Remembering September 11th

Today we remember the tragic events that occurred 14 years ago on September, 11th, 2001. The events of that Tuesday morning will always play over each anniversary in the minds of Americans. Even though I was only in the third grade at the time, I can still remember that day and the following events that occurred. I remember I was sitting in the classroom of one of my 3rd grade teacher's, Ms. Pounds. She received a phone call from her father telling her about what was going on, and she turned on the television and we began watching it. Of course me and the other kids did not realize what was going on and didn't understand the magnitude of what was going on. The principal came on and said to turn off the television's but it was hard to. The rest of school went on, with teachers trying to keep classes normal. I remember on my way home from school with my grandmother telling her about what happened, of course she already knew, but the magnitude about what happened was not really talked about. To a third grader like me, it was just something sad that happened, I didn't understand the severity of it. I remember that as my family watched the news for the next week the images that were played on the screen. The fire trucks rushing by, people running covered in ash completely white. I vividly remember a news special about the missing of 9/11 and one woman her story I remember. Her son or daughter was about my age, and they showed her picture and didn't know what her fate was. Each year on the anniversary of 9/11 I always think of her and her family. Was she found, what has her children's lives have been like since the attacks?  I wonder each year on September 11th.

I remember shortly after the attacks flying to Houston one weekend to visit my dad's family, and then San Francisco with my grandparents a week later. No one wanted to fly, the airports and planes were completely bare. Security at the airports was a lot more tight then before 9/11, there were armed guards there as well. I remember that after September, 11th you would have to get to the airports much earlier because it would take like an hour and a half to get through security, and it wasn't like that before 9/11.

As I got older and became more secure in my Christian faith, questions like how could God let this happened? started to get asked. I know that God didn't let this happen, He doesn't want to see His children harmed. The events of that day were an act of evil. Questions like this will always arise after tragedy's like the one on 9/11 and we may not be able to answer them.

The day of September, 11th will always be remembered in the hearts of Americans, and the world. Today and each year on the anniversary of 9/11 we remember the lives that were lost and the men and women who bravely gave their lives. There families have sacrificed so much as well. They will all be in our hearts and minds forever. Not just on this day, and every anniversary of September ,11th 2001, but every day.

God Bless

Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Girls Getaway

Last weekend one of my best girlfriends and I went away for three nights to Houston, and had a fabulous time. This was our second trip (last year we went to San Antonio), and we are planning on making this an annual thing. We stayed near the Johnson Space Center, so that we could easily get to things to do in Houston, as well as to be able to get to Galveston. The first day we were there we went to the Galleria, which was fun and spent the day walking around, doing some shopping, going to the Cheesecake Factory and just having fun, and drove around Rice University (where my friend's sister graduated college), and looked at some of the beautiful campus, and also the houses nearby. That evening we went to the Kemah Boardwalk, walked around and has dinner at the Kemah Aquarium which was so much fun. By the end of the night we were tired, but it was good. The next day we drove down to Galveston, and drove along the Seawall, and walked around historic downtown Galveston, and visited some fun little beach shops which was fun. We then went over to the Rainforest Café, where we did there River Adventure Ride, which is supposed to be like going through the Amazon River or a river in Africa, and then had lunch there. We went to the Rainforest Café in San Antonio last year, and decided to go there each year if there is one. We then went over to a little French bakery in Rice Village and met up with a friend of ours and had coffee and dessert which was fun. Then we just spent the evening back at the hotel and watched movies. We left on Monday, walked around the outlet mall outside of Houston for a bit, and then of course had to stop at Bucees on the way back home (we also stopped there on our way to Houston).
      We had an amazing time and it was so nice to get away for three nights, and to just be able to relax and have fun with an awesome friend. With everything I am going through right now, a little getaway was definitely needed. I am so  glad that I have a friend, that despite all the challenges I have, and the difficulty I have with being able to travel, that she is still willing and wanting to go away with me, and just to help me feel like a normal 22 year old. I am so blessed to have the close friends that I do, and going on this Girls Getaway is just another reminder of that. I think that its important for everyone, especially those with chronic illnesses, to getaway a bit at least once a year, if at all possible. It helps to be able to leave the stress that you have behind, and to just relax , recharge, and get refreshed. It was something that I definitely needed, and I think we all need.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Finding My Purpose

