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
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
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
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
