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