blog
first day at the lake
A day at the lake watching my little ones run and swim and giggle is exactly what I needed today. I have been working non-stop on my new website and the iFamily schedule and website all week. Today we took advantage of the sun and windless skies to go to the lake for the first time of the summer.
And it was perfect.
They played on our one working inner tube, built sandcastles, searched for frogs and snakes, swam underwater, and ran around like little children without a care in the world. Just like they should.
I laid in my chair and read a book and smiled as I watched them squeal with delight.
Oh, I love mothering!
p.s. Yes, a post about trek is coming. Yes, my jaw is improving. Yes, I am doing well this week. Yes, I will be at the reunion…these are all for my dear mama who keeps asking me, but doesn’t want to pester me. Love you mama…see you in a few days.
loveliness on a summer morn
Oh my, ten days without posting. Besides the fact (haha) that you are missing my words, it is entirely unhealthy for me to go that long without processing my thoughts through writing. Note to self: for a healthier psyche, write, write, write.
The sun is shining through my eastern window, filling my bedroom with fresh morning light. The sky is a radiant blue. The trees are full of cotton, which normally blows all around our yard like a soft-summer snowstorm, but this morning, in the stillness, the cotton hangs in the trees waiting for a breeze to release it. I hear the sprinklers shooting water all over the lawn, the chitch-chitch-chitch sounds of the rotating heads bringing order to my morning.
And all of this brings me hope. The morning comes. A new week is here with the promise of possibility. A clean slate waiting to be written upon.
This week I have a few goals.
- Remember to be a fun mom.
- Smile…a whole lot.
- Get outside every single day. I can’t even tell you how many days I have spent living in this house. In this bedroom. I need to soak the summer air into my soul.
- Figure out what classes I am teaching at iFamily (or not!)
- Make the iFamily schedule.
- Get the iFamily website done.
- Get my new business website done.
- Start a new read-aloud with Fisher and Annes…yes, we finally finished Hanne!
- Make a decision about gymnastics for this fall.
- Get my bedroom clean.
- Get Richard’s summer special for SimplyHealed on his website.
- Spend an hour every morning doing genealogy.
- Organize my new school basket with Fisher’s and Annesley’s daily learning materials.
- Spread joy.
- Introduce our Happy Jar.
- Rearrange and give the upstairs living areas a deep (overdue) spring cleaning.
- Finish reading My Name Used To Be Muhammed
- Find a location to hold my new classes on How To Talk So Kids Will Listen and Listen So Kids Will Talk.
My jaw is improving, I can eat soft foods instead of drinking everything. Talking doesn’t hurt as much as it did a few weeks ago. Smiling is still pretty painful and laughter really hurts, but I will gladly take this over the condition it was in three weeks ago. My ankle is improving, still taped, and still limping a bit, but it is not hurting as much. If no other injuries happen, I will be able to start riding my awesome Elliptigo in the next few weeks.
Blessings abound.
drat it all, i scare people
We had a frustrating, disappointing, hilarious, and a lil’ bit crazy day yesterday when I went to Dr. Guinn to get an expert opinion on my jaw.
He decided he wouldn’t treat me as there are vagus nerve issues involved and instead recommended I go to the emergency room. He wants me to see a neurologist, but recommended the emergency room as my first stop, saying “They’ll know what to do with you.” He actually asked if I have a death wish and want my children to be raised without a mother.
Oh my word.
At the time I couldn’t decide whether to explode in any angry diatribe or laugh hysterically. I did a little of both after we left the office.
Now that I have had a day to think about it, I feel compassion for the poor man. He was probably scared out of his mind that I would pass out right there in his office and somehow die from his dental exam.
After a delicious milk shake at Smash Burger with Richard, Jessica, Kat, Tami, my sister Mikelle, and my mama and phone calls to my dentist and PT, I was able to calm down and start to think through my options.
I have researched neurologists, geneticists, and all sorts of other ists all day long and don’t see any good solutions. There are some excellent EDS doctors out there, but oh, my goodness, there are long 12 – 18 month waiting lists and long distance travel to Maryland, Illinios, Texas, or Seattle are involved.
We have some big decisions in front of us and it doesn’t look like my jaw OR vagus issues will be resolved anytime soon.
almost gave up
I almost gave up today.
Really.
Emotional-wise, physical-wise, mental-wise, I was done.
Spiritual-wise not done, but there just wasn’t enough gas in the other areas to really make up the difference.
I felt myself letting go of the will to keep on trying.
And then I looked at Annesley. And then I looked at Fisher. And then I looked at Blythe. (I would have looked at Keziah, but she has started her nanny job for the summer so she wasn’t with us.) And I decided that for them I will keep on trying.
They have no idea how hard this is. They have no idea how much pain I am in. They simply need a mother who loves them and I am determined to be that mother.
I used to think the pain in my hip was bad and believe me it was. At the height of the labral tear pain I would moan and wince and cry and really could not imagine anything worse.
This probably isn’t worse…but it is longer. And it is more. One or both of my feet have been aching for nearly a year. My hip still hurts, not as intensely as at first, but everyday it cries out in agony of some kind or another. Since the May 2 fall, my shoulder, ribs, and neck have hurt. And on top of all that my gums, jaw, ears, teeth – basically my whole skull are in constant pain. Sometimes I think I will lose my mind.
Today was one of those days. I had an incredibly frustrating appointment with a different PT to get a 2nd opinion and it turned out terrible. He didn’t really understand the laxity issues or the severity of the vagus nerve situation and gave me all sorts of bad advice. I felt unsafe and unheard and more than a little unknown. Screaming would have been my (ineffective) solution, but my mouth won’t open wide enough for me to scream, so even that good old fallback is out for now.
Instead, I let Blythe drive us around town for a visit to the library, some 1/2 price slushies, and a few minutes play at the park. We listened to Igraine the Brave, one of our favorite audio books, and I tried to focus on just being with my children. Just being their mom. Not a patient. Not an in-pain person. Not a woman with big challenges facing her. Just. their. mom.
Man, I love those kiddos. They are worth whatever I have to do to get functioning again.
Tomorrow I see Jeremy and he will put my foot back together again and have some calming words to soothe my soul. Until then I will sip on the delicious roasted red pepper soup Sherry brought tonight and count my many blessings, name them one by one.
best catch of my life
We always like to go out on a date on June 7 to commemorate our first date back in 1993. Instead I have spent the day in bed and Richard has spent the day at work. I am pretty bummed to be spending this evening alone. But I am not up to an out-of-the-house date. My foot is pretty tender from the fall in the hidden hole on Monday and I am trying to rest it as much as possible to help its healing be speedy (haha, is anything speedy with my healing?) and my whole head is miserable. My teeth ache and feel like they are falling out. My jaw feels like it is in a vice grip and my head feels like it has a football helmet on that is 48 sizes to small.
I certainly don’t want to get fancied up and since I can’t eat anything but pureed liquids, we are a bit limited on our restaurant choices. So I told my sweetie to go fishing. He needs a night on the river so he can clear his mind of the jaw situation for a few hours. The water lapping the shore and the casting back and forth fills his soul with calmness, patience, and strength…all of which we are going to need in the days to come, so I told him to go and not feel bad about it being June 7, just go and soak up a river of courage.
Back on that first June 7, I asked him to take me fishing knowing full well the weather was bad and it was getting late in the day. He asked if there was any way he could take me to a movie and dinner instead and take me fishing the next time we had the night off. Yes sir, that is just what I was hoping for! I often tell him that instead of catching fish that night, we caught each other…best catch of our lives.
My cousin Melissa was at Swim Camp with me and one day during one of my many crying fests over the whole jaw situation she said something like “Tracy, you may feel flawed and like you’re not mothering the way you wish, but you nailed the most important decision of your life in who to marry. You are giving your children a priceless gift – they get to experience a loving, beautiful, faithful, and faith-filled marriage. What a gift!” She is right. I am terribly flawed and I struggle so much with simple kindness, but my marriage is one thing I did right. God led me right to this amazing man and with a heart full of faith I allowed myself to trust that marriage really could last forever and be full of love, safety, and oneness. It took me a few years of marriage to be fully convinced that marriage could be good and a few more years for my wounded heart to be healed, but from the first moment I met him I followed the Spirit and let God lead me into sacred covenants with this good, good man.
I could have married a crazy high school boyfriend who was full of manipulation, abuse, and all sorts of psycho-mumbo-jumbo. I easily could have married my Baptist best friend, but it would have meant leaving my religion and joining his and though I loved him with my whole heart, I couldn’t bring myself to walk away from my testimony. Instead I walked away from a full-ride scholarship to the college he was attending so I wouldn’t be near him anymore. It was too painful to care for someone so deeply and not be united in faith together. I always hoped to marry another dear friend who left on a mission for our church that summer. And a HUGE part of me decided to never marry anyone. My walls were several feet thick and I was determined to keep them that way so my heart would never break again. I had already decided at that tender age of nineteen that no man would ever hurt me again. No man would ever tell me what to do and get away with it. No man would rape me, boss me, hit me, and live to see the light of day. I was angry and damaged and had little desire to change. But I had also made baptismal covenants with my Heavenly Father. I had decided as a young girl to get married in the Salt Lake Temple. I knew God loved me and had a plan for me and deep down inside I wanted to trust Him, but I didn’t know how to let down my walls.
Then God gave me Richard. The instant I saw him I knew I would marry him. I can’t describe the serenity and stability I felt in his presence…kind of like being wrapped up in a blanket of warmth and safety in the most loving embrace imaginable.
I trusted that feeling. But I still had to fight the demons of fear and anger and walls and grief. I had to decide that I believed a marriage didn’t have to end in divorce, that all men didn’t cheat on their wives, that all men wouldn’t hit their wives, that the song “Families Can Be Together Forever” wasn’t just a fairytale. It took years for those demons to finally be slayed. God walked with me every step of the way and Richard’s pervasive goodness taught me what love really looks like.
Melissa is right. The one thing that really matters and makes all the difference is my marriage to Richard. I cannot imagine going through this life, and especially these physical challenges without him by my side.
p.s. He just called – he is off the river and bringing some curry home to share with me. Happy first date sweetheart.
heal vagus heal
So much has happened since I last posted over two weeks ago.
So much.
First, we had a wonderful surprise birthday event for my mom in Salt Lake. My little brother flew in for her birthday and when she saw him she fell into his arms and sobbed tears of joy. Her heart filled up with piles of healing – I’m so glad I got to be part of this miracle for her.
Second, we have been selling the puppies and just tonight we found the right family for the last little cutie.
Third, last week my friend Sheri’s brother-in-law committed suicide. Our group of friends are working hard to support one another and let the Savior heal our hearts. It has been such a hard week for everyone involved.
Fourth, in spite of falling on the first night, reinjuring my right foot we just spent the past 4 months healing, and having a whole mortifying passing out/shaking/urinating episode in the middle of the campground, we survived Swim Camp and are now home rubbing Miracle Salve all over our burned faces. I am hoping to get a whole post written about our 2014 Swim Camp adventures, but I can’t guarantee anything as my body is really struggling.
And now for the update I’m sure you are all waiting for…how is the jaw doing?
Can I just avoid the whole topic and pretend that everything is fine? Can I somehow convince you (and me) that I am not scared out of my gourd?
Nope. It’s time to commit the words to paper (or screen) and face the new situation we are facing.
ARGH. I don’t know if I can face it.
Okay. Here is the deal. I have been passing out and have shaking/seizure episodes for 18 months now. These have been mostly caused by irritation/damage to the femoral nerve in my hip. It sends out a panic message like “Help, help, I am being squeezed by the pubic bone/hip socket/adductors and I don’t like it one little bit!” The message goes out like a lightening bolt to the rest of my body which sends my heart rate skyrocketing and the vagus nerve responds by shutting everything down which results in the passing out and shaking. The vagus tries to reset everything much like turning off your computer can make all the frozen/malfunctioning programs start fresh. The reset process usually takes 1-3 hours and then I am good to go again.
Well. Everything has changed. The vagus nerve runs through the jaw and is now being directly irritated by my jaw dislocation issues. So instead of just responding to the femoral nerve’s cries for help, the vagus is now sending out its own panic messages. The vagus is the power cord for almost all the body’s main functions – heart, breathing, and digestion to name a few. I have all sorts of new symptoms showing the vagus is in distress. The passing out and heart rate episodes have greatly increased over the past several weeks – there have been over 20 episodes since the May 2 fall. I feel nauseated whenever an episode occurs. Additionally, I have been burping, choking, yawning, and gagging. Swallowing my own saliva without consciously thinking about it brings on a several minute choking situation. My food sits in the esophagus for hours, then sits in my stomach for many, many more hours. I rarely feel hungry. And I can’t stop shaking.
Jeremy is quite concerned and now that I understand his concerns, I am concerned (scared silly may be a more accurate term) as well because this is looking quite bleak.
The vagus nerve can become hypersensitive by being irritated/stretched/trapped for too long. No one knows how long is too long, but when it does happen, it seems to be permanent. I believe in a God of miracles and absolutely know He can fix it, but according to the medical literature, vagus nerve hypersensitivity has no fix. The body functions it is in charge of either stop working altogether or they work in chaos…heart rate all over the place, digestion being super slow or ineffective, losing the ability to speak, or control breathing. And all of this causes regular passing out and shaking episodes so the body can reset.
Oh my. My brain is full of all of this new information and is desperately trying to come up with a solution, but it can’t so it just keeps going around and around in circles.
The next step is to go see Dr. Guinn in Salt Lake City next week and have a cat scan done of my jaw. Then we will know a lot more about its condition and what we can do to get it to stay in the correct mechanical position. We will learn how many thousands of dollars it will cost and how frequently I will need to travel the 3+ hours to Utah to attend appointments with Dr. Guinn.
And then we hope that the time it takes to get into the correct mechanical position is short enough that the nerve is not damaged beyond repair. It’s a lot of ifs and a lot of hoping.
Please pray. Please pray that the vagus nerve will recover from the damage it is experiencing right now while my jaw is not working properly. Please pray that the nerve will be protected from hypersensitity. Please pray for my peace of mind. Please pray for my heart to give this all to God and trust in His power. Please pray for my children’s spirits to be filled with faith in Him and patience with me. Please pray for my Richard. He is carrying a heavy load and though he is manning it well, I know he needs bouyed up.
To all of you have been praying, thank you. Thank you with every cell of my body. There is no magic wand to make me all better, but there is the power and love of God and that is a bajillion times better.
some leave, mine is staying put
A few weeks ago, one of the moms at gymnastics asked if her grandchild could start attending gym as she would be living with her for the next while. I readily assured her that we would love to have her granddaughter join us for the last few weeks of class.
At some point in the day, I asked her how long they would be living with her, figuring it was a temporary moving/house building/in between jobs situation. She started crying and said, “I don’t know, maybe forever. My daughter’s husband has decided he doesn’t want to take care of a sick wife anymore. He says he didn’t sign up for that and after three years, he is done. So our daughter and her children are coming to live with us and we will take care of her and our grandchildren and try to give all of them the love and security they need while trying to help her get better.”
Oh my.
My heart nearly stopped.
I couldn’t believe what I was hearing. I didn’t want to believe it. To face the fact that a so-called Christian man who had made sacred covenants to God and his wife was walking away from those covenants, his wife and their children because her body had stopped working properly was far too painful for me to believe. I burst into tears.
This mama gave me a big hug and said “Your husband is so wonderful, be so grateful for him.”
Oh my.
Yes.
My heart welled up with love and gratitude and fierce devotion to this man I have been blessed with. He has always had a hard road to travel as my husband – I am loud and crazy and spontaneous and emotional and stubborn and opinionated and not very good at wifehood or housekeeping or cooking or matching socks or sticking to a plan or even making a plan. He is calm and stable and methodical and patient and forgiving.
And now my poor body takes so much of our time and money and brain cells. He works two jobs, is gone long, long hours six days a week, comes home and cooks and cleans and plays Monopoly and tries to do a little bit in the yard. He does almost all the grocery shopping. He is ready to come to me when I pass out. He rubs my sore muscles and listens to me complain. He doesn’t balk when I need another new brace or shoes or tape or protein powder or anything. He tells me I am beautiful when I have gained 30 pounds, don’t fit into most of my clothes, and hardly ever do my hair. He sees me as loving and patient and courageous and fun when I see myself as grumpy and weak and pretty miserable to be around. He has yet to be frustrated with me for being so broken.
He is amazing. Absolutely and completely amazing. And I am blessed to have him walk this journey with me.
I wish I could clone him and give him to every suffering woman in the world. I think it would change everything.
tmj pain is no fun at all
Lots of people regularly tell me how chipper I am about this whole EDS thing. Well, I don’t feel so chipper today. My face is turning into a shriveled up prune from all the pain my head is in and while I am not giving up by any means, I am questioning how much longer I can do this and stay sane. I have a new homeopathic pain killer I am going to try tonight and if it doesn’t help, I may need to resort to ibuprofen. I react badly to meds and switched from the allopathic world to the herbal/oil/homeopathic world years ago. Also, I don’t like taking painkillers for my hip or foot because I think the pain sensations are great indicators to tell me what those joints should and should not do, but this pain seems pointless.
When I fell 2 1/2 weeks ago, I was mostly worried about my feet and hip. That is where the pain was. By that night, my ribs, neck, back, and shoulders were of far greater concern to me, but I kept thinking they were bruised and sore and would get better soon. Then Jeremy found all the ribs shifted out of place and the cervical vertebrae shoved forward and all sorts of other problems. I have been in five times since the fall and while he keeps assuring me we are making progress, I am feeling pretty discouraged. My jaw aches something fierce – every swallow, chew, yawn, or turn of the neck hurts the TMJ area and sends pain up and over my eyebrows, then around my head. I never get headaches and now that they are a constant reality, I think I may lose my mind. My head feels like it weighs 20 pounds and needs to be whacked off so I can get some rest from hauling it around.
I have decided I can no longer chew. It hurts too much to open and close my mouth and it seems everytime I eat something else starts popping or clanking around in there. So, we are going to try out a liquid diet for a bit and see if we can get these muscles to relax. Preparing food is NOT my forte and the thought of eating smoothies, however delicious, 24/7 seems a bit repulsive to me, but Kat, my food guru, insists she will hold my hand and help me come up with some creative and delicious options including a variety of soups, bone broths, and curry.
I know it’s a bit of a downer to read these endless rants. For those of you who are sticking around, thank you. It’s nice to not be alone, but boy, howdy, I feel for you. Your patience levels with my complaining deserve a gold star.
In other news, we are gearing up for Swim Camp, trying to keep the transplanted grass from Kat’s yard alive (she dug up 2200 sq. ft. of her lawn to build her new garden), playing with our seven adorable puppies and one little kitten, grading WUBA papers, learning my duties in my new church calling in the Stake Primary, reading The Red Keep for family read-aloud, and working to stay close and connected as a family. I’ll try to have Blythe take some photos of these cute puppies tomorrow.
I’ve been drinking my Great Lakes Collagen for the past few days in my smoothies and herbal tea. It dissolves well and seems to be tasteless. I don’t even notice it which is super convenient for my extra-sensitive gag reflex. As soon as my shoulders are working well, I will make some fruit snacks with the gelatin. Last night Richard put it in some Yogi Cocoa Spice tea and it was delicious. I think this will need to be my new nightly ritual!
If you have any great liquid diet ideas, PLEASE send them my way STAT. This jaw needs a break.
Brochure
(Happy [late] birthday Trace. Let me know if I got anything wrong; you can click to embiggen. I have a printable version so you can carry copies in your purse to hand out as needed. Ha. xoxo, J.)
the saga of the attacking springboard
In the midst of all this Four Bucks To Change The World craziness, I am still trying to recover from my most recent injury. Do you remember when a springboard landed on me and then I fell down on top of it two weeks ago? Well, it has been a painful two weeks. A fun, wonderful, exciting two weeks, but a thoroughly painful two weeks.
My ribs and neck and shoulders hurt. And I am tired of them hurting. I am tired of having to think about them hurting. I am tired of having to go to PT twice a week to get them to stop hurting. It hurts to move my arms, breathe, roll over in bed, lay on my back, get dressed, laugh, move my head, chew, and open my mouth. It nearly killed me to kneel at the computer and work on all the video and blog posts for my 40th Birthday Project. I haven’t been driving these past two weeks, but I tried it yesterday for a quick jaunt to the park with Fish and Annes which was okay-ish. But today’s drive into town was painful as all get out. I am going to lie on my life-changing, giant back-sized ice pack and see if I can get these muscles to ccccaaaalllllmmmmm down.
Another set of strange post-fall symptoms is belching, yawning, reflux, and hiccups. Lots of all of them. I do not burp…really, it is such a rare thing for me…and now I am letting out these 12-year-old boy contest winning burps. And the yawns, oh my heck, they are non-stop. We think this is all being caused by the vagus nerve either being pinched or being in spasm. Getting it to stop is a high priority for me, but not so high for Jeremy…he says we will get there, but the other structures need attention first.
Jeremy thinks I will be better in four more weeks, maybe as little as two, but probably four. Two sounds good to me and is what I keep telling myself, but I have geared up for four in case it takes that long.
These injuries must end. I need some non-injured time to build some muscles and dang it all, that time is supposed to be right now (said with foot stamping the ground). Four big injuries this year so far is four too many! Right? I am SO motivated to build some muscles, but I can only do that if there isn’t a current injury.
So I wait and hurt and try to remember to take all my supplements and drink my water and eat good food. Speaking of good food, I finally ordered some Great Lakes Collagen and Great Lakes Gelatin. This weekend we will be making fruit snacks with the gelatin and I am going to be taking a tablespoon of the collagen every morning and night in my smoothie or peppermint tea or something other beverage-y thing. Do any of the use these? If so, what are your favorite ways to get it in you? Recipes?
I'm Tracy, a mama with big dreams, crazy ideas, loads of laughter, an insatiable desire to learn, and enormous piles of laundry.
