This past week I completed my Medical Power Of Attorney and Living Will. While I was on hospice right after being diagnosed with the blood clot in my jugular and brachial veins, and beginning the 18 month long Cytoxan treatment, we didn't know what was going to happen with me health wise (which was why hospice was involved). I had filled out what I thought was a MPOA form, but it was just one of hospice's own forms, and not the legal MPOA forms where witnesses have to sign. With the way my health has been going with no treatments beside the weekly chemo to keep me from "falling of the cliff", and palliative care being involved, my palliative care team and I decided that doing a MPOA and LW was a good idea. Being 20 years old and completing these, was a bit awkward at first. Deciding who you want to make medical decisions for you, if you are in a position in which you are not capable of doing so yourself, is not really something that people my age usually think about. I have talked a little bit with my mom and therapist (both together and individually) about what my wishes are if I were in a state in which my condition was irreversible or was going to decline quickly. I don't want to live like a vegetable, and don't want to be kept alive just for the sake of being alive. I also don't want to be in a state where I cant feed, and take care of myself, and practically drooling in a nursing home with no quality of life. For me the quality of my life is more important then the quantity. That's not to say that I don't want to live as long as the Lord allows, but I want to be able to have a somewhat decent quality of life at the same time.
While going through the emotional process of reading through all the forms with my mom, my faith really played an integral part in helping me not only decide what I wanted, but also helped to keep me emotionally sound during the process. Making these decisions require you to really think through what you want, and not just make a quick decision. I have designated my mom as the person who I want to have MPOA, because she knows, understands, and respects my wishes, and that is the number one thing when it comes to choosing a MPOA. The nurse who is on my palliative care team told me that a MPOA and LW aren't just for people who are ill, they are a really good thing for all adults to have. You never know what can happen, such as a serious car accident, an accident while doing some sort of sport or recreational activity, and even a sudden unexpected life-threatening illness where things can go downhill in a matter of days or hours. Having an MPOA and LW doesn't mean that your planning on dying or that something bad is going to happen. It just means that you have taken the steps to prepare for the unexpected. This is something that I would recommend doing whether your 20 or 80. It will give you peace of mind knowing that if something were to happen where you couldn't make medical decisions, that someone that you know and trust, and who respects your wishes, will be able to make them for you. It doesn't have to be a family member, it could be a close friend or someone else that you trust. The important thing is that you have something in place.
Going through this process helped me to be more at peace knowing that if something were to happen, that my wishes would be honored. I don't want to die, but at the same time I'm at peace knowing that when the time comes, I will be reunited with my Father in heaven. I worry of course about my family, but I know also that the Lord will be there to comfort and guide them, and His love will be what sustains them. John 10:28 says, "I give them eternal life, and they shall never perish; no one can snatch them out of my hand." This scripture verse is so comforting, because it tells me that when it is my time to be in eternity with God, that nothing and no one can take me away from him. Hopefully it will give my family a sense of comfort to know that as well.
I don't know what the Lord has planned for my future, but I am putting all of my trust in Him. I am prepared for the worst and unexpected, but I am definitely not planning on it happening anytime soon. The Lord has laid out our lives from the beginning of time, and he knows the path that it will take. Trusting in Him is easier said than done, and it is a goal that I strive for each day. I think having a life-threatening illness, and having so many unknowns makes it even more of a challenge, and at the same time more of a necessity. I strive to please and honor Him each and every day, and he is number one, and the center of my life, the core of my being. I rely on Him and His word daily. If I go a day without praying or reading scripture, I feel so incomplete, like a part of me is missing. This roller coaster I'm on is the wildest ride of my life, and at the same time the most amazing one. I don't believe I would be who I am, nor would my faith and relationship with God would be as strong as they are if I didn't have my illness. I am finding new ways all the time in which I can use my illness as a blessing, which is a blessing in and of itself. In no way am I angry at God anymore for being sick, and I think the reason is because of the blessings that have occurred because of my illness. When something negative or difficult occurs in our life, we must search deep down for the positivity and blessings that are there, because I guarantee you they are.
On another note, health wise there is nothing to new report. I am still on my weekly chemo Methotrexate (or lemonade as I like to call it) at 25mg. I have had an increase in swelling, stiffness, and weakness, but not as quickly as a decline as when I was on 20mg. I see Dr. Carrasco on Tuesday, and I hope that he will keep continuing with the 25mg, because I do think it is keeping me at a "stable decline." I should have more to report after the appointment. This past Wednesday was the two year anniversary of being diagnosed with the blood clot in my jugular and brachial veins, and also the day they called a code on me at the hospital. I am so thankful to still be here, because when they told me I had the clot, the first thing I thought was, am I going to die. When I had the surgery to remove the abscess behind it, I had never been more scared to have surgery than I was then. Especially when the ENT said he had performed only one surgery like that before. I had to completely but my trust and faith in the Lord, and the fact that I am still here today is proof that He was guiding the doctors and the nurses, and protecting me as well. I am so blessed to be here, and each day is a gift from God. Life is so precious, and I try and live my life as though each day were my last. I know that God has more for me to do here, and I can't wait to see what he has in store for me. I will continue to live my life to the fullest, to honor the Lord in all that I do, and to share His word and love, and to minister to others. Thank you to all of my wonderful friends and family. Each one of you is a unique gift and blessing, and you each provide something special and unique to my life, and I couldn't imagine my life without each one of you. Thank you again from the bottom of my heart for all the love support, and encouragement that you provide to me, and to my family. May God bless each and every one of you.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Saturday, September 7, 2013
Saturday, July 27, 2013
Back To School Time Yet Again, But Not For Me
Note: I wrote a post last year around this time about the back to school season, and me not going to school. If some of the stuff seems a bit redundant I apologize As long as I continue to have this blog (and being of an age where I would be doing some sort of education), I will be posting about back to school and the end of school, and the impact this time of year has on me because I am not able to go to school. With my mom working in education, I can't seem to escape the "school" schedule. So please bear with me.
Its that time of year again, when we begin to see the commercials on TV advertising back to school sales for clothes and shoes. Staples and Office Depot advertise the specials their having on the latest notebooks, backpacks, pencils, and all the other school supplies you can imagine. Wal-Mart, HEB, and other grocery stores advertise the sales and deals that their having on quick breakfasts, and items typically found in kids lunch boxes, as well as some general school supplies. And side-tracking for a minute, it seems that each year the notebooks, rulers, calculators, backpacks, other school supplies, and now tablets are looking more colorful and appealing. What happened to the simple blue, red, green, and yellow spirals and binders, and wooden or clear plastic rulers? I admit I love all the bright and new school supplies, when I go into an office supply store, I am like a kid in a candy store. But getting back on track now, seeing all of these commercials and advertisements for back to school stuff, has always been the sign for me ever since I can remember, that summer is winding down and school is preparing to start. Now its a sign that my mom is headed back to work after having a few weeks off, and that I, unlike my friends, am not preparing to return to school (college). Its a very tough time for me emotionally because its just another reminder of what my illness has taken a way from me, my ability to be able to attend college. Me being the Type-A, organized planner that I am, I would be healthy (or at least having my disease under control), and taking classes at Texas State University in San Marcos, where I would be getting my undergraduate degree in child development, and have a job maybe being a nanny or babysitter to a family, and then earning my child-life track degree (the equivalence of a masters), becoming a child-life specialist working in the Hem/Onc or BMT unit at Children's Medical Center in Dallas or Texas Children's in Houston, or working as a child-life specialist for palliative care and/or hospice. Instead, I am trying to figure out how I am going to get my diploma, with my condition steadily declining, and me continuing to do weekly chemo, the combination of the two causing issues with memory and my ability to focus.
Its difficult to see my friends have jobs, progress in college, live on their own and be able to drive and be independent. I on the other hand have never able to learn how to drive a car, have been to sick to get my diploma, need help with daily tasks, not being able to walk without a walker, or very far for that matter, and cannot be left alone for more than a few hours. I think for me the most difficult thing to deal with, aside from the physical issues, is my education. I have always done well in school, have a passion for learning, and before I got sick, was a straight A student, and a member of the National Junior Honor Society. Seeing and hearing about back to school, just brings back the flood of emotions I have about not being able to graduate from high school with my friends, and attend college. I have been turning to God, and talking with friends and my therapist, to help me deal with all that I am feeling. I think whats harder than not actually being able to go to college, is that because of my memory and focus issues, I can't study for more than 30 minutes at a time, with an hour to an hour and a half break needed, to where collectively I can only study about two hours a day. For someone who has a passion for learning, I feel as though that I have this bright mind trapped inside this sick body.
I have had to learn to accept the fact that my body is not strong, and that one of the many side-effects of the medicine that is keeping me alive, and giving me some sort of a quality of life, as well as my illness itself, is that I have difficulty with memory and focus. My faith and the Lord help me to know that this is not something that I can control, and its not because of something I did or didn't do, its just the reality of the situation. I pray that God will give me the strength that I need to be able to function as best that I can. I know that God did not do this to me, but my faith in him has helped me to try to stay as positive and joyful as I can. Studies have shown that a negative outlook and attitude does have an affect on whether or not a person can improve or get worse health wise. Ephesians 4:23 says, "...to be made new in the attitude of your minds:..." I love this verse, because it helps me to know that with a positive and joyful attitude and mind, I can be fresh and new. This encourages me to stay positive during this time of year, when things can be emotionally difficult. I can't change the situation, but I know that with positive mindset, love and support from my friends and family, and faith and strength in God, I can learn to accept the fact that my life is different then what I hoped or imagined it would be, but it is still wonderful and blessed. That is what matters most.
On another note, things have been as "stable" as possible health wise. I had chemo yesterday, and am feeling a bit blah, but Sunday is the worst because the IV anti-nausea meds have worn off. I have been having some difficulty in getting some lab work that Dr. Carrasco ordered. Apparently it cannot be drawn out of my port-o-cath because the heparin they use to prevent clots would interfere with the particular tests he needs. Unfortunately because my veins are so sclerotic and damaged from all the chemo, and steroids, and because blood can't be drawn out of my left arm due to the blood clot in my neck, none of the labs will draw from me. The nurses were going to do it peripherally yesterday while I was at chemo, but I found out that one of the tests required that I needed to be fasting 12 hours before the test. I had known about the tests for a while, but this was the first time that I heard that I needed to fast. I first thought I will just fast before my next chemo, but I realized with all the meds and the chemo, fasting before would not be a good idea because I would get a really bad headache and get sick. With all the meds that I take (a lot of which require I eat something), I don't usually fast unless I absolutely have to, like I am being sedated for a procedure. This coming Thursday, I will be having both wrists, knees, and ankles injected with steroids. This will be done at Dell Children's Hospital, and since I will be sedated for the procedure, which will require me to fast, I am hoping they can do the blood work their, since they have nurses and anesthesiologists that know how to do IV on difficult patients. I have had these injections a few times before, and although they didn't work as well as they were supposed to, for as long as they were supposed to, with all the difficulty I am having now I would rather have a little relief then none. I am definitely a bit sore afterwards, but I know it will go away in a few days. Please pray that these injections will provide me more relief than they have in the past, and for a longer period. I appreciate all the love, support, and encouragement from all of you. Each one of you are truly a blessing to me and my family. I can't say thank you enough.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Its that time of year again, when we begin to see the commercials on TV advertising back to school sales for clothes and shoes. Staples and Office Depot advertise the specials their having on the latest notebooks, backpacks, pencils, and all the other school supplies you can imagine. Wal-Mart, HEB, and other grocery stores advertise the sales and deals that their having on quick breakfasts, and items typically found in kids lunch boxes, as well as some general school supplies. And side-tracking for a minute, it seems that each year the notebooks, rulers, calculators, backpacks, other school supplies, and now tablets are looking more colorful and appealing. What happened to the simple blue, red, green, and yellow spirals and binders, and wooden or clear plastic rulers? I admit I love all the bright and new school supplies, when I go into an office supply store, I am like a kid in a candy store. But getting back on track now, seeing all of these commercials and advertisements for back to school stuff, has always been the sign for me ever since I can remember, that summer is winding down and school is preparing to start. Now its a sign that my mom is headed back to work after having a few weeks off, and that I, unlike my friends, am not preparing to return to school (college). Its a very tough time for me emotionally because its just another reminder of what my illness has taken a way from me, my ability to be able to attend college. Me being the Type-A, organized planner that I am, I would be healthy (or at least having my disease under control), and taking classes at Texas State University in San Marcos, where I would be getting my undergraduate degree in child development, and have a job maybe being a nanny or babysitter to a family, and then earning my child-life track degree (the equivalence of a masters), becoming a child-life specialist working in the Hem/Onc or BMT unit at Children's Medical Center in Dallas or Texas Children's in Houston, or working as a child-life specialist for palliative care and/or hospice. Instead, I am trying to figure out how I am going to get my diploma, with my condition steadily declining, and me continuing to do weekly chemo, the combination of the two causing issues with memory and my ability to focus.
Its difficult to see my friends have jobs, progress in college, live on their own and be able to drive and be independent. I on the other hand have never able to learn how to drive a car, have been to sick to get my diploma, need help with daily tasks, not being able to walk without a walker, or very far for that matter, and cannot be left alone for more than a few hours. I think for me the most difficult thing to deal with, aside from the physical issues, is my education. I have always done well in school, have a passion for learning, and before I got sick, was a straight A student, and a member of the National Junior Honor Society. Seeing and hearing about back to school, just brings back the flood of emotions I have about not being able to graduate from high school with my friends, and attend college. I have been turning to God, and talking with friends and my therapist, to help me deal with all that I am feeling. I think whats harder than not actually being able to go to college, is that because of my memory and focus issues, I can't study for more than 30 minutes at a time, with an hour to an hour and a half break needed, to where collectively I can only study about two hours a day. For someone who has a passion for learning, I feel as though that I have this bright mind trapped inside this sick body.
