The Fight For Justina

There has been news coverage that follows the story of Connecticut teenager Justina Pelletier, who since Valentines Day of 2013, has been in the custody of the Massachusetts Department of Children and Families, because her parents disagreed with the doctors at Children's Hospital of Boston, and wanted her to be transferred and treated at Tufts University Medical Center, where she was initially undergoing treatment. Justina was admitted to CHOB while suffering from the flu, and was transferred from Connecticut Children's Hospital, to see her GI doctor (the world's leading GI motility specialist) who transferred tho CHOB from Tufts. Tufts diagnosed Justina with Mitochondrial Disease, which affects multiple systems. Just before her admission at CHOB for the flu, Justina was doing well, ice skating, going to school, and being a typical teenager. A neurologist at CHOB said that Mitochondrial Disease (Mito) does not exist, and wanted to try a different approach. Lou and Linda Pelletier, Justina's parents, were open to this as they wanted to do anything to help the doctor. The doctors at CHOB decided to take Justina off all of her medication, and diagnosed her as having Somataform Disorder, a psychiatric disorder, where the illness is all in ones head. When the Pelletier's wanted to take their daughter home, and have her go to Tufts' for treatment, CHOB called the Massachusetts Department of Children and Families, who removed Justina from her parents care, saying that they were preventing her from getting mental health treatment. The Pelletier family literally called 911 and said that CHOB was kidnapping their daughter, which in essence they were. The Pelletier's were escorted off the premises, and for the past year Justina has been in the custody of Massachusetts DCF, and placed in a psychiatric hospital. Her parents were only allowed to have a one hour a week supervised visit with her. Looking at pictures of Justina, before and after her admission, is shocking. One can clearly see that she is worsening, and is ill. Yet DCF and the psychiatrist's say that she is improving, yet she is paralyzed from the waste down from her muscles waisting away (which can happen with Mito), her hair is falling out, she is losing weight, and she is in constant pain.

Justina a few weeks before being admitted to Boston Children's Hospital        









            Justina after being in the custody of Massachusetts DCF.      

This past week the judge ordered that Justina remain in the "permanent" custody of Massachusetts  DCF. Their supervise visits have been suspended, to where they can only have supervised Skype visits with her once a week. Many legal experts are saying that Justina being returned to her parents is a matter of life and death, and this is about a disagreement between two hospitals, and that there really aren't any legal grounds to have custody taken from the Pelletier's. Even if she had Somataform or some other psychiatric diagnosis, it is something that can be treated outpatient, and not something that would be grounds for taking custody away of the parents. There have been "Free Justina" petitions, and the family, as well as grassroots organizations, are urging people to call either the governor of Massachusetts or Connecticut, the Attorney General of Massachusetts or Connecticut, and Massachusetts DCF. I called the governor and Attorney General of Massachusetts, urging them to return Justina to the custody of her parents.

I really sympathize with Justina and her family, because I know what it is like to be told that your crazy, that your illness is all in your head, and to have doctors disagree about diagnosis and treatment. Although it never reached the point where DCF  and the courts were involved, like it has for the Pelletier family. I have continued to pray for Justina and her family, as what they are going through is an absolute nightmare. They say Justina sneaks little notes to her family, encouraging them to stay strong. Her father Lou says that she is his hero, and that her strength is amazing. I can't imagine how scared she must be, and how alone she must feel. Ephesians 6:10 says, "Finally, my brethren, be strong in the Lord, and in the power of his might." This verse comes to mine when I think of Justina and the Pelletier family, as the strength that comes from God is the one thing that can get them through this difficult time. I encourage everyone to continue to pray that Justina is returned to her parents before it is to late. Sign the Free Justina petition, call the governor or Attorney General of Massachusetts and/or Connecticut, and Massachusetts DCF. Anything we can do to return Justina to her loving family. 

I will continue to pray and fight for Justina and her family. 

