I have an affinity for weird-looking plants and animals. Moose? I love their big, fat noses and crazy antlers (although they’re also terrifying when you see one close-up!). Penguins, their amusing waddling. Walruses: their hysterical mustaches, although, again, terrifying up close. hahaha.
And there are so many amazing, weird plants out there.
One such weird, fascinating plant is the Utah Juniper Tree.
A juniper tree at “Hell’s Half Acre” near Blackfoot, Idaho.
When I lived in Southeast Idaho, I spent a lot of time driving between there and everywhere else, including Utah and California. Near Blackfoot, Idaho, there is a large volcanic scar that runs along the highway for a time. I love the look of the green or brown (depending on the season) grass and other plants against the black rock. But I was always fascinated by the gnarled trees that jut out at odd angles straight from the rock, even on cliff faces. I wondered how the trees survive. I couldn’t see any kind of soil. There’s a rest stop that has some walking trails and I stopped once to check it out and discovered the trees are Utah Junipers. They are native throughout Southern Idaho, Colorado, Northern Idaho and some parts of Southern California–but mostly found in Utah.
They’re the trees of the high desert.
Not much can survive the arid, harsh conditions of the high desert–yet, here, the Utah Juniper thrives. It grows slowly, so slowly. A tree can be hundreds of years old, but less than 25 feet tall. But its height, or lack thereof, is not what makes it interesting to me.
The wind whips and whirls almost constantly along the rocky, dry earth, shaping the juniper trees into gnarled, twisted, and distinctive formations. Yet, the perpetually blowing wind of the Western Desert does not destroy the tree. It hardens it, weathers it, and shapes it. The experiences of the Utah Juniper’s life make it unique, beautiful, and strong.
Life in the high desert is not easy for plants. Such arid conditions leave the rocky surface riddled with dead, dried grasses–remnants of a spring thaw long past. Most plants burn up and wither away within one season. And yet, here lies the Juniper tree surviving–thriving even–slowly building itself up year after year, inch after inch, to reach its full potential sometimes for 750 years or longer. Giving itself the grace to grow whatever it can grow, however it can grow, with the resources it has.
Its roots grow stronger and deeper each year as it finds nourishment in the rocky ground in which it grows. A tree may be 15 feet tall, but the main tap roots can be 40 feet deep into the rock, with lateral roots growing out 100 feet away from the tree. The root system often accounts for 2/3 of the total tree mass. Because the roots are so hardy, even when the wind knocks the tree over, it will continue to grow. No matter the intensity of the burdens of the weather, it continues to cling to the sides of mountains, to cliffs, to life, and keeps growing. They are patient in their perseverance.
The tree also sustains life around it, providing food and shelter for birds and small animals. It takes the harshness of the environment and turns it into something life-giving for all those around it.
These fascinating trees and their determination to cling to life make me feel so hopeful.
“Hope in a gospel sense is hope in Christ. And hope in Christ simply means that we trust Him and we trust in our Heavenly Father’s plan.”
“Therefore, hope is expectation, even anticipation for happiness not only in the hereafter, but an expectation that we can have joy and contentment right now, regardless of our circumstances.”
She continued, “Waiting can mean being stifled, biding one’s time, or stopping. “But to ‘wait upon the Lord’ is not biding one’s time. It is being patient while moving forward with confidence, faith, and trust in the Lord’s plan for us.”
The Lord, at times, gives personalized and tailor-made challenges designed to help His children grow.”
“Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear….
Hope is not knowledge,17 but rather the abiding trust that the Lord will fulfill His promise to us. It is confidence that if we live according to God’s laws and the words of His prophets now, we will receive desired blessings in the future.18 It is believing and expecting that our prayers will be answered. It is manifest in confidence, optimism, enthusiasm, and patient perseverance.”
The things we hope for are often future events. … No matter how bleak the chapter of our lives may look today, because of the life and sacrifice of Jesus Christ, we may hope and be assured that the ending of the book of our lives will exceed our grandest expectations. …
The things we hope in sustain us during our daily walk. They uphold us through trials, temptations, and sorrow. Everyone has experienced discouragement and difficulty. Indeed, there are times when the darkness may seem unbearable. It is in these times that the divine principles of the restored gospel we hope in can uphold us and carry us until, once again, we walk in the light.
We hope in Jesus the Christ, in the goodness of God, in the manifestations of the Holy Spirit, in the knowledge that prayers are heard and answered. Because God has been faithful and kept His promises in the past, we can hope with confidence that God will keep His promises to us in the present and in the future…
The things we hope for lead us to faith, while the things we hope in lead us to charity. The three qualities—faith, hope, and charity35—working together, grounded on the truth and light of the restored gospel of Jesus Christ, lead us to abound in good works.36
With Nephi I declare: “Press forward with a steadfastness in Christ, having a perfect brightness of hope, and a love of God and of all men. Wherefore, if ye shall press forward, feasting upon the word of Christ, and endure to the end, behold, thus saith the Father: Ye shall have eternal life.”39
If the trees were sentient, they may wish they didn’t live in such a windy and severe climate. But then they wouldn’t have such an interesting and unique look. The wood would not be hardened and useful to the people who lived in these locations for centuries, who used it as firewood and fencing. They wouldn’t be able to give shelter, nutrients and protection for the surrounding area for centuries.
May we not be like the single-season grasses but rather the Juniper tree that sends its roots out deep and wide and provides shelter and nourishment to those all around it. May we find peace and hope we continue to persevere through winds that beat at us and dig as deep as we need through the dry desert sands at our feet to the eternal well of the Savior’s Atoning Waters.
I’m currently in my 18th hour of an ER visit. Hour 24 without food, and hour 30 without sleep. And the right side of my abdomen is currently being stabbed with a pitchfork every time I move or breathe, and every other time I blink. Actually, they gave me pain meds a bit ago again so it’s down from a 9/10 on the practically meaningless pain scale to a manageable (and my pretty standard operating condition level) 5. So I’ve got that going. I also have iv benadryl (and it feeeeellllsss soooo goooood!) and my safe steroids on board too. So if this is incoherent, we’ll blame it on that, m’kay?
Disclaimers 🙂
So first a couple of disclaimers before telling this story:
1) I know I’m incredibly blessed and privileged to have access to great health insurance and a world-class university hospital that is willing to recognize my many, weird diagnoses and treat me. So many with my conditions go without this and it’s absolutely heartbreaking.
2) I’ve had some rough ER visits that leave me worse off than when I walked in, so it makes me quite gun-shy about going into the ER. I’ve skipped going in because the stress of having to defend my needs sometimes outweighs what is potentially emergency room worthy. I’ve learned to (mostly) diplomatically advocate what I know my body needs and respect the doctor and their experience, and who are likely inexperienced with my constellation of conditions. It’s a tough needle to thread. Sometimes doctors don’t respond well to me defending what I need or trying to explain my prior experiences.
I’ve talked before about what getting my bingo card (my current favorite analogy) collection of unusual and rare conditions looks like. But other than those fun adventures, I haven’t had many other “normal” issues. If you ignore all my problems, I’m like *totally* healthy. Haaa.
An ER Visit Personal Record is Broken
But yesterday, I had a normal person health problem that ended my 4.5-year no E.R. visit streak. (Can I get a round of applause for that streak?! It’s dang impressive for me!) Mid-afternoon I started having severe pain on the right side of my abdomen. It was low and it was terrible. I tried my usual bag of tricks thinking it was related to my usual suspects. But instead, I felt worse and continued to get worse. A consult was made with my local access, on-call nurse (thanks for picking up mom!) and I was advised to go to the ER. I bet you can guess what the concern is here. Lol.
I went to my hospital at about 7:30 and it was PACKED. I was in so much pain I could barely shuffle to the check-in window. There were no wheelchairs (spoiler alert: none for hours). I checked in and shuffled down the hall to find a chair. Luckily, someone was called back right then so I hobbled at a glacial pace to the chair. Triage got me about 20 minutes later, took labs, and noted my symptoms.
This photo was taken long after most people had either left because of the long ER wait or had been taken back to a bed. Finally, a wheelchair is available. I didn’t get to use it.
Tales from the Waiting Room
Over the hours, my pain was getting worse. There was a guy who came in a couple of hours after me and appeared to be in significant pain. His approach to getting quicker help was to gradually get louder and eventually got to yelling his discomfort and so he got wheeled back hours before I did. Sometimes suffering in silence is not helpful.
A hilarious interaction I saw was between two men in their 50-60s who were swapping stories. They were sitting next to each other and said they had both been waiting most of the day. They showed each other their left legs where they apparently had both received bug bites of some kind (they guessed spiders). Their budding bromance continued as they watched Jumanji on the waiting room tv together. It made me giggle.
You know, there was something oddly comforting sitting there with other suffering people, knowing I wasn’t alone in my pain and frustration at the long wait.
(So about 7 hours after arrival) I was taken back to a bed and had a chance to finally meet with a doctor.
I just got called back for my CT scan (second attempt) so hopefully they’ll do it this time. I’ll finish writing this later. Please hold.
A Long Story Gets Longer
Okay, I’m home from my ER visit. I was there for 23 hours, and awake for 38 hours (DO NOT RECOMMEND, lol, also might be a personal record?). Oh, man. But we know what happened and what happens from here. And my MCAS reactions were managed quite well. Overall, I’m happy with how it went. Definitely one of my better ER visits. So here’s the rest of the story.
Around 3:30am, on a crazy busy night, I finally made it to a bed. I was utterly exhausted and nervous about how I would be treated by the doctor. Surely they were also having a tough night too.
The CNA wheeled me back into a pretty private area. There was only one other bed in the bay and they were separated by a hard wall. Other bays were open and had 4-6 beds and were much more chaotic. So grateful for where they put me. It was quiet and they kept the light in my “room” off. I don’t like overhead lights. My night nurse, Melissa, came right in. She was wonderful. I explained what was going on and a bit of my prior medical history. While we were going through it the doctor came in. Dr. Tim. Never had an ER doctor introduce himself with just his first name. Haha. He was so great!
We Make A Plan
I went through everything again and Dr. Tim said he thought I need an ultrasound and a CT. He thought I might have a torsion of my right ovary (where the intense pain was) or possibly appendicitis. He also noted that I had some pain up higher on the right side of my abdomen that seemed to be different than the lower right pain. Basically, all of my right side was painful. We discussed pain meds and my allergies to find one that would work for me. I don’t like narcotics and have had reactions to a few of them. We settled on Norco starting at the lowest dose and would work up if I needed it. Fortunately, 5mg of Norco every few hours was enough to cut my pain from 9/10 to a 5. I could handle that.
Dr. Tim left to get the orders in for radiology. Melissa confirmed my triage labs didn’t indicate an infection, and that I wasn’t pregnant (oh good, my pains were not from labor! Whew! hahaha), but because of my primary immunodeficiency, we needed the CT with contrast to confirm. I hadn’t realized the CT was with contrast, so I immediately said that I was allergic to contrast. So now we had to make a plan for how to get the imaging we needed. Dr. Tim discovered the allergy at about the same time and came back a few minutes later to discuss it.
We talked about my previous reaction. My previous premed protocol was 13 hours: oral dexamethasone (dex) and benadryl the night before and IV dex and benadryl the day of. But I reacted on that, so I needed a better pre-med protocol. And preferably one that was not 13 hours long. Dr. Tim thought we could get away with a 5-hour one if we did higher doses of meds. I’d have my ultrasound in the meantime. I didn’t know if 5 hours was enough, but I was willing to try. With a protocol like this, timing is super important so I needed to get meds at the right times and get the CT at a certain time when the meds are at their peaks.
I got my IV with an ultrasound tech. It was so easy. The girl got it on the first shot. Yay! I prefer IVs in my hands, but CT with contrast requires it in the forearm or higher. But it’s usually difficult to get it anywhere else. Historically, it has taken up to 3-4 or more attempts, even in my “reliable” hands. I have lame veins that like to fight off the invading force of the IV. But this was a breeze. Ultrasound placement is the way to go!
Yay for easy IV insertions! And glowy ET fingers!
Ultrasound Time!
Around 6:15am I went for my ultrasound. And I found out I needed an external and the dreaded internal ultrasound. I was not excited. Because the Ultrasound Tech was a guy, the EMT that wheeled me over stayed for the scan and the three of us had an interesting conversation about her decision to go to nursing school. Which was a good distraction from the internal ultrasound. The Tech was a bit of a jaded medical professional (definitely still professional, and honestly, I can’t blame him), but the sweet EMT was excited to be a nurse. I’m rooting for her and told her that I was grateful that there were still people who wanted to be nurses in a post-covid world. And as an EMT working in a hospital, she clearly knew what she was getting herself into. I see good things for her. 🙂
By the time my ultrasound was done, shift change had already happened. When I went back to my room, I met my new nurse, Lucas. He was good, just not as friendly as my previous nurse. I like to get on good terms with my nurses, but he was a nut that I wasn’t quite able to crack. He did his job but wasn’t interested in learning about my conditions or spending time talking. That’s totally fine. But I always appreciate it when I meet medical professionals who want to learn about them.
CT Drama
Four hours after I got my dex, I went to CT. I let them know about my prior history and they then pow-wowed about what to do. One of the techs was sooo kind. He could tell I was nervous and spent time with me making sure I knew they were taking my concerns seriously. I had been so cold in the waiting room and hadn’t had a blanket, unlike everyone else. So the tech went and brought me all the blankets and bundled me up. Hahaha. It was very sweet. I warmed up quite nicely in the chilly CT room.
The other tech and the radiologist came back and let me know I needed a longer premed protocol (I knew I would) and they were sending me back to my room. I didn’t want to be in the ER longer than I needed to be, but I knew I needed more meds before getting a CT with contrast.
Waiting for everyone to finish their pow-wow and to be inevitably sent back to my room without my CT.
A New-ish Plan
I made it back to my room and finally met my day doctor, Dr. Megan. She was also so great! By the time she came in to see me, she’d talked to Radiology and looked at my chart. She had me recap what brought me in and my general MCAS history so she knew what she was dealing with.
She let me know that the ultrasound found a burst cyst on my ovary, but no torsion so I didn’t need emergency surgery on my ovary. What a relief! I also found out I have gallstones. That explained the pain in the upper right part of my abdomen. She said the ultrasound couldn’t quite tell if there was a current infection, and the CT would give us more information about my appendix and gallbladder. She wanted to check with Pharmacy and Radiology and come up with a good pre-med plan.
A bit later she came back and let me know that they had found a new pre-med plan that was stronger and shorter–only 9 hours, and they wanted to go for it. She also said there will be a doctor in the room to make sure I got epinephrine if I do react. I was all for not being there for a shorter amount of time. And a liter of fluids after to help start flushing the contrast out of my body. I got my second shot of dex. I felt good about the new plan.
CT Takes 2 and 3
About 2:30, an hour before my CT, I got my last dose of dex and benadryl. At 3:30pm, Radiology was gifted with my presence again. The swing shift had replaced the morning shift and missed the memo about my situation and high maintenance-ness, so almost immediately I went back to my room. If we couldn’t get this handled quickly, it was going to be another 4 hours (and another shift change) because of the medication timings.
Fortunately, my doctor was able to work it out quickly and I went back to CT within 10 minutes. I had the same tech as the morning and she remembered me, so that was comforting. My nurse came with me and confirmed he would give me epi if I needed it, so that was also comforting. He also brought oxygen, which turned out to be a good thing.
The radiologist wasn’t super patient with me and didn’t really want to listen. He kept saying that I was pre-medicated so I won’t react. I couldn’t tell if he meant to reassure me or tell me I was wrong about my body. It came across as the latter. I told him I was premedicated last time and still reacted. It didn’t seem like he believed me. “I’ve never seen someone react when they’ve been pre-medicated.” I decided to respond with “Let’s hope your record remains unbroken,” instead of, “You’re about to see the first.” I was as prepped as I could be.
And…I did react…but not as bad as the first time, and not as long. The supplemental oxygen helped me feel like I could catch my breath faster, so that was helpful too. I didn’t need any epi. So mostly a win. I mean, I survived, so really, it was a full win.
An ER Visit Comes to an End
Back in my room, I started my fluids. My nurse said it would take a couple of hours to get the CT results. However, my results came back in like 45 minutes. (I think the radiologist just wanted to get rid of me, hahaha!)
Dr. Megan came in and let me know I had no appendicitis! I did not need any emergency surgeries! Woohoo! And I could have food and water again!! Best news of the day.
But she said I needed my gallbladder out because of my gallstones. They’ll only bring me trouble and will possibly cause an infection down the road, which would be very bad. The nice thing is I have time to plan this out and make arrangements for the surgery and save up for the time off. And I will have time to find a surgeon and anaesthesiology to make sure we all feel comfortable. Which is a huge relief.
She also let me know that it looks like when my ovarian cyst burst, it messed up the placement of my IUD so I need to get that replaced ASAP so it doesn’t damage my uterus. I just replaced my IUD a couple of months ago. I’m not excited to go through that again. Ugh.
And as a nice bonus, it turns out my ER doctor is friends with my primary doctor. So Dr. Megan said she’d call her right away and catch her up. I’m very grateful. Conveniently I have an appointment with my primary doctor next week for something else, so we can also talk about my gallbladder, and make sure I’m still doing okay, Another small blessing in the timing of this. I also already have an appointment with a new gynecologist in a few weeks and I can hopefully get my new IUD then, which is also convenient. And as a parting gift, Dr. Megan said she documented the pre-med protocol in my chart so if I ever need a CT with contrast, we can use it again since it worked so well. So grateful!
An Almond Sized Cyst
Without my 3.4cm cyst, I would have never known about my gallbladder. So while quite painful, it saved me a potentially much bigger problem, and for that, I am very grateful.
As soon as my fluids were finished, Lucas pulled my IV, and I was officially discharged! What a relief! I had to wait a bit for my pain medication prescription, so I went to the cafeteria for a light meal to ease my stomach back into food. It had been 28 hours since I had eaten. I can’t fast, so I was a bit nervous to eat. A lot of water, a bag of salty chips, and a bowl of honeydew later, I was feeling pretty good. I picked up my meds and busted out of the clink! My ER visit was over! After 23 hours, I was as FREEEE as Dobby (you know, before he bit the dust, poor Dobby)!
Let me just tell you, after a long, cool shower, and sleeping 13 hours, I feel like a new woman. I still have some pain, but I can deal with it just fine.
A Good Doctor Makes All the Difference
I just want to end this by noting what a difference it makes to have medical providers who are open-minded and good listeners. It is really nice when they recognize patients who have complex and rare medical conditions are the experts in their own conditions. Both of my doctors specifically said, “You are the expert in your condition. So you tell me if ___ won’t work and let’s figure out a solution so you feel as safe as possible.” It was such a different experience this ER visit than even the last time I was in the same emergency room. I had a different doctor who never even told me her name and got frustrated that I couldn’t communicate well (because I was having anaphylaxis?!).
I know doctors are people too, and everyone has rough days at work, and ERs are especially stressful. But bad or even impatient doctors can be traumatizing to have in a crisis when you don’t have a choice about who you see. I don’t have family who live near me. So I’m always alone at appointments and in the hospital. That is stressful. However, good, compassionate, open-minded medical professionals make such a world of difference to the “professionally” sick (and really, all patients). And I am so, so grateful for them. Maybe, just maybe, I won’t be so nervous to head to the ER next time I might need to.
I’m so grateful I learned some new things (like some of my meds can cause significant side effects to my heart, which I didn’t know about so now I can stay on top of monitoring for it!). I got a new protocol in my toolbelt, and walked out better off than I hobbled in.
So now my right side is looking sunny side up!
An Egg Sunny Side Up. Ironic since an unreleased egg is what caused all this ER visit drama. hahaha. Image by maddas from Pixabay
Awhile after I had made Margaret’s Butterflies and The Popcorn Farmer storybooks, some of my nieces and nephews wanted a paper children’s storybook featuring themselves. Well, of course, I’ll make them a book featuring them as the main characters!
So we started planning our story. The kids decided we were all pirates that searched for treasures and fought sharks. Obviously. We came up with hilarious pirate names: I am Captain Pink Beard, then there’s “Shark-Attack Sue,” “Two-Eyed Jack” who wore an eye patch (haaa), “Sharkbait” who has a pegleg, and “Horseshoe Harry” the good luck charm. The story is based on a game we play whenever we are together.
It was so fun to plan and put this book together. It was definitely more intense than the last two books I made! A lot more cutting! And a whole lot more glitter! Yaaas!
The Story
The cover of the book, featuring an overflowing treasure chest.
The Golden Ship, by Megan McGrath
The Flying Fish sailed swiftly through the sea. An adventure was happening that’s a guarantee. Captain Pink Beard ordered the crew to keep a lookout. She was hoping they were on a treasure route!
The crew consisted of four special pirates, Who all knew they were each the Captain’s favorite. The First Mate was Shark Attack Sue, Who defended the crew against all creatures in the great big blue.
Then there was Two-eyed Jack. He wore an eye patch. With a sword, he had a knack. No one was his match.
Next was a wee one they called Sharkbait, who now was missing a leg. All thanks to a shark they named Craig.
Then last, but certainly not least, was Horseshoe Harry. He was the Ship’s good luck charm–always as happy as a canary.
Suddenly, Shark Attack Sue yelled, while pointing at the horizon, “Look there, a bottle floating on the sea! I hope it’s not filled with poison!”
Two-eyed Jack fished the bottle out of the ocean. Said he, “Well, ‘tis not a bottle of lotion!”
Captain Pink Beard gave it a close inspection, and then made a loud clap. “Ye skallywags! This bottle contains a treasure map!”
So the crew sailed the Flying Fish to the small treasure island. The trip was much longer than they planned. All the while, the shark called Craig kept pace. Little human legs had become his preferred taste.
The ship set anchor in the island’s bay, They packed up their gear and headed down the gangway.
Captain Pink Beard led the crew through the jungle, Until they reached four rocks in the shape of a rectangle.
The crew dug, and dug and dug, and dug, until they heard a dull thud.
Crowns, and jewels, and pearls, and coins were passed all around. There was so much treasure in the ground!
Shark attack Sue yelled, “Hooray! We found the treasure!” Two-eyed Jack added, “Now we can live a life of leisure!”
Heaps of wealth were piled in the rowboat, weighing it down. They could not wait to spend the treasure in the next town.
Craig the Shark saw this as his invite. He raced up to little ol’ Sharkbait and tried to take a big, BIG bite.
Shark Attack Sue and Two-eyed Jack stepped into action. Beating Craig back till he hightailed it in a different direction.
Now with their foe defeated, and their treasure stores no longer depleted, They decorated the Flying Fish with gold and jewels that were beaded.
They sailed away in their golden ship shining and shimmering in the sun. And now this tale with pirates, sharks, and discovered gold is done. The End.
Some fun facts about the book:
It took so long to write the actual story! I love rhyming books and so I wanted this book to rhyme. Turns out it’s harder to do than it seems!
The waves are all glitter cardstock. I cut over 60 waves for this book. Whew. The waves were then inked along the edge with a darker blue ink to give them some depth.
The planks on the ship were all individually cut, inked, and glued in place. Easily the most time-consuming part! I even added little nail marks. Yes, it’s okay to roll your eyes.
I had to design the railing along the edge of the ship. It was a bit tricky to do the angled one so the ship had depth, like on page 1.
My favorite page is when the shark is trying to take a bite of Sharkbait. I think it’s such a funny page. I used the trace feature in the Silhouette Design Studio to create the shark.
The sunset on the last page is all inked in. I wish the shimmery ink translated better in the photos. The original is quite pretty.
Since this was such an imaginary story, I felt like I could go crazy with the gold foil, glitter, shimmer, and sparkle. Including the Pink Glitter Beard. 😂😂
The kids looove their story and we regularly play their special game and talk about the story often. I can’t wait till the rest of my nieces and nephew are a little older so I can make a special paper children’s storybook just for them.
Do you have a fun, special game or tradition in your family? How have you documented and recorded it?
Photo of the 400+ Rare Disease Legislative Advocates. Photo courtesy of EveryLife Foundation.
I don’t know why it’s so hard to believe I’m allowed to have a voice. Actually, believing I have a voice isn’t the problem. Its believing I have a voice worth listening to…that’s where I struggle. Believing that my experience has value to others and that sharing it can help others is a little mind-blowing to me.
I grew up very stubborn (my mom just burst out laughing). I had no problem voicing my opinion, particularly when it was contrary to a parent. A trait neither of my parents appreciated. Ha.
Eventually, I learned sometimes screaming your opinion doesn’t convince people you’re right (who knew?!). And so I shut up. Literally. I just stopped sharing my opinion. No one seemed to care what I thought, so why even bother? If there was a group of people talking, I was generally ignored, talked over, put down, or interrupted when I spoke up. So I just stopped. Even now, if there’s a group of people, I probably won’t say anything, unless it’s my family or very close friends.
Earlier this year I stepped WAY out of my comfort zone and went to the Rare Disease Legislative Advocates conference in Washington DC where the whole point was to share my story with members of Congress and their staffers. WHAT THE HECK WAS I THINKING?!
The Nevada Advocates “momma bears” and I on the Capitol Building Steps between meetings with Legislators.
As terrifying as it was, it was also incredibly empowering and liberating. I met incredible people using their voices to make actual changes in their home states that impacted real people. I was partnered with an older gentleman that was also from Utah, and we were grouped with three incredible mothers from Las Vegas who created organizations to support the Sickle Cell patient community in Nevada.
Watching these 4 individuals share their stories of how they’ve taken the hardest things life has thrown at them and they’ve turned them into a crusade to benefit others was awe-inspiring and powerful.
Other Masties and I! It was so fun to meet them in person and hear their stories. And be reminded that I’m not alone in my struggles. And isn’t that why we share our stories?
I was also able to meet other people with the same condition as me! It was amazing! And we bonded over our bodies’ mutual disdain for direct sunlight and chlorine (swimming is generally a no-go for me, lol).
My story matters. Sharing my story matters too.
Your story matters. Sharing your story matters too. Find a platform to share your story. Maybe it’s telling your kids (or nieces and nephews) verbally about your grand adventures as a child to them as they fall asleep at night. Maybe it’s a scrapbook or photo album. Maybe it’s a Facebook post, a blog, an online video. Maybe it’s a private journal. Maybe it’s shouting it from the rooftops.
The how doesn’t really matter. What matters is that you share what makes you, YOU. Share what matters to you. Share why it matters.
Actually it was this conference and sharing my story that reminded me how much I’ve missed sharing. That I’ve missed having a blog. A place to tell my story. Share my triumphs and hilarious missteps. So here we are.
Hello, World! Once upon a time, I had a blog. It was so fun for me, but after a rough year, I stopped and didn’t pick it up again. Then I got sick. Again. My plate suddenly got really full trying to manage a serious, life-altering disease. It was really easy to narrow my world and just focus on that.
My adventures in crafting, especially paper crafting, began at 13/14 when I got very sick and missed a lot of school. As a child, I loved walking the aisles of office supply stores. The pens! The highlighters! The rulers! The planners! The paper! All the organization helps! Oh goodness, it’s a really good thing I didn’t know about or go into craft stores. I would have fainted from pure joy. Smart move, Mom! Ha!
But then, my mom claims she made the “worst mistake of her life*” when she bought me a pack of fancy printed scrapbook papers, scissors, and glue to keep me entertained while I was sick. My obsession with scrapbooking, documenting life, and crafting began. I could turn that paper into anything my imagination could think of, just using scissors and glue!
It took a long time to figure out what made me sick when I was 13/14, but in 2015, 16 years later, I finally got answers when I was diagnosed with Mast Cell Activation Syndrome (MCAS) after a series of worsening allergic reactions, including several rounds of anaphylaxis. Since then we’ve also found out that I have dysautonomia (likely POTS, but I was having a good day when we did the testing), and a Primary Immunodeficiency (Specific Antibody Deficiency). Basically all this means my immune system is broken in a few different ways and I’m taking on a lot of medications to keep me from going into anaphylaxis. Good times!
I craft to keep myself sane as I deal with my complicated body. And I try to get out and adventure when my body is up to it. The photo above is from a recent drive up a canyon to see the fall foliage. So beautiful!
So, Hello World! I hope you’ll join me and follow along!
*that’s an accurate quote I’ve heard multiple times, hahaha!
