, how to get around buildings so we can work, go to school, or go out, and how to take care of personal hygiene. Sometimes it can be more difficult than it would be for a healthy person, and sometimes we have to use tools or devices just to get through a day. But, just because we do things a little differently doesn't mean we are not leading normal, happy lives. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Infertility and Chemo

Being on chemo has many risks, one of those risks is infertility. different chemo drugs have a different risks of making someone infertile. The particular drug that I am on has a high risk of making me infertile. When I started my treatment I new that their was a chance of infertility but I didn't know how much of one. I recently saw a fertility doctor to see about what I could do to preserve my fertility. Due to the fact that I have already had 6 treatments my ovaries have already taken a hit. A woman of my age usually has between 10 and 20 follicles I only have about 5 or 6. The doctor than developed a protocol where today, I will begin to take hormone injections, as well as the oral medication I started on Friday to stimulate my ovaries so that I can have my eggs retrieved and then frozen. I will need to be on this medication for up to 14 days. There is a chance since my ovaries have taken a hit from the chemo that the stimulation medicine wont work and they cant retrieve any eggs. But we are hoping that is not the case. Please keep us in your prayers, and that I am able to save and preserve my fertility.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Losing A Friend

Last Saturday I received some very sad news that a dear friend of mine passed away from a lifelong battle with Cystic Fibrosis, he was only 21 years old. He had a lung transplant earlier last year and had been doing well and then started going into rejection but was stable, then in December before Christmas he ended up on a venelator in the ICU, doctors said his only hope would be another lung transplant, but he wasn't strong enough. His mother had to make the decision of turning off the machines. However, he woke up and said he wanted to fight, the doctor said that it was a miracle that he woke up and he had not seen anything like it in all his years. Still on the venelator he was number 1 on the transplant list. Sadly he eventually said he no longer wanted to fight because he felt that the chances of recovering were very slim, and he wanted somebody else who really needed a pair of lungs to get them. He bravely chose to die peacefully with his mother and brother by his side. 

Finding out that he passed was very sad, but I was happy that he was no longer in pain and he was now home with God. My friend had always been an inspiration and a beam of hope and courage and he will be greatly missed. I sometimes ask myself why good people like him have to die, but that maybe something we can't explain. We must accept that God wants us all to eventually come home, whether we as individuals or our families our ready. Everything happens for a reason.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Going Past The 3 Month Mark

When I started this 18 month long treatment, the doctor said that at about 3 month mark they would have to evaluate my progress to whether or not to continue with the treatment or go on to something else. Well I am pleased to say that I made it past the 3 months and this month will be my 6 month of treatment (give or take). According to my test results my SI joints look really good, which means the chemo is working. I still am having challenges with pain, swelling, and stiffness in my joints and still have difficulty walking. I am working and fighting very hard each day to get better and get back to having a normal life. I still have about a year left of treatment, and I am planning to get through it will all the strength I possibly have. I know that I could not have gotten this far without the support of God, my family, friends, and my medical team. I know that each day is a new day and I am thankful that God has allowed me to be able to continue to live each day to the fullest. 


Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta

Sitcoms For The Sick

Being home quite often, and having days where I just can't do anything because I feel so miserable, I try to find different things that will cheer me up. One of those things happens to be watching sitcoms. Some of my favorites are a bit older such as the Golden Girls or the Nanny, but i also like watching the more recent ones such as Still Standing, Reba, Will & Grace, and The New Adventures of Old Christine. Watching these shows provides me with a sense of common relief and often perks me up. My grandmother always tells me to watch something funny so that I don't have depressing and negative thoughts, and watching sitcoms is a way for me to do that. It doesn't even matter what the subject of the episode is, as long as I can get a good laugh out of it. So if you ever find yourself in sad or depressing mood, sick or not, turn on a sitcom. You may think the episode is completely pointless, but I can guarantee you that something in the episode will give you a good hard laugh and perk you up. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

New Years In The Hospital

Sorry I haven't posted in a while things have just been a bit crazy. The new year for me did not start out very well. Over the past  month my right hip has been bothering me very much and for a while I thought I could just continue taking my breakthrough medication to cope. When I went to visit my pain management doctor last Tuesday he added Percocet as a new breakthrough medication. However it didn't work, and then hospice tried to tweak with my meds. My pain got so bad that they finally told me to go to the ER, and I was admitted early Saturday evening. The doctors and even my rheumatologist who was on call thought it was the AVN that I was told I had in both hips. The MRI was a bit fuzzy so it was hard to read. I was given IV Dilauted, and Roxycodone for the pain, and IV Benadryl, because the Dilauted caused itching. On Monday the orthopedist came buy and said that the AVN that was there in August of 2010 had healed itself, which was a relief, because it meant that I didn't need surgery. He was puzzled by wht could be causing my pain, so he wanted my rheumatologist to take over. Luckily, Dr. C had a pretty good idea what the problem was after learning that the AVN was gone. He suspected that pain from my Sacroiliac (SI) Joints was causing the pain in my hip. Pain in the lower back can radiate into the hip causing the patient and the doctors to believe that the pain is originating in the hip. Dr. C then said he wanted my SI's and hip to be imaged at an imaging center outside of the hospital. He wants someone to come do PT with me at home due to the fact that my immune system is to weak for me to do physical therapy at a therapy gym. After the new MRI's are done we will be able to isolate the problem and make me comfortable. I was released yesterday and am glad to say that I am now home, and doing better, though I am still in some discomfort. 


I also went to San Antonio to see my Hem/Onc doctor there. My blood tests show that my white blood cell count is low, which means that my actual bone marrow is suppressed, this means that the chemotherapy is working. There is some improvement in my joints so we will continue with the 18 month treatment plan. My blood clot is also 1/4th the size that it was, so that means that the blood thinners are working. Hopefully, I can get a Port-O-Cath inserted soon, so that I can get the PICC line removed from my arm, but we may have to wait until the clot improves even more. All in all I would say that there have been ups and downs, but my family and I keep chuggin along on this roller coaster of a ride. I hope that this new year will bring good new things both with my health, and life in general. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta