MRI And A Trip To The ER

This past week was quite busy for me and my family. On Tuesday I got to have lunch with my god sister who I haven't seen since Christmas break, and is going back to college for summer school and then working as a camp counselor for an overnight camp, so it was great to be able to get to see her before she left. That same afternoon,    I had an appointment with my pain management doctor for my monthly appointment. So when I got home that afternoon I was pretty exhausted. I stayed home from Bible study on Tuesday and went to bed really early, because I had to get up at dark thirty in the morning on Wednesday, because I had to be at Dell Children's Day Surgery Center at 5:45 AM for an MRI of my TMJ. Dr. Carrasco wants to make sure everything looks good with my jaw, and that it is not a factor contributing to my swallowing issues. I have to be put under general anesthesia when I have an MRI, due to the muscle tremors I have from my muscle disease, the "sedation" used at the ARA center's around Austin aren't enough, so they are done at the hospital by an anesthesiologist.

Since I was just at the Dell Surgery Center a month ago, and have had countless procedures there, we know all the nurses, and have had pretty much every anesthesiologist there. The nurses all say to each other, our friend is here, and when I left said we'll see you next time, which you don't usually/don't want to hear from the staff at Surgery Center's. It is still nice to have a good relationship with everyone there, and that they all know me.


The procedure went well, and went home around 11:30, with my grandfather being a doll and stopping to get me a sausage biscuit from McDonalds (since I had nothing to eat since 9:00 the night before. We went home, and I was feeling OK, and around 1:30/1:45 I had some cereal. At around 3:30 I started getting a headache, but it wasn't really bad, and I thought I would just sleep and have some sips of ginger ale, and would feel better. At 4:15 I started vomiting, and I took my heavy duty anti-nausea medicine (phenegrin), and continued to vomit, even after two different versions of it. Finally at around 6:00 after vomiting four times and not being able to keep anything down, and having a killer headache, my grandmother made an executive decision to take me to the ER. She was concerned not only because of dehydration, but of aspiration pneumonia due to my severe swallowing issues.



So we headed to the Dell Children's ER, since my procedure was done at Dell. I have never had problems with anesthesia, but in January when I had my joint injections (which I've had numerous times) I had this problem. We/the doctors and I determined that it was a reaction from my oral chemo (the Cell-Cept) and the anesthesia. So when I had my MRI a month ago I stopped the Cell-Cept a day or two days before the procedure, and they gave me IV zophran (anti-nausea med) and decahedron (IV steroid that helps with nausea) and I had no problem. But I realized on Wednesday while waiting for the procedure, that even though I hadn't taken my Cell-Cept that morning I took it the night/day before the procedure. But since they were giving me IV zophran and decahedron like last time, everything would be fine, but it wasn't. Even though I'm 21 and am an adult, because I got my procedure at Dell and Dr. Carrasco's at Dell, they had no problem treating me. While I was waiting they gave me oral zophran to try and help hold me over, but twenty minutes later I was still vomiting. My mom came to the ER after she finished teaching class at Huston-Tillotson University. She could tell I was extremely dehydrated, and so did the doctor. We told them when this type of reaction happens I just need IV benadryl, phenegrin, and dillotid (a pain medication), and fluids, to help me sleep through it. They gave me the IV phenegrin and Benadryl, which helped a lot. I still had a bit of a headache though, and they usually don't use dillotid on kids, but since I was an adult it was a different situation. They gave me IV toridol (which is an NSAID in the motrin family) which helped tremendously. They sent me home at midnight and I slept until 1:00 PM and woke up feeling a lot better yet exhausted.


As you can see, Wednesday was a very tough day for me. I felt absolutely miserable, and besides begging my family and the doctors for relief, I kept just saying please help me God, please help me. As I reflect on that experience, I think back to some discussions we have had in my Tuesday Bible Study about Jesus healing people. There are various stories about Jesus miraculous healings, from the woman with blood being healed from just touching his cloak, healing Simon's mother in-law from a fever and then she got up and served them. I thought about how God used modern medicines, and the doctors and nurses to heal me from this reaction I had. I think that the Lord uses various ways to bring healing to others, and they may not all be miraculous like the ones in the Bible are. 1 Corinthians 12:9 says, "To another faith by the same Spirit; to another the gifts of healing by the same Spirit;..." I love this verse, because it makes me think about how the Lord gives doctors the ability to heal people, through education and prescribing medications. Not all may use these gifts, but many are true healers. I believe that the Lord answered my prayers to help me, by having the doctors and nurses give me medications that helped me feel better.


