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Celebrating your life

DAY 1 Do you have a ”day” in your life that changed you forever? My “day” was 30 years ago today. On May 3, 1989, I was diagnosed with a rare disease called Dermatomyositis. I lived in The Children’s Floating Hospital in Boston for 6 months and was in a wheelchair for 9 months. It’s not been an easy ride but I’m grateful to say I’m here! This month is Myositis Awareness month and I’m taking this month to share some of my stories about my life with this disease. DAY 2 (I’m going to jump around with my myositis story telling and it won’t always be about me. But it will be about my journey) Peter Mayhew’s (Chewbacca) height was a product of Marfan syndrome, not gigantism; "I don't have the big head", Mayhew said when asked about the cause of his height. His peak height was 7 feet 3 inches. He died a few days ago on April 30. In light of Chewbacca’s passing, May the 4th, and because he loved Star Wars, I’m going to tell you about my friend Zachary. Zachary was one of the many children I met while I lived on 7W. He had a progressive and rare form of Giant’s disease. His bones grew but his muscles and organs didn’t grow with them so he was unable to stand or sit and he was confined to a stretcher and lived his life laying down. At 7 years old, he was nearly 7 feet tall. His voice was very deep and his enlarged cheekbones hid his eyes which were sunken into his head. He had shoulder length blond hair, blue eyes and he loved loved loved to talk about Star Wars and video games. His favorite Star Wars character was Luke Skywalker. Zachary and I did our physical therapy together sometimes. It was hard and painful for him to be moved out of his bed and he really didn’t like doing PT. So, instead, Cathy (our favorite physical therapist) would sometimes let us just talk to each other while we’d try to get him to do isometrics with me. He would babble on and on about video games and Star Wars and had lots of theories about time travel and space! I loved listening to his chatter. It helped me to remember that he was only 7 years old even if he was as tall as a giraffe. It was hard for the docs to remember that he was just a boy who wanted to live a normal life. They desperately wanted to help him and were constantly giving him tests, drawing blood, etc...He was cranky with them always touching and prodding. I didn’t blame him. They were relentless. And nearly his entire life was spent living in the hospital. He was tired of it. I remember the Monday Cathy came to get me for PT and sat on the edge of my bed. She told me that Zachary’s lungs collapsed. That Friday, his big heart gave out on him and he died over the weekend while I was home on pass. I sobbed. I didn’t go to physical therapy that day. Instead, I laid in my bed, did my isometrics and watched “The Empire Strikes Back” and thought of Zachary. He was the first kid I met on 7W who died. He wasn’t the last. DAY 3 There have been 10,957 days from the day I was diagnosed up to today. There are many more days that I’m not counting. That’s just the number of days from diagnoses. “On average, it takes more than 3 1/2 years and 5 doctors to receive a correct autoimmune disease diagnosis. Myositis patients—including frantic parents of drastically weakened children—find that a great deal of damage is done during this wait.” They aren’t joking when they say “great deal of damage is done during this wait”. I fell down every day. Small children running by me knocked me over. (True story!) The diagnostic tests were humiliating. “Get up off the floor” (I couldn’t). “Step up this stair” (I couldn’t). “Lift your leg up to touch your elbow” (I can’t). “Raise your head off the pillow” (I couldn’t). “When I tap your shoulder, try to resist getting pushed over” (I couldn’t and I fell off the examining table). “Swallow this thick drink without choking on it” (I couldn’t and I did). “Walk from Point A to Point B in this room without falling” (I fell). “Get up from a chair” (nope). “Can you crawl like a baby?” (No.) “Roll yourself over” (nope). “Raise your arms above your head” (can’t). “Do a straight leg raise” (can’t). “Can you do a sit up?” (I haven’t done a situp since 1988). Test after test - over 6 months of testing! - and I was diagnosed. I was told that at the time, there were 10 adults in RI who had the disease. No kids or young adults. Boston pediatrics had one other patient in their care who also had dermatomyositis. That was it! Nowadays, all forms of the disease combined affect an estimated 50,000 to 75,000 people in the United States. DAY 4 More of my Myositis story! A lot of comments on this thread report similar stories to mine. I love to read them and realize how much we strangers have in common. One of the biggest things we share is the “medication discussion”. There’s so much more available today compared to 30 years ago. But, for my case, unfortunately, Prednisone coupled with a “piggy back dose” of either a chemotherapy drug called Methotrexate or another immunosuppressive drug called Imuran works the best. I’ve been on Prednisone for 30 years now and I’ve only once been able to wean lower than 5mg/day. If you’ve ever taken prednisone for asthma or poison ivy or a bad cough, you’ll probably say “holy cow! How did you sleep?” Or “that stuff makes me crazy!” Yes, those crazy symptoms are just some of the insane side effects. But, did you now that it eats away at your skin? I have deep stretch marks - called straie - under my arms, between my legs, on my stomach, behind my knees...I got these when I was put on 150 mg of Prednisone a day for the 6 months while in the hospital. (You doctor friends know how a dose like that is viewed today but 30 years ago, they didn’t know what that dose would do to a person.) These stretch marks itch like crazy and are unsightly. They make me VERY uncomfortable in my own skin (literally!) I never wear tank tops, short sleeves and rarely wear shorts. I hate wearing a bathing suit but I do it because I LOVE swimming! 🏊‍♀️ But the steroid side effect that really effected me was the eating away at my bone tissue which caused “avascular necrosis” in both of my hips. I started getting pain in my left hip and then my right hip. The X-ray showed that the bone at the head of both of my femurs no longer existed. I couldn’t stand on either leg and began using crutches full time. The summer of 1991, before my senior year of high school, I had surgery and got the left hip partially replaced (just the ball and rod put in, not the socket) and a week later, i had surgery to replace right one. I spent that summer rehabbing as best as I could but weak muscles don’t rehab well so i attended a new school in my senior year walking with crutches for the first 4 (?) weeks down the halls of Chariho High School. Since then, both partial hips broke in 1997 so I needed to get full replacements of both hips in 1998, then two revision surgeries of my left hip that same year because my ligaments weren’t keeping the ball in the socket and both hips have been reconstructed several times since (2013 and 2014) I’d have to check with Dr. Marchand (or my mom? Or Ben?) but I think the total is 7 surgeries left side and 3 surgeries right side. And Dr. Marchand did all but the first two of them ❤️ the first two were performed in Boston by the same team of docs that did Bo Jackson’s surgery so I feel famous! DAY 5 The Americans with Disabilities Act of 1990 is a civil rights law that prohibits discrimination based on disability. It affords similar protections against discrimination to Americans with disabilities as the Civil Rights Act of 1964,which made discrimination based on race, religion, sex, national origin, and other characteristics illegal. In addition, unlike the Civil Rights Act, the ADA also requires covered employers to provide reasonable accommodations to employees with disabilities, and imposes accessibility requirements on public accommodations. Now, I was diagnosed in 1989. It took several years for this act to “stick” and even still it’s not really enforced by many. For example, every morning I have to walk up two flights of stairs to get to my office. By the time I reach the top, especially in months of flare ups, my legs feel like jelly and Ive barely made it up the stairs. There’s no elevator option. And I’ve fallen a few times once I reach the office. Once my boss thought she might surprise me and gave me a gift 5 years ago by putting in a handicapped handle next to the toilet in the bathroom in one of our offices. It was a present to me. The revealing of the gift was at a staff party with all of my colleagues there. I left that work party joking that I couldn’t wait to go and check out the new toilet. But the reality of it was that I left feeling embarrassed and ashamed that we were all talking about my bathrooming challenges. And, a handle isn’t helpful to me. It is for some people but not people like me. When you’re weak all over, your arms can’t help you hoist yourself off of the toilet bc they provide no strength to help you rise up. Higher toilets are my gig but even at my sickest, the highest toilet (practically standing up!) provided no help to me. In fact several times my step father had to help me off the toilet. At 14...it was humbling. At our workplace, nothing about our organization is “ADA friendly”. But we certainly aren’t the only organization which is non-compliant. As I understand them, the guidelines are structured to allow equal access which most everyone interprets to mean “wheelchair friendly”. Give aisles space 36 inches and allow for a big bathroom. As a once wheelchair bound person, I can say that this is certainly helpful. But, think on this: notice the stairs (even ONE stair) into your favorite restaurant. Notice the areas in which you move in. Start shuffling. Everywhere you walk, only shuffle and never raise your feet off the ground. Try to shuffle on those beautiful cobblestone sideways of Boston. Think about the seats you sit in at the restaurant. How low are they? Try getting out of a booth table without lifting yourself even slightly off those cushiony seats. Some doors are not automatic and are quite heavy. Next time you’re out and about take a look around you and I bet you’ll notice all sorts of things. I know I do. Also, if someone is waiting in the bathroom and the only next available stall is the handicapped one, consider asking the person in line behind you if they need it before you just take it. Because even if they look like they don’t, they might need it. DAY 7 I celebrate nurses! I had an AWESOME TEAM of them taking care of me while I was in the hospital. When I arrived at 7W, a team of people were assigned to take care of me - mostly nurses. I still remember many of their names and what they looked like. Linda, Dawn, Winnie, James (my BFF 7W roomie Colleen and I loved him)...They all seemed so cool because they were allowed to wear street clothes so that we kids didn’t feel like we were in the hospital as much. And they were thoughtful and kind and took great care of us all. They knew that our illnesses were tiresome and draining. They recognized that maintaining our mental health was as vital as our physical health and they worked hard to keep our spirits up. And these nurses saw so many really really sick kids. I don’t know how they did it? But I’m extremely grateful that they did. What an amazing and inspiring group of people nurses are. I often wish that I became a nurse but I was worried that I’d struggle physically to keep up with the pace. Even now, I frequently think about going back to school to become one. I’m FB friends with one of my nurses. I won’t tag her but I must say, she was SO WONDERFUL and I honestly don’t know what I would’ve done without her. She literally helped me survive during that period of my life. And she taught me the value of great music. She made me mix tapes and we’d chat about the bands we liked and didn’t like. She was the person who got me into 10,000 Maniacs and Natalie Merchant, who we met at a Maniac’s concert which took place at the Wang theater next to the hospital in 1989. This still remains a major highlight of my life. I’m still so grateful to them. DAY 8 Today I thought I’d lighten things up a bit to tell you a funny story. I’ve had many, many, many doctors over the years but only three rheumatologists. I thought my rheum while living in Colorado (Dr. Spencer) was adorable. He wore this cute little bow-tie and dressed like a J Crew model. I saw him once a month for the six months I lived there and every time, my blood pressure and heart rate was fine when the MA took it. But when he’d come in, it would spike like crazy. He’d scratch his head in wonder. First visit it happened, I felt okay and he thought it was strange and would keep an eye on it. Second time it happened, I felt okay and he wanted me to return in two weeks instead of a month. Could be it be medication? Or was it muscle-related? He was worried because it was just as I started the chemo drug. I returned the third time with same results: BP/heart rate was fine until he walked into office and took it himself. He ordered an EKG which they did while I was in the office. It read fine when the tech did it but when Dr. Spencer came into the room, it went crazy. Tech pulled him aside and they came back into the room together and EKG removed. It was that third visit that he figured out that I had a massive crush on him. After that visit, he stopped trying to take my BP and heart rate when he checked me out and he relied on what the MA reported on - which was completely normal every time she took it. DAY 9 This post is meant to encourage you to stay in touch with the people you love. Drop a line now and then to let people in your life know you care about them and they are important to you. Life is short — there are opportunities to have a very sweet adventure with the people you meet. Don’t miss out on these chances! A few days ago I mentioned my friend Colleen in my post. Today I’ll tell you about her. I was in the hospital so long, I had many roommates come and go. The majority of them came, got their treatments or overcame whatever landed them there and went home. I decorated my side of the room and frequently took over the space next to me when I didn’t have a roommate and preferred not to have one if I could help it. But when Colleen got readmitted, selfishly, I was kinda happy she was sick again because I’d have my favorite roomie back with me for a bit. My nurses would excitedly tell me “Hey guess who’s coming for a visit? COLLEEN!” And my smile couldn’t be contained. Of course, she was there because she was sick. Really sick. She had a rare disease of the heart - and it affected her veins, which were too tiny to push blood through. I’m oversimplifying this because I truly didn’t understand her illness. It began with a T. Anyhow, all I know is that she’d have spells where she’d scream bloody murder because of pain. She’d get horrible headaches where to help they’d slope her bed all the way upside down to try to increase blood flow to her brain. Those times, she was not fun or funny. But MAN! The other times when she was there, she made me laugh so hard and honestly we