In honor of the New Year, I would like to look back at our past year and the many lessons and experiences we have had. Hopefully then I will have a better plan for what I want to keep, and what I want to change this year. I have contemplated this post for days, and have not found a good way to state what has happened, nor an elegant way to explain the many lessons and blessings that we have received. I have also experienced great anxiety about how others may read and possibly judge me and my family. So, my dear readers, please read this with understanding and compassion. We are not perfect. Our family has struggled greatly, and we have endured much that I never thought possible to survive. Fortunately I have, my family is intact, and we are looking forward to a much brighter and happier year ahead.
January began with me securely diagnosed with Multiple Sclerosis, but not responding to the first medication that they had tried with me, which is somewhat typical. Copaxone was having no effect, and I was hospitalized every two months with flares that required high-dose steroids to control. The scariest issue was that when I would have a flare, my body would lose autonomic regulation, which means that I would have an extremely low heart rate and blood pressure. This would cause me to faint, and there was a lot of discussion about the possible need for a pace maker to make sure that I did not have any major issues. I was hospitalized at the end of December because of my extremely low heart-rate, and then tapered off steroids throughout the rest of the month.
February brought crushing depression. I was suicidal for no clear reason. I saw no end to my suffering and reasoned that everyone would be happier and better off if I just ended it early, and not live a life of expensive doctor’s bills, dangerous treatments, and debilitating illness. Because the onset was so sudden, and atypical of me, I sought immediate treatment with my therapist, and consulted my doctor’s. When the depression did not lift after a few weeks, I forcibly sent to the ER for evaluation. Because I had a plan to harm myself, they immediately put me on a 72 hour psych hold, and I sent to a local treatment center. That experience could form a book, and felt like the maximum loss of privacy, control and identity. Someday I will write a book about that experience, and how I would change the system. I am a psychology major, studying counseling, and that was least therapeutic environment I have ever been placed in.
Fortunately my depression ultimately had a medical source. I degraded physically in the treatment center quickly. My left side lost control and strength and went numb. My heart rate once again started to drop, as did my blood pressure, leading to issues with me being able to stand without fainting. Thanks to a good friend and the increasing medical issues, I was quickly released. I was then just as quickly shunted back to the hospital. I received treatment for an MS flare, with high-dose steroids, which quite likely saved my life, as steroids are the main treatment for pituitary failure. Most patients with my condition end up in the ICU, die and are diagnosed postmortem. My thyroid had stopped functioning, which was the cause of my severe depression. The doctor’s were unable to control my heart rate, or blood pressure, and I could not stand or put weight on my left foot. I pitifully crawled to the bathroom, required help doing anything like bathing, and was ultimately sent home in a wheelchair when they were able to somewhat stabilize me. I had follow-up from home health care, but no answers, and little help.
Two weeks after being sent home. I called the doctor’s and told them that I thought I was dying. I had appointments the next day, and they suggested that I wait if I could, but I was also given the choice to return to the hospital. As the hospital had provided no answers before, I waited through the night and saw my endocrinologist the next day. He examined my blood work and determined that I was experiencing pituitary failure. I am 5% of 500 people diagnosed with this condition in the US each year. It is extremely rare, and treatment is to replace every hormone with synthetic copies. My doctor had only seen one other case similar to mine, and all cases are referred out of state to specialty clinics. After another round of blood work, I started Hydrocortisol and my life immediately improved. I was able to return to basic functioning and was no longer bedridden or in a wheelchair. They then determined that I had experienced full pituitary failure, and I was given Human Growth Hormone along with a drawer full of drugs that I must have simply to stay alive. Thank goodness for modern medications.
This took us to June. My husband got a job working for Bricks 4 Kidz to help pay all the medical bills and hopefully help us to afford a trip to Cedar Sinai where they have doctors who are more knowledgeable about my disorder, which is autoimmune hypophysitis. Bricks 4 Kidz was a good job, as it allowed my son to attend Lego based summer camps with my husband, while I continued to recover, and the pay and hours were decent. Unfortunately partway through the summer, the company changed owners, and we began to experience problems with the new owner. I even worked their briefly when they were short teachers and needed help. It was a lot of long hours, and thankless, often criticized work, but my husband endured it with the hopes that it would give us the medical answers we needed.
In August and September our car died, and everything we had saved went into repairs for it. It was under warranty, but the extent of the problems were such that anything we had managed to save went towards our deductible, and non-warranty repairs, such as the tires, and a new battery. Needless to say this was rather discouraging.