I am now back to my "sick normal" and am thankful to all the doctors and nurses at the Dell Day Surgery and Emergency departments. They helped me get through a very painful and uncomfortable situation. And thank you to all of you who continue to pray for my healing, the Lord is answering it in ways that are different then are expected. I hope everyone has a good weekend and a Happy Memorial Day!!!!




Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

War Horse

Last Thursday my grandmother surprised me to tickets to the play War Horse at Bass Concert Hall. All week I was told that there would be a surprise on Thursday, and  that my grandmother and I would be going out just the two of us. All I knew beforehand was that I needed to make sure I took a good nap because we would be out late, and that I needed to dress up. When we were in the car on the way there, I was told what the surprise was. I was so excited, my grandmother and I have always loved going to the theatre, and something that we have enjoyed doing together. We have seen Phantom Of The Opera, Mamma Mia, Hairspay, Jesus Christ Super Star, A Chorus Line, and now War Horse. We haven't been able to go in a long time, and so now that I have my power chair its possible.

The play was ABSOLUTELY FANTASTIC. Even though it was late I didn't even fall asleep, that is how much I enjoyed it. The story takes place in England during WWII, and is about a boy named Albert who is 16 who has a horse named Joey, for money for the mortgage, Albert's father sells Joey to the British Army to aid in the war, the soldier who buys him, promises to take good care of him, and sends Albert a letter or two to Albert of sketches he has drawn of Joey. A letter comes informing Albert that the soldier has died, with no word on what happened to Joey. Albert runs away to join the army, pretending that he is 19, and tries to find Joey. The play goes back and forth between what has been happening to Joey. I wont give away the ending, but will tell you that it was a happy ending. It wasn't very sad or depressing, which I have known a few people who have said that they didn't think they could see it because of that. But it was truly a great show.


I had such a fun night with my grandmother at the theatre. We really enjoyed ourselves, and went home on cloud nine, which continued the next day. It was so nice that my grandmother and I were able to spend a night out just the two of us, and doing something other than going to doctors appointments, and having fun. We looked at the list of performances at Bass for 2015, and there are a few that we would like to try and go and see. It was a great night, seeing a great performance, with a great grandmother.




Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Happy Mother's Day

Tomorrow is Mother's Day, a day on which we celebrate and say thank you to our mothers, grandmother's, and mother figures in our lives such as aunts, step moms, and whoever else fills that role. And for those whose mother's are no longer with them, to remember them by. Mother's are such special and amazing woman, and play a part in who we become. They are the nurturers, who comfort us when we cry, tend to us when were sick, are there when we need someone to listen to us, know just how make us laugh and have fun, and will do anything to protect us. Whether its your biological mom, you are adopted, or have some other mother figure in your life, the role that they have in your life is one that is very unique and special. To be able to have a day where we show and tell them how much they mean to us (although we should do this everyday), is very important. Everyday life can be so chaotic, that we sometimes forget all that they do for us, and how being a mom is the hardest job that their is.

I'm very blessed to have two moms in my life: my mom and my grandmother. Both of them have done so much for me, that I could never thank them enough. My mom works so hard at her job, and worked incredibly hard to get her Masters as a single parent with a toddler, and then her PhD with a sick teenage. She was able to do that with the help of my grandmother, my second mom (and my grandfather). My grandparents let me live with them to help my mom out, and at thaw age of 71, while she is retired and having had major back surgery, my grandmother has taken care of me while I have been so sick. She took me to chemo every week for almost two years, and takes me to all my appointments, and does whatever necessary, in order to help me. The love for me that these two women have, and the sacrifices they have made, are a testament to the wonderful mothers that these two women are.

Philippians 4:8 says, "Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things." When I saw this scripture verse, I really felt that it described the values that my mom and grandmother have instilled to me, on what I should think about when making decisions for my life. Its such a blessing to have two women who have done such a wonderful job in raising me, as they have helped shaped me into the woman that I am. I am so happy to be able to say thank you, and how much they love and mean to me, tomorrow (and I will try to do that more each day). We are having a low key Mother's Day, my grandfather is grilling steak and salmon at my great great aunt's house. May she show our mothers, or those who are mother figures, how much they mean to us, both tomorrow and every day of the year. 

