We started 2021 with a big snow. It was very pretty and a sign of a new start. Although this year was not all that different for our family. Allen is still on the road a lot. He’s taking online classes, so that also takes up a lot of his time. It seems like his time at home is full of chores and homework.
I turned 60 and have now celebrated 20 years cancer free. I’ve spent a lot of the past year watching online scrapbook and art classes. Allen got me a new toy this past spring. I now have a Silhouette Cameo and I’m in love! I have painful joints in my hands from Psoriatic Arthritis, so paper piecing was getting increasingly difficult. Now I can cut complicated pieces for my scrapbooks, and it’s so much fun!
We got vaccinated, but Amy’s doctors do not want her exposed to Covid. Her blood brain barrier is open due to her autoimmune encephalitis, so Amy and I stick close to home. I think we only had to make two trips to Texas this year for tests. The rest of her remote doctors have been doing tele-med. I could get used to that! We do have to see some local doctors, but it’s been nice to not have to hit the road several times a month. We are adding two new doctors in the next month or so. She’s got an appointment with a new mast cell specialist (the last one was boggled by her complex case). We have a referral for a sleep specialist. The ones in Oklahoma say she doesn’t have sleep apnea, but her sleep remains an issue. She may be getting an implanted loop recorder soon, because her cardiologist thinks she might have afib. Some of you helped her celebrate her 30th birthday this year by sending cards. Thank you for making it special for her.
Amy lost her sweet parakeet, Bert, this year. He died in her hands. It was very traumatic. His mate Mary has adjusted well to being alone, but she still misses him. Our dogs, Minnie and Lucy, are doing well. Lucy had to have a few teeth pulled this year, so her smile has changed a little. She often has a pink tongue hanging out with that one tooth showing. Minnie spends much of her time trying to catch squirrels and trying to find the fox that we believe lives in our yard. Our cats, Figaro, Bagheera and Thomas are still co-existing. Ro is in early renal failure and very thin. Baghee is attempting to show that he’s now the dominant cat, so he’s turned into a grumpy old man. Thomas is a hoot. He’s the youngster in the group. He’s playful and looks for chances to bat at one of his brother’s tails.
David accepted a new position as the Director of the Veterans Onward program at Austin College. He is also teaching in the Religious Studies and Classics departments. He’s Youth Minister at Trinity Episcopal Church in Ft. Worth, so he wears many hats these days.
Courtney is now the Vice President of Private Deal Operations at Oak Hill Advisors and has been very busy expanding and training her new team.
Hannah is in second grade and is interested in all things magical. She particularly loves reading about dragons and other mystical creatures, as that encompasses her other passion which is animals.
Joseph has turned four and is getting ready for pre-k next year. He is getting really good at counting and writing his letters. He loves everything to do with Spiderman and superheroes.
The kids visited in July and again in December for an early Christmas. Allen sees them more often when he’s in Texas. Visits are good medicine for Nana and Dodah (their name for Amy). Nothing makes my heart happier! Video chats are awesome, but they just aren’t the same as a hug.
We had an epic hailstorm in April. Our neighborhood looked like a war zone. Many windows were broken, and no one can get glass to replace them. We were lucky that we only lost one window in the sunroom. We still need a new roof, but it’s not leaking. Our deck roof is gone. That also needs to be replaced. It totaled Allen’s car and damaged mine. It took 6 weeks to repair my car, and then a second huge hailstorm came within days. We lost my new windshield and the one in Allen’s new car. Both need to be repaired again. I’m done with crazy Oklahoma weather.
My mom is doing well. Robert took her to Houston for a check up this year. She’s cancer free. She still has shortness of breath, probably due to her thymoma surgery a couple of years ago. Ted started having more trouble getting around this year and having issues with dementia. As much as Mom hated it, he was getting to be too much for her to handle on her own. He’s now in a skilled care facility. She’s lonely, but able to go to church and Bible study regularly (things she couldn’t do while caring for Ted). She also stays busy running up and down the highway to visit Ted. It’s just challenging to get out in the world during a pandemic safely, when you are high risk.
Allen’s mom is doing well at Concordia. She’s resumed going to church and working with their Women’s Auxiliary. She also sings with a group in Memory care every week. She’s always busy making a quilt while watching Hallmark movies. She does beautiful work.
Hope all of you are doing well. I really miss all my friends and family. I must admit that I enjoy social media even more, now that I am cut off from most in-person activities. It’s nice to see your smiling faces and hear what’s going on with all of you. Thankfully, Amy and I are introverts, so we’re doing okay. But we pray that these variants will die down, so that we can start to get out a little more in 2022. Please take care of yourselves. And I pray for a blessed new year for all of you.
It has been a challenging year for everyone. So much sadness. So many people sick. Staying home instead of going to holiday parties. Most of you have probably know at least one person who has died or know someone currently in ICU. You probably know someone who is high risk, or maybe you are? I wondered how to even begin to write a Christmas letter this year. While pondering the year 2020 … I started to think about 20/20 vision, that perfect vision that we all wish we had. What is there in the year 2020 that we really need to see? That led me to pick up my Bible. I asked the Holy Spirit to lead me to some helpful verses.
2 Corinthians 4:18 says, “So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”
Hebrews 11:1 says, “Faith shows the reality of what we hope for; it is the evidence of things we cannot see.”
No matter how bleak things seem right now, God wants us to have hope. I don’t know about you, but I’m looking for ways to be kind to people around me. A little kindness always makes everything a little brighter. In a world that seems to be divided right now, we all need to try to pull together. God wants us to look for the things that cannot be seen, and to have faith in Him.
I don’t have a lot to share about this year. I quietly celebrated my 19th year Cancer-free in the fall. I have mostly been at home. I’m high risk and so are my mom and Amy. We don’t’ get out much. I’m trying to keep us COVID free. I do grocery pickup. I am becoming highly creative when it comes to getting whatever we need without going in stores. I have done a lot of painting classes, scrapbooking, needlework, sewing, and Bible journaling. I took a one-week class on how to write children’s books. A gift shop in Oklahoma City closed their doors due to the pandemic, and we bought their shelving for my craft room. Since we got those installed, I have been organizing all my craft supplies. I help decorate lunch sacks for homeless meal delivery in Norman. I have completed several Bible studies on my own. I sure miss my Bible study ladies, it is not the same without our discussions, and when we meet again two spots at the table will be empty. This year has been so hard.
Allen had to travel a lot this year with his job. We really hope that will improve this coming year. We had the weirdest 36th anniversary ever. He was out of town, so we talked on the phone. We wouldn’t have gone out anyway because of the pandemic, but it was strange to celebrate without him here. The recent ice storm in Oklahoma brought down a bunch of tree limbs. That triggered tree trimming, and we have really cleaned up the yard. We refurbished 4 metal deer and covered them with lights for our Christmas light display this year. They were a lot of work, but it was fun working together.
Amy is 29. She has really been struggling with her health again this year. Her Lyme specialist is trying to get her into remission. He finally sent her to a Mast Cell specialist. That has been suspected for a long time, but we did not have a referral. The new doctor gave her a MCAS diagnosis. The medicine has been making her extremely ill, so they just changed it. Her POTS is either getting worse or the medicine isn’t working well. She has passed out several times in recent weeks. She is spending December in a month-long heart monitor. Her doctor’s appointments have been almost exclusively virtual. We have only made one out-of-town day trip to a doctor for testing all year. I took a zoom, basket-weaving class with her, and we each made two baskets.
Lucy the Pug and Minnie the Rat Terrier mix are doing well. Lucy is getting a little gray, but so am I. We still have our three cats: Figaro, Bagheera and Thomas. Figaro is in early renal failure. He lost a lot of weight, but he is doing a little better. Amy also still has her two Parakeets. They are getting old, and Bert is sleeping most of the time. We know he probably will not be with us next year, but they were rescues and have had a good life with us.
David and Courtney bought a house in Ft. Worth. I have only seen pictures, but it’s beautiful. David has been teaching a mixture of in-person and online classes at Austin College and Paul Quinn. He also is the Youth Minister at their church. He spends a lot of time writing and presenting papers. Before the pandemic, Courtney was traveling to England for work. In the spring, they were going to take a trip to Italy with the kids, but it was cancelled. They have attempted to reschedule that trip. Fingers crossed for them. Courtney has been working from home with international clients since the original lock-down.
Hannah is 6 and in First Grade. She was not a big fan of distance learning, but she loves to read. Now, she is back in the classroom. She loves gymnastics. She is into Disney princesses, My Little Pony, foxes, and Star Wars.
Joseph is 3. He loves school and gymnastics. He is into cars, Star Wars, Spiderman, and Sonic the Hedgehog.
They all came to Norman for a visit in the fall. We spent a beautiful day in the park together. Pictures and phone calls are awesome but seeing them in person was priceless for this Nana.
My mom had surgery in Houston in January to remove a pre-cancerous spot on her head. Thankfully, this surgery was less complicated than her surgery in 2019. She celebrated her first-year cancer-free and had a wonderful checkup in Houston in the fall. She had diverticulitis but recovered from that without a hospital stay. In August we welcomed Hattie to the family. She is Robert and Susan’s first grand baby. Mom looks forward to meeting her third great-grand. Mom’s boyfriend, Ted, got C Diff and landed in the hospital this fall. While he was in rehab, he ended up with COVID. He is doing well, but still very weak. We are hoping he will be able to return home soon once the physical therapists think he is stable. For now, they talk on the phone or make facetime calls.
Allen’s mom has been locked down most of the year. She lives in Independent living at Concordia. They deliver their meals to their apartments and take wonderful care of the residents. Allen has visited her infrequently, because he does not want to expose her to COVID if he is encountered it in his travels. She has spent her time sewing, crafting, watching movies, singing, and with her plants. She laughed that over the past year, her plants had formed a jungle. I think they are going to have a Christmas sale to benefit charity at Concordia with some of her plants.
I believe God wants me to stay safe and wear a mask to protect those I love and myself. But I also believe that he wants my faith and trust. I am working on it. Please contact us and let us know how you are doing. We miss all our friends and contact with the outside world. Take care and stay as safe as you can. Please let me know if I can pray for you.
This has been a very challenging year, in many ways. I almost hate to rehash what has happened the past 12 months, but for those of you who haven’t followed our saga, I guess I need to fill you in. Before I begin, I want to say that through all the trials of the past year, we still have thankful hearts. Things could always be much worse. God is so good.
Early this year I went to the dermatologist. He diagnosed me with Psoriasis. My hands were also hurting, and my fingers kept locking up, so he suspected that I also had Psoriatic Arthritis. He sent me to the Oklahoma Arthritis Center, where that diagnosis was confirmed with x-rays and blood tests. I also have Ankylosing Spondylitis. So basically, my skin cells develop too rapidly, and I have an autoimmune that makes my body attack my joints. My instability in my back is compounded by my body trying to grow extra bone to fuse my spine together. I’ve known for years my joints hurt, but I guess I thought everyone my age just had aches and pains. While that may be true, I got an extra dose. There is no cure, but I’m now on medication to slow the progress. The dermatologist also found a Basal Cell Carcinoma on my head that needed to be removed. I had to have Mohs surgery in April. My surgeon was great, but the wound was about the size of a silver dollar…. too big to sew shut on my head. I had to go back the next day for huge flaps to be cut in my head by a plastic surgeon to close it. I ended up with something like 21 staples in my head. I’m now cancer free and all healed up. I’m also active in a Bible study group of women from different congregations in my area. They are precious friends that I treasure. My roommate from college moved back to Norman, so I’m thrilled to have another close friend here in town. I still scrapbook when I can find a spare minute. I don’t have a lot of free time right now. I’m in PT for my back and caring for Amy. I also have been taking care of my mom, but I’m getting ahead of myself.
