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

Never Give Up

    I found out on Tuesday that the external review for the IVIG was denied. As you can imagine, this was completely heartbreaking for both me and my family. This was the last level appeal so there is nothing else that I can do to get it, except for legal action, as the decision made by the external review is binding. I was really hoping that it being approved was my Christmas miracle, but I know that the real Christmas miracle is the birth of Christ. But even though I can't get the IVIG, I am not giving up. At my last appointment with Dr. C we talked about back up treatments besides going back on the Cytoxan chemotherapy. It seems as though Rituxan might be the next choice. It is very immunosuppresive and suppresses the B cells which are a key part of the immune system. It suppresses them for almost a year. Although this treatment makes me nervous and am not sure if it is the right choice. I do trust Dr. C and Dr. CB and know that they will come up with a good treatment plan that is in my best interest. 

      Going through all of this helps me to really remember a saying that is on a bracelet I am wearing, "Never Give Up". This bracelet was a part of a joy jar that given to me by a friend. These Joy Jars are given to kids in the hospital by the Jessie Rees Foundation. Jessie Rees was a girl who had cancer and created joy jars for kids in the hospital, and fighting illnesses. The main message that they share is Never Give Up (NEGU). I wear the bracelet and it reminds me to do so, in every aspect of life. Whether it is dealing with my illness, trying to earn my diploma, or whatever it may be. I always keep on fighting. I will never give up, no one should. 


Joyful Love 
        &
Blessings In The Lord
Alexandra K. Acosta

Keeping Distracted

One of the many challenging things about dealing with a chronic illness is how to keep distracted when you are feeling bad, and or having an increase in symptoms or more pain. By dwelling on it and thinking about all that is happening or what could happen, and asking questions like am I getting worse, or is something serious is going calm. But that's something that you cannot do, because emotionally it is not healthy whatsoever. By focusing on whats wrong with you, and your illness, it just causes you to not be positive, and allows worse case scenarios to creep in, causing anxiety which can cause your symptoms to get worse. One of the many things that helps me, is keeping myself busy and distracted. I get up at the same time every morning, do my devotions, work on my online diploma program, along with other things. I also belong to a weekly Bible study, participate in a book club, and enjoy spending time with my family and friends. I find that having a schedule and routine helps to keep me from lying around in bed in my pajamas and watching TV everyday. By doing that I'm just obsessing about my illness and all the difficulties associated with it, and that just makes things harder.
       I am constantly praying that God will help me to be able to stay focused on the positive and keep myself busy so that I am not constantly obsessing about my illnesses.  I know that there are individuals who are dealing with a chronic illness, and that is the focus of their life, and it is all they talk and think about. It is very understandable how that can happen, but it has been my observation and opinion that those who do that and don't keep themselves occupied, are the ones who have anxiety, are depressed and are constantly talking about how bad they feel, and worry and obsess about every little thing. While its important to be mindful and aware of your health, there is a fine line between awareness and having your entire world revolve around health issues and illness. That is something that I even struggle with, but I have learned to be able to handle it in a healthy and positive way. I've heard it said, "your illness is something that you have, but it is not who you are". I think that is something that all with chronic illnesses need to remember. I know that for me personally, that quote is something that I have to remind myself of, and to be honest that has helped me a lot over the years since I got sick. 
      I encourage all of those who are going through a chronic illness, or any difficult period in life, to keep distracted, and to not constantly focus on the situation. For each person this can come in a variety of ways, whether it is listening to music, being active in volunteer work, going for walks outside (or wheel for those in a wheelchair), or even take on a project of some sorts. Even if you have difficulty leaving the house and are not very mobile, you can watch funny movies or TV shows. There is always something you can do to keep yourself distracted and not focused solely on your illness or whatever other situation you may be in. I guarantee that by doing so your mental and even physical state will be better of than if you were dwelling on the situation. Give it a try, you may be surprised. 


Joyful Love
         & 
Blessings In The Lord
Alexandra Acosta

Thanksgiving

This was my first Thanksgiving with my feeding tube, and in addition to that, I was sick the day before, as I had a reaction to the steroid infusion that I received to help deal with all the symptoms that I have been experiencing due to not being on any treatment. I was a bit nervous about the fact that I wouldn't be able to enjoy the Thanksgiving feast as I have in years past. I did get to have a few bites of mashed potatoes, stuffing, pumpkin pie without the crust, and pecan pie filling without the pecans and the crust. It was a nice day, with my mom and grandparents. My grandmother had ordered a Thanksgiving dinner from Luby's, which we picked up that morning, and then headed over to my mom's place, and had a wonderful family oriented, low-key Thanksgiving. Despite all the stress that has been going on lately, I have so much to be thankful for. From Thanksgiving until right after new years, I try and remember all of the wonderful many blessing that I have given. Even though that I am dealing with a lot of things, that people my age, nor really anybody for that matter should be dealing with, I still have an abundance of things to be thankful for. Its important to remember no matter what is going on in your life, all. of the blessings that you have.

      Even though there are times when I feel that there are more things that are going wrong then going right, I still remember all of the amazing things that I have given. By reminding myself of all the blessings that I have and all that I  have to be grateful, helps me to know that I am so lucky and that everyday of my life is Thanksgiving.

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta

My School Project

For the past two weeks, I have been working on a project about the geologic time scale for my online Earth Science class. This has been the most time consuming assignment for my online diploma program. The project entailed creating a timeline of the four eons of the geologic time scale, and the twelve periods of the Phanerozoic Eon, and creating a model of a major life form or event for each eon and period. Last week, I spent the time allotted for my schoolwork, taking notes about the events and life forms of each of the eons and periods, which took a lot of work. Since I had doctors appointment each day last weak, and those wore me down, I had to squeeze and time working on the project. On Monday afternoon my grandfather took me to Wal-Mart to get me the supplies I needed for the project. We usually don't shop at Wal-Mart, so navigating the store was a bit of a challenge, not knowing where everything was. Luckily I had made a list to make sure I didn't forget anything. I had to get some Play-Doh, toy animals, M&M's, neon colored paper, table cloth, and some other stuff. As my grandfather and I were shopping, it reminded me of when I was in elementary school, and my grandfather, or my grandmother, and I would go shopping for supplies for school projects. It really was a nice afternoon. 
      I spent some of that evening, and all of Tuesday creating the clay models. Which for a person who has arthritis and muscle issues, that is no easy thing. But it was good occupational therapy for my hands, and was quite fun. My mom and grandparents said that they didn't realize how good of a sculptor I was. I then spent all of Wednesday creating the signs for the eons and periods, and that evening setting up the timeline on our dining room table after dinner. I have to thank my grandparent for bearing with me through this project, by letting me takeover our dining room table in order to set up my timeline, and by agreeing to go out to eat last night. After we came home from dinner last night, my grandfather helped me do a video of the timeline, which was part of the assignment. After doing two takes and working on editing, he agreed to help me do the video again this afternoon, because it was nine minutes long, and I needed to shorten it. So I spent today creating the script for my video and got it down to a little over two minutes. Now all I have to do is the paper tomorrow, and then I finally get to turn in my project. 
      Although this project was the most challenging assignment so far of this online program, and was quite time consuming, I had a great time working on it. I love doing activities that show my creativity, and being able to express that in school projects, and show that to my teachers. I also want to thank my grandfather, whose help was invaluable for this assignment. He took me shopping for all the supplies, and helped me do more than one take in order to get a good video. I really enjoyed this working on this project, I learned a lot, and I can't wait for the next one. 


Joyful Love 
         &
Blessings In The Lord
Alexandra K. Acosta