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