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