Continuing The Goal Of Earning My High School Diploma

I am continuing to work toward earning my high school diploma through the Keystone Online School. I am enjoying the program and on my second class, Earth Science, and have an A in the class. Ever since entering middle school I have strived to be a straight A student, and was in NJHS (National Junior Honor Society). Although in elementary school, I wasn't that focused on getting good grades. I have always had this goal of being number one/valedictorian, but when I got sick that goal seemed to be much more difficult to achieve. In 9th grade I was taking all Pre-Ap course at Anderson, with the goal of wanting to earn my IB diploma. Since at that time I didn't have a diagnosis, and my health was nit good and was missing school to so many frequent infections, I wasn't able to do as well as I was intellectually capable of. I had the intellectual capability of being a high achieving student, but my body prevented me from doing that. This was extremely hard for me, and the teachers did not think I was cut out to be in Pre-Ap classes and shouldn't be on track for my IB diploma. I wasn't close to the top 10%, and I remember when I was a sophomore how upset my grandmother was when I switched from Pre-AP geometry to regular geometry, which meant I couldn't earn my IB diploma or certificate. This was extremely hard for me, and I began to doubt my intellectual capability. 
       When I stopped going to school my junior year and switched to the online UT K-16 school,  I was straight A student in the two classes I took, which gave me confidence. Though I got to sick and had to stop that program and was began working toward my GED, but because they weren't able to accommodate me, I searched for an online diploma program and found the Keystone School. They have no age limit and you can take between 1 and 4 courses at a time, and have an entire year to complete the class, from the day you sign up. And everything is online including all tests and finals which is great. And besides the one year time frame you can work on the class at your own pace, and are no set due dates on assignments. I am only able to take one class at a time, and it is great given my situation. I really am enjoying the program, and I feel that the class work is rigorous and is designed to prepare the students for college. As educators, my mom and grandmother are really pleased with the curriculum. 
      I also feel that I am continuing to keep my mind stimulated and am learning new things, which I enjoy. My grandmother loves helping me edit my papers and that is something we enjoy doing together, and my grandfather likes helping me with some of the questions as well. Even though I am only taking one class at a time and going at a pace that I can do, I am pleased with the progress that I an making. I have my eyes on earning my diploma, and having that goal as something to work towards to, keeps me motivated. Despite my continuing challenges I will earn my high school diploma, and do so with extremely high grades. I know that this is something I can and will achieve. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

One Of Those Weeks

This past week has been filled with various stressors, one after the other. First, on Monday while meeting                                                        with my hand orthopedist Dr. Foster, we determined that I needed carpal tunnel surgery on my right hand. Though the carpal tunnel is mild, with the inflammation from my RA it could worsen, so we are getting it taken care of. After the appointment my mom and and I did some shopping at Target since she had that day off for Columbus Day. While leaving Target, the joystick on power chair broke, and it wasn't really that safe to drive it. It had become loose after I had bumped it in the narrow non-handicap accessible doorway at the Metro Access office the prior week, in which my pump had also been broken because of that. I had called Travis Medical and had to take the chair down there later that afternoon so they could take a look at it. They said that they needed to order the part from Pennsylvania, and that if I wanted my insurance to cover it, it would take 2-3 weeks. They offered to tape it until the part came in so I could still drive it, but since I have to adjust the joystick in order for it to fit into the car that wasn't  viable option. The part is $200, so I will pay for it out of pocket so we can get it fixed sooner, and then file an insurance claim.

These weren't the only stressors that occurred. Yesterday I went to work on my schoolwork on my computer, and I couldn't open a document I saved. My grandfather was helping me over the phone, and when I e-mailed the document to him so he could try to open it on his computer, his anti-virus alert showed up, and we learned I had a trojan virus on my computer. Now my computer doesn't have anti-viral software on it because Mac computers are not prone to getting viruses, but this was one that can attack Macs. My grandfather tried to get rid of the virus with the help of various online tech support sites, with no success. So this morning he took it to a place that we use that fixes Mac computers, and they were able to fix it, which was/is a big relief.

