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

 

 

Advertisements

2017 Christmas Letter

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

IMG_20170519_172600ps
Lucy

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

IMG_0301ps
Cappy

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.

 

received_10154729927211611ps
Thomas

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

IMG_4215ps
Hannah, Nana and Paw-Paw

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

IMG_20171114_114411ps
Bagheera and Figaro

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

IMG_6234bwps
Hannah and Joeseph

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.

 

IMG_20170617_234937ps
And to all a good night!

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 SchonesAllen and Missy with Santa