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
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