As if these issues weren't enough, there was another stressor, and that was my insurance company. I have still been waiting on the outcome of the appeal that my doctor has sent to my insurance company regarding my IVIG treatment. I had called Aetna and they said that they had sent a fax and called his office about setting up the peer to peer review with my doctor and the doctor from Aetna. I called Dr. C's (my rheumatologist and doctor who is prescribing the IVIG) office and they had said that Aetna had been calling Dr. CB's (my Hem/Onc doctor and the one who is administering the IVIG) office, and asking for insurance person at Dr. C's office. This explained the delay, and Dr. C's office got everything straightened out on Wednesday. Since I hadn't heard anything I called Aetna today. Aetna said that because it was a medication that I needed to speak with CVS Caremark (there prescriptions department) but they were having difficulty finding the necessary info. I said I needed to know the status of the situation today because this has been ridiculous. Someone from Caremark said they would call me back in 15 minutes, and an hour and a half later there was still no call back. I called again, and they said that this was something handled by the pre-certification/appeals department at Aetna. After being transferred to that apartment a representative said that she had received a phone call from the pre-certification nurse saying that the time frame for the peer to peer had expired due to them trying to call the doctors office with no response. I said that that was unacceptable do to the fact that Aetna was calling the wrong doctor, and my physician had been waiting for their call, and that this was a mistake on their part not the physicians. They said that the doctors office was supposed to call them about the peer to peer and I said he did and that your medical director said he would call him back at certain time and never did because the medical director called the wrong number. The representative couldn't believe that and put a message to the pre-certification nurse about what happened so that the medical director could call the doctor at the correct number on Monday. I told them I want someone to call me back at 4:00 PM on Monday to let me know the status, because the mistakes that occurred were unacceptable. 

As one can imagine, dealing with all of this was definitely a challenge. I already have so many issues going on in my life right now and I don't need anymore, but who does. I realized that I could either sit there and have anxiety and be a nervous wreck about it, or I could try and find a solution to the problem and know that unexpected stressors like these are a part of life, and not under my control. My faith and trust in God also help me deal with things like this, by helping me to be at peace. When I am at peace I am able to think and handle situations in a healthy and positive way, and not make the situation worse. Part of being a young adult and growing up is knowing that there will always be unexpected challenges that arise. Its how we deal with these stressors and challenges that will determine the outcome. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Ebola

It seems that almost every other story on the news is about the Ebola virus. Is the CDC doing enough to stop the spread of it, are the airport screenings accurate, can the virus mutate, what are hospitals protocols regarding patients who may have it, should we discontinue all flights in and out of West Africa? These and many other questions are being asked by the public, health officials, and others in regards to this dangerous illness. There has definitely been a lot of concern and panic about this going on, and people wondering if they can contract this disease as people who have been exposed to the virus are coming in from Africa and then going out into public while sick and possible coughing and touching something, and then somebody comes along and could touch the same thing. The media has played a large part in spreading the fear about the virus, while the CDC and government are saying how it won't turn into a problem and will end here. Yet there are virologists and epidemiologists who say we could have an outbreak of it in the U.S.. Although in the case of Thomas Duncan, there were definite lapses in protocol, and this has created a lot of public fear. Some of it may be reasonable, some of it not so much. 

As a person who is immunocompromised, the fear and thought of  Ebola is something that is a little more concerning for me and my family. Knowing how it can kill the healthiest person who contracts it, if someone like me were to be affected by it, it would not be a good thing at all. My grandfather was saying the other day as he was watching the local news, that he can't believe that we are watching a story about Ebola in the U.S. on our TV in Austin, TX. This being an illness that people associate with living in a 3rd world country like in Africa, not something that could be happening here in the U.S. Although its definitely a scary thing, although having Ebola and dying from it is a slow and extremely painful death, we can't sit here in fear and worry about an epidemic or pandemic of it. If we do this, we will end up driving ourselves crazy. Although I believe in keeping up with what is going on in the world, all the negative stuff that is reported on, is one of the reasons I don't really watch the news. 

Of course I pray that Ebola does not spread throughout the U.S. and the world, and that they can stop the outbreak. At the same time we can't constantly obsess and worry about it. We need to hope that the public health and government officials make the best decisions to help keep us safe. We must also do what we can by practicing good health and hygiene practices and taking care of ourselves when we are sick, and making sure we keep others from getting sick by not being around them when we are or think we are getting sick. Ebola is a concern, but being aware is more important and healthier than being fearful.