I have had to learn to accept the fact that my body is not strong, and that one of the many side-effects of the medicine that is keeping me alive, and giving me some sort of a quality of life, as well as my illness itself, is that I have difficulty with memory and focus. My faith and the Lord help me to know that this is not something that I can control, and its not because of something I did or didn't do, its just the reality of the situation. I pray that God will give me the strength that I need to be able to function as best that I can. I know that God did not do this to me, but my faith in him has helped me to try to stay as positive and joyful as I can. Studies have shown that a negative outlook and attitude does have an affect on whether or not a person can improve or get worse health wise. Ephesians 4:23 says, "...to be made new in the attitude of your minds:..." I love this verse, because it helps me to know that with a positive and joyful attitude and mind, I can be fresh and new. This encourages me to stay positive during this time of year, when things can be emotionally difficult. I can't change the situation, but I know that with positive mindset, love and support from my friends and family, and faith and strength in God, I can learn to accept the fact that my life is different then what I hoped or imagined it would be, but it is still wonderful and blessed. That is what matters most.
On another note, things have been as "stable" as possible health wise. I had chemo yesterday, and am feeling a bit blah, but Sunday is the worst because the IV anti-nausea meds have worn off. I have been having some difficulty in getting some lab work that Dr. Carrasco ordered. Apparently it cannot be drawn out of my port-o-cath because the heparin they use to prevent clots would interfere with the particular tests he needs. Unfortunately because my veins are so sclerotic and damaged from all the chemo, and steroids, and because blood can't be drawn out of my left arm due to the blood clot in my neck, none of the labs will draw from me. The nurses were going to do it peripherally yesterday while I was at chemo, but I found out that one of the tests required that I needed to be fasting 12 hours before the test. I had known about the tests for a while, but this was the first time that I heard that I needed to fast. I first thought I will just fast before my next chemo, but I realized with all the meds and the chemo, fasting before would not be a good idea because I would get a really bad headache and get sick. With all the meds that I take (a lot of which require I eat something), I don't usually fast unless I absolutely have to, like I am being sedated for a procedure. This coming Thursday, I will be having both wrists, knees, and ankles injected with steroids. This will be done at Dell Children's Hospital, and since I will be sedated for the procedure, which will require me to fast, I am hoping they can do the blood work their, since they have nurses and anesthesiologists that know how to do IV on difficult patients. I have had these injections a few times before, and although they didn't work as well as they were supposed to, for as long as they were supposed to, with all the difficulty I am having now I would rather have a little relief then none. I am definitely a bit sore afterwards, but I know it will go away in a few days. Please pray that these injections will provide me more relief than they have in the past, and for a longer period. I appreciate all the love, support, and encouragement from all of you. Each one of you are truly a blessing to me and my family. I can't say thank you enough.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Saturday, July 20, 2013
Mini Vacation
This past Monday, my mom and I went to the Hyatt Hill Country Spa & Resort in San Antonio, and we came back Thursday. It was so wonderful to be able to get away for a bit, and relax, and come back refreshed and rejuvenated. A bonus was that we didn't have an extremely long car trip, but we were far enough that we felt like we were really away. The hotel was beautiful, and reminded me a lot of the Hyatt Lost Pines in Bastrop. This one seemed to be a better place to go in the summer time, with their multiple pools and other amenities. The Lost Pines seemed like a better place to go for the winter time. The first night we scoped the place out, and had dinner at their restaurant (which wasn't to bad), and then went up to our room to hang out and relax. The room was big, and very handicap accessible, so that was really nice. The next morning we took our time, and ordered some room service (it was pretty pricey, so we only did it that one time). We then headed over to the Wildflower Salon & Spa. It was a long walk, and pushing a wheelchair makes it even more difficult. We didn't know that they had a golf cart that could drive us to the spa and back, so we did that when we were done with our appointments, and the next day as well. It was such blessing to be able to have that amenity, and the driver/valet guy Chris really helped us during our stay when it came to transport. All of the staff was very friendly and helpful. Our first full day, we both got 90 minute massages, and mine was a therapeutic massage. It was HEAVENLY. I really wanted to have my feet and ankles massaged because they are swollen, as well as my hands and wrists. The therapist massaged all the areas that I wanted worked on, and she started and finished with my feet/ankles, which is exactly what I wanted. I know I have had a good massage when I don't want it to end, and I didn't want it to. Its interesting because nothing really helps alleviate the swelling in my feet and ankles, but when they get massaged, the swelling can go down for an hour our two, it may not be very long, but its an hour or two of bliss. After we were relaxed from our massages, one of my mom's best friend's from her PhD program at UT, Susan, who lives in San Antonio, and basically right down the road from the hotel, came and joined us at the hotel, where we hung out by the pool and had pina coladas (mine was a virgin of course) and hamburgers. Unfortunately shortly after we finished eating it started to rain, so we went back up to the room, and freshened up. Since we had a few hours to kill before dinner, we decided as a spur of the moment thing to go to the movies, and ended up going to see the Channing Tatum flick White House Down. It was pretty good, although we were a bit disappointed he didn't take his shirt off so we could see his "hot bod", but he looks good no matter what he is wearing. Afterwards we headed to a local Mexican restaurant, where I had delicious enchiladas with a tomatillo sauce, and a chocolate and flan cake for a treat. When we go out of town anywhere we like to go to places that are local. We don't want to go to an Outback Steakhouse or an Olive Garden, since we can go there here in Austin. Plus when your in San Antonio you have to get Mexican food, and the restaurant that we went to used fresh ingredients, and you could definitely tell. We were so full that we practically crashed right when we got back to the room. We both had a restful sleep, thanks to being so relaxed from our massages.
The next morning mom went down to the "general store" in the hotel, and got us some Starbuck's coffee, and some banana nut bread and a bagel. Although they serve Starbuck's coffee their, it didn't taste like the coffee at Starbuck's, but it was good. My mom and I are coffee addicts, just like Lorelai and Rory in Gilmore Girls. After having a lazy morning taking our time, we went back to the spa. My mom didn't know if Susan was going to hang out with us again, because she didn't want me to feel that she was infringing on our mother-daugher time. I liked Susan a lot and asked if she wanted to hang out with us again, and mom was able to get her in for a last minute head and neck massage at the same time as we were getting our spa treatments. She was really excited about it, and she deserves it for working so hard both at her job, and on her dissertation for her PhD. Mom got a facial, and I got a second 90 minute massage. It was just as good as the first one (I had a different therapist though), and she worked on the areas I wanted her to focus on (particularly feet/ankles and hands/wrists), and just like the first one, she started and finished with the feet/ankles. And, the swelling went down for about an hour or two. After our treatments, we had some of the little snacks they had, and ordered lunch to be brought to us at the pool at the spa. The spa pool was so nice and relaxing, and there were no kids like there are at the activity pool, so that was nice. There were maybe 2 or 3 other people that came to the pool, but they sat farther from us an were relaxing themselves. After our poolside lunch, we went into the hot tub. The warm water felt so good on my muscles and joints, and it was even better because I had just finished the massage. We then just hung outside, got some sun, got in the pool (which was a bit more chilly then I would prefer), and relaxed. We then freshened up, and went to dinner at another local restaurant called Stone Werks. It reminds me a lot of Cool River here in Austin, and has a variety of food. We started of with a wonderful shrimp cocktail (my mom and I love shrimp), I had their delicious special pork chop with an apricot sauce, and carrots and wedged potatoes. We finished it off by splitting a delicious brownie topped with ice cream, and of course coffee. We went back to the hotel, said goodbye to Susan, and relaxed watching Royal Pains and Necessary Roughness, and playing Words With Friends. I just recently introduced my mom and grandmother to Words With Friends, and now they are addicted. The next morning we took our time, packed up, headed downstairs to hotel's buffet breakfast, which was pretty good, and then headed out on the road back to Austin.
I am so thankful and blessed that my mom and I were given the opportunity to be able to go on this mini getaway, and spend time with each other, and a good friend. We have both been under a lot of stress lately, each of us dealing with different things (but some are the same), and my mom is going back to work next Friday. My mom has been working EXTREMELY hard, doing three different jobs. I can't express how proud I am of her and all that she has done. She has overcome a lot, and definitely deserved this vacation. I know that there are many people who can't afford to go on vacations like we were able to do, and that helps me to be thankful for all the wonderful blessings God has given me. Yes, my family and I are going through a lot right now with my illness, and other things, but there are more blessings and love then there are difficulties, stress and hardships. I thank God that he has provided for my family what we need, and I believe that this getaway was something that we needed. Some may not agree with that, but I believe that is was necessary, so that we were able to relax and take our minds off of all the stress at home and work, and to come back refreshed and rejuvenated, both physically and mentally. Colossians 1:11 says, "...being strengthened with all power according to his glorious might so that you may have great endurance and patience." I love this scripture verse, because I feel that it embodies what this vacation did for us. It allowed us to be able to relax, (for me to be able to mediate and have that one on one time with God) and be renewed so that we came back mentally strengthened so that we can endure the difficulties that we are facing, and be patient when dealing with everything. My mom and I are feeling a bit renewed and refreshed, and are trying to enjoy these last days before she has to go back to work. I know that this vacation, and others like it, are not something that we can do very often. I think that is what allows us to really slow down and enjoy every moment of it, because we know that it could be another year before we can enjoy doing something like it again. I also feel that it is important to try to get away for a day or two if you can, so that you can be renewed and strengthened even more. If you don't have the means to travel, light some scented candles, turn off the lights and enjoy a nice hot bubble bath or shower with scented soaps. Sit outside and close your eyes, and let the sun warm your face and relax you. If its rainy and yucky outside, curl up on the couch or bed with a blanket and watch a good movie with some popcorn, read a good book with your favorite cup of coffee or tea, or take a nice long nap. Anything that helps you to relax, and allows you to feel refreshed and strengthened, do it. Its important for all of us (whether we have a chronic illness or not) to take time and slow down from the hectic, stressful things that life brings. Especially now that the school year is about to start, stress levels and chaos will increase. But if once in awhile we take time, even if its just an hour, to slow down and recharge, we will have the endurance and patience to deal with whatever life brings.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
The next morning mom went down to the "general store" in the hotel, and got us some Starbuck's coffee, and some banana nut bread and a bagel. Although they serve Starbuck's coffee their, it didn't taste like the coffee at Starbuck's, but it was good. My mom and I are coffee addicts, just like Lorelai and Rory in Gilmore Girls. After having a lazy morning taking our time, we went back to the spa. My mom didn't know if Susan was going to hang out with us again, because she didn't want me to feel that she was infringing on our mother-daugher time. I liked Susan a lot and asked if she wanted to hang out with us again, and mom was able to get her in for a last minute head and neck massage at the same time as we were getting our spa treatments. She was really excited about it, and she deserves it for working so hard both at her job, and on her dissertation for her PhD. Mom got a facial, and I got a second 90 minute massage. It was just as good as the first one (I had a different therapist though), and she worked on the areas I wanted her to focus on (particularly feet/ankles and hands/wrists), and just like the first one, she started and finished with the feet/ankles. And, the swelling went down for about an hour or two. After our treatments, we had some of the little snacks they had, and ordered lunch to be brought to us at the pool at the spa. The spa pool was so nice and relaxing, and there were no kids like there are at the activity pool, so that was nice. There were maybe 2 or 3 other people that came to the pool, but they sat farther from us an were relaxing themselves. After our poolside lunch, we went into the hot tub. The warm water felt so good on my muscles and joints, and it was even better because I had just finished the massage. We then just hung outside, got some sun, got in the pool (which was a bit more chilly then I would prefer), and relaxed. We then freshened up, and went to dinner at another local restaurant called Stone Werks. It reminds me a lot of Cool River here in Austin, and has a variety of food. We started of with a wonderful shrimp cocktail (my mom and I love shrimp), I had their delicious special pork chop with an apricot sauce, and carrots and wedged potatoes. We finished it off by splitting a delicious brownie topped with ice cream, and of course coffee. We went back to the hotel, said goodbye to Susan, and relaxed watching Royal Pains and Necessary Roughness, and playing Words With Friends. I just recently introduced my mom and grandmother to Words With Friends, and now they are addicted. The next morning we took our time, packed up, headed downstairs to hotel's buffet breakfast, which was pretty good, and then headed out on the road back to Austin.
