blog
another day of pain
Today is physical therapy day. Argh! Have you ever had scar tissue broken up? It hurts just a wee bit up the wazoo.
And then afterwards it hurts even more. So today is a day of ice packs and rest and focus on healing and faith and blessings. I must stay in a place of gratitude or the whole plan goes out the window because then anger and sadness and hopelessness takes over.
I could get angry that I have a genetic disorder with no cure and a pretty yucky prognosis.
I could get angry at the man who ran into me when I was forty weeks pregnant and messed up my pelvis, my birth, my sex life, and my ability to have more children.
I could get angry at my body for being allergic to the one thing that can help my ligaments get stronger and the torn cartilage knit back together.
I could get angry at the pain.
I could get angry at my body for passing out at really inconvenient times.
I could get angry when my hands turn a lifeless color of grey or my feet lose all sensation for hours at a time.
I could get angry when my heartbeat shoots up to 140 and scares me to death.
I could get angry at never knowing what I will or will not be able to do on a daily basis.
I could get angry when I can’t make it through a day without spending hours in bed.
I could get angry when my nervous system goes into freak-out mode and makes me feel like I am being electrocuted from the inside out.
I could get angry at the lack of solutions there are for ANY of my issues.
I could get angry at how dang expensive all of this has been and will continue to be.
But none of that will help me get better. None of that will help me mother these precious children in love. None of that will keep me focused on God and His miraculous power to heal me. None of that will keep my heart open and my mind clear.
So I let it go. Again and again and again I let it go. It bubbles up every once in a while and I consciously focus on releasing it to God because that anger is poison. It could eat up my soul if I let it. It could drag me down to misery and take away everything I hold most dear.
I choose to focus on my blessings. First of all, I know it could be much, much worse. I could be terminally ill or have a child in excruciating pain fighting for their life. I could require round-the-clock care. I could have a husband who is impatient or apathetic. I could have children who are rebellious and hard-hearted. So, in the big picture, I am very, very blessed. I have an amazing husband, lovely children, a fabulous friendship circle, knowledge of God, parents who love me, aunts and uncles and cousins who support me from the sidelines, food to eat, trees to look at, a church family who cares about me, cute dishes to eat out of, books to read, a mind that can learn, a million other blessings that are immensely more impactful on my life than my lack of collagen and super-stretchy ligaments.
Even in the midst of this really frustrating journey I am on, I am blessed.
- I have four beautiful, amazing children. The reality is I could have none.
- I can walk. Others with Ehlers-Danlos are not walking as well as I am.
- I know all about alternative treatments and haven’t traversed the long, arduous path of repeated surgeries that don’t work with stretchy connective tissue.
- I started my journey with really strong muscles that have held me together for longer than many other people with Ehlers-Danlos.
- I am willing to try new things to get better.
- I have an absolutely amazing chiropractor (Uncle Wayne) who is walking this path with me and helping me navigate the healing process.
- I have really, really good days when nothing at all seems wrong with me and I am able to get quite a bit done on those days.
- I have older children who can do a lot of the cooking and cleaning in our home and little ones who are resilient and have been blessed to deal with having partially non-functioning mother for the past fifteen months.
- I have received numerous priesthood blessings that have given me peace and healing.
- I have been able to keep teaching gymnastics with A LOT of help from my assistants and a lot of patience on the part of my students.
- I have an amazing life. A really amazing life. A life full of love and fun and service and growth and opportunities and support and good food and laughter and hugs and faith and adventures.
I am so blessed. And so today while I am hurting I am going to choose to focus on the blessings and once again, let the anger go.
narration with peter spier
My Annesley cracks me up. She is so stinkin’ hilarious. Yesterday I had to make a DI run to dump off the stuff from the garage clean-out on Saturday (Did I tell you I cleaned the garage out? Well, yes, I did. It was a long, filthy day, but now we can walk through there without breaking a leg.) Since I was going into town, I decided I might as well return the huge pile of library books that were due last Friday and pay my $26 fine so our renewal and checkout privileges would be restored.
I was tempted by a few books and just had to bring them home for my children. One of them was Rain by Peter Sprier. I llllooovvveee Peter Sprier’s other books, Noah’s Ark and People and decided Annesley would love Rain. Peter’s books are illustrations only – there are no words. Last night I showed it to Annesley and asked her if she would like to tell me the story. She was so excited and pored over the book until bedtime. This morning she asked me if I was ready for her story. I quickly hit record on the iPad (she didn’t know what I was doing) and she proceeded to tell me her creation for the next ten minutes. She told her story in a rhyming, sing-songy voice, but her words didn’t rhyme at all. She repeated the phrase “Oh, No! What will we do?” on almost every page. She talked about all the animals and the umbrella and the brother and sister and how the sister had to protect her brother because she was six and he was four. Her whole story cracked me up, but I was able to keep a straight face and listen while she turned the pages. When she finished her adventurous narration, I hit play and her face lit up as she realized she had been recorded. She listened to her story and giggled the whole time saying things like “Did I really say that?” and “That was FUNNY!”
I love learning with my children. I love being part of their discoveries and creations. I especially love sharing books with them while we snuggle up together.
lawrence’s turn
Today is a banner day. Today my sweetie is going to the temple to perform the ordinances for my great-grandfather. This man, Lawrence Saylor, died in 1918 of a brain tumer while his wife, Sallie, was pregnant with their ninth child. Sallie was the first person I ever found in my father’s family over a year ago when I started my genealogy research. I immediately fell in love with Sallie and have branched almost all my research off of her. She raised seven boys and one daughter without her husband (their oldest child, a daughter, was married at sixteen and out of the house before Lawrence died) with lots of laughter and hard work. She took in washing and mending and cleaned houses for years to support her large family.
Sallie lived for thirty years without her husband. I am so in love with and incredibly dependent on my sweetie that the thought of being without him for any length of time much less thirty years brings me great pain. All of Sallie’s and Lawrence’s children are dead except for that youngest child who was born after her father died. I found her thanks to the magic of the internet and called her up one day back in April 2012. I asked her all about Sallie. She didn’t have any idea who I was because my father left home as a boy and didn’t have much contact with his family after that, but she was still willing to talk to me and share stories of Sallie which is probably why I love Sallie so much – she is one of the few people in this whole line of ancestors that I know anything about.
And now her husband, Lawrence, will have the opportunity to make covenants with his Heavenly Father. I hope he accepts them and that his family will be able to be united forever.
What a privilege this family history experience is!
puppies
Sadie gave birth to five puppies last Thursday. This is her smallest litter yet and it seems much more manageable than her 2011 litter of nine. There is one brown one, one black one, and three yellow. The males win out this time with four boys and one girl. They were born in Keziah’s room and have kept her up all night ever since. Sadie is a wonderful mother and takes care of them, but squealing puppies make such a ruckus it is difficult to sleep through. Nevertheless, Keziah is in love with them and wants to keep them all, espcecially the little female. However, she is out of luck. We are a one-dog family (at least I am a one-dog mama) and we are not going to venture down the path of two dogs anytime soon.
When some friends took my little ones to the lake on my birthday I decided to use the unfettered time to clean my room and boy, howdy, did I find some treasures. One of them being my battery charger, which I promptly used to charge my camera batteries so I could take some pictures of these little cutie pies.
This is the female that Keziah loves so much. She spends as much time in Keziah’s arms as she does with her litter mates.
Puppies will be available June 27th. If you want one, put your dibs in now. We want them to go to families who will love them and it is always fun for them to go to people we know so we can watch them grow up!
some recent book treasures
My mom recently surprised Fisher with There Was A Coyote Who Swallowed A Flea and he can’t put it down. He reads it over and over and giggles the whole time. It is written in the same style as There Was An Old Woman Who Swallowed A Fly, but it is much more hilarious. Fisher’s favorite parts are when the coyote swallows the cactus…sideways…and when he swallows the moon. Every single time he gets to those pages he curls up in a ball and shakes uncontrollably in fits of laughter.
I taught a class this semester on Jewish Festivals and loved sharing my passion for all things Jewish-y. I checked out gobs of books from the library and found a few gems. Jewish Fairy Tale Feasts: A Literary Cookbook is SO fun. Not only are the stories charming, the illustrations are delightful and the recipes look delicious.
The book is constructed to share a folk tale type of story and then teach how to make one of the traditional festival foods, like challah, hamantaschen, latkes, or noodle kugel. I think any family interested in different cultures would swoon over this book. I can’t wait to buy it for myself!
We had a road trip last week and listened to The Wonderful Wizard of Oz with Anne Hathaway reading. Oh my. What a delight. Her voices for each character were phenomenal and we loved it so much we listened to it two times all the way through! I guess my little ones are ready for a journey into Oz. The last time I visited was when Blythe was about six and we read all the Oz books over the course of a year. Here is a really fun YouTube video of Anne discussing this performance…so fun to see her reading the story!
I am currently reading Frankenstein for my colloquia group. My dear friend, Kate, recommended it to me several years ago and I am finally taking her up on the suggestion and having my whole discussion group read it. I thought I knew the story, but I totally didn’t. It is SO much more thought provoking than I ever imagined. I cannot stop thinking about creation and my responsibilities as a creator, treating people as children of God vs. treating them as irritants or even worse as monsters, the power of the atonement to make things right, judging a person by their outward appearance, and good vs. evil.
What are you reading right now?
thirty-nine
Today I am thirty-nine years old. That feels like an awfully long time to be alive on this earth, but I still feel like a little girl in so many ways that it must not be that long at all. Or maybe I will always feel like a little girl even when I am kickin’ 100. I fully plan to live to be 100, you know.
I love my birthday. I love the cards and presents and hugs and joy and newness of a new year. I love celebrating and wish I was at the park right now with five gazillion of my friends.
Instead I am having a quiet day at home. Jess and Amy came over and brought me birthday lunch – Gator Bites and Moosetracks, my favorites! Now I am taking care of Sadie and washing dishes and mopping the floor. My children are all gone. Blythe is applying make-up on the actors for tonight’s debut of Two Gentlemen of Verona put on by iFamily’s iShakespeare Live acting troupe. Keziah is on her way home from the other side of the state where she has been visiting cousins the past few days. Fisher and Annes are at the lake (sans water) with friends playing in the dirt and looking for critters.
I am at the stage of my life where daily sacrifice is necessary for my home to run well. Sometimes it feels good, sometimes it is so normal I don’t even notice I am sacrificing – I have been doing it for so long it has become part of who I am, and sometimes it bothers me. My new goal for this year is to sacrifice for my family more often and more joyfully. I want to not begrudge them their joys. They have been taking care of me for what seems like forever and it is time I take care of them more completely and with more happiness while I do so.
My birthday gift to myself (I fully believe in giving myself a birthday present!) is to do 39 things to make a difference in the world. One of those 39 things will be to donate to Jessica’s birthday gift to herself – a project to provide clean drinking water. Another one will be a big act of service for my sweetie and each of our children. That leaves 33 acts of kindness for me to do for the greater world. I am not going to be my crazy self and try to get them all done today. I am giving myself the whole month of May to do these 39 things.
Want to join me? I would love to hear about your 39 things.
passing out is for the birds
It seems the passing out is not over yet. Two weeks ago I passed out six times on our date. This weekend on our trip to Kuna I passed out twice. I would love to understand exactly what is going on. I feel perfectly fine today and at this moment passing out seems like it will never happen again.
But I keep thinking that. And it keeps happening. So who knows?
new little ones
Thursday we had five puppies born. Saturday we drove to Kuna to meet Sandy’s (R’s sister) new baby and attend his baby blessing. Today all our caterpillars are safely tucked away in their chrysalises and will be emerging as butterflies in a few days. A few of our trees are covered in buds and I am sure the rest will be getting buds soon. Spring and newness and life are everywhere.
I love this time of year of rebirth and renewal.
Tomorrow is my birthday. 39 years spent on this earth. 39 years of learning and growing and messing up and learning some more. I am thinking of those years and how I want the next 39 years to be.
And yes, I will post pictures of these cute puppies and Sandy’s new baby as soon as I have them. My camera batteries are dead, boo-hoo.
my poor hip
So, about six weeks ago (or was it longer?) I had a spiritual prompting to seek the advice and/or care of a physical therapist. I was a wee bit shocked at this prompting because physical therapists are known to really mess up both labral tears and people with connective tissue disorders because they apply their normal hip techniques and those things just don’t work for those of us in the super-stretchy club. So, I started researching and asking questions and trying to figure out who I would trust with my hip. I finally found a therapist I felt good about and we started emailing back and forth. I really liked what he wrote to me – he answered all my questions and seemed to have an excellent grasp of Ehlers-Danlos and what he could and could not do to help me.
So, I scheduled an appointment for his first opening on the 15th of May and requested they call me if there was a cancellation. Last week they called and I shouted with glee at my bounteous blessings.
My first appointment was nothing like I expected. I thought he would have me doing exercises and range of motion stuff. Instead he put his hand down my pants and worked on the soft tissue surrounding my hip socket.
Boy howdy, was that painful. I didn’t scream or anything, but I did wince. A lot. He found tons of scar tissue. He quickly discovered my ovary is surrounded by it and is adhered to my pelvic wall. He found my pubic bone recessed and tilted and giving no support to my hip socket. My sacrum was way too tight and hip socket was WAY too loose (no surprise there since it can dislocate when I roll over in bed). So he worked on all those things and helped them manuever back into their correct places.
I had to carry ice packs around with me for the rest of the day to help with the inflammation, but was doing much better by the next day. Still sore, but I didn’t need ice packs.
Fast forward to today’s appointment. This time I screamed. He worked on my ovary again to loosen the adhesions to the pelvic wall. Super painful. He worked on the inguinal ligament and I about died. Then he worked on the pubic bone and this is when I screamed. It was sticking up and getting in the way of my hip’s rotation. So, he decided to push it back into place with lots of pressure and contortions of my leg. Oh, my. I needed a friend there to hold my hand. Then he worked on the adductor muscles to help the pubic symphysis stay in place.
He told me to get an SI belt and now one is on its way to my house. He also really wants to figure out a way for me to get more prolozone injections, minus the procaine, of course. I don’t know what to think of that idea. Part of me is scared to death of ever having a seizure again and part of me knows I have to figure out a way to give this hip more stability and the only way anyone knows how to do that is with prolozone. So, I am doing more research and evaluating all the different cocktails that are out there.
Jeremy, the physical therapist, feels strongly that all this damage in my hip is from the car accident I had at 40 weeks pregnant with Fisher. My pubic symphysis snapped at that time and my uterine ligaments tore and my pelvis has been in terrible shape ever since, but until this labral tear injury I really believed I was okay. God worked a mighty big miracle to get Annesley here and while I have always known that, I am coming to see His power more and more as we delve further into the sad shape of my anatomy.
I spent the afternoon icing my abdomen and hip while doing math with Kez and Fisher and tonight I felt well enough to drive the girls to ballet. I will ice again here in a little bit and then hope to be up and out of bed tomorrow.
I wish we had some magic laser technology that could go inside me and clean up all the scar tissue, tighten the ligaments, put all the bones where they go, and then wrap it all up in happy juice so I could go back to my active life. Until then I will keep trying to figure out how to heal this crazy hip.
three more are off
On Sunday we attended three missionary farewells. Three! Two of them are Worldviews students from last year and one of them is the oldest brother (of 10!) of one of our favorite families. I still can’t believe we are to this stage of life when our children’s friends are leaving home. I will miss these youth so, so much.
Another of my Worldviews students leaves in six short weeks. She will be serving her mission in California. I am grateful for the year I had to spend with these students studying various religions, cultures, and perspectives that are different from our own. I think it will be quite helpful to them on their missions and throughout their lives.
After the three farewells, two of the boys hosted a huge get-together for their friends and family and even though the wind was ferocious and the temperatures were a little too cold to be comfortable, we had a wonderful time feasting on delicious food and precious friendships.
Dustin on the left – going to Guatemala and Morgan on the right (going to Peru).
Annesley and Fisher having fun on the tire swing.
Annes poking people with her super-long stick.
Group hug with lots of sad faces over how much we will miss these awesome boys.
Lots more smiles this time around.
Goodbye Elders…serve well.
I'm Tracy, a mama with big dreams, crazy ideas, loads of laughter, an insatiable desire to learn, and enormous piles of laundry.