Joyful Love

        &

Blessings In The Lord

Alexandra K. Acosta

Metro Access Interview

This past Tuesday I had my recertification interview with Capital Metro's Metro Access, the bus service for those with disabilities. I have never used the service but have had them as a backup in the event that I need to use them to get to appointments and such. I had received a letter in the mail about a month ago saying that I needed to do a recertification. I had to have my doctor fill out a letter to explain the medical need for it. My appointment was for 11:00 AM and my grandfather had taken me. While driving there with the address that they gave me, I felt that we weren't going to the right location. We ended up deep in East Austin on  Pleasant Valley Rd. at the Capital Metro Administration Offices & Head quarters. Now at this point it was a little after 11. I called the number and they said that their office was at 9th and Lavaca, and I said that this was the address I was given. The woman had a rude tone and said that no one their would have given me that address, and blaming it on me. I said I was about 15 minutes away, and she preceded to tell me that I was 15 minutes late and that "Eligibility Specialist" may not be able to meet with me, and put me on hold. After coming back on the phone she said that when I got there that the person who was taking me there needed to just drop me off and not look for a parking space, since that could take time. 
      When I got there the building was on the corner of two very busy streets (9th and Lavaca). The only place where my grandfather could unload my wheelchair on the lift was hardly safe  as there were cars zooming by, and I had to be extremely careful getting onto the ramp, and that parking area was hardly handicap accessible. The lady who I had my interview with was outside waiting room. The door to the entrance was not handicap accessible, and very narrow. My power chair could hardly fit through the door. I found this not right since people with disabilities are coming in and out all day to visit the Metro Access office. The woman said it would take 1 1/2-2 hours and for my grandfather to be back then. I would first answer some questions with the woman who met me there, and then do a functional assessment with a PT and OT. My family thought this was odd since I was in a power chair with my feeding pump clearly visible. 
      She began asking me questions, and I found some of them to be quite odd, and when I told my family about them they also thought the same thing. These questions were not included when I went to my first eligibility interview. There were questions such as how many surgeries have I had, how many hospitalizations did I have, how many ER visits did I have and how many admissions were there from those ER visits, when I got my feeding tube, why I have my feeding tube, and a list of all my medications. I felt like I was answering questions for a doctors office and didn't understand what that had to do with my approval. She then asked me what prevented me from using the regular bus services, and I said that due to the steps and stuff I couldn't get on the bus. I haven't been on a city bus in years and the last time there were large steps. She said that all the busses had ramps, and basically insinuated that is not a reason to not ride the bus. Like I could really get that large chair on a regular city bus? If people like me can use the regular bus and aren't eligible for Metro Access, than who is? She then asked me if the streets to the bus route near me had sidewalks, and I said no. Like I could really wheel in my power chair in the blazing sun, pouring rain, or freezing cold to the bus stop on Burnet. Rd. It was as though she was trying to make sure that I was ineligible. I learned from my social worker today that they have really have tightened the rules on who was eligible, and that people who used to be guaranteed eligibility were not anymore, and that seemed to explain the experience I had. As I was getting ready to go meet with the people doing the second part of the interview, she needed to go weigh my chair with me in it. After doing that, she said that the weight of my chair with me in it, exempted me from the second part of the eligibility process, so I was allowed to leave much sooner than expected. I called my grandfather to come pick me up, and he was surprised as I was only in there for about 45 minutes. 
      After waiting about 10 minutes for my grandfather I was wheeling out to the curb for him to pick me up. As I was going out the door from the lobby to outside, I had quite a bit of difficulty as the door was heavy with no handicap button, and was very narrow and could barely fit my chair through it, and bumped my backpack with my feeding pump in there. I told my grandfather about the experience, and he couldn't believe it. When I got home I noticed my pump had been broken due to it being hit in the doorway at the Metro Access building, despite my best efforts. I had to call my durable medical equipment (DME) company and they had to send an emergency pump out to me since I am 100% dependent on my tube. 
      My family and I could not believe the experience I had with them. For a section of a city service that was dedicated to serving those with disabilities, the way I was treated and there building was setup was not adequate. I was grateful to have someone to take me to my appointment there, but others who rely completely on that service I hope would have a better experience. I am considering letting someone know about my very unpleasant experience, so that others do not have to go through what I did. 


Joyful Love 
         &
Blessings In The Lord
Alexandra K. Acosta