I am so thankful and blessed that my mom and I were given the opportunity to be able to go on this mini getaway, and spend time with each other, and a good friend. We have both been under a lot of stress lately, each of us dealing with different things (but some are the same), and my mom is going back to work next Friday. My mom has been working EXTREMELY hard, doing three different jobs. I can't express how proud I am of her and all that she has done. She has overcome a lot, and definitely deserved this vacation. I know that there are many people who can't afford to go on vacations like we were able to do, and that helps me to be thankful for all the wonderful blessings God has given me. Yes, my family and I are going through a lot right now with my illness, and other things, but there are more blessings and love then there are difficulties, stress and hardships. I thank God that he has provided for my family what we need, and I believe that this getaway was something that we needed. Some may not agree with that, but I believe that is was necessary, so that we were able to relax and take our minds off of all the stress at home and work, and to come back refreshed and rejuvenated, both physically and mentally. Colossians 1:11 says, "...being strengthened with all power according to his glorious might so that you may have great endurance and patience." I love this scripture verse, because I feel that it embodies what this vacation did for us. It allowed us to be able to relax, (for me to be able to mediate and have that one on one time with God) and be renewed so that we came back mentally strengthened so that we can endure the difficulties that we are facing, and be patient when dealing with everything. My mom and I are feeling a bit renewed and refreshed, and are trying to enjoy these last days before she has to go back to work. I know that this vacation, and others like it, are not something that we can do very often. I think that is what allows us to really slow down and enjoy every moment of it, because we know that it could be another year before we can enjoy doing something like it again. I also feel that it is important to try to get away for a day or two if you can, so that you can be renewed and strengthened even more. If you don't have the means to travel, light some scented candles, turn off the lights and enjoy a nice hot bubble bath or shower with scented soaps. Sit outside and close your eyes, and let the sun warm your face and relax you. If its rainy and yucky outside, curl up on the couch or bed with a blanket and watch a good movie with some popcorn, read a good book with your favorite cup of coffee or tea, or take a nice long nap. Anything that helps you to relax, and allows you to feel refreshed and strengthened, do it. Its important for all of us (whether we have a chronic illness or not) to take time and slow down from the hectic, stressful things that life brings. Especially now that the school year is about to start, stress levels and chaos will increase. But if once in awhile we take time, even if its just an hour, to slow down and recharge, we will have the endurance and patience to deal with whatever life brings.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Sunday, July 14, 2013
More Lemonade
This past Thursday I had an appointment with Dr. Carrasco (pediatric rheumatologist). He was extremely concerned at how bad I looked symptom wise. I had a lot of joint swelling, pain and stiffness, and a lot of muscle weakness as well. The rash on my face was very present, and my hands and feet were turning blue, and purple, and were very cold to the touch, and my tachycardia (high heart rate) has returned. He hasn't seen my hands and feet do that since I first saw him as a sophomore in high school. He (as well as Dr. CB the Hem/Onc doctor) was very concerned at how quickly I was declining, as the weekly Methotrexate chemo was being lowered, and I was at 20mg (down 15mg from 35mg). I told both him, and Dr. CB, that I know the goal is to taper me down 5mg every 2 weeks, stay at 20mg for about a month, and then go back down and eventually be completely off of it. I know that being on chemo long term, especially at the dose and frequency that I am on, has risks, but I feel that since I am getting worse so quickly when we went down 15 mg, that I am afraid going down even more could be very bad. I know the Methotrexate is not working as well as its supposed to, but its keeping me at a "steady decline", and I fear that going down would cause things to explode. Could their be a possibility that we stay at the 20mg longer? Dr. CB even suggested going back up a little bit and doing a slower tapering. Both Dr. Carrasco and Dr. CB agreed that going down would not be good (15mg is given by injection as opposed to IV, and having been on almost every dose of Methotrexate, I feel it would be the equivalent of injecting water). Dr. Carrasco decided to increase it back up to 25mg, and he would reevaluate me in two months. If there would be any benefit from it, it would take 2-4 months for it to show up. An increase of 5mg doesn't sound like a lot, but its 25% more, which is quite a bit. I definitely had/have mixed emotions about the increase of "lemonade". I was hoping that he would keep it at 20mg, but I know that this is better. There is a concern that because I have been on Methotrexate for so long, and have been at 25 before, that it could not have any effect on me, but we shall see. Dr. Carrasco also recommended joint injections of steroids in my ankles and wrists, which will be done by the interventional radiologist. I have also been having issues where my knee(s) pops in and out of place, and people experience that all the time, but because my joints are so bad, and the muscles in my thighs are so week that they can't support them, the fall risks becomes high. When we thought that I was going to get the BMT, I visited the orthopedist about this problem, and he said that if he went in and fixed it, while my muscles are so weak because my disease isn't under control, it wouldn't be beneficial. He said after you have your BMT, and your disease is under control, and your muscles are stronger, come back and I will fix it. Well obviously the BMT is not happening, and I am still having this problems. I was doing exercises to keep the muscles conditioned as much as I could, but my joints and muscles got so much worse, that the PT told me to stop because I was losing more muscle then I was conditioning and strengthening them. Both the PT and Dr. Carrasco said, that because I can walk short distances with the walker, that is my exercise, and I need to maintain that as much as I can. If I fall, then my ability to walk would be compromised. Dr. Carrasco said because I am not on any biologics (Enbrel, Humira, etc.) now is the time to get me knee(s) fixed. I meet with the orthopedist a week from tomorrow to discuss what to do. As you can imagine absorbing all this information is mind boggling, and we are trying to process it as much as we can.
On another note, I have been staying with my mom since 4th of July, and will continue to until she goes back to work Friday, July 26th. Both she and I don't understand why their first day back is a Friday, instead of Monday the 29th, but who knows? We are leaving tomorrow for the Hyatt Hill Country Spa & Resort in San Antonio. We are so SUPER excited to be able to get away. Its nice because San Antonio is not a very long car ride, but its far enough to where you feel like you've gotten away. We both can't wait to go to the spa, and I am really looking forward to my massages, particularly having my feet and ankles rubbed, because they are so swollen. I could have my feet and ankles massaged all day, everyday. I am just trying to stay as relaxed and stress free as possible. I have gotten to see some friends, and look forward to seeing more of them. Two of my best friends and I are trying to plan a trip in August, but with all three of us living in different cities, and having busy schedules, it complicates things. But we are going to try are absolute hardest to make it work.
Lately, I have been turning a lot to scripture, prayer and God, to help me deal with all that has been going on. I expected to have a worsening of my symptoms, but didn't expect it to happen so quickly, and dealing with that has been a challenge. My family and I have been having to practice patience A LOT because of "chemo brain" and fatigue. I have been having difficulty focusing, and remembering things, such as if I have told someone something already or not. I have had times when it has taken me 30 minutes just to get through a paragraph. I have been relying on God to help me deal with this, as well as with the increase in physical symptoms. I love what Colossians 1:11 says, "...being strengthened with all power according to his glorious might so that you may have great endurance and patience,..." I think this scripture verse is so wonderful, because it helps me to know that the Lord's power is what is strengthening me so that I can have endurance and patience, two things that are necessary in dealing with everything. Trusting and relying on God is an important and difficult thing to do. But I know that by surrendering everything to Him, I will be given the strength and endurance to get through this journey. Without God, I am weak, but with Him I will have exceedingly and abundantly more than I could have ever imagined. And that gives me peace.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
On another note, I have been staying with my mom since 4th of July, and will continue to until she goes back to work Friday, July 26th. Both she and I don't understand why their first day back is a Friday, instead of Monday the 29th, but who knows? We are leaving tomorrow for the Hyatt Hill Country Spa & Resort in San Antonio. We are so SUPER excited to be able to get away. Its nice because San Antonio is not a very long car ride, but its far enough to where you feel like you've gotten away. We both can't wait to go to the spa, and I am really looking forward to my massages, particularly having my feet and ankles rubbed, because they are so swollen. I could have my feet and ankles massaged all day, everyday. I am just trying to stay as relaxed and stress free as possible. I have gotten to see some friends, and look forward to seeing more of them. Two of my best friends and I are trying to plan a trip in August, but with all three of us living in different cities, and having busy schedules, it complicates things. But we are going to try are absolute hardest to make it work.