HAPPY MOTHER'S DAY!!!!


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Being At Peace

Learning how to be at peace is something that we all strive for, although that is easier said than done. It's something that I strive to have, especially in stressful or difficult circumstances. I find that the one thing that always helps me to be at peace is praying and/or reading scripture. But sometimes even after I do that, sometimes I still may not feel peaceful, and that is when I really have to trust and have faith in God. I can say, that the peace that I feel after surrendering it all to the Lord, is one that can't be found in anything or anyone else.


Sometimes it can feel like we didn't do the right thing, or were not sure if we made the right decision, and that can cause one to feel as though we are not at peace. But once that peace is finally achieved it is so calming and wonderful. Romans 16:20 says, "And the God of peace shall bruise Satan under your feet shortly. The grace of our Lord Jesus Christ be with you. Amen." I love this scripture verse, because it helps me to remember first, that our God is a God of peace, and that anything that Satan blows our way, no matter what the stress is He is more powerful and can overcome it.


When we learn to be at peace no matter what the circumstances, we can know that we are able to handle whatever comes are way. Because being at peace is more than just being "ok" or dealing with it. It is truly a state of being content, and any uneasiness or stress we may have is eased or goes away. I hope that we can all find a way to achieve/be in a perfect place of peace.




Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Spring Is Here

Spring is here, the season of growth and things anew. I always thought that spring was the perfect season to celebrate the resurrection of Christ. Outside flowers are blooming, butterflies are coming out of their chrysalis's, babies, kittens, ducks, and chicks are being born. And many use this time of year to do a little"spring cleaning", purging items, and tidying things up. For me, spring is a time that I like to use to grow in my faith, and my relationship with Christ. I like to try and devote more time to reading more scripture, and other religious type articles and such. I find it very beneficial to do periodic refreshers of my face, at different times of the year, usually new year's, the beginning  of spring, and around the time school starts. I think its very beneficial, because it helps one to not get stagnant in their faith lives.

I also find spring season to be very cheerful and happy. You have days when the sun is shining, and you can be outside when its not an inferno, and enjoy the beautiful flowers, and the sound of the birds. On the rainy days, it is also soothing, because to me, the sound of rain is just so relaxing and something that I enjoy falling to sleep to.

When thinking about spring symbolizing things that are new, I came across 2 Corinthians 5:17 which says, "Therefore if any man be in Christ, he is a new creature: old things are passed away; behold, all things are become new." I think that this scripture verse is perfect for the spring the season, as well as for Easter having just passed. This verse encourages me to continue with my "spring faith cleaning." It reminds me that when I devote my life to Christ and follow Him, that the old is gone, and the new has arrived. I hope we can all take some time during this beautiful season, and our "spring cleaning", that we can do the same with our relationship with the Lord. How much, and what we choose to do, is between us and the Lord. We can also be one of the many things that grows and becomes new during this beautiful season.

HAPPY SPRING!!!!




PS: For those wondering, my MRI this past Tuesday went well. We were all pleased that I did not have any reactions to the general anesthesia like last time (the doctors gave me extra fluids and anti-nausea meds, which helped tremendously). I also think not taking my Cell-Cept (oral chemo) the night and morning of the procedure also helped. The staff at Dell Children's was wonderful, as always, and since I know all of the nurses and anesthesiologists, that makes it easier. I have to be put under general anesthesia for MRI's and other procedures, because I get muscle twitches which makes it very hard to do the procedures. I see Dr. Carrasco very soon, and should get the results then, and should have more info. My next blog will be an update about that appointment.




Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

CELL Not So ExCEPTional

I calculated recently that I take 266 pills per week (that doesn't include if I take breakthrough medication, and if I'm on an antibiotic). One of the medicines I take, Cell-Cept (which is my oral chemo) is six giant "horse pills" a day. The Cell-Cept is taken in place of the Methotrexate to try and slow the progression, and keep me from "falling off the cliff." I started it right after I got back from my Make-A-Wish trip. It usually takes a "normal patient" 3-5 months to start noticing if the medication is helping them to improve, or in my case slow things down. But for me, it would most likely be 4-6 months. When I stopped the Methotrexate and switched to the Cell-Cept, things started to decline. I started having more weakness, swelling, stiffness, pain, fatigue, and difficulty swallowing and breathing. The doctors said that they have never seen me as bad as I have been, and have been declining much more quickly  than they expected. My dose started at two 500mg pills twice a day, totaling 2000mg or 1g a day, with 10mg of prednisone a day (I also had an IV dose of 1000mg of IV steroids, and a taper pack). Now I am on three 500mg pills twice a day (3000mg or 3g), and 10mg of daily prednisone. The doctors are concerned because my white blood cell count (WBC) continue to be elevated (not that much for a normal healthy person), as well as other inflammatory markers, and an enzyme called Lactate Dehydrogenase (LDH), which is a non-specific muscle enzyme that is released in response to tissue damage. Normal levels are between 81.0 and 234.0. Mine on a lab test from the week of April 4th are 472. That is more than twice what it should be, and should not be this high on the dose of Cell-Cept and prednisone that I'm on. Dr. Carrasco has ordered an MRI of my thigh muscles, to see what the muscles look like. An MRI of my thigh was how the diagnosis of Dermatomyositis (DM) was made, at some muscle inflammation was seen. 

As you can imagine, this has been so frustrating for me, as the medicine is not slowing things down as well as the Methotrexate was, even though I wasn't getting the desired effect with it. But unfortunately I have reached my "maximum lifetime limit" for how much Methotrexate I can take. I am in new territory for the doctors, so it is really an experiment as to what medications I can take. At my visit with my Hem/Onc doctor, Dr.CB a week ago from yesterday, she had asked if Dr. Carrasco had considered combining a lower dose of Cell-Cept with something else, like a lower dose of Cytoxan (the monthly chemo I took). In Oncology they mix these types of medications all the time, but not really in rheumatology, which is why when I asked Dr. C at my last visit, he was cautious. But from an oncology standpoint, there is not a big scare with doing that, and Dr. CB said she would give it to me, if Dr. C wanted to do that, but he would have to make the final call. The two are going to talk soon, so I hopefully will no more at my next appointment with him in early May, as something else needs to be done, as the Cell-Cept is not doing what it should.

I am trying not to think about it, and the Lord has definitely helped to keep me at peace. 2 Thessalonians 3:16 says, "Now the Lord of peace himself give you peace always by all means. The Lord be with you all." I love this scripture verse, because it reminds me that God will always give me peace, and to use that peace no matter what the situation is. That gives me comfort, because I know that I can be at peace always. And with this roller coaster that Im on, that is very comforting. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Gratitude

When I saw this picture on Facebook this morning, it really resonated this me since gratitude has been a frequent topic of discussion this Lenten season. It is one of the main topics in the Spiritual Gifts class that I am taking at my church. Gratitude is something that can easily get lost in the business of everyday life, yet it is something that is key to living a life filled with joy, peace, and contentment. When we wake with gratitude, we set the tone for a positive day. Even if we have gratitude for small things, like the beautiful flowers in a garden, or the sound of the waves of the ocean, we are still showing the Lord that we are thankful for what He has given us, as everything comes from Him.


One of the things that is part of my Spiritual Gifts class, is keeping a gratitude journal, and writing in it daily. Another member of the class had made the suggestion of in addition to writing what you are grateful for, but to write what you are not so grateful, and you can see the progression of changes over time. This was something that was part of another class that she had taken. For the past week and a half as I have been writing in my gratitude journal, it hasn't been to much off a challenge to think of what I am grateful for, but has been a bit of a challenge to think of what I am not so grateful for. One would think that it would be the other way around, with all the stuff that I have been dealing with. But even though I have had a lot of challenges, and have and am going through stuff that I wouldn't wish on anyone, there is still so much I have to be grateful for. A loving family, supportive friends, a wonderful and caring medical team, a safe loving home, clothes on my back, nourishing food, shoes on my feet, and a loving heavenly father who is always with me, and will never leave me, nor forsake me.


Ephesians 5:20 says, "Giving thanks always for all things unto God and the Father in the name of our Lord Jesus Christ;..." I love this verse because it reminds me to always give thanks to the Lord for everything. The Lord has blessed me with so much, and I remind myself to be grateful and thank Him everyday for all that He has given me. I am even grateful to God for all of the difficulties that I have had, because they have made me the person that I am, have strengthened my relationship with the Lord, and have even introduced people and experiences that have been blessings. We can have gratitude no matter what the circumstances. I encourage everyone to start the day with gratitude, and to continuously find gratitude no matter the circumstances. We all have so much to be grateful for.




Joyful Love
          &
Blessings In The Lord
Alexandra K. Acosta