used to have the best time together. In the mornings we’d wake up at 6am and giggle while getting ready for rounds, wondering which new resident or fellow would be leading them that morning. Neither of us had any hair (hers was worse than mine) but we’d still brush it and sometimes try to clean up before they came. We shared a TV and we’d watch shows together and heckle the characters. She loved soap operas (I think Days was her favorite?) I usually had PT once in the morning and once in the afternoon so she’d watch during the afternoon and provide updates for me when I returned. We exchanged addresses and through the years, we became pen pals. She lived in Mendon, MA and I in RI. She was one year behind me in high school. Life got busy and who can afford envelopes and stamps in college? So our letters grew sparse but I had a friend, Mike, who was one of her peers. And when I moved to Colorado, Mike told Colleen and gave her my address out there and she wrote to me. I wrote her back and told her that I was flying home to see my sister graduate from college that May and when I did, I planned to visit her as well. When I got to Massachusetts, one of the first people I called was Mike and I asked him if I could catch a ride with him if he was going home. I wanted to see Colleen. He was quiet. “Miriam, Colleen died a few weeks ago. I’m sorry, I thought you knew.” I didn’t know. (That’s one of the better things about today’s modern technology. You learn things like this when they happen, not weeks later.) I think she was about 18 when she passed away. Too young to die, she actually made it pretty far considering all she’d been through. I was proud to know her and I think of her often. She was a good friend during a hard time and I’m so glad I met her and we stayed in touch for as long as we did. DAY 10 This is kinda cool about this game. It’ll be my “myositis” post for today. Donate. You don’t have to donate to this but find a cause and donate to something that you believe in. Donate your time. Donate your energy. Donate blood. Donate your organs. Donate your attention. Remove your attention from yourself for just a small amount of time. I guarantee you it’ll do your heart good. And stop wasting your time focusing on stupid stuff. (I’m speaking to myself on this one) It’s going to be nice out today in Southern Rhode Island. Get off your phone and go outside! Breathe in that precious air! You’re so lucky to be given another day here on Earth! CARPE DIEM! DAY 11 - Mother’s Day post from my husband Many of you have been reading Miriam’s blog type posts about her journey with chronic illness, so on Mother’s Day, so that she can take a break if she chooses to, I figured maybe I’d talk about it from my perspective....... My life with Miriam started when I was sixteen or so. I really didn’t know her well, she was a friend of my older sister’s. We had some other mutual friends but really she was just sort of a cute, funny girl that I’d run into once in a while at some party or whatever. I’d see her out somewhere about once a year or so. In 1999, she invited us to a Halloween party at her house, and as usual, she was the life of it. I ran into her again about a week later at Joyce’s down in Matunuck, and like to think that I “stole” her from her date. So began the last 20 years of our lives together. Obviously, her disease came up in conversation while we were dating, but as young men do who are in love with someone, I always sort of blew it off (she was mostly in remission while we were dating) thinking it couldn’t be that bad. Of course, I’ve now witnessed what she goes through closely, and though I could tell a ton of stories that are about the hardship she experiences, I’ll tell you instead about what that hardship - and the experiences, people she has met etc, have helped to mold: - A tough as nails lady who gets knocked down a lot, ALWAYS looks at the bright side, and gets up fighting like Tyson. - A woman who wanted to be a Mother so badly that she was willing to risk killing herself, twice, to do so. - The type of person who is almost always uncomfortable, in some sort of pain, but smiles and works hard to make another feel great - The type of wife that no matter what happens supports me, my decisions, (at least publicly, until “we” realize I should’ve just listened to her advice in the first place) lifts me up, and makes me feel better about who I am and the things that I chose to do. - Most importantly, the type of mother who is loving, caring, kind, and supportive of our kids. But definitely also expects them to produce great things, and treat their life as the blessing and wealth of opportunity that it is. - Someone who sees the joy in simple things - a bike ride, a long walk, laughter amongst friends, singing, and really bad dancing. In short, an amazing lady, full of grit and determination, with a type of compassion and empathy built through hardship that most never experience, full of love, and caring. An excellent friend to have. Someone who chooses to live life to the fullest, fearless in trying new things, understanding more than most that each day is a gift to be enjoyed. A leader who is always quietly pushing those of us lucky enough to be around her to realize the same thing. Happy Mother’s Day, Darling. You are the best. We love you. DAY 11 - my post about my mother Happy Mother’s Day to my mom Eleanor Wilsey Let’s not forget, I’m telling you all of these stories...my mom lived nearly every one of them herself! She was (and still is) always by my side. As a mother now, I can understand how crazy scary it must have been for her to go through all of this. Countless nights she laid on the barkalounger (an uncomfortable pull out chair they gave her so she could sleep next to me) and got up with me in the middle of the night to help me go to the bathroom, pick me up off the floor (literally and figuratively) and hold my hand when I was scared. I am forever grateful to my mom for the sacrifices she made in raising me and for the sacrifices she continues to make. She raised me to love God and to love people and she’s an amazing Grammie to our kids! So, mom, thank you. I love you. DAY 13 Yep my mom is awesome. I grew so attached to my mom that for a time, I didn’t ever want her to leave the hospital. Once discharged, it took a while for me to feel confident enough to go anywhere without her. What if I fell? Who would pick me up? Who would brush my hair? Who would help me out of the car? What if I sit down in a chair and can’t get up? But I’m sure that for her, this probably became exhausting. She had a life, another daughter to raise after all, a husband and at some point, she needed to get back to work. She gently pulled away a little here and there so I could become independent. But the coolest thing was that once this happened and I allowed her to break away a little, a lot of my “other moms” jumped in to help out when we needed it. And I had a bunch of them and still do! Caring and thoughtful and willing to offer a helping hand, these women are my heroes Tonja Strope Sandi Marth Jan Eno Sue Tassone Keven Milan (my other auntie!) and many aren’t on FB (Jackie Charlette) and there are so many more who’ve come into my life and changed me forever. They’ve provided love and support in so many ways and made me feel special growing up - and they continue to even now. YOU DON’T HAVE TO BE A MOTHER TO BE A GREAT MOM TO SOMEONE. Reach out to people who you think might be struggling or might need help. It will make a lasting effect on a persons life. DAY 14 It was a tough day emotionally and physically. Life is hard. We must allow for and find time for rest. It’s totally okay. Just get back to it tomorrow! Lamentations 3:22-23 I’ll do better tomorrow. More myositis posting then. DAY 15 When you have an auto immune disease your immune system attacks healthy parts of your body that it shouldn’t. It’s kind of like my immune system decides to fight my muscles - it thinks they’re a threat to me - instead of fighting off stuff it’s supposed to. To counter that, we need to suppress my immune system so it stops fighting. This can mean my body stops fighting everything as long as I take immunosuppressive drugs. Because I take immunosuppressive drugs, my body is susceptible to bacteria that healthy people are not be susceptible to. So, I get weirdly sick sometimes. Once, I got nocardia. It gave me a bacterial abscess on my forearm, my lung, at the base of my back and on my brain. It came on fast and I was very sick from it and put in the PICU for several days. I still have a scar on my lung from it and I take medicine to hopefully prevent me from getting it again. (To learn more about nocardia: https://medlineplus.gov/ency/article/000679.htm) Since I’ve been on a long term dose of prednisone, I’ll always be in the “at high risk” population and immunocompromised. People like me - and there are lots of us that take these drugs for one reason or another - are the ones who get weird illnesses and are theoretically the first to contract diseases that vaccines are designed to prevent. In a few weeks I’ll see my rheumatologist and we’ll have to evaluate if I need to get vaccinated again. This stinks but it is better than contracting polio or measles I suppose...I mean, who wants an iron lung, right? DAY 16 a post by my sister Hi everyone! Today I am taking over Miriam Giles’s Myositis post to talk about her story from the sibling’s point of view. I was sitting in church one sunny Sunday, probably daydreaming, when an usher came over to me and said I needed to leave immediately. There was an emergency with my sister and I needed to get to Boston immediately. Although she had already been in the hospital for many months after her myositis diagnosis, on this day, she had been admitted to the Pediatric Intensive Care Unit due to a nocardial infection (for more information about this, see Miriam's post from yesterday). Mom was already up there with her, so a family friend drove me up. We rode in silence as I gazed out the window and wondered what to expect. Upon arrival, I was whisked to the PICU, and was told to “scrub in”. While I scrubbed every inch of my hands and arms with the antibacterial soap and scrub brush, I overheard the doctors and nurses talking to my mom. “How old is she?” they asked. “Seventeen”, she replied. Silence. I couldn’t go in unless I was 18. There was some whispered discussion and an exchange of looks. More silence. A nurse handed me some scrubs, complete with hat, mask, and booties, and told me to put them on. This is when I knew things were serious. They were letting me in anyway, even though I was too young. They were letting me in to say goodbye. I think anyone that knows Miriam and I on any level might say we are as thick as thieves. To call us close is an understatement. It’s been like this since birth, and many circumstances in our lives have made us even closer: from the death of our father to some pretty wacky childhood adventures. This illness was no different. For 9 months I lived without her as she was treated in Boston. Every weekend, I would visit the hospital. These were days of playing many card games, catching up on school/boyfriend drama, and taking short walks around the pediatric wing. Occasionally, when she felt well enough, with the nurses’ permission, we would venture into the streets of Boston with other visiting friends, invariably causing disturbances of every kind, while arguing over whose turn it was to push her in the wheelchair. By this time, I had learned how to pick her up if she fell, how to fix her hair, how to stretch her out and help with physical therapy, and most importantly, how to pick out comfortable, yet fashionable outfits for our excursions (ha!). This was MY sister, and I was taking care of her! Somehow, even though she was weak and sick, visiting was still… FUN! So, what is a sister to say and do when she sees her best friend and confidant lying in bed close to death? Well, if you are Miriam’s sister, you play UNO. So, that is what we did. We chitchatted and played UNO for as long as they would let us. I tried not to cry and when I left I said “See you tomorrow”. By the grace of God, tomorrow came. So did lots of other tomorrows. I am not going to lie, these were scary times. There were lots more scary times to come. We all know none of us are guaranteed tomorrow, but because of stories like Miriam’s and others, we can learn not to take life for granted. Sometimes when I hear someone complain, I jokingly ask “but did you die?” By this I mean: as long as you are still alive, you have the power to chose changing what you dislike. You can be bitter or you can be better. As long as you are waking up each day, you have the chance to make your life an adventure or a lesson to be learned. Each day is a gift, let’s start treating it that way! Now, who wants to play UNO? DAY 17 This post is about my poop. When you have an auto immune disease and you’re used to contracting strange illnesses, you start looking for them — even when they don’t exist. Your brain starts talking before you can think logically. Like the time I pooped electric bright fluorescent green poop. My brain said to me: “you have e-Coli.” It said “your colon burst” and it asked me: “Did you eat algae at some point today or yesterday?” It asked me “are you radioactive?” And it said “I think you might be?” 😬 nerves and sweat and oh no! “You’re going to blow up tomorrow and the end is near.” My brain told me: “you better take a picture of that. It’s not normal. As soon as the kids get off to school, call the doctor, get an appointment and show him it. Prepare for the worse.” ——————-/ Before I had the chance to act on these instincts, my 7 year old came running out of the bathroom laughing and announced “I pooped bright green this morning Mommy! It was amazing! Haha!” Gasp! Was this contagious? Nope. You see, we were at a birthday party the day before, and the cake that was served was from Walmart and it had that bright blue frosting on top of it. And I only eat frosting, I don’t like cake. So I ate A LOT OF FROSTING. Turns out, no one should eat that frosting. Turns your poop phosphor. 😆 Our brains can play tricks on us. Sometimes, it’s best to ignore our brains and just.keep.swimming. (By the way, the irony is not lost on me that while I hate talking about whether or not I can get off the toilet, I have zero problem talking about what actually happens when I’m on there.) DAY 18 This week, I’ve been thinking about Jimmy. Jimmy had Cystic Fibrosis (CF) and I’ll start by saying that I don’t know what happened to Jimmy. But I do know a little about CF so...I’m left only to wonder. (To learn more about CF you can go to https://www.cff.org) 7 years old, he’d come in once every couple of weeks for his intensive pulmonary therapy. I knew when he was “in town” because I heard the sounds of hard clapping over and over again. The pulmonary therapists cupped their hands and clapped on his back over and over again to release the mucus build up. I always wondered if he got bruises from it? After a spell of therapy, he’d burst out of his room pushing a big truck up and down the hallway, full of energy and likely feeling better for a little while. Then he’d return