Lately, I have been turning a lot to scripture, prayer and God, to help me deal with all that has been going on. I expected to have a worsening of my symptoms, but didn't expect it to happen so quickly, and dealing with that has been a challenge. My family and I have been having to practice patience A LOT because of "chemo brain" and fatigue. I have been having difficulty focusing, and remembering things, such as if I have told someone something already or not. I have had times when it has taken me 30 minutes just to get through a paragraph. I have been relying on God to help me deal with this, as well as with the increase in physical symptoms. I love what Colossians 1:11 says, "...being strengthened with all power according to his glorious might so that you may have great endurance and patience,..." I think this scripture verse is so wonderful, because it helps me to know that the Lord's power is what is strengthening me so that I can have endurance and patience, two things that are necessary in dealing with everything. Trusting and relying on God is an important and difficult thing to do. But I know that by surrendering everything to Him, I will be given the strength and endurance to get through this journey. Without God, I am weak, but with Him I will have exceedingly and abundantly more than I could have ever imagined. And that gives me peace.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Thursday, July 4, 2013
Happy 4th Of July
HAPPY 4TH OF JULY!!!! Today is the day in which we celebrate our country's independence. I am so blessed to live in a free country. When I watch the news, and read and hear about other countries around the world, where people (particularly women) have limited rights. In Muslim countries, women have to go out covered pretty much from head to toe, they are not aloud to vote, some countries do not allow people to have freedom of religion, and will arrest and even kill those who are Christians. Some governments ration out things such as food where only the elite are given adequate food and housing, and the poor are not. I think of all the wonderful freedoms that I have in this country. I am aloud to where what I want, to vote, to practice my faith, listen to the types of music, and read the kind of books that I want to. I am not discriminated against because of my race, religious beliefs, gender, or sexual orientation. Today, we celebrate these and other freedoms, and remember those who have given their lives, and fight for our country, and will continue to do so. I am saddened that those in other countries are not given the same rights and freedoms that we have, and I pray that their governments and societies will move forward and allow them to have some if not all of the freedoms that we do. I am proud to be an American, and live in this wonderful country. I love what Psalm 119:45 says, "I will walk about in freedom...". I think that is such a wonderful piece of scripture. I think it embodies what we have here in America, because we are aloud to walk and live in freedom. We have laws to keep us safe and protect us, but we are free to say what we want, believe what we want, and do what we want (within reason), and that is a true gift and blessing.
I have no big plans for the 4th. My mom, grandparents, and I, and I believe a second or third cousin on my moms side are going to my Great Great Aunt Martha's house, where my grandfather is grilling salmon and steak, and we are having, a corn pudding of some kind, pea salad, and dessert. My mouth is already watering. Health wise I'm hanging in there. I had steroid injections in my SI joints yesterday, as well as trigger point injections in my neck. Luckily I had some sedation to take the edge off the pain. I am a bit sore but nothing I can't handle. I'm hoping in the long run, that this will help with some of my pain. I am down to 20mg of the weekly Methotrexate, and have noticed an increase in symptoms. I meet with my Hem/Onc doctor, Dr. CB tomorrow, and Dr. Carrasco next Thursday. I know they were going to keep me at 20mg for a month or two, but I'm going to ask if they can keep me on it longer. I know being on chemotherapy long term can be problematic, but if they are not going to give me any other treatment, I am willing to take the risk, and deal with the side-effects of the chemo versus feeling and getting worse from my diseases. I am happy that I get to spend about 3 weeks with my mom, and from the 15-18th were going to the Hill Country Hyatt in San Antonio for a little getaway which should be really nice. They have a spa there, and I can't wait to get my feet and ankles massaged. I hope everybody is doing well, and those of you who are in Texas, I hope you can stay cool in this Texas heat. I hope everybody has a safe, fun, and happy 4th of July, and we can all remember, be thankful for, and celebrate our precious freedom.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
I have no big plans for the 4th. My mom, grandparents, and I, and I believe a second or third cousin on my moms side are going to my Great Great Aunt Martha's house, where my grandfather is grilling salmon and steak, and we are having, a corn pudding of some kind, pea salad, and dessert. My mouth is already watering. Health wise I'm hanging in there. I had steroid injections in my SI joints yesterday, as well as trigger point injections in my neck. Luckily I had some sedation to take the edge off the pain. I am a bit sore but nothing I can't handle. I'm hoping in the long run, that this will help with some of my pain. I am down to 20mg of the weekly Methotrexate, and have noticed an increase in symptoms. I meet with my Hem/Onc doctor, Dr. CB tomorrow, and Dr. Carrasco next Thursday. I know they were going to keep me at 20mg for a month or two, but I'm going to ask if they can keep me on it longer. I know being on chemotherapy long term can be problematic, but if they are not going to give me any other treatment, I am willing to take the risk, and deal with the side-effects of the chemo versus feeling and getting worse from my diseases. I am happy that I get to spend about 3 weeks with my mom, and from the 15-18th were going to the Hill Country Hyatt in San Antonio for a little getaway which should be really nice. They have a spa there, and I can't wait to get my feet and ankles massaged. I hope everybody is doing well, and those of you who are in Texas, I hope you can stay cool in this Texas heat. I hope everybody has a safe, fun, and happy 4th of July, and we can all remember, be thankful for, and celebrate our precious freedom.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Thursday, June 27, 2013
Sunday's Speech
This past Sunday I spoke at the adult Sunday school at my church, where I shared my story of the journey of my illness, and how my faith has played a significant role in being able to handle everything that I have been through. I was also pleased that my dad, step mom, brother and sister were able to come and hear it. They came down to have dinner with me the previous night, and were able to stay and hear the speech. At least seventy-five people were their and I didn't expect that it would touch and inspire so many people. My grandmother said that nobody was fidgeting in their seats, nobody got up and left or talked to their neighbor. I also didn't expect people to cry, but they did. Even I got teary eyed a couple of times, and I did not expect that. I had numerous people come up to talk to me afterward to say how inspired they were, and how they didn't know all of what I had been through, and have gotten sweet and encouraging cards since then. My grandmother also said many people, including former Sunday school teachers from when I was younger, come up to her and said similar things.