After we found the skin cancer on my head, my mom announced that she’d had a spot on her head for a long time. She’d shown it to her hairdresser, but never to a doctor. I pressed her to go to the dermatologist, who did a biopsy. Hers was not as simple as mine. It ended up being invasive Melanoma. That was in late June or early July. We’ve been making trips to Houston to MD Anderson. She is now cancer free, but it’s been quite a journey with many bumps along the way. The story involves four trips to the ER, four hospitalizations, two surgeries (so far) and a possible stroke. She’s doing much better now. If you want, you can read more about everything she’s been through. She is also trying to sell her house and downsize, so we’re house hunting and packing boxes.
Allen finished up his work with a group in Dayton. He really enjoyed his time working with the people there. He has since taken an assignment working with people in Texas on a weekly basis. When he’s not in Texas, he is traveling to other locations throughout the U.S. It isn’t every week, but he’s been gone a lot. Hopefully, this coming year will see him spending more time working here in Oklahoma. He is also working on a new certification, so he’s taking online classes through the Air Force Institute of Technology. One more class and a capstone and it will be completed. I think we’re all looking forward to his classes ending. He still loves playing golf, when he has time.
Amy’s Lyme doctor retired. She has a new doctor in a Houston suburb. (I’m beginning to wonder if we just need to move to Texas!) We have just started seeing him, but we think we like him. After almost fainting in May, Amy’s cardiologist ran a few more tests and decided that she has adrenal POTS as well as her previous POTS diagnosis. He adjusted her medications and she’s doing much better. She now sees him once a year, unless she has additional issues. She spoke at the state capital this fall at an interim study. We are trying to get a bill passed that says insurance must pay for IVIG treatment for PANS/PANDAS patients, if a doctor orders it. This treatment is very expensive and insurance companies often deny the treatment. Other states have passed similar bills. I was very proud of Amy standing up to speak to state senators on behalf of her fellow PANS/PANDAS patients. She has so many challenges in her life, but she faces them with a positive attitude and such grace.
Our dogs Minnie and Lucy are doing well. They started going to day care when Amy and I travel out of town to doctor’s appointments. They love their “school”. Minnie is learning to use a “talking button” to tell us she needs to go outside. Minnie is only up to one word compared to the dog in the video. Lucy is busy bossing everyone around in a true Pug fashion. Both love chasing squirrels in our yard. Our cats Figaro, Bagheera and Thomas think they rule the roost. Ro and Baghee still are getting used to the “baby” Thomas who has boundless energy. We still have Mary and Bert the parakeets, but we lost our cockatiel Tinkerbell last winter. Our hearts were broken when she passed.
David earned his PhD from Southern Methodist University and has a publishing house looking at possibly publishing his dissertation. He taught this past semester at Paul Quinn College. He’ll be teaching a class there again in the spring, as well as teaching again at Austin College in Sherman. He’s looking for a permanent teaching position at a university that’s a good fit. I feel sure that will happen soon. He’s also presented papers he’s written at several conferences. He’s the Youth Minister at Trinity Episcopal Church in Ft. Worth. Courtney is a Senior Manager at Oak Hills Advisors in Ft. Worth. She will be traveling to London frequently this coming year for her job. It’s all very exciting. We are so proud of both of them and their accomplishments. Hannah is five and in Kindergarten. Her teacher says she’s a real leader. She’s reading now and loving it. She loves Captain Marvel, Disney princesses and My Little Ponies. Joseph is two. He is starting to talk a lot. He loves Mickey Mouse and Spiderman. Both kids take gymnastics classes. Their family has added a new addition of a kitten named Boots.
Allen’s mom still lives at Concordia in Oklahoma City. She volunteers in their little store and is active in the philanthropic group at Concordia. She goes to weekly Bible study and attends Concordia’s church services. She also stays busy baking for her friends and the employees of Concordia.
Allen’s birth mom, Lorraine, has also been dealing with health issues. She was diagnosed with breast cancer this year. She is currently undergoing treatment and doing well. All our mothers remain in our prayers, and we hope they are in yours as well.
We were thrilled when OU won the Big 12 Championship. We are looking forward to the upcoming playoffs. We didn’t get to attend all the games this year, but hopefully next year will find our family in better health.
I feel so blessed. This year could have been so much worse. I must admit that there were times that I wondered how it was all going to turn out. It’s been a real trial for us all. But I trust God and have faith that it will all turn out okay in the end. Thank you to all the wonderful friends and family who kept us in their prayers. We wish you all a very Merry Christmas and a happy, healthy New Year.
Here I am again. It’s December, and I’m trying to gather my memories. Here is my feeble attempt to share all the good and bad of the past year. I never cease to be amazed at all the changes in one trip around the sun. At least we are never boring. Hang on for the ride. Here we go.
We ended December of 2017 with Amy having surgery. It was a D&C and abdominal scope. They wondered if what they were seeing in her ultrasound could be cancer. Thanks be to God, after testing they decided that it was not. But the surgery caused a flare of her autoimmune PANS/PANDAS, so she ended up with Scarlet Fever. She had a terrible rash, especially on her face and chest, sore throat and nausea. On top of that, she had terrible rib and clavicle pain. Again, the anesthesiologist suggested that Amy had sleep apnea. This continues to make us shrug, since she’s had a sleep study. Possibly it was due to her POTS. More about that later.
January: We again had a quiet New Year, since Amy didn’t feel good. We stayed home and watched Christmas movies. Amy had a bunch of tests to try to identify the new pain. Doctors suspected her gallbladder, but tests showed it was functioning properly. We didn’t want another surgery if it wasn’t going to fix the problem. She’s still suffering with this pain and other doctors suspect it’s actually due to her EDS.
February: This month finally brought Amy’s disability hearing. She was quite nervous, since Allen and I couldn’t go in with her. She did a fantastic job and so did her attorney. We found out later that she qualified for Social Security Disability. This gives her a little bit of money every month, since she can’t work right now. We continue to hope it will eventually allow us to get her back on our family insurance, since most of her specialists are not covered by Medicare. For now, we are just paying for private insurance. Disability also has allowed her to get a handicapped parking permit for the times that she is having a lot of issues. She still isn’t driving because of her irregular EEGs and seizures. She’s contemplating selling her car and getting a new one when she is released to drive again. We also ran the DNAConnexions test, which confirmed that Amy does have long-term Lyme, Relapsing Fever, Babesia, and Bartonella. Honestly, I believe this is the best Lyme test out there.
March: This month, Amy and I checked into Presbyterian Hospital in Flower Mound, Texas for another three-day EEG. This was not as fun as the previous three-day EEG that she did as an outpatient. This one was a sort of fishbowl experience. For three days our room was continuously on camera, with a tech sitting in the hall watching every movement and listening to every word. We didn’t get to do fun things like going out to eat or shopping, and the hospital had very little in their cafeteria that Amy could eat. Honestly, it was a couple of months before she’d even look at a grilled chicken breast. Unlike the last test, no seizures showed up. Just periods of slow brain waves that the neurologist couldn’t explain. They couldn’t even induce seizures with flashing lights. So, we decided to decline seizure meds, in the hope that maybe the Lyme had caused the previously documented partial seizures.
April: This month, Amy turned 27.
