2018 Christmas Letter

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.

Much love, Missy, Allen and Amy Schones