For awhile I have had this void, because I have always been the type of person who enjoys volunteering, doing service projects, and being a blessing and encouraging others, and because of my illness I have felt I have been more on the receiving end instead of the giving. I had been praying that God will help me to find a way to be a blessing and encourage and inspire others. When I got the opportunity to share my story, and heard how people were excited and looking forward to hearing it, I felt that void could begin to be filled. It wasn't until after I shared my story that I really felt that void actually beginning to be filled. I have been thinking lately about what I could do in life, knowing what the situation is/could be with my illness. I realized that I could continue blogging, and eventually turn the blogs into a book. I can also try and look for religious organizations, magazines, and websites that would allow me to share my story of illness and faith. I also would like to start volunteering in the playrooms at Dell Children's, work more with the Make-A-Wish Foundation, and maybe even start a teenagers with arthritis support group through my pediatric rheumatologists office. I feel that these things are what I am called to do. I love what 1 Corinthians 9:23 says, "I do all this for the sake of the gospel, that I may share in its blessings." I think that this scripture is so true. I feel that by sharing my story and helping others, I am doing it for both therm and God, and at the same time everyone will be blessed. I also love Romans 15:29 which says, "I know that when I come to you, I will come in the full measure of the blessing of Christ." This piece of scripture comforts me, because it helps me to know that by doing what the Lord calls me to do, I will receive his blessings, because I am being called to be a blessing, and to encourage and inspires others.
On a different note, things are going along. I am down to 20 mg of the weekly Methotrexate, which I like to call "lemonade", because its yellow, and lemonade sounds like a positive way to describe a poison. With this lower dose, I am experiencing more symptoms, including increased joint pain, swelling and stiffness, increased muscle weakness, shortness of breath, and fatigue. They have increased my methadone to 40 mg from 30mg. I am not sure how long they will keep me on the 20, before going down to 15, but because I am feeling worse, I hope that it is for a little while at least. I meet with my Hem/Onc doctor, Dr. Cline-Burkhardt (Dr. CB) next Friday, and Dr. Carrasco the following week. I was pleased to have some fun in the past two weeks. I had dinner with one of my best friends from my support group the week before last, spent the night at the Holiday Inn with my god sister last Monday, where we watched movies, ordered room service, and read gossip magazines while eating our favorite candy Dazzlers. I got to see my dad, step-mom, brother and sister on Saturday where we went to the Cheesecake Factory and then Barnes & Nobles, and had breakfast after my speech. Sunday afternoon I went to the Domain with another best friend from church, which was really fun. This is my mom's last week of work, so I am looking forward to spending some quality time with her, and going on a little getaway, and maybe going on a trip with two of my best friends. With all the stress, I am glad to be getting some fun in, even if it causes increased pain and fatigue, it is totally worth it. I am continuing to try and trust God with all that is going, but its definitely a process. Knowing that I have Him as my rock and strength, gives me peace and comfort, because I know that He can accomplish things that I can't do on my own. By giving my life and heart to Him, He will be able to do more than I could ever imagine.
I believe they will be posting the recording of it on the church's website, and possibly make CD's. I will let you all know how you will be able to hear the recording of it, if you so desire.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
For awhile I have had this void, because I have always been the type of person who enjoys volunteering, doing service projects, and being a blessing and encouraging others, and because of my illness I have felt I have been more on the receiving end instead of the giving. I had been praying that God will help me to find a way to be a blessing and encourage and inspire others. When I got the opportunity to share my story, and heard how people were excited and looking forward to hearing it, I felt that void could begin to be filled. It wasn't until after I shared my story that I really felt that void actually beginning to be filled. I have been thinking lately about what I could do in life, knowing what the situation is/could be with my illness. I realized that I could continue blogging, and eventually turn the blogs into a book. I can also try and look for religious organizations, magazines, and websites that would allow me to share my story of illness and faith. I also would like to start volunteering in the playrooms at Dell Children's, work more with the Make-A-Wish Foundation, and maybe even start a teenagers with arthritis support group through my pediatric rheumatologists office. I feel that these things are what I am called to do. I love what 1 Corinthians 9:23 says, "I do all this for the sake of the gospel, that I may share in its blessings." I think that this scripture is so true. I feel that by sharing my story and helping others, I am doing it for both therm and God, and at the same time everyone will be blessed. I also love Romans 15:29 which says, "I know that when I come to you, I will come in the full measure of the blessing of Christ." This piece of scripture comforts me, because it helps me to know that by doing what the Lord calls me to do, I will receive his blessings, because I am being called to be a blessing, and to encourage and inspires others.
On a different note, things are going along. I am down to 20 mg of the weekly Methotrexate, which I like to call "lemonade", because its yellow, and lemonade sounds like a positive way to describe a poison. With this lower dose, I am experiencing more symptoms, including increased joint pain, swelling and stiffness, increased muscle weakness, shortness of breath, and fatigue. They have increased my methadone to 40 mg from 30mg. I am not sure how long they will keep me on the 20, before going down to 15, but because I am feeling worse, I hope that it is for a little while at least. I meet with my Hem/Onc doctor, Dr. Cline-Burkhardt (Dr. CB) next Friday, and Dr. Carrasco the following week. I was pleased to have some fun in the past two weeks. I had dinner with one of my best friends from my support group the week before last, spent the night at the Holiday Inn with my god sister last Monday, where we watched movies, ordered room service, and read gossip magazines while eating our favorite candy Dazzlers. I got to see my dad, step-mom, brother and sister on Saturday where we went to the Cheesecake Factory and then Barnes & Nobles, and had breakfast after my speech. Sunday afternoon I went to the Domain with another best friend from church, which was really fun. This is my mom's last week of work, so I am looking forward to spending some quality time with her, and going on a little getaway, and maybe going on a trip with two of my best friends. With all the stress, I am glad to be getting some fun in, even if it causes increased pain and fatigue, it is totally worth it. I am continuing to try and trust God with all that is going, but its definitely a process. Knowing that I have Him as my rock and strength, gives me peace and comfort, because I know that He can accomplish things that I can't do on my own. By giving my life and heart to Him, He will be able to do more than I could ever imagine.
I believe they will be posting the recording of it on the church's website, and possibly make CD's. I will let you all know how you will be able to hear the recording of it, if you so desire.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
Saturday, June 8, 2013
Sunday School Speech
Sorry I haven't posted in lately, I haven't had any real news until this past week, and I am so excited to share it with everyone. I have been asked to speak at my church's (St. Matthew's Episcopal Church) Sunday school, on Sunday, January 23rd at 9:15 AM. I will be telling my story about my journey living with my diseases, and how my faith has had such a big impact in helping me through this roller coaster ride. I have always wanted to share my story, in the hope of encouraging and inspiring others, not just those who are living with a chronic illness, but others as well. I want to share how when going through a difficult time, when you feel like giving up, that hope, and faith in the Lord can help you to get through it. I have gone to my church since I was around three or four years old. I went to Sunday school, Vacation Bible School in the summer, and my family and I always prayed before we ate. For me that was ok. But the summer before sixth grade, something changed. I was getting ready to start a new school with only two or three kids from my elementary school going, so as you can imagine I was pretty nervous. I decide that since I was going to a new school, and making new friends that it would be a chance to have a fresh start and sort of reinvent myself. A sweet neighbor of mine, who I have sadly lost touch with, shared with me some scripture verses, and prayed with me, to help calm some of my fears about starting middle school. As I read the verses she gave me, I decided I wanted to read more of God's word. I had seen a Teen Study Bible at my church, in Sunday school, and I went to the Christian bookstore and bought one. After reading a few verses, I made a commitment as part of my fresh start, to freshen my relationship with God. I decided to start reading my Bible and praying more, and that summer, recommitted myself to Christ. This decision came at a time, when I was just starting to feel like I needed something more powerful in my life, with starting a new school, moving from just going to Sunday school to going to youth group at church, and my dad moving back to Texas with my stepmom and half-sister, after spending five years away living in Colombia, South America. Little did I know that this recommittal to the Lord would have such a profound impact on my life.