May: A good friend of Amy’s gave her two tickets to Les Mis in Dallas, before we found out she could no longer drive due to seizures. Amy asked me if I would go with her. Allen actually drove down with us, so that we could visit David’s family. Then he was an angel to wait in the lobby and watch on the monitor while we actually went to the show. It was a fun day. Amy loved seeing the Broadway cast of her favorite musical. We all loved spending the afternoon in the park with our grandchildren Joseph and Hannah. Joseph is changing so quickly. It’s amazing how much they change from visit to visit. We finally had our appointment with the geneticist for Amy’s EDS. Ehlers Danlos is a genetic collagen disorder. His clinical diagnosis was that she definitely has EDS. After questioning me, he also said he suspects it came from my side of the family and that I have it, too. He wanted to do genetic testing to confirm it and rule out some of the variants. Allen, Amy and I were all tested. Amy’s came back that she has none of the confirmed genes that cause EDS. That ruled out vascular, the one I was the most concerned about. They continue to research to find the gene that causes her variety. One suspected gene is one that I share with her. I strongly suspect we got this from my dad. Bibens relatives, read up on EDS. This could be something that could turn up in your family. Anyway, for now they say she has Ehlers Danlos Hyper-mobile type. This month we lost our Jack Russell Terrier, Captain Jack (Cappy). He was getting old, but it was a tough day for all of us. Lucy was especially sad without her canine pal, so we started looking for a friend. Before long, Amy, Lucy, and I drove to a rescue in Davis, Oklahoma to meet our newest family member. Minnie is a black and white mix that we found online. The lady at the rescue explained that her mother was a Rat Terrier/Shih Tzu mix and her father was a “traveling salesman”. She is very affectionate and playful. The only real problem is that she chews up and eats everything. And I mean EVERYTHING! Her latest victims have been a pair of my scissors and a chair cushion. She ate the handles off the scissors (I mean she ATE them) and she ripped open the chair cushion and ate the foam rubber. All it seemed to cause is a bounce in her step. I really worry about her, but so far, she never seems to eat anything that makes her ill. We honestly are not starving this dog. I don’t know what her problem is. Allen took his mom to Texas for his cousin’s memorial service. Even though this was very sad, he said it was good to reconnect with cousins he hadn’t seen in a long time. Allen’s mom is still at Concordia. She stays very busy. She bakes for the nursing care staff and for her friends at her dinner table. Another resident writes a Christian reflection and Mom Schones has a “paper route” where she delivers them for him. She also works as a volunteer at the little gift shop, where her plants are a popular item. This month, we also celebrated the first birthday of Amy’s kitten, Thomas. I guess I shouldn’t really call him a kitten any more. It’s just hard not to see him as the baby.
June: Our granddaughter, Hannah, celebrated her 4rd birthday in Ft. Worth. She’s changing so much! I really wish we could spend more time with her. She’s such a bright light in our lives. She is very well rounded. She loves playing soccer, ballet, gymnastics and watching the Dallas Stars. We made a quick trip down to be there for her party. This month also brought David’s 31st birthday. It’s hard to believe that my first child could possibly be so grown up and mature. As I write this letter his dissertation is written. He’s in the re-write stage and will defend it in the spring. It won’t be long before he has his PhD! In June, Allen and I built a fence in our backyard, to make a large dog run that keeps our dogs away from the pool. That’s been a real worry for me since we moved into this house. Some of you might remember when our epileptic poodle fell in our pond at the old house and drowned. They now have a whole side yard and some of the back, and I can leave them outside unattended. This was one of the requirements I had for Allen if he planned to travel more….see July. I also said he had to get a new sleep study, but that hasn’t happened yet.
July: This month Allen started traveling about half of the time. Neither of us are really thrilled about it, but it’s temporary. Hopefully, it will allow him to move to a position he’s really interested in at Tinker, in the future, so I grin and bear it. Allen and I celebrated our 34th anniversary, but unfortunately, he was in Ohio at the time. Amy didn’t feel well on the big day, so I went to see the Mr. Rogers documentary by myself. That sounds depressing, but I actually had fun. And I got butter on my popcorn.
August: Hannah started Pre-K in the Ft. Worth schools. She looks so cute and grown up in her uniform. She’s like her daddy and isn’t fond of change, but after a few rough days, she’s now loving her new school. With Allen traveling so much and all our medical trips to Texas, we had to look for a doggy day care that allows drop-ins. We found one that even has a cut rate for half days. So occasionally, our dogs go to “school”, which they seem to love. We also made a day trip to Texas to attend our grandson, Joseph’s first birthday party.
