It has been quite a while since I have updated this blog. That is because I wanted to have confidence in what I was going to share. Over the last two months, my life has flipped, spinned, and I have been tested.
I purposely left this blog open for non-followers to be able to access. This has allowed many patients, doctors, and family member who have been affected by HE (Hashimoto's Encephalopathy) to contact me, and I am honored. I do not know where you stand on your belief or relationship with God, but I have to share what has been going on in our house, and I know it is nothing short of a miracle.
Many of you know that there was a fundraiser thrown for my family by some very special friends. We had been forced to spend $20,000 in health insurance premiums and deductibles. This did not include any of my medical bills. I had been forced to try to work again, and I was blessed to work for an amazing company. While the income was needed, each shift that I worked was speeding the progression of my disease. I would return home after each shift with a migraine, nauseous, and often with tremors. I spent my off hours resting, and this often was not enough to reduce the symptoms. I began having episodes of convulsions every day and my medicine was no longer able to control them completely. My doctors made the decision to stop my immune suppression therapy, and I continued to decline. My antibody level began to rise and I was accepting the reality that my health was in a desperate place.
The first blessing was when my husband's health insurance had open enrollment and they accepted me with my pre-existing condition and did not put a rider on the claim (limitations for disease related bills). This reduced our annual expenses. The next blessing was that the fundraiser, which aspired to cover the $20,000 annual expense, was exceed with only half the projected attendance. This allowed me to stop working and spend more time resting during the day. Another gift came when my Immunologist called and told me that he wanted me to return to immune suppression therapy, because he did not agree with giving up on our fight. I have been on Imuran for six weeks now, which is early in the treatment, but I am already feeling much better. All of these blessings were answers to prayer by my family, community, and strangers.
Now this is where it gets really nuts folks! About six months ago, my 12 year old daughter was experiencing continuous pain in her feet. An appointment with a surgeon revealed a couple of problems. Part of the problem could be addressed by putting her in specialized shoes and aggressive inserts, but surgery would ultimately be required. This was prior to the fundraiser and we were emotionally, spiritually, and financially rocked by this news. Then a family that we are close to volunteered to purchase Bradie's shoes for her. Not only did this help us with the financial burden, but we were overwhelmed by the love and support of this family. They were in the midst of there own struggles, yet they were thinking and acting on our behalf. People...if you do not have people like this in your life...pray now and find them. They are like having Jesus as a neighbor...a neighbor who will drink a beer with you and coach your kids in baseball! hahaha
Bradie's pain continued to get worse though and she was barely able to walk. A visit with the doctor revealed that the aggressive arches we put her in had actually made the situation worse. Surgery would not address this new problem, just time. Bradie cried tears of pain and frustration in her sleep and during the day. This was so hard as a mother to witness. Our family and community prayed again.
A month ago, Bradie developed what appeared to be a sinus infection and cough. Just 24 hours after visiting the doctor, she was unable to move her neck, had an irregular heart beat, and fainted on me. The emergency clinic I took her to examined her and decided she needed to go to the hospital. A ride in an ambulance and a few hours in the ER resulted in an initial diagnosis of a virus that had inflamed tissue around her brain and spine and also attacked her heart. We were moved to the pediatric Intensive Care Unit. I was being exposed to all sorts of infectious diseases, but no one was going to be able to drag me away. Our church, community, family, and friends prayed again. Her youth group came and visited, her youth pastor dropped in to see her, and we waited. Just 48 hours later, we were walking out of the hospital together without any sign of illness. She has been healthy ever since. Not only that, the pain in her feet has almost completely gone away. She went to a Father-Daughter Dance last night and danced pain-free.
For the first time in years, our family feels healthy and a freedom to dance. The Hashimoto's Encephalopathy does not rule our lives. We were carried and shielded through the dark times by our faith in a God who heals and restores. HE owns our hearts and souls and we are blessed!
