As I think about writing this yearly letter, I am boggled. I don’t even know where to start. I thought this year I’d take a different angle. I’ll try to tell you what happened in a “calendar” format and then throw in some extras at the beginning and the end.
As I’ve told you in the past, Amy has an autoimmune disease called PANS. She’s been seeing a specialist in Texas for the past couple of years. She has been on long-term antibiotics and antivirals, but she wasn’t getting much better. In fact, she kept having labrum tears that no doctor could explain. So, I started praying for guidance, for answers. I wanted the Holy Spirit to guide us to the right doctors or the right plan. I started to find Bible verse after Bible verse about trust. I knew in my heart that something else was wrong and we needed answers if we were ever going to make her better. I knew I needed to trust the Holy Spirit to lead us in the right direction.
A friend suggested I read about Lyme, so I picked up a book by Dr. Richard Horowitz. I read the whole book and realized most of it sounded like Amy. I called his office in New York to get an appointment, but he was not accepting new patients. I wrote a letter asking them for the name of another doctor that followed his protocol, but they wouldn’t help me. Her PANS specialist said not to waste time and money because she did not have Lyme. He also stressed that she didn’t have Ehlers Danlos Syndrome or POTS. I was frustrated, and my gut said to talk to a Lyme specialist…but which one?
A friend called me. She’d found out that her daughter had Lyme and she knew I’d been doing research. Where should she go? I didn’t have an answer, but told her that I believed in Dr. Horowitz and that she should read his book. She got an appointment with a doctor in Texas. I got an excited call from her the day of their appointment. They really liked the new doctor and he mentioned that Dr. Horowitz was his mentor and friend. That was all I had to hear. The very next day I called for an appointment. I’m convinced that God had a hand in leading us to this doctor.
We ended December of 2016 with plans for Amy to have hip labrum repair in January. I also had a sleep study that discovered I have sleep apnea. I needed a bi-pap to improve my sleep. It’s taken some getting used to, but I do feel more rested. And so we started the many adventures of 2017.
January: We had a quiet New Year. Amy was in pain with the torn hip. She didn’t feel much like getting out, because crutches were hurting her torn shoulders and a wheelchair even hurt because she couldn’t sit at a 90-degree angle. Amy’s hip surgery
was on the 3rd. It was a laparoscopic surgery and was quite successful, other than the fact that they had to intubate her, because she kept forgetting to breathe. Soon after her surgery she complained of a bad sore throat. The doctors said it was because of the tube they put down her throat. She broke out in a rash and they blamed that on the pain medication. We later discovered that she had strep. She still has hip and shoulder pain, but none have been fully torn, so no additional joint surgery is imminent. Soon after Amy’s surgery, Allen traveled to Pax River, Maryland to work on a Navy project.
February: The 4th would have been my dad’s 90th birthday. It’s still hard to believe he is gone, after all these years. I still miss him so much. Amy had a sleep study, to rule out sleep apnea. They didn’t find anything that made them suspect a problem, so they continued to believe her sleep issue were related to her low neurotransmitters. Allen traveled to Baltimore, Maryland for a meeting.
March: I decided I was not really thrilled with the psychiatrist Amy was seeing. She seemed to have no original ideas, but just did whatever our specialist in Texas suggested. PANS causes encephalitis and psychiatric symptoms, so I really wanted to find a doctor with more knowledge of PANS. My quest for answers brought us to a
psychiatrist in Edmond with a knowledge of PANS and PANDAS. He really listens to us and has come up with some ideas. He also encouraged me to consider EDS, POTS and Lyme. We also filed for Social Security Disability for Amy. She was turning 26 and aging out of our family insurance through Tinker AFB. This was something we’d been considering for a while, but didn’t want to have to ask for help. Since it seemed obvious that she wasn’t going back to school or work soon, we decided it was time to ask for assistance. Our hope is that if she can get on disability, we can possibly get her back on our family insurance.
April: Amy turned 26 and we opened her own health insurance policy. My cousin’s daughter Alexandria married Blake in the Kansas City metro area. We didn’t get to attend, but my mom did. Meanwhile, our new refrigerator (that we bought in June of 2016) quit. So, we lived out of coolers until we got it repaired. It was still under warranty, and it was a good excuse to deep clean the refrigerator.
May: Amy received her first Social Security Disability denial, so we hired a Social Security attorney to help with appeals. She seemed to think that eventually Amy’s claim would be accepted. We’ve since been through several denials.
June: Amy found three darling, newborn kittens in a box. They were tiny and still had blue eyes. She called in a panic, and I told her to bring them home. They moved into the laundry room and we fed them by hand. They were all boys, so we named them Doc, Tigger and Thomas. Eventually, Doc and Tigger went to live with another family, but Thomas stayed. Amy is his Mama and he’s been very good for her. He lives in her bedroom (at least until we get him fixed). He comes out to socialize, but the older cats still aren’t sure they like our new addition. This month, our granddaughter, Hannah, celebrated her 3rd birthday in Ft. Worth. We made a quick trip down to be there for her party. This month I started seeing a chiropractor for my back. He gave me stretching exercises that have really helped. We also made a long weekend trip to Galveston with
David, Courtney and Hannah to celebrate David’s 30th birthday. We had such a good time, but the drive was long for Amy. Long car rides are hard on her hips. Right after we got home, we discovered that Amy had strep again.