September: This month I celebrated 17 years cancer free. David and Courtney came to visit this month. We had a family birthday celebration for Joseph. He’s such a cute, little guy. He’s almost always smiling and laughing. He loves to run. He also loves Mickey Mouse, soccer and Star Wars. This month my old church camp buddies met for the weekend at St. Crispins. Allen was out of town, so I couldn’t go out and stay. I don’t like to leave Amy alone that long, for fear she’ll pass out or have a seizure. But I did go out for a few hours and it was heaven to be with them for a while. Almost like a little mini vacation. I doubt any of them realize how much that day meant to me. They are such a loving, caring, extended family for me. And it was great to see all the changes that have been made to our camp. I hardly recognized it!
October: Amy started on a new medication for her POTS, a type of dysautonomia. Her high salt, high protein and high fluid/electrolyte diet just wasn’t cutting it. She was having too many issues with her vision graying out, seeing spots and even had one time that she completely blacked out and woke up in her bathroom floor. So far, so good. The medication seems to be helping. Her only complaint is that she can only take it six days a week. If you take it every day, your body gets used to it and they have to up the dosage. Her doctor says she’s just got to suffer with they symptoms one day a week. October also brought the birthday of our daughter-in-love, Courtney. She continues to enjoy her management position at Oak Hill Advisors. She’s a wonderful mother to our adorable grands, and a fantastic partner for our son. We are lucky to have her in our family.
November: My doctor is happy with my A1C results, so I’m handling my diabetes well enough. Still no need for insulin. I did tell him that I was having a lot of trouble with my hands. My fingers hurt a lot and I’m having trouble with trigger fingers that lock up on both hands. He asked me some questions, and said he was afraid it could be rheumatoid arthritis. He sent me for anther blood test. It showed that I do have some sort of autoimmune thing going on. He wants me to see a rheumatologist, but Amy’s Lyme doctor is running some tests for me first. He told me a few months ago that he suspects that I also have Lyme. I don’t want to get steroid injections or anything, if that would make Lyme worse. Oh boy! I sure with insurance would cover Lyme treatment. I was hoping to wait until Amy was in remission before I went down this rabbit hole, but I guess God’s steering me a different direction. A nasty virus swept through the family this month. Amy and my mom even missed Thanksgiving due to it. Mom’s doctor said she went into pneumonia from it.
December: My mom continued to be sick from the virus, so she went to the minor emergency. They did an x-ray that showed she did not have pneumonia. Instead they found a questionable spot on her lung. A follow-up CT scan showed a two-inch mass. Maybe cancer? A follow-up test has them now suspecting a pericardial cyst. It could still be cancer, but the doctors don’t think so. Prayers are appreciated. God is good, and everything will turn out okay. Amy’s Lyme doctor is trying her on two weeks off all his prescriptions for her, to see how much her Lyme has improved. Fingers crossed. We are excited that OU won the Big 12 title and is Orange Bowl bound. We’ll all be watching that game the end of the month.
Allen says to mention that he’s still enjoying golf, but all the traveling cuts into his golf games. When he’s home, I’ve always got a honey do list. I’m finding his traveling gets in the way of my scrapbooking days, too. I have all his jobs to do on top of mine, when he’s away. I am still blessed to be included in a fantastic Bible Study group. They are so much support for me, and I consider them all my sisters. Speaking of “like a sister”, one of my college roommates might be moving to Norman this year. I’m so excited that we could be seeing each other more.
Our family pets include our two dogs (Lucy and Minnie), three cats (Bagheera, Figaro and Thomas) and our three birds (Bert, Mary and Tinkerbell). Minnie is still learning not to chase the cats or wrestle non-stop with her “sister”. Lucy, the pug, loves her, but isn’t into roughhousing. The older cats are still trying to acclimate to Thomas and Minnie. But we are making slow progress. Dog training is the plan for 2019. We really need help with Minnie.
Things are a little rough around the edges around here. Everything could be better, but could also be worse. We feel blessed to have good friends and wonderful family. Thank you all for your love and your prayers. Sometimes I wonder what God is trying to teach me, when some new problem creeps up. Yet, we also know that God is with us, through all our trials. Maybe next year we’ll have all kinds of positive news to share. We hope that this letter finds you and your loved ones well. Please give us a call or drop us a letter to let us know what’s happening in your lives.
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.