When I became ill at the beginning of eighth grade, it had been two years since my recommitment, and I definitely felt as though I had grown both spiritually in my relationship with God, and as a person. I think that this is what really helped me in dealing with my illness. I feel that by sharing how much my life has changed since I became sick, and how God has helped me to deal with these changes, I can show others that when life deals you an unfair hand, relying on the Lord and your faith, and trusting Him, instead of giving up and turning away from Him, will help make dealing with challenges, and life in general much easier. That you can feel at peace and content with whatever happens in life, as God has already laid out the path for our life before we were even created. I hope others can take away a message of hope, inspiration, encouragement, and God's love. 2 Thessalonians 2:14 says, "He called you to this through our gospel, that you might share in the glory of our Lord Jesus Christ." I feel that this is perfect in describing the reason why I want to share my story, in that God has called me to do so, and to share in the glory of our Lord Jesus Christ.
Changing subjects, I wanted to give an update on whats been going on health wise. They have weaned my chemo down to 25mg (I have said they are weaning me down 5mg every two weeks), and with this decrease, I have definitely noticed some increases in symptoms, particularly fatigue, more joint pain, stiffness and swelling, increased shortness of breath requiring me to use my oxygen more frequently, and my tachycardia has started to return. I met with a palliative care doctor (Dr. Robert Friedman) last Wednesday, and he is such a wonderful doctor, very thorough, caring and compassionate. The goal of palliative care is quality of life, and keeping you comfortable. He recommended that I increase my Methadone from 30mg 3x a day to 40mg 3x a day, to help better manage my pain. I also started an appetite suppressant Phentermine, to help me lose some of the weight I have gained from being on steroids for so long. Coincidentally the phentermine is a stimulant that could help with my fatigue, which is something that Dr. Friedman wanted to help me with. If I wasn't on Phentermine, he would prescribe me Ritalin another stimulant, commonly used to treat kids with ADHD, to help with the fatigue. Even when I am off of the chemo I will still have to be very careful about getting infections, avoiding crowds, and wearing a mask when necessary. I have to be particularly careful of respiratory infections, because I have diminished capacity in my lungs due to the muscles around my lungs being so week because of the Dermatomyositis. This makes it much more difficult for me to breath in, so if I get a respiratory infection it would be even more difficult for me to breath in and cough up all the krudd, so my chances of getting pneumonia are increased, and if I get pneumonia it could be deadly. In regards to chemo, when I get to 20mg, they will keep me at that dose for a few months and then wean me back down 5mg every two weeks. 20mg was the dose at which I had started getting the methotrexate as an infusion instead of an injection, and when my hair started falling out again. I asked the nurse yesterday if when I get to 15mg will it start to grow back, and she said probably not, because of how long I have been on the higher dose, and the fact that I get it weekly. As you can imagine, I wasn't very happy to hear that, but not having to worry about my hair is one less thing to worry about.
I want to say thank you to all of you who read my blog, to my family, friends, church community, and doctors and nurses. Without the love, support, and encouragement that each of you have provided individually, and as a whole, this roller coaster of a journey would have been/and continue to be much more difficult. You all are there when I need to vent or a shoulder to cry on, to provide humor and laughter when I need, and provide me with friendship and unconditional love and support. For that I am so very blessed, and grateful to God. Thank you again.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
When I became ill at the beginning of eighth grade, it had been two years since my recommitment, and I definitely felt as though I had grown both spiritually in my relationship with God, and as a person. I think that this is what really helped me in dealing with my illness. I feel that by sharing how much my life has changed since I became sick, and how God has helped me to deal with these changes, I can show others that when life deals you an unfair hand, relying on the Lord and your faith, and trusting Him, instead of giving up and turning away from Him, will help make dealing with challenges, and life in general much easier. That you can feel at peace and content with whatever happens in life, as God has already laid out the path for our life before we were even created. I hope others can take away a message of hope, inspiration, encouragement, and God's love. 2 Thessalonians 2:14 says, "He called you to this through our gospel, that you might share in the glory of our Lord Jesus Christ." I feel that this is perfect in describing the reason why I want to share my story, in that God has called me to do so, and to share in the glory of our Lord Jesus Christ.
Changing subjects, I wanted to give an update on whats been going on health wise. They have weaned my chemo down to 25mg (I have said they are weaning me down 5mg every two weeks), and with this decrease, I have definitely noticed some increases in symptoms, particularly fatigue, more joint pain, stiffness and swelling, increased shortness of breath requiring me to use my oxygen more frequently, and my tachycardia has started to return. I met with a palliative care doctor (Dr. Robert Friedman) last Wednesday, and he is such a wonderful doctor, very thorough, caring and compassionate. The goal of palliative care is quality of life, and keeping you comfortable. He recommended that I increase my Methadone from 30mg 3x a day to 40mg 3x a day, to help better manage my pain. I also started an appetite suppressant Phentermine, to help me lose some of the weight I have gained from being on steroids for so long. Coincidentally the phentermine is a stimulant that could help with my fatigue, which is something that Dr. Friedman wanted to help me with. If I wasn't on Phentermine, he would prescribe me Ritalin another stimulant, commonly used to treat kids with ADHD, to help with the fatigue. Even when I am off of the chemo I will still have to be very careful about getting infections, avoiding crowds, and wearing a mask when necessary. I have to be particularly careful of respiratory infections, because I have diminished capacity in my lungs due to the muscles around my lungs being so week because of the Dermatomyositis. This makes it much more difficult for me to breath in, so if I get a respiratory infection it would be even more difficult for me to breath in and cough up all the krudd, so my chances of getting pneumonia are increased, and if I get pneumonia it could be deadly. In regards to chemo, when I get to 20mg, they will keep me at that dose for a few months and then wean me back down 5mg every two weeks. 20mg was the dose at which I had started getting the methotrexate as an infusion instead of an injection, and when my hair started falling out again. I asked the nurse yesterday if when I get to 15mg will it start to grow back, and she said probably not, because of how long I have been on the higher dose, and the fact that I get it weekly. As you can imagine, I wasn't very happy to hear that, but not having to worry about my hair is one less thing to worry about.
I want to say thank you to all of you who read my blog, to my family, friends, church community, and doctors and nurses. Without the love, support, and encouragement that each of you have provided individually, and as a whole, this roller coaster of a journey would have been/and continue to be much more difficult. You all are there when I need to vent or a shoulder to cry on, to provide humor and laughter when I need, and provide me with friendship and unconditional love and support. For that I am so very blessed, and grateful to God. Thank you again.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
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