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