to his time of wearing an oxygen mask and his IVs. He was a cute kid. When he came to the hospital, I stayed in my room because the first time he came he ran by me and knocked me over as I was walking down the hallway to get water. The nurses told him to be careful and try to go around me or stay away from that end of the hallway. This seemed cruel to me and I figured he was only there once in a while and it did me no harm to just watch him run up and down the hallway from my window inside my room. So that’s where I’d stay - smiling while watching him - when he was in. His energy was infectious. You may remember CF from discussions of genotypes and Punnett squares in science class. I remember thinking it was interesting to learn about but it wasn’t until I met Jimmy that CF was made real to me. People who have CF have to endure these intense airway clearance techniques (ACTs) I described above to release the mucus that builds in airway walls and throughout their bodies. ACT slows the process down, but nothing stops it. I’ve read that over the past thirty years, these techniques have gotten much better and some kids born with it live to be over 30 years old, a few are seeing their 40s and 50s. Now there’s genetic testing that couples who are planning to have children can take to see if they’re gene carriers - we didn’t have that readily available 30-40 years ago. Modern science has come so far and we’re learning so much every day. DAY 19 Details of hip surgery - scroll past this if faint of heart or eating or what have you! I sometimes wonder if life is a series of weighing out your pros and your cons. Doctor wants another biopsy but I said “NOPE” (I learned how to do that in Improv) to him at yesterday‘s quarterly appointment. If I’m being honest, most of that decision is because I remember the biopsy from 30 years ago. I remember exactly the sound it made when they snipped a piece of my left deltoid. My body felt it snap when they took it and my neck jerked a bit. I remember them talking me through each step of it and I was awake enough to nod ”yes” and “no”, indicating my understanding. And frankly I don’t really feel like doing it again. Ah! surgeries! Because of the hole in my lung, I’m only able to have spinal anesthesia so I’ve been awake for all of my surgeries. My first major surgery was a partial hip replacement of my left hip (the ball but not the socket). This is also the surgery where they put the rod into my femur. During pre-op discussions, I asked my orthopedic surgeon if during surgery I could see what my hip looked like after he sawed it off. Nice guy that he was, while I laid there on the table, he came to my side and showed me my deteriorated bone and explained the what/how/where/why. ‘Twas cool. One surgery while putting my hip in again (the second or third time?), my ortho had to dislocate my hip to get at it and fix it. Although sedated, I heard him say “ok so pop that hip out towards me and hold her leg in place while I screw this piece in” all the while he was listening to Fleetwood Mac’s “The Dance” CD and singing to Lindsey Buckingham’s part. He sang his top voice to “Never Break The Chain”. 🙄 That CD ran through twice and then someone put George Michael and Elton on. I remember laughing at one of the jokes the team made and someone saying “oh wow - she can still hear us. Miriam, can you hear us?” “Yep.” Pretty funny. These are not bad memories for me. In fact, I laugh at them when I think about them. It’s funny to talk about. But, my subconscious brain remembers too much and I guess it doesn’t think it’s as funny. And so it tries to stop things from happening. The last time my hip dislocated, even though I was sedated, I summoned the strength of 1,000 men trying to keep them from returning my hip into place in the ER. I didn’t mean to but my brain said ”NOPE”. Ben had to hold me down while they popped my hip back in. He’s my hero. What’s comical is that I don’t remember any of that...brains are weird. But at least I’m learning how to say “NOPE” here and there. And that’s a good thing to learn. DAY 20 Good morning! At my weakest, I lost my ability to talk and swallow. I had to write down what I wanted to communicate and eat mushy food. So when those muscles came back, I decided I’d never take speaking or singing for granted again. And so even if it sounds horrible, I sing anyway as a reminder that I can. (And as a reminder to my poor husband hahaha!) But...Here’s my message: Don’t take anything for granted. SING! Run! Go for that walk! Drive with the window down and forget what your hair will look like when you get out. Talk to that person you’ve always wanted to meet. Get on the court and play volleyball EVEN IF YOU STINK AT IT. Eat the cookie. Sing your song. DAY 21 Mental and emotional health is equally (if not more) important than physical health. Check on your friends and keep your close relationships tight. St

One month of telling stories of 30 years with a chronic illness helped my evaluate my priorities and enjoy my life again.

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