I know it has been quite awhile since I last blogged, but there has been a lot going on. While dealing with various different stressors in my life, and also seeing my friends graduate from college and start new chapters of their lives, I have been wondering what my purpose is in life. My illness has taken away my ability to do many things, yet I still have the heart and desire to do the same things I have always wanted to do, maybe even more so, yet I don't have the physical ability to do it. This has caused me to have queestions about, what is it that I can do, not only physically, but that can also include the things that I love. Finding this balance is not an easy thing to do. My ultimate dream has been to work as a child-life specialist at a children's hospital, but that is something that right now is not possible. I love working with kids, but that is not something I am able to do with my weakened immune system. I know that God has a wonderful and miraculous plan for my life, but while experiencing so many difficulties, it can be hard to remember that.
      Jeremiah 29:11 says, "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. " This is one of my favorite verses, because it helps me to know that God only has good and wonderful things planned for me, and that as His daughter, He wants me to have a life that is prosperous and filled with hope. But when going through difficult times, it can be a challenge to remember this. We beging to think, that how could God let us go through these difficulties if He wants us to have good things? He doesn't do it to spite us, but so that we can trust and rely on Him. We have to, because if we don't, we will not be able to live that prosperous life. Only trusting and relying on Him completely will enable us to have that prosperity. So when I start to wonder what my purrpose is in life, I think of Jeremiah 29:11. When I read that verse, I know that I do have a purpose in life, we all do. And even though I may not know at times what my purpose in life may be, I know that because of my faith in God, my future will be bright and filled with so many blessings. And that, gives me comfort.




Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Happy Easter

 Sorry I haven't written in a while, things have been a bit crazy. This weekend is Easter, and is one of my favorite holidays. Not just because its such a bright and colorful holiday, which is a plus, or because of Easter eggs, chocolate bunnies, and other stuff, but because we celebrate the crucifixion and resurrection of our Lord and Savior Jesus Christ. One of the things I love about Easter, is because it helps me to remember that God sent His only Son, who was sinless, to take all of our sins upon Himself, and endured unbearable pain, so that He can take our sins upon Himself and pay the ultimate price. As John 3:16-17 says, "For God so loved the world, that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life. For God did not send His Son into the world to condemn the world, but to save the world through Him." Its a reminder of how much God loves me, and that gives me such comfort and peace. God not only loves me, but everyone of us, and the proof is in the death and resurrection of Christ. To know that all of our sins have been paid for by Him, is amazing. I am not only reminded of God's love for me on Easter, but on everyday of my life. His love for us, is clearly evident in the numerous blessings He has bestowed upon us. I wish everyone a Happy Easter, and hope that this Easter, we all remember how much God loves us, by the fact He sent His only son to pay the ultimate price for our sins.

 

HAPPY EASTER!!!!

 

 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta

Last Infusion

 Yesterday was my last Rituxan infusion, I had one every week for 4 weeks in a row. I haven't noticed yet if there are any improvements, but my doctor said it could take up to 6 months to know whether or not its working. After not being on any treatment, except doses of prednisone, I was very glad to be able to start a treatment protocol. I have not had any unpleasant side effects with these treatments like nausea, vomiting , or hair loss. I'm just really tired for a few days after the infusion, but I am used to dealing with fatigue on a daily a basis. Now that I have had my last infusion, my lymphocyte levels will drop which means that I will be more susceptible to infection. My doctors have been toying with idea of giving me this medication for the past couple of years, but because I am so vulnerable to infection, and have gotten such unusual ones, that they have not been wanting to give me the medication. But they have been running out of treatment options, so we decided to do this one, hoping that it will slow down the disease process.

 

Right now I am just trying to take things day by day. I have finished my first semester of my Earth Science class, and now I am ready to start my second semester. I am really enjoying the class, and it gives me something intellectually stimulating to do each day. I can ultimately say that if I didn't have my class to work on, that I would be bored out of my skull. There are some people who think that being home everyday is fun, but if you don't have anything to do like schoolwork, you will get bored in a few days. I am hoping that in the next few weeks that I will start to feel some improvement. In the mean time I will keep chugging along, and continue to trust in God, and have faith knowing that He is looking out for me, and everything is in His hands.

 

 

 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta

Finally A Treatment

 I haven't posted in awhile, since things have been a little crazy. Some of it has been a good crazy, because I am finally on a treatment, the first time since October or November. The treatment is called Rituxan. Its an infusion that I receive every week for a month, that is about 4 to 6 hours. The medicine suppresses the B cells, or lymphocytes that are a key component of the immune system that are produced by the bone marrow. The Rituxan will suppress them for 9 to 12 months. The goal is to suppress my immune system so that it will slow down my disease process. It will be up to 6 months before I will notice if the treatment is working. The first infusion went well, except for a minor reaction where my throat started becoming soar and feeling tight. The nurses quickly administered Benadryl and Solumedrol, and the reaction was under control. The nice thing about this treatment is that it does not cause nausea, vomiting, and hair loss like chemotherapy does.

     After not being on any treatment for several months, it is nice that I have finally been started on a treatment. It is still very frustrating because I am still having an increase of symptoms; joint swelling stiffness, heliotrope rash, muscle weakness and fatigue. It is extremely frustrating that I have had one treatment and have not noticed a different. Even though logically I know that I wouldn't, I still wanted to notice a difference. It is really hard that I am having an increase and symptoms and feeling cruddy. I am continuing to work on my Earth Science class, and that is something that has helped me to be able to continue to do something that is intellectually stimulating and to have a routine.

      I still do not have a rheumatologist, so our next step is to appeal to the Children's Hospital to allow me to stay with Dr. C since no other rheumatologist will take me. Not having a rheumatology visit scheduled my whole family feels as though we are in limbo, and as though I am in limbo. I am continuing to pray and trust that God is with me and my family during this difficult time, and He will take care of everything. That helps me to have peace of heart, mind, and soul, and that provides great comfort.