July: Allen and I celebrated our 33rd anniversary. The years just seem to fly by. We finally got a doctor to listen to our concerns that Amy might have EDS. He attempted to get genetic testing for EDS at OU’s Med Center, but there was a 1 year wait to even get in line for an appointment. Amy was so disappointed. Nobody seemed able to explain the frequent tears.
August: Amy’s new psychiatrist decided to switch her antibiotic to Augmentin, the first choice if a patient has PANDAS. He wondered if maybe she had a strep problem since she’d had strep twice in this calendar year. Another family wedding was in Manistee, Michigan this month. My cousin’s daughter Katie married Josh. Again, we couldn’t swing the trip due to time constraints and Amy’s illness, but Mom drove to Kansas City, and joined the family for the trip. Allen made a trip to Huntsville, Alabama for a multi-day conference. The conference was in the airport hotel, so Allen chuckled that he never left the airport.
September: This month I celebrated 16 years cancer free. I’m so grateful that God blessed me with more time here on earth. I truly believe He knew my daughter needed me. Allen traveled early this month to Dayton, Ohio for a conference. While he was
gone, my mom’s boyfriend Ted came down with shingles. We had him in the hospital emergency room a couple of times before they finally put him in the hospital with encephalitis. Maybe I should have been a doctor, because I had called it. One of the “benefits” of having a daughter with autoimmune encephalitis, I guess. Meanwhile, Courtney (our daughter-in-law) went into labor. Our grandson Joseph Allen was born. Allen got home that evening. We didn’t make it to Ft. Worth in time for his birth, but we were there the next day for his homecoming. He is adorable! Ted is still having health concerns from his shingles and encephalitis. My mom is staying busy getting him to physical therapy. We also had our first appointment with the new Lyme doctor. He gave Amy a clinical diagnosis of Lyme, Bartonella (cat scratch fever) and Babesia (tick borne malaria). We already knew she had HME. These are all Lyme co-infections. He gave us a battery of tests to run and the names of two other doctors he wanted us to see. One was a cardiologist and the other a neurologist. He said we had all sorts of things we needed to rule out before she could get better. Amy’s diet has been gluten free and vinegar free for several years. The doctor added dairy free to her dietary restrictions. This month we also attended Concordia’s 10th birthday celebration. Allen’s mother lives in Concordia’s independent living center. She stays busy working in the volunteer store, and she regularly bakes for the center’s health care staff.
October: We saw the new cardiologist, and he started running all sorts of tests. We made many trips to McKinney, Texas to do everything from a tilt table test to ultrasounds. In the end, he diagnosed her with POTS which is a type of dysautonomia. She is on a new high salt, high protein and high fluid/electrolyte diet. He also said she has Ehlers Danlos Syndrome, a genetic collagen disorder. We are currently awaiting an
appointment with a geneticist who specializes in EDS. The neurologist in Lewisville did a short cognitive test and a brain scan. Meanwhile, Allen returned to Dayton, Ohio for a meeting.
November: We started the month with Joseph’s baptism. We took our moms to Texas with us for the big day and to meet the baby. Amy and I spent several days in Texas for more testing. The 24-hour blood pressure monitor was a disaster. It malfunctioned and bruised her arm. But the worst was the 3-day EEG. Amy was not a big fan. She had 25 leads glued to her with a colorful ponytail of wires that went to a box. Our hotel room had a camera on us. We felt a little like reality tv stars. The EEG showed that Amy has Partial Seizure Disorder, so no driving (at least until after we see her doctor in January). She’s not crazy about that limitation. It’s one more freedom she has lost, although she doesn’t get out much. The refrigerator quit again, right before Thanksgiving. This time, it was not under warranty. Again, we spent days living out of coolers while we waited for a part. For Thanksgiving, David, Courtney, Hannah and Joseph visited. While they were here, we attended an OU football game. Right after Thanksgiving, we all came down with the flu. No fun, but hopefully that means we’ll have a healthier Christmas this year.
December: We got word from Social Security that Amy’s disability hearing will be in February. Please keep your fingers crossed for us. Amy started seeing a new gynecologist who is testing her for pelvic congestion at the cardiologist’s request. The ultrasound she ordered showed some areas of concern, so they are scheduling a D&C so that she can send tissue for a pathology report. There is a small chance it could be cancer. While she’s in surgery they plan to run an abdominal scope to look for endometriosis and/or pelvic congestion. If it turns out to be pelvic congestion, she will probably schedule her for a hysterectomy. Courtney returned to work after maternity leave and Joseph will start going to school with Hannah in January of 2018.
Allen says to mention that he’s still enjoying golf, but doesn’t find as much time to play as he would like. I’m finding the same has happened with my scrapbooking. But maybe this will be easier this coming year.
Our family pets include our two dogs (Lucy and Captain Jack), three cats (Bagheera, Figaro and Thomas) and our three birds (Bert, Mary and Tinkerbell). They’re all doing well. Cappy is slowing down a little and getting very gray.
I know this letter probably sounds like a real downer. To be honest, the year has had more than its share of challenges. But we prayed for answers, and we are getting them. I honestly believe that the Holy Spirit is leading us. I regularly remind myself that God has encouraged me to trust Him. I’m so thankful for my Bible study ladies that help keep me grounded and pray for me regularly. I know things will get better. We all pray for a healthier 2018. Hope this letter finds you and yours doing well. Drop us a note. We’d love to hear from all of you.
Love, Missy, Allen and Amy Schones