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

The Challenges Of Being Around Food While On A Feeding Tube

   With the cold winter weather, one of the pleasures that comes with it is warm food, like my grandmothers home made vegetable soup with biscuits or cornbread, her delicious beef stroganoff and other delicious meals. Of course, when you have a feeding tube that provides 100% of your nutrition, you are not able to enjoy these delicacies. Because getting my feeding tube wasn't something that I wasn't really prepared for, and was a bit of a shock, going from being able to eat like a normal person, with some modifications, to 100% tube fed, was a challenge to say the least. Although I am allowed to have a milkshake or some ice cream at times, it is still a big adjustment. I don't necessarily miss the act of eating itself, due to the fact that it had become so dangerous, but I do miss being able to taste things. I feel as though I have been able to adjust to the feeding tube well, and still eat dinner with my family, and go out to restaurants, it still hard to believe at times that I am at the point to where I need a feeding tube. I know that the feeding tube is keeping me alive, and helping me as healthy as I can be, and that truly is a blessing. 
      This Thanksgiving will be my first Thanksgiving with a feeding tube, and since food is such a big part of the celebration, I'm a bit nervous. But I'm trying to keep in mind that its not about what were eating, but who we are celebrating with and what we have to be thankful for. I think since that food has been something that dominates our society, and people and the media make food the center of getting together and socializing, this makes it more of a challenge. I have come to learn that food is not what is important when gathering with friends and getting together. When you can't eat, you begin to change how you view things, that once was a big part of your life. I've learned to adapt to my feeding tube as my new normal, and although I do miss eating some of my favorite and delicious dishes, I don't allow the fact that I can't have them to consume my life, and get me down all the time. Sometimes I say that I love my tube, which may sound weird. But what I mean is that I love being able to get my nutrition in a way that is safe for me, and that both me and my family are able to worry about one less thing, knowing that we don't have to worry that every time I eat I could choke or aspirate. And that is truly a wonderful thing, which is why having a feeding tube is such a blessing, and what makes the challenge of being around food, not such a challenge in some ways. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

My Last Appointment

This past Thursday, I had an appointment with my pediatric rheumatologist Dr. C. We still haven't been able to get the IVIG approved, and were waiting to hear about the second appeal. Because I haven't been on any treatment for about two months, I am having a lot more inflammation weakness, swelling and stiffness. Until we get everything sorted out with the treatment, Dr. C says that I need to do weekly doses of high dose IV steroids. We also have a backup plan for if the IVIG isn't approved. Since we are kind of running out of treatment options, and I'm so medically unique, its challenging to know what to do. There have been some evidence, that a medication called Orencia, that I have used before for my RA, along with an older medication called sodium thiosulfate, as shown benefit in patients with Dermatomyositis. We also may go back to the Cyclophoshamide (Cytoxan) chemotherapy. This would be if the appeal for the IVIG isn't approved, as IVIG is my best hope. Many doctors call it IV gold. IVIG or intravenous immunoglobulin therapy, is composed of donated plasma and immunoglobulins from healthy people. It is used for people who have primary immune deficiencies, in that it helps boost there immune systems. In patients like me, who have autoimmune diseases, it gives them infusion of healthy antibodies of other people, so that there immune systems won't continue to attack them and cause inflammation. 
      My insurance changed from Blue Cross Blue Shield to Aetna on September, 1st,  because Aetna took over the Teachers Retirement System (TRS active care) this means all districts in the state of Texas  now have Aetna. The reason they denied my IVIG is that my IgG level wasn't low enough, and this level has to be low for Aetna to approve it. Now, my doctor and leading specialists in rheumatology have told me that in people with autoimmune disease like me don't have this level low, because of the process that is going on. The people that do have this level low are the people with primary immune deficiencies, and this is the level that Aetna goes by. So basically by their guidelines people with autoimmune diseases, which for many IVIG is a standard treatment, can not get it. Despite my doctor sending an appeal letter the Medical Director upheld his decision. My doctor tried to get a peer to peer with him, because I'm so complex they need to talk over the phone since a letter doesn't do enough. Aetna claimed they couldn't reach the doctor, even though I gave them the correct number three different times, and so they placed the blame on me and the doctors office. So because of a mistake on their part the doctors office could not talk to the Medical Director, because the allotted time had passed, even though it was Aetna's fault. 
      In response to all this unbelievable stuff, I decided to track down the e-mail of the CEO of Aetna, Mark Bertolini, and wrote him a heartbreaking letter explaining what this horrible disease has done to me, how I can't walk or eat, the kind of things that I used to do before I got sick, and how leading physicians say that IVIG is my best bet, and that without it I could die, and that this is a matter of life and death, that my life is literally in his hands, and that he is the only one that could help me. I also attached a heartbreaking letter that my grandfather wrote, with pictures of what my disease has done, and from my Make-A-Wish Trip. I didn't expect anything to happen, but two days later, a woman called in response to my e-mail and talked to me for about 20 minutes. She explained why they said it was denied, and I explained how leading specialists have said that in people with my condition that level is not low. I then reiterated what was in my letter. She said that the letter I attached from my grandfather couldn't be opened, and wanted me to send it again. She then gave me her email and the number to her direct line. She said that they would have their clerical team look into it, talk to my doctor and see what they can do to help me. My family think this is a good sign and that they will approve it. I pray that they do, but am not getting my hopes up. 
      This whole thing has been frustrating. My doctors office says I'm not the only one this is happening to. Since Aetna took over TRS active care this exact thing has been happening to other patients in his practice. My mom also experienced something similar. She has been having issues with her shoulder for two months. A lot of pain, stiffness, and limited range of motion. Her doctor wanted her to have an MRI to see if she has a torn rotator cuff. She had an MRI scheduled for yesterday, and just as she was leaving to go have it done, she gets a phone call saying that Aetna denied the MRI, and said that shed needed to have 6 weeks of PT and another x-ray afterwards before they would approve an MRI. We couldn't believe it. Apparently this is not uncommon though with Aetna. Its so hard dealing with all of this, and I am trying to stay at peace about it, but as I decline its hard. I am just surrendering it to God, because He will always provide for me no matter what, and that helps me to be at peace. Thank you for your continued prayers and support. Pray that this second appeal is approved, and that because of my letter, the hearts of those at Aetna are touched and that they approve my IVIG. Much love and God Bless!!!!


Joyful Love 
         & 
Blessings In The Lord
Alexandra K. Acosta

Carpal Tunnel Surgery

This past Wednesday I had Carpal Tunnel Surgery on my right hand, and a steroid injection into the carpal tunnel nerve on my left hand. After experiencing numbness and tingling in my hands, my rheumatologist recommended I go to a hand specialist. After an EMG and nerve conduction study it was confirmed that I had Carpal Tunnel Syndrome in both hands. Carpal Tunnel is not uncommon in people with RA. When the inflammation goes down that can help with the symptoms of it, but due to them not being able to control the inflammation that was difficult. The surgery was done while I was asleep due to my muscle tremors. I was concerned a bout having a reaction to the anesthesia, but with the help of pre-meds, and the fact that the anesthetic they used was also what they use for nausea after general anesthesia, I had no headache, nausea or vomiting.  My hands were both numb when I woke up due to the lidocaine that was injected to numb the area. As the lidocaine wore off, the hand soreness became more prevalent. But due to the fact that I already have pain medications for my arthritis, and I have a high pain tolerance, it was manageable. I was an am able to due my feedings by myself as I am good at modifying things I do to adjust to pain or weakness, so I can be as independent I can. The doctor said that it varies how long the soreness would last. Some experience it for two months, others not very long, it really depends on each individual. I have to open and close both hands into a fist 10 times an hour to keep the tendon from scarring. And were hoping that the steroid injection into the wrist, will keep me from having the surgery on my left hand. But with my RA and everything, we really don't know. 

I am very pleased that my surgery went well, and I am not in excruciating pain, did not have a problem with the anesthesia, and not infection where the incision is. I thank you all for your continued prayers and support that you have provided for me and my family. It is such a blessing to know that we have all this love and encouragement from so many people. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

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

Cold & Flu Season Has Arrived

As an immunocompromised individual, I have to be extra careful than most of getting sick. But when cold & flu season nears, I practically need to be a hermit. and definitely keep the hand sanitizer and Dial Soap companies in business. Making sure I am not exposed to germs or around people who are or have been sick, is one of the things I have control over when it comes to my health, as a majority of it is out of my control. Although it can definitely be a challenge. I have to remember that the benefits of protecting me from getting an infection, which could indeed be fatal for me, outweigh the things I have to avoid doing because of their risks to me, even if I enjoy doing them immensely.
      In the past month, two weeks apart I have suffered two infections. The first one, a month ago this coming Wednesday, was a sore throat accompanied by a 101 degree fever. Coincidentally I was on an antibiotic for a skin thing and started the day before I got sick, so that was a blessing. We don't know if it was a virus or strep throat due to the fact that I didn't go to the doctor. But I did text my doctor and she said that  their had been a lot of viral pharyngitis going around, but that it was good I was on an antibiotic. Then, two weeks ago this past Wednesday, my mom was staying with us for two nights due to a training. She had a cold, and thought it was the same thing that I had, so I wouldn't get it again. Towards that weekend, she sounded like she was getting better. Last Sunday evening I started having a sore throat and it continued on Monday. I texted my doctor Monday afternoon, but never got a response (I learned her kids dropped it in water so she can't receive texts). I still went to my OT consultation even though my grandfather didn't want me to, because I had a 101 fever, but I felt I couldn't cancel so last minute. As the day wore on I felt worse, and that evening I went to the after hours clinic. Though I had taken children's Tylenol (since its the only one that comes in liquid form) and had some ice cream, so my temperature was down. I saw Dr. Brook and he said that my throat was a bit red but didn't look like it was strep, but did do a rapid strep test and a 24 hour run. He said it was most likely viral and didn't want to do antibiotics. Luckily and coincidentally I ran into my primary doctor, Dr. Markley, who my family and I absolutely LOVE. We said hello and told her what was wrong and she kind a did a quick exam in the hall, and said even if the strep comes negative she will probably talk with Dr. Brook about putting me on an antibiotic given my history. Even though some of the things I get are viral, the doctors put me antibiotics because of the fact that infections could be fatal for me. Both strep tests were negative and I was put on antibiotic and am now feeling better, turns out it was a sinus infection. Luckily I'm between immunosuppressants, so the infections weren't as bad as they could have  been. Although the fact I got two infections two weeks apart while not on any will not make Dr. C happy, and will mean I need to be more careful when I begin them again.
      It is very hard to be so vigilant about not getting sick, and now with Enterovirus have being here in Texas, we are now even more vigilant about going out places except when necessary. Although one might be very frustrated with having to be so alert and on guard when it comes to getting sick, I know it is to protect me and keep me going. I have had many infections, a few that were quite serious and could have been fatal, yet I am blessed to have survived them. Despite the difficulties I face and the sacrifices I have to make, I know that making them, like avoiding crowds when possible, not being around young children, and wearing a mask when necessary, it is by because of doing these things I am still here. Although this can a difficult time of year for me health wise in various ways, I do what I need to do knowing that I will have the ability to live a wonderful blessed life. 


Joyful Love 
         &
Blessings In The Lord
Alexandra K. Acosta

Insurance Companies: A Blessing Or A Curse

This Past week I have been dealing with my insurance companies in various ways and have been on the phone with them 3 or 4 days this week. On September 1st of this year Aetna took over TRS Active care from Blue Cross Blue Shield (BCBS) of Texas. Now with me seeing so many many doctors, plus being chronically ill, I didn't think about informing each of my doctors about the change until the next time I saw them. This past Monday I called my my rheumatologist Dr. C's office about what was going on in regards to trying to get my IVIG therapy started. Dr. C talked to my Hematologist Dr. CB the day of my appointment, which was two weeks ago from this past Wednesday, and she agreed to do the treatment. Dr. CBs office said that they were waiting to get approval from the insurance company. I thought it was taking so long because I had taken the treatment before and didn't really respond, and so that was making it difficult to get approved. They said they would call me back when they new more. On Tuesday, I got a call from the billing department from Longhorn Health Solutions, the company that  has provided my feeding pump, pole, feeding bags, and formula. They said that there were two deliveries that had had occurred in August, totaling about 750 dollars, that the insurance said that the patient was responsible before, even though I had met my deductible. Because this problem happened before September 1st, it was while I was with BCBS, since Aetna took it over, I called them to see what the problem was. Of course I was on the phone for 10 minutes before talking to a live person and they said I needed to talk to BCBS. So they transferred me to BCBS. It was another 10 or 15 min before I talked to a real person. Because I hadn't been with BCBS for a few weeks and didn't have an ID number it was difficult to fine my benefits. I explained to the women on the phone what the problem was, and she began asking what my diagnosis was for the feeding tube. I said I had dysphagia (difficulty swallowing), which is a legitimate diagnosis for a feeding tube. I said that I needed the formula because I was 100% reliant on it for nutrition. She said that she needed to check some things out and would call me back in a max of 15 minutes. I had to go to a doctors appointment, and I waited the rest of the day and for a bit in the morning with no call back. As you can imagine I was frustrated.
       The next morning I called BCBS, but the first number I called was the department for individual policies, and then had to call the number for a policy under an employer, since its under my dad's insurance. It took me again 10 minutes to get through, and difficulty to find my information because I didn't have an ID number. The first lady I spoke to didn't know much about how to answer my question, so she transferred me to another woman. This woman was extremely nice and very helpful. She apologized  that the other lady never called me back, and was able to give me a quick response to my answer. It turns out that the issue was the formula and feeding bags were submitted under medical, and needed to be submitted under insurance. A quick fix. She actually put me on hold so she could call the lady in the billing department at Longhorn Health Solutions and tell them what the issue was. She didn't want to have to call me back because of the not getting called back. One insurance problem solved. 
      I still wanted to figure out why I hadn't heard about my IVIG being approved. I called Aetna, and they had no record of that claim being submitted. They then connected me to a case manager, who proceeded to ask me why I had my feeding tube, what all my diagnoses are, and all my medications and their dosages. I really didn't feel like doing that at that time, since I was working on my online class. She wanted to call me back at around three o'clock that afternoon, but of course never did. While talking to her, I realized that Dr. CB's office may have not known that my insurance changed to Aetna, so she said that she would call them right after she got off the phone with me. To make sure that the information got relayed to them I called the financial manager at her office to let her know about the change, and they weren't aware of it. So mystery solved as to why I hadn't heard about my IVIG, and now that her office is aware of the change, hopefully we will get it scheduled soon. I also thought I had notified my pharmacy, which I'm at nearly everyday, about the insurance change, but I didn't (thanks chemo brain). But because of a new cycle my deductible hasn't been met yet, and my scrips can cost a lot, but it doesn't take me long at all to meet it. 
      Despite the fact that dealing with insurance companies can be frustrating, especially when changing insurances, they are a blessing. When you are dealing with a chronic life-threatening illness, its because of insurance that you are able to receive the medications you take, and see the wonderful doctors that take care of you. I know that part of the reason I'm still going, and my family is not bankrupt, is because  I have insurance to help pay for all this. They may make me crazy sometimes, and feel as though there more of problem then a solution. But in the end, they are truly a blessing. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

The Thoughtlessness Towards Those With Disabilities

Being a disabled individual for a few years now, and knowing others who face the same challenges, I have come to experience firsthand people's attitude towards those with disabilities, both positive and negative. I could tell of many stories where people were insensitive toward the disabled, but there are three that I would like to tell about that have happened over the past few months. The first happened about three or four months ago, as my grandmother and I were leaving Hoppdaddys restaurant. I was in my power chair approaching the door to leave. There was a large group of teenage boys with their mothers. As I was heading out all of the boys and one or two of the mothers got out of the way. One of the mother's was just standing there blocking the doorway and chit-chatting with another one. She had seen me, but just kept on talking and standing there. I had nicely said excuse me three or four times and she still did not move, I finally said it a bit louder, and one of the boys nudged her out of the way. She glared at me and as I was rolling out she said how rude I was. My grandmother and I did not say anything, but we both agreed that the young boys were more considerate than the older woman. Obviously moving out of the way so I could get by, was clearly a problem. Of course I thought that what she did was rude, but I kept my composure and did not create a scene. 
      The second incident that occurred happened a little over a month ago as my mom and I were leaving the nail salon. As always, my mom drops and picks me up at the curb so I can be right near the door and get in on my walker. When doing that cars can be stopped behind us but when they see the walker they are ok. As my mom was trying to help load me in the car this car behind us kept honking at us. My mom tried to point out that I was on walker but he still kept honking as he drove by he was throwing his hands up and I couldn't understand what he was saying. As we drove by leaving the parking lot, and he was getting out of the car, my mom rolled down the window and asked what his problem was and couldn't he see I was on the walker. And he said that she was blocking the road and just not making any sense. My mom was like my daughter is disabled and on a walker with her feeding pump but that did not seem to matter to him. As we were driving my mom said, "what nice compassion you have for people with disabilities. We were both appalled at his behavior even after he knew about me being disabled. Even if he hadn't seen me, after finding out he could have apologized, but he chose to continue to be rude. 
      The third incident occurred when my mom and I were meeting two friends of ours at a favorite neighborhood restaurant on Burnet Rd., The Frisco. My family and I have been going there for years and the staff knows and loves on. My friends mom was on crutches, and when we walked in this entire family was sitting on this long bench. Now none of them had a cane or walking aid of any kind, and were not elderly. They saw me and my friend's mom with our walker and crutches and they still chose not to move after seeing us. Since either of us can't stand up very well and need to sit, there insensitivity was clear.
      Having experienced many of these negative attitude and dealings with those who are disabled, I have had to learn to forgive them for their unkindness. It doesn't make me a better person to react angrily to their behavior, because that would make me no better then them. I try to follow my religious beliefs and forgive others, just as the Lord has forgiven me from of all of my sins. Even though I may not feel at that moment that they deserve my forgiveness, neither do I deserve God's. He still has forgiven me, and everyone else of their sins, and so should I and everyone else. I encourage you all to be considerate of those with disabilities. If there are no seats available while waiting, give up yours so that they don't have to, hold the door open for someone on an assistive device. We should all be considerate of those who are dealing with physical challenges, because we never know when we'll be on the other end. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Visit To The Doctor and Another Treatment

This past Wednesday I went to see my rheumatologist Dr. C. I had been having a lot of pain, stiffness, swelling and more weakness. My appointment was for yesterday originally but I was on the cancellation list, and they called me on Wednesday and said he wanted to see me at 3:15 so I went. He said that I looked absolutely miserable and that my disease was not looking good. He wanted me to stop my Azathioprine/Imuran and wanted to talk to me about other treatments, since the Cell-Cept and Methotrexate weren't working. I asked about a lower dose of the Cytoxan chemo, but he said that it would up the cancer risk much more, and its like when am I going to get my tumor. He wanted me to consider going back on one of the biologics, not the anti-TNF's cause of the protein that prohibits me from absorbing those medications. We decided on a medication called Actemra, that works on a part of the immune system known as IL-6 or Interlukin-6 a protein that plays a role in inflammation. I have never had a medication that targets this particular protein before, and this drug is used for RA. Because I have multiple autoimmune diseases Dr. C also wants me back on IVIG (intravenous immunoglobulin therapy) which are made up of immunoglobulins/plasma donated from other people. I have had this treatment before a few years ago, but developed a rare reaction known as Aseptic Meningitis, where I get an extremely bad headache and uncontrollable nausea and vomiting and have to go to the ER and get IV fluids, pain meds, and anti-nausea medications. They stopped the IVIG because of the reaction and it wasn't working. So as you can imagine I'm a bit nervous about restarting it. The dose they will give me, is that of patients who receive it for immune deficiency conditions, as autoimmune patients get a higher dose. I will also be getting good premeds, as well as Solumedrol (steroids, either before or after or both), these should all help me not have the reaction. This is extremely key because with my swallowing issues aspiration pneumonia could be deadly for me. The GI team told me don't throw-up, not don't try, but don't. He said that our goal is not remission but to slow the disease down, and to keep organ function. 

      As you can imagine my family and I are just trying to take this all in. My mom and I weren't really that surprised that he changed my medication, as the Imuran wasn't doing that much for me. Of course what was surprising was that were going back on the IVIG due to the reaction that I had last time. I am a bit nervous about restarting this treatment, but I trust my rheumatologist Dr. C, and my Hem/Onc doctor Dr. CB. I know that they are going to take good care of me so that I can take this treatment safely. I'm also putting my absolute trust in God, and know that he is guiding the doctors and nurses to know what the best way is to help me. By trusting and having faith in God, I can be content and at peace knowing that I am making the best decision for me. Proverbs 3:5-6 says, "Trust in the Lord with all thine heart; and lean not on thine own understanding. In all thy ways acknowledge Him, and He shall direct thy paths." This helps me to know that when I trust in God, that He will make it evident as to what path I must follow and that gives me great peace. By trusting have having faith in Him, I know that I am making the right decision, and that gives me great comfort. 

      On another note, my grandmother is doing well. She had an appointment with her surgeon Dr. Graham, and he says that everything is looking great. She has begun PT here at home and is making great progress, and on the mend. Thank you all for your continued love, support, and prayers for our family during this time. Each one of you are a blessing. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

My New Feeding Pump

So this past week I got my new feeding pump, bags, formula  and pole. The pump, bags and formula came on Tuesday, but the pole didn't come until late yesterday due to it being on back order. They had a sick driver yesterday and wanted to know if they could bring it on Monday, but I said no I couldn't wait because I was hanging the pump and back on my walker. The pump is lightweight, but with the formula and water mixed together, the bag is about 2 pounds. So with my muscle and joint difficulties pushing the walker with the back hanging was difficult. The pump I have is called a Kangaroo Joey (I nicknamed it KJ, silly I know) and its blue and very lightweight. After her surgery my grandmother even picked it up with her good hand and was amazed how lightweight it is. Its a pump that typically children use, but adults with muscle and joint issues use it, because it is the lightest weight pump. When I go out it is just fine, and not very heavy, which is nice. 

The doctor and I both agreed on the pump due to the fact that every time I would bolus feeding, in which you pour the formula into the tube at the times you would normally eat, I would get so full that after each feeding I would have to sit and let it digest for about 30-45 minutes, and wasn't getting enough nutrition, only about 700-800 calories a day, which is not nearly enough, so I was dehydrated and even more fatigue than I usually have, which is pretty fatigued. I have been losing weight, about 30 pounds, which has not been a problem for me due to the fact I have gained over 100 pounds because of all the steroids. But I have been losing about 4 pounds a week and the doctors are concerned about the rate I have been losing weight, so they wanted me to increase my calorie intake to get more nutrients, and so I can lose weight at a healthy rate. The pump has allowed me to do that. Another benefit of the pump, is that I don't have to use the syringe as much, except to flush before I hook up, and when I am done feeding, and when I do my medications, as they have to be crushed and given via the PEG tube through the syringe. But due to my continuing difficulty with my joints and muscles the syringes can be difficult, so doing them not as frequently as with the bolus feedings, makes it a bit easier. 

When beginning the pump feeds, I had the option of either feeding throughout the night or during the day. I was hesitant to feed at night, because with my very high aspiration risks, I would have to sleep propped up like one would in the hospital. With my joint and muscle issues, that would be very uncomfortable. A lot of individuals who do night feeds find that a hospital bed is necessary to be propped up correctly, and I don't want that. My formula is similar to a baby formula and smells and stains like baby formula. When tube patients due night feedings it can be common that when you roll over the formula can leak everywhere and you may not realize it until there is a big mess. There is also getting up in the middle of the night groggy and fumbling around with the pole to go to the restroom or get a drink of water, and possibly tripping. With my unstable joints and muscles, and my very high fall risk, I didn't want to deal with that. After talking with others on feeding tube groups on Facebook and hearing their experiences, I decided that day feeds were the best choice for me. My doctor wanted me to be hooked up to the pump and feed 12-14 hours a day. Im starting with three cans of formula, and working up to four. For each can of formula you mix one can of water. With the pump I can feel it going in throughout the day, but I am not as stuffed as I was before, which is great. I am getting more calories, enough to lose weight at a healthy rate, and no longer dehydrated. I occasionally have a small frappacino, milkshake, or a little bit of ice cream for taste. But because I'm doing continuous feeding I can't have more than a few bites. 

When the pump first arrived and I was hooked up to it, it was like reality hit. It became more real that for 12-14 hours a day, everyday I am basically hooked up to an IV. I never thought in a million years that I would be on a feeding tube at the age of 21. But I know that even though it is a sign of my continuing difficulties, it is keeping me alive and as healthy as can be. Because of having the tube I have connected with other tube patients and groups on FB, and have made new friends. Even though no one really wants a feeding tube, but it is helping me. In a way it is blessing, and that is something to thank God for. Many may not see it that way, but as its keeping me here, I see it as one. 

Note: My grandmother is doing well. The surgery went as planned, and the doctor said her bone was better than expected. She is doing better, still in pain and tired. But the home health nurse and PT are working with her. Thank you for your continued thoughts and prayers. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Girls Getaway To San Antonio

About 3 weeks ago, my best friend Emily and I when on a two night girls getaway to San Antonio, and stayed at the Riverwalk Marriott. We had an absolute blast, and it was a much needed getaway as I have had a rough summer. I left the day after being released from the hospital, where I spent two nights, and had a new PEG tube placed. I had told the doctor that I was leaving on Tuesday, and was determined to go, and he promised me I would be home by Monday and could go, though that Monday I got home at 5:30. We drove down in the van, so I could have my power chair, which was a godsend. We got to San Antonio, but with  two Marriott's on the Riverwalk it was confusing to find, but we enjoyed driving around. I hadn't ben to the Riverwalk since I was much younger, and don't even remember it. So it was nice to go while I can really enjoy and appreciate it.
      Our first night we there we explored the hotel, as we were on the concierge level, so they have a separate lounge area. We just lounged around, ordered screwdrivers and had some cheesecake that Emily brought and watched The Other Woman with Cameron Diaz and Leslie Mann. A nice night in. We love cheesecake because we both like The Golden Girls, and they eat cheesecake. I can't eat it much anymore, but occasionally when I'm with Emily. We woke up a bit late, and then went and walked around the Riverwalk and had lunch at the Rainforest Cafe and split a Mai Thai. We continued to explore the Riverwalk, and the weather was nice, but as the day wore in it got hotter. That afternoon we hung by the pool, and for the first time in a couple of years, which was awesome. We just sat by the pool under an umbrella and read are girlie magazines. We then went back down to the Riverwalk and went to a local Mexican Restaurant, which was fun. We then walked (I rolled) back up to the room, ordered dessert, screwdrivers, and had a nice night in. I was tired, so Emily took a run around the Riverwalk at night which she said was pretty, and did come back safely.
      The next day, we took our time and packed up, and checked out. We had past the San Marcos & Tanger Outlets on our way to San Antonio and decided we were going to stop on our way back. We had lunch at the Outback Steakhouse, which has really good Pina Colada's surprisingly. I got a Vera Bradley bag to carry all my formula and feeding supplies, Emily got some cute jeans, and I had gotten some gifts for my grandparents (a belated Mother's & Father's Day gift), some hand cream from Crabtree & Evelyn that my grandmother loves, some Ralph Lauren Polo aftershave that my grandfather loves. My mom's birthday was the day we left for SA, so I got her a pair of earrings done by a local glass artist.
      We had a BLAST on our trip, and are saying we want to make this a yearly thing. Were saying we want to go to Dallas and go to a country concert next summer. But who knows? After having a rough summer it was so nice to getaway for two nights with one of my best friends. What a great trip with a great friend.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Miracle Treat Day

This Thursday, August 14th is Miracle Treat Day at Dairy Queen's all across the country, in which $1 from each Blizzard sold goes towards benefiting the local Children's Miracle Network Hospital in your area. Dell Children's is a Miracle Network Hospital. Having spent a lot of time at that hospital (as well as other MNH's) and my rheumatologist being there, this is a very important cause to me. Every year since I became sick, we have gone on Miracle Treat Day to support this wonderful cause. The Children's Miracle Network is a wonderful cause, and one that I support. I encourage you, your family and friends to go purchase even a mini blizzard, and have a $1 donated to the network, which supports DCH. Plus its a great excuse to have a frozen treat to cool off with during this heat. As usual my family and I will be going (since I can still eat ice cream). Thank you for supporting this wonderful cause, and God Bless!!!!


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Life With A Feeding Tube

Sorry I haven't posted in awhile, things have been so crazy since issues with the first feeding tube requiring two hospital stays and a second brand new tube being put in, my mom moving to Bastrop for a new job in a small town outside of Bastrop called Molten, and then I was gone for two nights on a girls getaway to San Antonio with one of my best girlfriends (that will be my next post). I'm now back at my grandparents and just trying to get back into a normal routine. Thank goodness that my new feeding tube is working well, as it has been an adventure dealing with all of that.

I originally got my first feeding tube on July 3rd. I was a lot more sore than I expected, but as I've never  had a feeding tube, I didn't know what was normal or not. The doctors or nurses didn't do any teaching with the tube, because they new I had a home healthcare company and said that the home health company takes care of the teaching, providing supplies, formula, a dietician, and such, so that was what I was expecting since I told the home health company I was having one put in. A nurse came on July 4th and I was in excruciating pain, but she said that it wasn't the home health companies job to do what the doctors said, and that is what some of there patients had been told. After she left I was in more pain, nausea, and feeling miserable. I had no nutrition whatsoever and was not doing well, I could barely walk to the restroom. That Monday the nurse came again and all I had was two 30mL feedings of Pediasure (since we had no "real" formula). The following day, Tuesday, I was doing real bad and got so sick I threw-up which is dangerous for me because I can aspirate. I couldn't even walk to the car to go to the ER and my mom had to call the ambulance. My blood pressure was very low, I was running a low grade fever, was tachycardic, and dehydrated. The GI doctor noticed my tube had been pulled out by 3 numbers, approx. cm., and he readjusted it, and I was admitted. A dietician saw me and gave me the right formula, although I am still not where I should be with my calorie intake. When they gave me the full amount I got so sick that I needed IV anti nausea medication. I have been strictly told by my GI doctor not to throw up, not try not to, but don't, and get on top of nausea right away. Things had settled down and after two days I was discharged.

After I was discharged I spent a lot of time at home resting. My fatigue was immense, most likely due to not getting adequate nutrition , and I was still in pain. I really was just not myself and could not do much except go to my doctors appointment, although two days after the first discharge I did get to spend the Saturday with my dad, stepmom, half-brother and sister at Barton Creek Mall, which was great and I had a fun time. Getting used to the tube was challenge since the only thing I'm allowed to have by water is thickened water, and ice cream, milkshakes, and thickened drinks, all not very often. My mom and grandmother were given me some a bit more, in order to try to get my nutrition up. At first my mom didn't want to eat around me, which was a nice thought, but I can go to restaurants (I did with my dad and stepmom and siblings and I was fine a just sipped a virgin pina colada) and sip a thickened beverage or ice cream, and I sit with my family while they have dinner. I love the smell of food like my grandfather's hamburger's, and smells are key, as some studies say that smell is up to 50% of eating. I get so full easily now, and it can take me a whole day to finish a small or medium shake. The good thing about my feeding tube is that it is essentially a liquid diet so I'm losing weight and have so far lost about 15 maybe 20 pounds. I'm hoping to lose 40 more.

As I thought things were going well with my feeding tube I started having more issues with it on Saturday, and called the home health company and the on call nurse came out. She called the on call doctor for the practice that put in my feeding tube (the doctor that put in my feeding tube is a hospitalist with Austin Gastroenterology, and my regular GI doc works only part time on Tuesdays and Thursday's with Austin Regional Clinic). It was by coincidence that the on call doctor was my grandfather's GI whom he really likes, and he said to go to the ER. I was not happy as I was to leave on Tuesday for San Antonio. I went to the ER and the doctor there, who was one I had seen twice before and liked, called the hospital GI that put in the tube, and they ordered an Xray. Because it was not quite 6 weeks since I had the tube put in it wasn't "mature enough" so they couldn't just change it in the ER.
So I was admitted, and the following day the GI doc came and looked at him and said it "fritzed" at him, thats the term he used, and wanted to take a look at it with the camera the next day because he was getting mixed signals from the X-ray and when he looked at the tube. I told him I was leaving on Tuesday and he said after the procedure I could go home and go on my trip. Due to the fact that I was a work-in my procedure didn't happen until like 4:15 Monday afternoon. After looking in the camera, he determined I had whats call "buried-bumper syndrome" and the bumper came completely out, after the tube had been pulled. He tried to adjust it during that first visit but the damage was already done. When I woke up after the second tube had been placed there was literally almost no pain, only a little soreness, the tube worked great, and got to go home in time for my trip. The tune is working well, except the original formula they put me on, Jevity 1.2 (1.2 means 1.2 calories per mL), I am apparently allergic to, so the dietician wants to switch me to Nestle isosource 1.5. With the 1.5 I won't need to have as much formula as the 1.2 to get my calorie intake.

The tube works great, and I am adjusting to it well. I went on my two day trip without any issues with the tube. I don't miss eating itself due to it being so unsafe and not enjoyable for me anymore. I really only miss tasting things, which the occasional frozen drink or shake will tackle. I know that getting this tube was the best decision I made. I prayed about it a lot, and the Lord led me to make this decision. For me, the tube enables me to not worry about one less thing and that is such a relief for me and my family. Hebrews 2:13 says, "And again, I will put my trust in him…." I really love this verse, because it reminds me to put my trust in God again, just as I have done before. And thats what I did when I decided to have the feeding tube/PEG tube (which is the specific type of tube that I have) put in. Even though I had some issues with the first one, overall I know that it was the right decision, and that reaffirms my trust and faith in the Lord. 

Note: As I said earlier, my next blog will be about my two night girls getaway to San Antonio. 


Joyful Love
        &
Blessings In The Lord
Alexandra K. Acosta