 

 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta

Stress Stress Stress

Sorry I haven't written in awhile, but my family has been under a lot of stress since before Christmas. My grandmother had her second shoulder replacement on December 17th, and ended up developing lymphedema. To deal with that, she had to go to a lymphedema clinic everyday to get wrapping done, and have a machine at home that she needed to use two hours a day. They said the problem would be lifelong. In addition, over the winter break, my grandfathers knee had been bothering him more and more (a problem he has had for years). We have been trying to go to the orthopedist for years, but he has a high pain tolerance, and generally ignores it, but it finally got to a point where he couldn't ignore it and went to our family orthopedist. The doctor took one look at the x-ray, and it was just bone on bone, no cartilage, tissue or anything. All the sudden he was scheduled for surgery on my birthday. He was hoping to put it off until the summer, but couldn't. I had my carpal tunnel surgery a week or two before his surgery, and mine went well. The Friday before my birthday on the 28th, my grandmother went to a post surgery follow up with the surgeon, and we found out the joint came out of socket, a very rare complication, that the doctor felt could have possibly been due to the lymphedema treatments. That day he put her to sleep, and tried to adjust it back into place, but couldn't. So the following Monday, two days before my grandfather's knee replacement, my grandmother had surgery to put the socket back into the joint. We thought she was going to be there only one night maybe two, but she ended up being there four nights. My grandfather wanted to postpone his surgery, but we convinced him not to. The biggest concern for him was not being able to drive for three weeks, since he is the "captain of this ship." So he had his surgery on Wednesday, and both he and my grandmother were on the same floor of Seton Hospital at the same time, and since I can't stay the night by myself, I stayed with my great Aunt Martha. As if this wasn't enough stress.

      Dr. C has been trying to transition me to an adult rheumatologist since I was 18, but no one will see me and wants me to stay with him, but he is a pediatric doctor. I had an appointment set for Monday, February 2nd, with an adult rheumatologist in San Antonio, and I had my last appointment with Dr. C the Tuesday before my birthday. We weren't sure if she was going to see me, but my records had been sent and apparently he was going to talk with her. On my birthday, I get a call from San Antonio saying that they got a referral for me to see one of their rheumatologists. I had told them that I already had an appointment to see this particular doctor on February 2nd, and Dr. C's office also said the doctors office had my appointment for that day. The lady on the phone said she didn't know where I got that appointment from because she only sees patients in clinic on Wednesdays, and that I was supposed to be scheduled with a resident, but she may only come into say hi, and they scheduled me for Wednesday, February 4th with a resident. This did not make me feel comfortable, and I was already nervous, and to top it off my mom called Dr. C's office and the nurse said that Dr. C had talked with the doctor I was supposed to see, the day before, and after he had talked to her they are now passing me off on a resident. My family did not feel confident after this either.

      On Tuesday the 3rd, my mom and I drove down to San Antonio, checked into the La Quinta by the medical center, and met her good friend Susan for dinner at our favorite restaurant in San Antonio, Alamo Café. Even though I cant eat I had some sopapillas and ice cream. The next morning, we got up early since my appointment was at 8:30 AM. Since the doctor was part of the UT Health Sciences Center and the first address we had was at the medical center, we decided to stay at the La Quinta near the medical center. My grandfather found another address they gave me and it was all the way downtown at the Robert B. Green campus, and with traffic, it was a good we left when we did. When were called back and were with the nurse in the exam room, she said that they had no medical records on me at all. We couldn't believe it, because we knew for a fact Dr. C's office had sent them over a month ago. She says it could have been at the other doctors office, but it was still shocking. She said that the resident who was seeing me, was feeling sick, and may come in wearing a mask. We couldn't believe a doctor who sees immune compromised patients would come to work sick. The resident came in and said, "why are you here", he knew absolutely nothing about me and had no records about me. My mom and I were stunned and couldn't believe it. After talking for a few minutes and asking a couple of questions, he said he needed to go talk to his attending. A few minutes later, the partner of the doctor we were going to see came in. He said again that he didn't have any records on me, asked a couple of questions and said, "I don't think there is anything more that we could do." My mom asked if he was going to talk to Dr. C so that he could understand more about my case, and he said, "that it wasn't necessary, because they were coming in years in after things started." Well of course were years in, that's what transitioning from a pediatric doctor. They wanted to do blood work, but nobody there in that big medical center could access my port. It was all ridiculous and a big waste of our time, and I was treated unprofessionally.

      I now don't have a rheumatologist and no solid treatment plan.  I have been turned down by all rheumatologists in Austin, San Antonio, Dallas, and Houston. The plan to transition me has failed. As you can imagine, my family and I have been under immense stress lately. We are trying to just take it one day at a time, and trust in the Lord. I know that God is with me and my family, and that He will take care of us. We trust need to trust and surrender it all to Him. By doing that we will be at peace, and know that it is all in His hands.

 

 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta