Limb Girdle Muscular Dystrophy (LGMD) Awareness Day

         September 30th, is LGMD (Limb Girdle Muscular Dystrophy) Awareness Day. Before LGMD was mentioned to me by my doctor who tested and gave me my diagnosis of it, I had never heard of it. To me, MD is something that only affects boys, since the majority of MD patients are those with Duchenne's which only affects boys, and is usually diagnosed in infants or toddlers who are not able to walk at all. I have learned that there are several forms of MD. When people discover that I have MD it is something that they have heard about, but when they hear the story about how I got my diagnosis, it surprises them. When we learned about LGMD, and my family read all of the symptoms, it was like reading my whole life, as I have had all of them. Despite having textbook LGMD symptoms, my diagnosis was missed for 24 years, and lack of awareness is a big reason why.

            Unlike other forms of MD like Becker's and Duchenne's that only affect boys, LGMD affects both girls and boys equally. Most doctors when they think of MD, they automatically think of boys with Duchenne's, and if they do think about girls with MD it is girls who are very floppy as baby's. Although today doctors are more aware of LGMD and are referring patients, including girls, to get evaluated and tested for it, this has only been happening in the last few years. When I was younger LGMD was something nobody knew of or they knew very little about it, including doctors, and although that is still somewhat true, it is a lot better than when I was younger.
       
          Due to lack of awareness about LGMD my diagnosis was delayed for many many years, and the result of that was a lot of challenges. I received chemotherapy treatment and very powerful drugs because I was misdiagnosed as a rheumatological patient. I was given intense PT that could have caused more harm to me. I had challenges at school and after school activities because of my inability to do keep up physically, and I was even asked to leave various activities because of my challenges, and couldn't go to certain places like theme parks. Today I can go more places since I have an electric-powered  wheelchair. If there had been more awareness when I was younger I would have been able to receive a diagnosis much sooner. As a result I wouldn't have taken powerful drugs I never needed, wouldn't have done intense PT, and would have received services and not done certain things. I would have gotten a wheelchair sooner so I could go to more places where lots of walking was involved. With more awareness about LGMD children and even adults with LGMD can get an accurate diagnosis, and with that be able to get all the tools and resources that are needed to live a happy and productive life with LGMD.

But all of this has meaning because I know God has a plan for me. I absolutely waste no time on negative energy.

Word's I Have Had To Live With

             We all know that words can have a big impact, both positive and negative, and when you are living with a disability or illness this can be even more so. The other day I saw a video that a mother, who's young son has severe non-verbal autism, about things that people have said to her about her son, things that at the time are shocking or hard to hear, but that needed to be said, or word's of encouragement that came at just the right time. This got me thinking about some of the things people have said to me and my family and the impact that it has had. 

             When it comes to comments that people have said about my illness/disability, not knowing for many years why I had the challenges I did, I have had many different things said to me. When I was in school, the kids weren't the only ones who said things to me; teachers, and people who led my after school activities said things. Kids would ask me why did I walk a little differently, why I couldn't run and play the way the way did, why did I get off the floor differently. When kids ask or say things it can be hurtful, but I know they were asking out of curiosity. However, when an adult says something its much harder and in some ways makes it more real, not just for me and my family. We always knew that I did physical things a bit slower than the other kids and had a bit more difficulties in that area than my friends did, but we dealt with it. When I was in second grade, at the end of the year the teacher said that she believed I should be held back for another year because I wasn't able to keep up with the other kids physically on the playground, even though I was doing well academically.   When I participated in various after school activities such as karate, dance, and soccer, or ice skating the instructors told my grandparents that I couldn't come any more because I couldn't keep up, and that they were afraid I would hurt myself. Teacher's would yell at me to run faster at recess through a bullhorn, and treated me as though I was lazy and not trying hard enough. Being a bit slower physically resulted in teachers treating me as though I was slower mentally and, as a result, they didn't let me take gifted classes and I had to have a behavior chart.  Hearing comments like this was something that I ended up getting used to and in some way expected them to be said. 

            Then there were the comments doctors said to me or to my family members. These include things such as you're overreacting, she will outgrow these things,, its because she's tall, she is making things up, it's all in her head, and other things. Although, a few doctors, particularly the ones who knew me well, knew that was not true. I remember one day, my primary care doctor said something that was very prophetic: "When we find out what is wrong with you someday we are not going to like it." How prophetic those words were. When we finally got to the doctor that diagnosed my MD, there were things said that weren't necessarily surprising, but still hard to hear. During the first appointment, when we were asked all the questions about my history and things, the doctor asked; "What took you so long to get here?" Again, this wasn't something that necessarily a surprise, but hard to hear, especially for my family. When we were given the diagnosis we were told you should have a positive attitude, but not have false hope. As you can imagine, hearing all of these things was not easy, especially hearing the things that were true. Living with these words echoing in your brain can really get to you if you let it, both the words that are true and the words that are not true. I am not going to lie and say that I don't think about some of the things that were said to me, because I do. When we say something to someone we may not know of or think of the impact that it will have, and I know that some of the people that said these things to me, didn't realize that. Especially people in positions of authority or power, such as teachers, coaches, and doctors. Words are a powerful thing, and they can make or break us, and for me they have mentally made me stronger, even though my disorder is physically breaking me. My body may be broken but my spirit is not.

Normally Different I Went To School

It is that time of year again, back to school. You mark the days down on your calendar, see all the advertisements on back to school, go shopping for clothes and school supplies, hoping you get that teacher you like, and that your friends are in your class, and are preparing yourselves for getting up early and not being able to spend the day playing with your friends.  It's the time that means summer is coming to an end. Although I am no longer going to school, it reminds me of the time when I was in school, and since being diagnosed with Muscular Dystrophy it gets me thinking about the difficulties I experienced at school because of not knowing I had MD, and how would school have been different for me and in essence my family, if we had known that I had MD. 

Academically, I did well at school, I have always had a passion for learning new things. At school, and in other areas, I was normally different. I did well at school, had friends that I played with, and in that way I was normal kid like the others. But in other ways I was different, Unlike the other kids, I couldn't do many of the physical things that the other kids did, although I wanted to and tried very hard. I couldn't do the monkey bars, or gym class like the other kids, and couldn't run like the other kids could. Many of the kids at school asked me why I couldn't run like they did, and why did I walk a bit differently, I waddled a bit, why did I break so many bones? Although I know the answer why now, at the time I didn't know why. Kids didn't want me on their team in PE because I was not fast enough. And it wasn't just the kids that said things, it was the teachers. The teachers didn't think I was social at recess because I wasn't playing and doing the things the other kids did, although I tried.

By the end of third grade, my teachers started making my grandfather go on my school field trips because with all the walking we had to do, I had to take frequent rests so I was slowing everyone down. so they thought he should go with me so they didn't have to have another teacher with me. The schools didn't want me to have a rolling backpack, and wouldn't allow me to have one binder for all classes, as they make you carry a binder for each class, because carrying the backpack was difficult for me no matter how hard I tried. They would try to put me in remedial classes and wouldn't let me take Gifted & Talented classes, most likely because of having the physical difficulties I had. When I got into middle school, the teachers would get upset because i took a bit longer to class when it was from one ending to the other.  This made school difficult for me at times, especially because we had no idea that MD was why I was having these challenges. 

Although you can't change the past, I know that if we had known that I had MD when I was in school, it would have been so much easier. I wouldn't have been treated so harshly by teachers because I couldn't play at recess like the other kids and had needed to take rest breaks on field trips. An aid might have been given me to help carry my books and backpack, leg braces to help with the issues in my legs from the MD, PT and OT at school, modified or adapted PE, and a push chair to help on field trips. Although knowing I had MD, might have made me known as the girl who wore leg braces and needs a push chair on field trips where we have to walk a lot, school would have been a lot of easier.. For those who are normally different, and who have challenges either physically or mentally, school cab be a very challenging place, especially for those who don't have a diagnosis as to why they have the difficulties that they do. School should be a fun and enjoyable place, whether you are normal, different, or normally different like me. 

The What If’s?

When you find out that you are living with a disorder that you have been living with and had symptoms of all your life and you didm't know it, you begin to ask the question of what if? What if we had known that I had MD when I was a baby, what if I  hadn’t had all the infusions and powerful medications I did? What if this, what if that? All of these what ifs start to enter your mind, and if you let it it will drive you absolutely crazy. In one way everything has changed since I got the diagnosis of MD, but in other ways nothing has changed. Throughout this first year of being diagnosed, it it seems as though the what ifs are constantly creeping in to my thought process, and I have to stop myself. Although thinking about the what ifs and life especially after receiving a life-changing diagnosis like MD is normal, there becomes a point where it becomes negative and all consuming. I get asked by friends at times, what if I knew I had MD sooner, how would my life be different? When these questions get asked, I try to not to go into a heavy discussion about it, because if I do the thoughts start being all consuming. Focusing on the past does not do anything for today or for the future, and thinking about the what ifs is focusing on the past. In all reality, what does focusing on the what ifs accomplish? Does it allow me to grow, or stay positive? No it doesn't. I am sure that as the first year of being diagnosed with MD passes the what ifs will come to mind less and less and when they do come to mind or am asked a what if question I will not focus on it. It is important for everyone to remember that thinking and focusing on the what ifs in life will not allow us to go forward but will cause us to go backward. Going forward is going into the positive and going backward is going into the negative, and the positive is where we should all be, especially when your living with something like MD where the positives are hard to find. All you need to remember is what a precious God-given privilege life is. Just to be here and experience what I have experienced is a gift. Other rewards await me and as my life unfolds I will experience what they are.

Are Special Needs Parks Only For Those With Physical Special Needs?

So I haven't blogged in a while as things have been a bit crazy, so I am glad to get back to it. Living with a physical disability, I belong to groups, read blogs, and am actively involved in the disability community. In the disability world, there is the physical disability community, and the mental/cognitive disability community. Since the challenges of each are different they are separated into these two groups. There are times that the two mix together, and that is when it comes to inclusion. When you have a disability, whether physical or cognitive, finding things you can do and going to places can be challenging, because places may not be easily accessible, especially for kids.

Today, many areas have special needs parks for children who have a disability whether they are in a wheelchair or not, so they can have an opportunity to go to the park/playground like non-disabled children do. When I was younger, special needs parks were not around like they are today, and I can tell you I wish they had been. Parks and playscapes were a challenge for me because climbing, running, swinging were harder for me. I loved going on slides but climbing them was hard, and after a while I got tired and couldn't really enjoy it anymore, and our trips to them began to lessen. One of these new playgrounds would have been a great thing for me and others like me. With these special needs parks emerging those in the disability community, both those with physical and those with cognitive/mental disabilities, have been happy because it seemed there is finally a place where all of those with special needs can go and can feel welcome and not judged. 

Recently, a story that has gone viral in the disability community and featured in news outlets raises the question of whether those with cognitive disabilities be allowed at a special needs park. The question arose when a mother of a son with severe non-verbal autism allowed an incident to happen at a special needs park. The boy run's, darts, and is known to roll around on the floor and push other kids and throw things at them. He was on the playscape at this particular park and while rolling around kicked a little girl causing her to fall down a slide, though apparently not badly hurting her. The autistic boy then laughed and started running around enjoying himself. 

The girl's parents were very upset, and spoke to his mother who explained that her child had severe non-verbal autism, and that he didn't understand that was not appropriate and that is how he plays. The girl's parents felt that he shouldn't be at that park because he was pushing, running, rolling and kicking, clearly with the potential of hurting other kids. 

The boy's mother later posted a blog and video about the incident expressing sorrow that her boy kicked the little girl and apologized profusely to her family, but said she didn't know what to do because her boy didn't know it was wrong and that the way he behaves is caused by his autism. This is why they go to special needs parks and thought that those at the park would be understanding. Her post caused a lot of waves throughout the disability/special needs community. 

After hearing about this story and seeing the mother's blog about it, I went to my grandparents and mother, who have both been around those with physical disabilities and as well as those with cognitive disabilities, and asked what they thought of the situation. Given the fact I have a physical disability, I asked them what would they have done if a child with a severe cognitive disability had done that to me when I was younger. 

Their response was similar to others whom I had talked to about this question. Although we are so sorry that this woman's child has this severe cognitive disability and has these behaviors that can't be controlled right now as part of his disability, it doesn't mean he can go around pushing others and using the disability as an excuse.

 I understand that those with disabilities, both physical and cognitive, have a hard time finding places that are accessible and have things that they can do, so they are excited when they find such a place. The challenge is that the needs of those with physical disabilities and those with cognitive disabilities such as autism are so different since some of them can be physical with their behaviors that putting the two together can be a challenge. 

While the autistic boy deserves to go to the special needs park because of his disability, children like myself and others also deserve the right to be there without worrying that a child who can't control behaviors will harm us. The girl that was kicked may have not been hurt, but what if it was another child who could have broken a bone or received a concussion? I understand that this woman cannot take her autistic child to a lot of places because of his aggressive behavior, but she thought that a special needs park was a safe place to go. However, your child, even though he has a disability that limits his ability to know what he is doing is wrong, should not be around others, especially those who have physical problems, who can be seriously hurt by what would be something minor for most people. Special needs parks are for those with special needs, but incidents like these really bring out the question: should special needs parks admit only those who won't do harm to others, even though the behaviors that cause harm is due to their special needs and something they can't control?

Note that this is a burning issue in the autism community today. What do you think?

Parental Guilt And Questioning Oneself

Since I have gotten my diagnosis of MD, all the challenges and difficulties I have faced all my life, are now explained by this diagnosis. The puzzle pieces have been put together. With that being said there has been a lot of reflection, especially among my family. One of the things that they have said to  me since the diagnosis is that looking back now, they feel that they should have noticed the signs more, and feel as though they may have let me down. I constantly tell them that is not true, but being parents I can understand why they feel that way. Parents and grandparents, feel they have the responsibility to notice signs when their child is struggling and having difficulties, and when they don't it brings up a lot of feelings in emotionsu. My family had no way of knowing that my walking difficulties, challenges with various activities were the signs of this devastating condition known as MD. They start to feel like and ask themselves, by doing this or that did we make the problem worse, would I not have all the difficulties I do right now. The answer is no, but as parents and grandparents their job is to protect me and keep me safe and healthy. And when your child or grandchild is living with a disability and has faced challenges since they were very young, and continues to face them, its hard not to feel as though you did or didn't do something. My family did everything they could to find out why I experienced the challenges I faced, they were and are today on top of it. Its natural to feel guilt or question oneself when a family member or a loved one is going through a difficult situation, moreso if you are a parent or grandparent. As time goes bye those thoughts and feelings that they have will come and go. When a parent or family members starts to think that way, its important to remember that it is a natural feeling to have. I know that my family feels this way at times because they love and care about me so much. I know that they did everything they could, and I tell them that and reassure them. By letting them know that I don't blame them in any way, helps to ease those feelings of guilt and allows them to not question themselves. 

My Strength Is My Shield

In my previous post, I talked about strength, physical, mental, and spiritual, and how having mental and spiritual strength allows people to handle situations that arise much easier than if one doesn't have it. Not only does mental and spiritual strength help one deal with situations, but it also serves as a shield. When I was growing up, before I knew I had MD, I was normal in many ways, but I was also different in other ways. I was the kid that got picked last for teams, the one that walked a bit weirdly, the one that would rather sit and read a book or color instead of playing on the playscape, the one that would trip and fall and known as "clumsy one." As a result, it made activities and certain situations difficult for me especially because of the comments that kids and even adults were made. I remember when kids, especially boys, would tell me to get my butt out of their face when I would get up on the floor. They would ask me why I broke so many bones, why I walked a bit differently than they did, why couldn't I run like they did and as fast as they could, they would call me lazy, and teachers would yell at me to run faster. I was asked to leave various activities such as gymnastics, karate, dance, and had to stop other activities because of my clumsiness. Things like this could really make a person feel like they aren't good enough or strong enough or even make them feel rejected, but for me it was what helped me to become strong, and toughen up. These experiences helped me to develop the shield of strength I have today. I could of let it upset me and make me feel as though I wasn't good enough, but instead God used those experiences and made them into a shield, just like Captain America's. Not only do I have my shield of strength, but I also have God and my faith as a shield. I am reminded that God is my shield in in Psalm 28:7 "The Lord is my strength and My shield." Having a progressive disorder like Muscular Dystrophy is very challenging, and its easy to let it get you down and feel as though you don't have the strength to deal with it. Even though I didn't know that I had MD when I was younger, God helped me to use those experiences to create my shield of strength, so that I wouldn't let difficult experiences, like dealing with my progression, get me down. When we find ourselves going through challenges, or dealing with rejection and negativity, we have two choices, we can let it get us down or we can let it strengthen us. If we let it strengthen us, we can then use that strength as a shield to deal with whatever comes our way.

Strength

When we are little we are taught that strength is physical, but it isn't until we are older, or until we experience certain circumstances, that we learn that strength is also mental and spiritual. I have never been strong physically, I was never the fastest kid, and I was the one who wasn't good at sports.
even though I wasn't strong physically, I learned that I was strong in other ways. Because I have always had things be more challenging for me physically, it has toughened me up in way. It helped me to realize that physical strength is not nearly as important as how strong I am mentally and spiritually. When you have a progressive disorder like Muscular Dystrophy, and you get weaker over time and you start to lose your ability to do things you have to find your inner strength just to deal with it. Yes, physical strength is important, but if you don't have the mental strength to deal with a situation, it makes it much harder to deal with. Since I have learned to tap into my mental strength, and my spiritual strength, it makes losing my physical strength easier to deal with. Even though, I have always had difficulty with physical strength, and things were always harder for me physically and that has increased over time, I was able to tap into my other sources of strength much earlier in life than most. When people ask me how I have the strength to deal with all of this I refer them to Philippians 4:13, which says, "I can do all things through Him who gives me strength." This means that my strength to do deal with what I am going through each day doesn't come from my physical ability, it comes from God. God is what gives me the strength to get up each day, God gives me the strength to do my chest therapy and to hook up to my feeding up. It's because of God I have always, ever since I was little, had the strength to enjoy life despite the challenges I have had and continue to have. Just because I am not strong physically, it doesn't mean I don't have strength.

Being Thankful

When you have a disorder like MD and you are constantly getting weaker and having more difficulty with just daily tasks and there is nothing you can do about it, you find it difficult at times to be thankful. You think, how can I be thankful that I can't eat, how can I be thankful that I need help dressing and bathing, how can I be thankful that I have respiratory problems, how can I be thankful that I have to use a wheelchair? A lot of people that I come in contact with are surprised to hear me talk about how thankful I am and how blessed I am. They think, how can you be thankful and be blessed when you deal with such challenging circumstances on a daily basis. At first, you can understand why some people think that. The truth is, I have so much more to be thankful for than to not be thankful. I am thankful to have a family that loves and cares for me, and will do anything for me. I am thankful to have a home filled with love and laughter. I am thankful to have friends who see me as a person, not as someone with a disability, and who make me laugh and are always there for me. I am thankful to have a church community that loves me and my family and will help if and when we needed. I am thankful to have group of doctors and nurses who work hard to ensure that have the best quality of life possible. I am thankful and blessed to have health insurance so I can get the medicine and medical equipment that not only keep me alive but allow me to get out of the house and go to church and be with my friends. I am thankful to have my faith in God which helps me to stay mentally and spiritually strong through all thatI have been through. During the November, everyone thinks more about all that they are thankful for since it is the month of Thanksgiving, and you will see what I am thankful for each day on Facebook. While I think that is great, we shouldn't just be thinking about what we are thankful for in November, but all year around. By thinking about what I am thankful for all year around, it helps me to stay grounded in a way because I don't get into the poor me mindset saying there is nothing good in my life. On the rare occasion I find it difficult to be thankful about things I think of 1 Thessalonians 5:18 "...give thanks in all circumstances; for this is God's will for You in Christ Jesus." This verse helps me to remember that no matter what is going on in life, God wants us to be thankful. We can always find something to be thankful for, and its important that we should. By being thankful in every circumstance, we are not only honoring God but we are remembering that even amidst the toughest times in life, there are always blessings and a bright spot that we can be thankful for.

Halloween

Halloween is always a fun time of year, its the time of year that lets you know that fall is here and kicks off the start of the holiday season. Going to parties, wearing fun costumes, trick or treating, and eating candy are all fun parts of the holiday. I have memories of dressing up in princess costumes, and even a go go dancer with my god sisters and going trick or treating, and coming home and eating our candy, and if Halloween fell on a weekend we would sometimes get to have a sleepover. These were definitely fond memories. Having disability or illness like Muscular Dystrophy, that effects your mobility and other aspects of your life can make holidays, such as Halloween a challenge. When I was little, I loved the idea of going trick or treating, dressing up, hanging out with my god sisters, and eating candy but the actual walking when trick or treating was hard for me. By the time I would get to the 6th or 7th house, I would complain my legs hurt and were tired and I wanted to go home. Despite being uncomfortable I focused on the other fun aspects of it. When I lost my ability to swallow, Halloween became harder because I couldn't eat and enjoy the candy that was at the parties, and that we had for the trick or treaters. As my mobility has become more diminished and I have to have help with dressing,  being hooked up the pump and backpack, being in my power chair, and now having my leg braces I felt I couldn't wear and dress up in great costumes. I have learned that just because I can't eat candy, just because I have a feeding pump in a backpack, just because I have leg braces, just because I am in a power chair doesn't mean I can't enjoy the holiday. I can find a way to incorporate my chair into a costume (something I have seen others in chairs do and am planning to do next year), I can wear my fun crazy colored wigs, and glow in the dark necklaces and bracelets. Just because I can't eat, and am in a wheelchair and have mobility issues doesn't mean I can't enjoy this fun night, I just enjoy it a little bit differently. Having a disability or an illness, can make it harder to enjoy holidays such as Halloween, but it doesn't mean they can't be enjoyed, we just enjoy them differently. Having fun and enjoying parties, holidays, and events is what we all want and strive for, especially those of us with physical challenges. In the end we do get to achieve that, even if it is a little bit different. As I reflect on my childhood Halloween experiences I am reminded of one of my favorite verses, Ecclesiastes 3:1 “There is a time for everything, and a season for every activity under the heavens:...” and no matter what, your never to old to have fun with Halloween whether your 24 or 104.

Muscular Dystrophy....Not Just For Boys Anymore

      


I know I haven't blogged in quite awhile but there was a lot up in the air, and now its not. I recently learned that I have Muscular Dystrophy (MD), which is a progressive genetic disorder that causes the skeletal muscles to get weaker over time, including the muscles that aid in breathing, for which there is no cure or treatment. It was found thanks to genetic testing by a neuromuscular specialist who runs an MD clinic. As one can imagine this was so shocking for me and my family, but we were relieved to have a diagnosis. This diagnosis explains everything that I have gone through since I was a young child, and the symptoms fit me perfectly. My picture should be next to the description.  As a result of this new diagnosis we learned that the other diagnoses were not correct, and I had powerful chemo and immunosuppression drugs I didn't need. The question is how did a diagnosis like this get missed for so long? The simple answer is that I am a girl. Most of the people who have Muscular Dystrophy are boys, and for that reason its not something that doctor's think of off hand. Another reason is because I wasn't floppy. When doctors think about or diagnose MD in young girls it is because they're floppy, but that is not always the case. We now know that I had signs of MD ever since I was little, but at the time we didn't know that they were a sign of this serious condition. Ever since I was little I was a bit different than the other kids, but not so different that it made us think of MD. I crawled differently, walked later than most and walked differently, had difficulties with running and being physically active, fell a lot and broke a lot of bones. My family took me to doctors but they all said it was because I was tall, or clumsy. The thought of MD never crossed anyones mind, but these were all signs and symptoms. The back, joint pain, and swelling were all connected to the MD because of the odd way I walked and the bowing of my legs from the weak muscles due to the MD. The doctors thought I had a rheumatological problem, because they occur more in females. A rheumatology problem was more likely than MD. Even then, the doctors never agreed that it was a rheumatology problem because the symptoms never fit and I had no response to the medications. It wasn't until I started developing the respiratory problems I had that the thought of MD or a genetic neuromuscular disorder occurred. This was a complete shocked. After meeting with the neuromuscular doctor, I was told that it wasn't an inflammatory/autoimmune problem, and that a genetic cause was likely. After testing it was confirmed. Now that we have an accurate diagnosis, it is helpful to the doctors and my family to ensure I have the best quality of life as possible. After my diagnosis, that my story is not that uncommon for girls who have MD or other genetic neuromuscular disorders. Many of them got a delay in diagnosis, or were diagnosed with a inflammatory or autoimmune disorder, and it was only when they failed the treatment that the thought of a genetic neuromuscular disorder is brought up. The doctors have said if I had been a boy, I would have been tested for MD. I am often asked what would have been done differently, besides taking all the chemo and immunosuppressive drugs. Yes we would of done things differently, but there is no point in looking back, only looking forward. Now that we have an accurate diagnosis, the important thing is make sure I have the necessary equipment, keeping me as free from infections as possible, and dealing with the changes as the disease progresses and ensuring I have the best quality of life. 

The Christmas Season

I just love the Christmas season as we await the birth of our Lord and Savior Jesus Christ. The Christmas season is always filled with so much activity from preparing to visit friends and family, purchasing gifts, going to Christmas parties, and making sure all our Christmas cards are all sent out, and assuring that al work deadlines are made, and students having finals and preparing for the Christmas break. With all the craziness that Christmas season brings, the true meaning of the season gets lost. Even though I am home all day, and I am only taking one online class, I still find the Christmas season being quite busy. In all the craziness that this season brings, and being bombarded with pressure about the "perfect gift" we are supposed to get for our loved ones, I find myself having to remember that we have already received the perfect gift, the gift of the birth of God's son Jesus Christ. Sending His one and only son down to earth in the form of man, to teach us the ways of the Lord is such an amazing and perfect gift. Knowing that He sent His son to take away our sins, is the best gift that anyone could receive. Awaiting the birth of my Lord and Savior makes the Christmas season my most favorite season of all. This season is a time of darkness for many, especially because of the emphasis on money and gifts. But if you think about the true meaning of Christmas, and who we are awaiting and celebrating the birth of, it is such a joyous and blessed time of year. Focusing on the true meaning of Christmas, makes thoughts of any difficulties that I have been experiencing go away. Instead, I have heart and spirit with filled with joy and love, and have the desire to give to others my love and kindness, as well as share God's love and His word. Giving a material gift is not my main focus.

There are four verses of scripture that I absolutely love and that I believe describe what the true meaning of Christmas is.

Isaiah 7:14- "Therefore the Lord Himself will give you a sign. The virgin will be with child and will give birth to a son, and will call Him Immanuel."

Isaiah 9;617- "For to us a child is born, to us a son is given, and the government will be on His shoulders. And He will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of His government and peace there will be no end. He will reign on David's throne over His kingdom, establishing and upholding it with justice and righteousness from that time on and forever. The zeal of the Lord Almighty will accomplish this."

John 3:16- "For God so loved the world that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life."            

1 John 5:11- "And this is the testimony: God has given us eternal life, and this life is in His Son." 


Joyful Love
         &          
Blessings In The Lord
Alexandra K. Acosta                                                                                                                                                                                                                                                                                                      

Remembering September 11th

Today we remember the tragic events that occurred 14 years ago on September, 11th, 2001. The events of that Tuesday morning will always play over each anniversary in the minds of Americans. Even though I was only in the third grade at the time, I can still remember that day and the following events that occurred. I remember I was sitting in the classroom of one of my 3rd grade teacher's, Ms. Pounds. She received a phone call from her father telling her about what was going on, and she turned on the television and we began watching it. Of course me and the other kids did not realize what was going on and didn't understand the magnitude of what was going on. The principal came on and said to turn off the television's but it was hard to. The rest of school went on, with teachers trying to keep classes normal. I remember on my way home from school with my grandmother telling her about what happened, of course she already knew, but the magnitude about what happened was not really talked about. To a third grader like me, it was just something sad that happened, I didn't understand the severity of it. I remember that as my family watched the news for the next week the images that were played on the screen. The fire trucks rushing by, people running covered in ash completely white. I vividly remember a news special about the missing of 9/11 and one woman her story I remember. Her son or daughter was about my age, and they showed her picture and didn't know what her fate was. Each year on the anniversary of 9/11 I always think of her and her family. Was she found, what has her children's lives have been like since the attacks?  I wonder each year on September 11th.

I remember shortly after the attacks flying to Houston one weekend to visit my dad's family, and then San Francisco with my grandparents a week later. No one wanted to fly, the airports and planes were completely bare. Security at the airports was a lot more tight then before 9/11, there were armed guards there as well. I remember that after September, 11th you would have to get to the airports much earlier because it would take like an hour and a half to get through security, and it wasn't like that before 9/11.

As I got older and became more secure in my Christian faith, questions like how could God let this happened? started to get asked. I know that God didn't let this happen, He doesn't want to see His children harmed. The events of that day were an act of evil. Questions like this will always arise after tragedy's like the one on 9/11 and we may not be able to answer them.

The day of September, 11th will always be remembered in the hearts of Americans, and the world. Today and each year on the anniversary of 9/11 we remember the lives that were lost and the men and women who bravely gave their lives. There families have sacrificed so much as well. They will all be in our hearts and minds forever. Not just on this day, and every anniversary of September ,11th 2001, but every day.

God Bless

Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Girls Getaway

Last weekend one of my best girlfriends and I went away for three nights to Houston, and had a fabulous time. This was our second trip (last year we went to San Antonio), and we are planning on making this an annual thing. We stayed near the Johnson Space Center, so that we could easily get to things to do in Houston, as well as to be able to get to Galveston. The first day we were there we went to the Galleria, which was fun and spent the day walking around, doing some shopping, going to the Cheesecake Factory and just having fun, and drove around Rice University (where my friend's sister graduated college), and looked at some of the beautiful campus, and also the houses nearby. That evening we went to the Kemah Boardwalk, walked around and has dinner at the Kemah Aquarium which was so much fun. By the end of the night we were tired, but it was good. The next day we drove down to Galveston, and drove along the Seawall, and walked around historic downtown Galveston, and visited some fun little beach shops which was fun. We then went over to the Rainforest Café, where we did there River Adventure Ride, which is supposed to be like going through the Amazon River or a river in Africa, and then had lunch there. We went to the Rainforest Café in San Antonio last year, and decided to go there each year if there is one. We then went over to a little French bakery in Rice Village and met up with a friend of ours and had coffee and dessert which was fun. Then we just spent the evening back at the hotel and watched movies. We left on Monday, walked around the outlet mall outside of Houston for a bit, and then of course had to stop at Bucees on the way back home (we also stopped there on our way to Houston).
      We had an amazing time and it was so nice to get away for three nights, and to just be able to relax and have fun with an awesome friend. With everything I am going through right now, a little getaway was definitely needed. I am so  glad that I have a friend, that despite all the challenges I have, and the difficulty I have with being able to travel, that she is still willing and wanting to go away with me, and just to help me feel like a normal 22 year old. I am so blessed to have the close friends that I do, and going on this Girls Getaway is just another reminder of that. I think that its important for everyone, especially those with chronic illnesses, to getaway a bit at least once a year, if at all possible. It helps to be able to leave the stress that you have behind, and to just relax , recharge, and get refreshed. It was something that I definitely needed, and I think we all need.


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Finding My Purpose

I know it has been quite awhile since I last blogged, but there has been a lot going on. While dealing with various different stressors in my life, and also seeing my friends graduate from college and start new chapters of their lives, I have been wondering what my purpose is in life. My illness has taken away my ability to do many things, yet I still have the heart and desire to do the same things I have always wanted to do, maybe even more so, yet I don't have the physical ability to do it. This has caused me to have queestions about, what is it that I can do, not only physically, but that can also include the things that I love. Finding this balance is not an easy thing to do. My ultimate dream has been to work as a child-life specialist at a children's hospital, but that is something that right now is not possible. I love working with kids, but that is not something I am able to do with my weakened immune system. I know that God has a wonderful and miraculous plan for my life, but while experiencing so many difficulties, it can be hard to remember that.
      Jeremiah 29:11 says, "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. " This is one of my favorite verses, because it helps me to know that God only has good and wonderful things planned for me, and that as His daughter, He wants me to have a life that is prosperous and filled with hope. But when going through difficult times, it can be a challenge to remember this. We beging to think, that how could God let us go through these difficulties if He wants us to have good things? He doesn't do it to spite us, but so that we can trust and rely on Him. We have to, because if we don't, we will not be able to live that prosperous life. Only trusting and relying on Him completely will enable us to have that prosperity. So when I start to wonder what my purrpose is in life, I think of Jeremiah 29:11. When I read that verse, I know that I do have a purpose in life, we all do. And even though I may not know at times what my purpose in life may be, I know that because of my faith in God, my future will be bright and filled with so many blessings. And that, gives me comfort.




Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Happy Easter

 Sorry I haven't written in a while, things have been a bit crazy. This weekend is Easter, and is one of my favorite holidays. Not just because its such a bright and colorful holiday, which is a plus, or because of Easter eggs, chocolate bunnies, and other stuff, but because we celebrate the crucifixion and resurrection of our Lord and Savior Jesus Christ. One of the things I love about Easter, is because it helps me to remember that God sent His only Son, who was sinless, to take all of our sins upon Himself, and endured unbearable pain, so that He can take our sins upon Himself and pay the ultimate price. As John 3:16-17 says, "For God so loved the world, that He gave His one and only Son, that whoever believes in Him shall not perish but have eternal life. For God did not send His Son into the world to condemn the world, but to save the world through Him." Its a reminder of how much God loves me, and that gives me such comfort and peace. God not only loves me, but everyone of us, and the proof is in the death and resurrection of Christ. To know that all of our sins have been paid for by Him, is amazing. I am not only reminded of God's love for me on Easter, but on everyday of my life. His love for us, is clearly evident in the numerous blessings He has bestowed upon us. I wish everyone a Happy Easter, and hope that this Easter, we all remember how much God loves us, by the fact He sent His only son to pay the ultimate price for our sins.

 

HAPPY EASTER!!!!

 

 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta

Last Infusion

 Yesterday was my last Rituxan infusion, I had one every week for 4 weeks in a row. I haven't noticed yet if there are any improvements, but my doctor said it could take up to 6 months to know whether or not its working. After not being on any treatment, except doses of prednisone, I was very glad to be able to start a treatment protocol. I have not had any unpleasant side effects with these treatments like nausea, vomiting , or hair loss. I'm just really tired for a few days after the infusion, but I am used to dealing with fatigue on a daily a basis. Now that I have had my last infusion, my lymphocyte levels will drop which means that I will be more susceptible to infection. My doctors have been toying with idea of giving me this medication for the past couple of years, but because I am so vulnerable to infection, and have gotten such unusual ones, that they have not been wanting to give me the medication. But they have been running out of treatment options, so we decided to do this one, hoping that it will slow down the disease process.

 

Right now I am just trying to take things day by day. I have finished my first semester of my Earth Science class, and now I am ready to start my second semester. I am really enjoying the class, and it gives me something intellectually stimulating to do each day. I can ultimately say that if I didn't have my class to work on, that I would be bored out of my skull. There are some people who think that being home everyday is fun, but if you don't have anything to do like schoolwork, you will get bored in a few days. I am hoping that in the next few weeks that I will start to feel some improvement. In the mean time I will keep chugging along, and continue to trust in God, and have faith knowing that He is looking out for me, and everything is in His hands.

 

 

 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta

Finally A Treatment

 I haven't posted in awhile, since things have been a little crazy. Some of it has been a good crazy, because I am finally on a treatment, the first time since October or November. The treatment is called Rituxan. Its an infusion that I receive every week for a month, that is about 4 to 6 hours. The medicine suppresses the B cells, or lymphocytes that are a key component of the immune system that are produced by the bone marrow. The Rituxan will suppress them for 9 to 12 months. The goal is to suppress my immune system so that it will slow down my disease process. It will be up to 6 months before I will notice if the treatment is working. The first infusion went well, except for a minor reaction where my throat started becoming soar and feeling tight. The nurses quickly administered Benadryl and Solumedrol, and the reaction was under control. The nice thing about this treatment is that it does not cause nausea, vomiting, and hair loss like chemotherapy does.

     After not being on any treatment for several months, it is nice that I have finally been started on a treatment. It is still very frustrating because I am still having an increase of symptoms; joint swelling stiffness, heliotrope rash, muscle weakness and fatigue. It is extremely frustrating that I have had one treatment and have not noticed a different. Even though logically I know that I wouldn't, I still wanted to notice a difference. It is really hard that I am having an increase and symptoms and feeling cruddy. I am continuing to work on my Earth Science class, and that is something that has helped me to be able to continue to do something that is intellectually stimulating and to have a routine.

      I still do not have a rheumatologist, so our next step is to appeal to the Children's Hospital to allow me to stay with Dr. C since no other rheumatologist will take me. Not having a rheumatology visit scheduled my whole family feels as though we are in limbo, and as though I am in limbo. I am continuing to pray and trust that God is with me and my family during this difficult time, and He will take care of everything. That helps me to have peace of heart, mind, and soul, and that provides great comfort.

 

 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta

Stress Stress Stress

Sorry I haven't written in awhile, but my family has been under a lot of stress since before Christmas. My grandmother had her second shoulder replacement on December 17th, and ended up developing lymphedema. To deal with that, she had to go to a lymphedema clinic everyday to get wrapping done, and have a machine at home that she needed to use two hours a day. They said the problem would be lifelong. In addition, over the winter break, my grandfathers knee had been bothering him more and more (a problem he has had for years). We have been trying to go to the orthopedist for years, but he has a high pain tolerance, and generally ignores it, but it finally got to a point where he couldn't ignore it and went to our family orthopedist. The doctor took one look at the x-ray, and it was just bone on bone, no cartilage, tissue or anything. All the sudden he was scheduled for surgery on my birthday. He was hoping to put it off until the summer, but couldn't. I had my carpal tunnel surgery a week or two before his surgery, and mine went well. The Friday before my birthday on the 28th, my grandmother went to a post surgery follow up with the surgeon, and we found out the joint came out of socket, a very rare complication, that the doctor felt could have possibly been due to the lymphedema treatments. That day he put her to sleep, and tried to adjust it back into place, but couldn't. So the following Monday, two days before my grandfather's knee replacement, my grandmother had surgery to put the socket back into the joint. We thought she was going to be there only one night maybe two, but she ended up being there four nights. My grandfather wanted to postpone his surgery, but we convinced him not to. The biggest concern for him was not being able to drive for three weeks, since he is the "captain of this ship." So he had his surgery on Wednesday, and both he and my grandmother were on the same floor of Seton Hospital at the same time, and since I can't stay the night by myself, I stayed with my great Aunt Martha. As if this wasn't enough stress.

      Dr. C has been trying to transition me to an adult rheumatologist since I was 18, but no one will see me and wants me to stay with him, but he is a pediatric doctor. I had an appointment set for Monday, February 2nd, with an adult rheumatologist in San Antonio, and I had my last appointment with Dr. C the Tuesday before my birthday. We weren't sure if she was going to see me, but my records had been sent and apparently he was going to talk with her. On my birthday, I get a call from San Antonio saying that they got a referral for me to see one of their rheumatologists. I had told them that I already had an appointment to see this particular doctor on February 2nd, and Dr. C's office also said the doctors office had my appointment for that day. The lady on the phone said she didn't know where I got that appointment from because she only sees patients in clinic on Wednesdays, and that I was supposed to be scheduled with a resident, but she may only come into say hi, and they scheduled me for Wednesday, February 4th with a resident. This did not make me feel comfortable, and I was already nervous, and to top it off my mom called Dr. C's office and the nurse said that Dr. C had talked with the doctor I was supposed to see, the day before, and after he had talked to her they are now passing me off on a resident. My family did not feel confident after this either.

      On Tuesday the 3rd, my mom and I drove down to San Antonio, checked into the La Quinta by the medical center, and met her good friend Susan for dinner at our favorite restaurant in San Antonio, Alamo Café. Even though I cant eat I had some sopapillas and ice cream. The next morning, we got up early since my appointment was at 8:30 AM. Since the doctor was part of the UT Health Sciences Center and the first address we had was at the medical center, we decided to stay at the La Quinta near the medical center. My grandfather found another address they gave me and it was all the way downtown at the Robert B. Green campus, and with traffic, it was a good we left when we did. When were called back and were with the nurse in the exam room, she said that they had no medical records on me at all. We couldn't believe it, because we knew for a fact Dr. C's office had sent them over a month ago. She says it could have been at the other doctors office, but it was still shocking. She said that the resident who was seeing me, was feeling sick, and may come in wearing a mask. We couldn't believe a doctor who sees immune compromised patients would come to work sick. The resident came in and said, "why are you here", he knew absolutely nothing about me and had no records about me. My mom and I were stunned and couldn't believe it. After talking for a few minutes and asking a couple of questions, he said he needed to go talk to his attending. A few minutes later, the partner of the doctor we were going to see came in. He said again that he didn't have any records on me, asked a couple of questions and said, "I don't think there is anything more that we could do." My mom asked if he was going to talk to Dr. C so that he could understand more about my case, and he said, "that it wasn't necessary, because they were coming in years in after things started." Well of course were years in, that's what transitioning from a pediatric doctor. They wanted to do blood work, but nobody there in that big medical center could access my port. It was all ridiculous and a big waste of our time, and I was treated unprofessionally.

      I now don't have a rheumatologist and no solid treatment plan.  I have been turned down by all rheumatologists in Austin, San Antonio, Dallas, and Houston. The plan to transition me has failed. As you can imagine, my family and I have been under immense stress lately. We are trying to just take it one day at a time, and trust in the Lord. I know that God is with me and my family, and that He will take care of us. We trust need to trust and surrender it all to Him. By doing that we will be at peace, and know that it is all in His hands.

 

 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta

Never Give Up

    I found out on Tuesday that the external review for the IVIG was denied. As you can imagine, this was completely heartbreaking for both me and my family. This was the last level appeal so there is nothing else that I can do to get it, except for legal action, as the decision made by the external review is binding. I was really hoping that it being approved was my Christmas miracle, but I know that the real Christmas miracle is the birth of Christ. But even though I can't get the IVIG, I am not giving up. At my last appointment with Dr. C we talked about back up treatments besides going back on the Cytoxan chemotherapy. It seems as though Rituxan might be the next choice. It is very immunosuppresive and suppresses the B cells which are a key part of the immune system. It suppresses them for almost a year. Although this treatment makes me nervous and am not sure if it is the right choice. I do trust Dr. C and Dr. CB and know that they will come up with a good treatment plan that is in my best interest. 

      Going through all of this helps me to really remember a saying that is on a bracelet I am wearing, "Never Give Up". This bracelet was a part of a joy jar that given to me by a friend. These Joy Jars are given to kids in the hospital by the Jessie Rees Foundation. Jessie Rees was a girl who had cancer and created joy jars for kids in the hospital, and fighting illnesses. The main message that they share is Never Give Up (NEGU). I wear the bracelet and it reminds me to do so, in every aspect of life. Whether it is dealing with my illness, trying to earn my diploma, or whatever it may be. I always keep on fighting. I will never give up, no one should. 


Joyful Love 
        &
Blessings In The Lord
Alexandra K. Acosta