Benjamin and Damon went back to school at the end of August, and by mid-September I visited Benjamin’s classroom. Due to the steroids I take and the pituitary failure, I am immunocompromised. I had bronchitis rather severely over the summer twice, and the stomach flu. Each illness required weeks for me to recover, doubling of my medication, and higher doses of antibiotics than most would need. When I was finally able to visit Ben’s classroom, I learned that he was struggling. I got a call from his theater teacher stating he was struggling there. He has ADHD, and we hoped that it was that and anxiety about my illness and frequent hospitalizations that were causing the problems. We were shocked when the psychiatrist we visited immediately diagnosed him with Aspergers, ADHD, OCD, and a mood disorder related to the trauma of my illness. I sought a second and third opinion and they all agreed. My son was autistic. He has severe ADHD, and is also severely dyslexic. Further testing has shown us that he is low in several areas and will need a lot of different types of therapy and added teaching to become a functional adult.
This news was devastating to me. I had endured complete breakdown physically. Financially we were unable to pay our bills and borrowing from my family, which is extremely generous of them. I stopped coping and was extremely angry at everything. When I visited my doctor he decided to increase in my medication to help with the crisis, we got counseling for everyone in the family, and Benjamin was given medication to help control the outbursts, ADHD and other issues. Upping my medication has allowed me to cope, but it is not a long-term solution. Benjamin changed rather dramatically when school started. He became angry, withdrawn, and difficult to connect with. He stopped eating and cried everyday. He is doing better now, but we have a long way to go.
November was spent getting him diagnosed, and different supports in place at school and home to help him out. He is doing a lot better, but I am still new to this, despite my past training in psychology, and work with autistic children.
December is the time of birthdays for both Benjamin and I, as well as Christmas. This year, Ben turned 8, which is when children in our religion get baptized. So it was an extremely busy month. we managed a birthday party, a baptism, and Christmas. My sister came from Chicago and brought the stomach flu with her. My son had it days before Christmas and then my husband caught it Christmas day. My birthday is the day after Christmas. He was a trooper and made it a great day for me, but is still struggling to recover. He has possible colitis or Crohn’s disease, and reacts strongly to all stomach bugs. We are still fighting to keep him out of the hospital. Benjamin had to visit the ER on New Years Eve because he was waking up screaming in pain from his stomach. It is still unclear what the problem was, but most likely he was severely constipated, which I’ve learned is common in autistic kids. He is so hard to read. He is sensitive to certain types of touch and injuries and will scream bloody murder over them, even if you aren’t touching him, but other things he doesn’t seem to notice. I cannot tell how much pain he is in, nor what to do about it. For example, he had a baby tooth that needed to come out. It was super loose, but he would scream every time my hands came near it. Ultimately we pulled the tooth, but he complained a LOT! However, when we took him to the park he fell hard and landed wrong, but got up and brushed himself off like nothing had happened, and I was sure he’d seriously injured himself. Autism has changed everything about my parenting, and I am so confused.
Other highlights include my doctor forbidding me from working because of my compromised immune system. I was finally able to get representation from Binder and Binder for my disability case, and hopefully will be able to get Medicaid and/or Medicare to help cover all the medical bills. We are trying to get many services such as Medicaid for Benjamin as well, because it is the medical bills that make our budget impossible. I also found an amazing yoga group that has helped me immensely. Unhappily, I was also told that despite the fact that my doctor’s replaced the diagnosis of Multiple Sclerosis with pituitary failure, I continue to have neurological symptoms, and have had another positive MRI, which means I probably have MS. As this news came in the midst of Benjamin’s diagnosis and testing, I have yet to pursue confirmation of this diagnosis, and will have to take care of that soon. It is the consensus of most of my doctor’s that I have MS and pituitary failure, which is not a good thing. Damon is working another job to help pay the bills, and seeking a third, which means he is stressed and stretched almost to breaking, and I am the primary caregiver/therapist for our son.
Sometimes I feel completely broken, like there is no fight left. Other times, I can move mountains to make what needs to happen get done. Everyone has an opinion, but our situation is complicated, and there are no simple answers. Hopefully this year will bring answers and greater support from the community, our doctors, financial supports and family support. I know I have greater and deeper resources than I could have imagined. Our family and friends have stepped up and supported us in ways that I have regularly left me in tears, and the blogging communities that I am part of, have been supportive and understanding. In many ways there are no words. This year was heartbreaking, hard, crushing, and overwhelming. We survived. Hopefully 2013 will be a year when we thrive instead of just surviving.