Joyful Love

         &

Blessings In The Lord

Alexandra K. Acosta

Energy

According to Merriam-Webster Dictionary, the definition of energy is: ability to be active; the physical or mental strength that allows you to do something. For me, the ability to do these things is getting harder and harder. I am exhausted what feels like all the time, and am needing to take a nap pretty much everyday (yesterday I took a 3-3 1/2 hour nap) and am still able to go to bed at 9, at the latest 10 o'clock. I sleep very soundly and deeply, so much so that I don't hear the fire alarm, and yet wake up feeling like I haven't gotten much sleep. Having an increase in muscle weakness, and joint swelling and stiffness makes my energy level lower. 

Since the treatment I am receiving is more palliative, and to "keep me from falling off the cliff", one of the key factors is energy conservation. My battery runs out quickly, and unlike most people, who when they rest their battery recharges (like a phone charging when it dies), my battery only recharges very little. So I have to learn to function on the short "battery" life that I have. To make things more tricky, with this decline, that battery life is changing, so keeping up with it is a challenge. In order for me to go out and do things, I have to really plan, in order to make sure that I can participate. That means if I am doing something in the evening, making sure I get a nap in, and if I can, not doing to much the rest of the day. This is something that is very difficult for me, because I really enjoy doing a lot, and I don't want to miss out on anything. But at the same time, when I am participating in something I want to be able to engage and participate, and mentally be there. 

Lately, the realization of how my by battery life is not where it used to be is hard, physically and emotionally. Physically, because when I go to do something that I was able to do a few weeks and months ago is now so much harder to do. My muscles are just weaker. Emotionally its a challenge, because I have the desire and the want to go out and do things that I can no longer do. and I have to choose sometimes if I want to do this activity or that activity, when I want to do both. For example, over Spring Break, my mom and I went out to lunch, and then to a store to buy a few items of clothing (we weren't there very long). When we were done, I went home and crashed because I was so tired. A few weeks/months ago I was able to do that, and yes I would have been tired, but not as exhausted as I was. I also think that stopping a medication that has stimulant properties in it, has made the fatigue worse. Although the medication didn't energize me as much as it normally would, it did help a bit. Trying to keep up with my changing battery life, and adapting to it is a challenge. Learning different tools for energy conservation has been key. Noticing how my ability to walk the "short"distances that I have been able to becoming increasingly difficult, has been a challenge in and of itself. 

There has been one source of energy that recharges me, and that is God, and my faith. I find that in the morning when I wake up feeling tired, doing my morning prayers and devotions charges me up. When I feel drained, whether physically or emotionally, turning to God, reading a piece of scripture, or even silently praying a short prayer, helps me to feel energized. God gives me the strength that I need to get going, and helps me to have a positive and joyful attitude, which are energizing itself. There are two scripture verses that give me strength and energy. The first is Philippians 4:13 which says, "I can do all things through Christ which strengtheneth me." The second, is Isaiah 40:29 which says, "He giveth power to the faint; and to them that have no might he increaseth strength." Both of these verses help me to remember how Christ is the one who gives me the strength that I need, and when I am feeling weak and low on energy, to turn to him. He is my ultimate power source. By just remembering that, I am already feeling energized. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

New & Old Friends

The past few week I have gotten the opportunity to get to know two new friends. Margeaux is the daughter of a business associate of my grandfather, and we have been texting the past few weeks, and finally met in person for lunch on Friday. I have also made a new friend on Facebook, through the Spondylitis Web Info For Teens (S.W.I.F.T.) Facebook page. And today, I said goodbye to a dear friend, and my priest Christine. Friends are such a wonderful blessing, and they are important for us to have in our lives, so that we can have someone to talk to and share things with, as well as spending time doing activities that we enjoy, and just hanging out. Since I have difficulty going out and doing things that a "normal 21 year old" would do, getting the opportunity to meet and get to know new people, and stay connected with the ones I have, is important. Technology makes it possible for me to stay connected (Facebook, e-mail, texting, Skype, etc.) and to meet new people, and I am happy that I have a way to continue to grow, and make new friendships. 

Margeaux and I began texting after her dad came and visited me in the hospital. I had heard from my grandfather that she was having surgery (I didn't know her name at the time), and I asked my grandfather to ask her dad her name, so that I could pray for her recovery. He was so touched by my asking about and praying for her, that when I was in the hospital he came to visit. He said Margeaux was interested about what was going on with me, and gave me a gift card from her, his staff and family. I gave him my blog info, cell number, and e-mail for her to contact me. We have been texting ever since. Finally getting to meet her and her mom on Friday was great. We had a fun time and can't wait to do it again soon. We enjoy some of the same TV shows (like American Idol) and just had a nice time. Although it took medical difficulties for both of us to get to know each other, my new friendship with her proves how you can find the good, and a blessing in a difficult situation, i.e. medical difficulties for the both of us. I can't wait to see her again, and enjoy texting with her. 

Another new friend that I have been getting to know, is one who I met on FB through the S.W.I.F.T FB page. She had posted a comment, and I was one of the first people to respond. She messaged me and we have been FB messaging since then. Even though we never met in person, we have connected over both of us having arthritis, and sharing our experiences with medications and life with it in general. She is around the same age as I am, so that is cool to, because some of the stuff we have experienced and are dealing with is similar. Getting to connect with another girl my age, who is living with a condition similar to one of my diseases, is neat. I sometimes feel like no one my age knows what its like living with this stuff, and she felt the same way. With her also being newly diagnosed with her condition, there are a lot of questions and concerns that the doctors just don't get. So for her to be able to talk with another young adult who is going through something similar, and who can give some tips and advice from a patient perspective, I think is helpful. But because I am so medically unique and complicated, having  multiple autoimmune diseases, I have to be careful in sharing information because A LOT of what I have and am experiencing is NOT typical at all, and I don't want to scare or give information that could cause concern, as they are already scared and concerned enough. Still, getting to connect with her, and meet another new friend is great. 

Today was the last Sunday for our associate rector of St. Matthew's, Christine Faulstich. She has not only been a gift and a blessing to our parish, but for me and my family as well. I have known her since towards the end of my sophomore year of high school, when she was my youth minister. I truly believe that the Lord places people in your life at specific times, and I feel that way about Christine. She came at a time when things started to become difficult with my diseases, and has been there for me and my family through many ups and downs. I have been blessed to not only have her as a priest, but as a dear friend as well. She will be the rector at Church Of The Epiphany in Houston, TX. Although I will miss her greatly, I know that she is following God's lead in entering this new chapter of her life. Church Of The Epiphany is extremely blessed to have her as their rector. I can continue to stay in contact through e-mail, FB, phone, and text, and next time I'm in the Houston area, I can visit her at her new church. Her friendship has meant a great deal to me, and am so thankful that God placed her in my life at the time that He did. The support, love, and encouragement that her friendship has brought me is something that I will always treasure, and never forget. 

Proverbs 27:9 says, "Ointment and perfume rejoice the heart; so doth the sweetness of a mans friend by hearty council." I love this scripture verse, because of the analogy of how the love and friendship that one provides someone, brings joy and gladness to the heart like ointment and perfume. I think that this is very true when it come to true and loving friends. I am so blessed to have such wonderful friends, both old and new. God has placed them in my life for a reason, and I am thankful for the friendships that I have. The gift of friendship is one that is very precious, and that we must treasure and guard in order to protect it, and to ensure its growth and longevity. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

Doctors Who Care

During the past few weeks, while dealing with this flare/decline (call it whatever) and being in the hospital, I have had my share of seeing some new doctors. Some of them were caring, and others not so much. While admitted at University Medical Center Brackenridge, I was seen by internists, who were nice, and listened to what I had to say, as well as by a new rheumatologist (an adult rheumy). This doctor was interesting to say the least. Although he spoke with Dr. Carrasco before seeing me, he completely ignored things that my family and I were telling him about my history, and even questioning Dr. Carrasco's diagnoses. Now I have run into this before, due to the fact that with some of my diseases I do not present like a "typical" patient would. I have always known this, and there have been a select few number of doctors that haven't been sure of one of my diagnoses, but the doctors at the leading rheumatology centers have. He was determined to believe that the cause for my hand pain was tennis elbow, and a shot of steroids would get rid of it (the shot didn't help by the way). He said that I did have a mild case of Fibromyalgia, because I had 4 of the 18 tender points. Now mind you, I have been seeing a pain management specialist for several years, and he treats Fibro patients. Surely he and Dr. Carrasco (who also treats them) would have said something if they thought that is something I had. Plus the four "tender points" were common areas of tenderness for myositis patients, and those using a walker. He also kept on saying I had migraines and tried to give me migraine meds. I only set headaches occasionally as a reaction to infusions, and yes I did ask for some breakthrough pain medication for a headache that day, but when you have high blood pressure your going to have a headache. He also didn't listen to the fact that my eyes were slightly dry due to cataracts surgery, not another autoimmune disease. My dry eye test was barely abnormal, and I just saw the ophthalmologist a  couple of months ago, and he would of said if my eyes were extremely dry enough to need prescription medicine. My mom has dry eyes bad enough to need a prescription for Restasis. I could continue to go on, but you get the idea. He even yelled and was really stern with my mother. Luckily he did not want to be involve in my case and treat me. The whole experience of being at Brack was just not pleasant. You start wondering which doctor is right and feel confused. My faith having grown a lot, really kept me from becoming overly hysterical. I did have a few moments of crying, frustration, and confusion, but was able to ground myself pretty quickly. I felt a peace that can only come from my faith and trust in God, and the chaplain at the hospital said the same thing. That peace was definitely crucial in helping me deal with the news I received at my appointment with Dr. Carrasco this past Thursday. 

When I saw Dr. Carrasco on Thursday, he said that he had not seen me as bad I was/am since he saw me for the very first time, if ever. He was puzzled as to why the rheumatologist at Brack had ordered a bunch of tests that had already done and in my records. He was professional, but you could definitely tell he did not agree with what the Brack rheumy said. He said that my lab results prove that. A high WBC and SED rate indicating inflammation, and an elevated Aldolase indicating muscle inflammation. Dr. Carrasco said that with this flare/decline he would normally start me on steroids (IV and/or oral), but with my high blood pressure, and previous longterm steroid use that caused bone issues, its not as easy a decision whether to do them. If the HBP gets stable, he would do a lower dose of IV steroids over a 4 week period so that cumulatively I would get 1g. I also need to have another swallow study done, this time later in the day when my muscles are more fatigued. The one I had while at Brack was done in the morning, and the steroids had calmed the inflammation in those muscles, so the study looked good. The speech therapist says its challenging because the study is a snapshot in time, so you may get all good swallows at the time of the test. Hopefully this second (3rd total) will be more accurate in showing the difficulty I'm having since it will be done later in the day. I have had to stop eating rice, crumbly toast, bagels, and other foods because I choke. It doesn't happen very often, but its a concern because of the risk of developing aspiration pneumonia. If I develop that even once, I would have to have a tube placed so I could get nourishment. Thankfully were not there yet, but thats why Im having to do some dietary changes, and work on exercises from speech therapy to help with muscle strength. But its a fine balance because you don;t want to overwork them and fatigue the muscles thus making it more likely to choke. I also will be having an angiogram to look at the blood vessels in my hand because my hands turn really red, and then blue, purple, and white. My PT Brandon and a new OT are coming out to my house and working with me. He says that there will be a point, possibly soon where I have to start using my electric wheelchair in the house. My muscles can't regenerate, so when I lose that I don't gain it back. Dr. Carrasco has decided to try and increase my CellCept. Typically it takes 2-4 months, for a "normal" patient to know if the medicine is helping to stabilize things. But for me its more like 3-5, if not longer. This is why he is not yet switching medications. If we do switch, it will most likely be to a drug known as Azathioprine or Imuran. The big risk is that it is a Group 1 carcinogen, meaning it has an extremely high risk of causing cancer. Sadly for me, that is not even a factor in deciding on whether to take it, as it would be for most patients. This is because with all the chemo, biologics, steroids, and just having this disease and not being under control, even if they were to stop all medications, it is still a matter of when not if I develop cancer, most likely a blood cancer such as Leukemia or Lymphoma. This is why I go up to Texas Oncology for weekly blood work. I see Dr. Carrasco again in a month, and unfortunately there is nothing I can do to help with the decline/increase. All I can do is try to adapt to the new struggles, and focus on energy conservation for my muscles, and things to help me not choke and prevent me from getting aspiration pneumonia. I will get another pulmonary function test to see how the muscles around the lungs are doing, if there getting weaker, and to make sure the lungs themselves aren't affected.

As you can imagine this has really been an emotional and physical roller coaster. But I will say, that despite being seen by an uncaring rheumatologist, I am so blessed to have caring doctors such as Dr. Carrasco, my palliative care doctor, Dr Friedman, Dr. Markley my primary, Dr. Higginbotham my pain management doctor, Dr. Cline-Burkardt my Hematologist and Dr. Price my PT. Knowing that I have both intelligent and caring doctors involved in my care, makes dealing with this easier in some ways. They make me feel as though you I am in good hands, and that they really care about me as a person, and that I'm not just another patient to them. Dr. Carrasco for example is the honoree for this years Austin Walk To Cure Arthritis, which is sponsored by the arthritis foundation. He is the team captain for team Specially For Children. To spend his personal time to participate and lead a team for the walk, when he is so busy taking care of patients, shows how dedicated he is to the cause of not just treating juvenile arthritis, but finding a cure. I just came across Jude 1:22 which says, "And some have compassion, making a difference:…" I think this scripture verse describes Dr. Carrasco (and the others I listed) perfectly, because his compassion for his patients and their families is making a difference in their lives. It shows them, that there are doctors that are both incredibly smart and good at what they do, but care about their patients as people. I think this brings them immense comfort, making them feel that their child is in good hands. This is certainly true for me and my family. He, and others, are also making a difference for future doctors, because medical students and residents can see how a doctor should treat their patients, and their families. That is a big contribution to the medical world. 

With all that has been going on, it has been hard for me and my family. However, I know that my faith and God, will help me get through this, both physically and emotionally. I have such a wonderful support system of family, friends, my church family, and even my core medical team. Despite having more difficulty doing things, I am continuing to live life to the fullest. Im getting back into my schoolwork, having to take a break with being and the hospital and all, going to church and my Tuesday night Bible study, helping out with the youth group at church, going to book club, and taking a spiritual gifts class at my church, which is being taught by a dear friend. Yes, there are days where I'm so exhausted, that I could just stay in bed in sleep, but I don't. I want to go out and live life, and do as much as I can for as long as I can. Each day is a new day, and a gift and a blessing from the Lord. We must all live each day to the fullest, because we never know what life may bring. I thank God for giving me anew day each morning. I do my best to live each day honoring God, and living a life filled with joy and peace.

Note: The Arthritis Foundation's Austin Walk To Cure Arthritis, is Saturday April 26th at Concordia University. For more information on the walk, and/or if you would like to make a donation, specifically for team "Specially For Children, go to www.walktocurearthritisaustin.org. There are 300,000 US children that suffer from Juvenile Arthritis, including almost 1,900 right here at home. Please help us end the pain and suffering. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta

The American Recall Center

Awhile back I recieved an e-mail from Dr. Mario Trucillo of the American Recall Center, which is brand new website that keeps patients and consumers with the most up-to-date FDA information in easy to understand, plain language terms. I got an opportunity to view the webdiste, and in combination of talking with Mario, and doing further research, there are really no other websites that provide patients with information like this. The fact that it also aims to help those with complex medical issues, is very near and dear to me, as I have such a complex medical case. To also help pastients with a variety of medical issues from asthma to chrohns disease, is really wonderful, because so many can benefit from its resources. I find the work that Mario and the rest of the center are doing, a tremendous blessing. They are providing patients and their families information on the medicines that are saving and improving their quality of life, in a way that helps them to feel bit more at ease, and keep them informed. Isaiah 26:3 says, "Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee." I know this verse relates to our trust in God, but I feel that God had my path cross with Mario and the recall center's. I feel that I can trust him and the rest of the center to make a part of this medical journney that many are on, easier, giving patients and their families peace. For those who would like to know more about the American Recall Center, pleae  visit their website at http://www.recallcenter.com

Please stay tuned for my next blog, which will give more of an update on what all has been happening. I meet with Dr. Carrasco on Thursday, and wanted to do one post with all the information after the appointment, instead of two or more. Thank you all for your continued prayers, support, and interest in my blog. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta