Idiopathic Thrombocytopenic Purpura (ITP)

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Idiopathic Thrombocytopenic Purpura (ITP)
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    How Hospital Rituals Can Create Familiar Rhythms for Kids and Adults

    As a chronic illness patient myself (lupus, ITP, Hashimoto’s, fibromyalgia), I have learned a few tricks about making hospital stays bearable. Let’s just say thank God for that because my 10-year-old is in the hospital right now with a terrible ulcerative colitis flare. Life for a 10-year-old should be all about playdates, enjoying food, and creating in Minecraft. It should be consumed by learning and laughing. But, as many of us know, the chronic illness life can take a toll on the most resilient of adults, and it can also be equally challenging (albeit in different ways) for children. Creating rhythms of familiarity has been helpful for us in our hospital stays. My hospital rituals help keep me grounded, encouraged, and most importantly, help me pass the time to be able to get through each day. Hospital rituals for me look like making sure I take a walk each day to my favorite coffee cart. It means packing the same pink pin-striped toiletries bag that my friend Heidi sewed. It means being sure that I take my big hoop earrings and my favorite book with me. For my children, it looks like a continuation of our homeschooling and rhythms from our life. For my son, it starts even on the long drive to the hospital. We always listen to an audiobook (we have them ready in the car). This trip, it was Roald Dahl’s “The Twits.” Our in-hospital ritual looks like packing and playing a particular card game we love. It means making sure we have his special monkey toy in his bag. It means being able to log onto the Minecraft server so he and his sister can play remotely and feel connected. It also means grabbing a Famous Five or Secret Seven read-aloud and enjoying that with a cup of tea before bed. It means making sure we whisper our “I love you’s” still in the dark once we have turned out the lights and there’s nothing but the nurse call light left illuminating the darkness of the room. It might not sound like much, but these little rituals help remind us of the familiar, which in turn helps us remember who we are. And if we can do that, we can manage one moment by one moment, which in long hospital stays is a real game-changer.

    Community Voices
    Community Voices
    Community Voices

    HOMESCHOOLING WITH CHRONIC ILLNESS

    Today’s not a good day pain and inflammation wise.

    It’s not the worst of days but it’s not the best either.

    I could feel it throughout the night. My right hip was aching when I turned in the light part of my sleep.

    When I actually woke up to start the day, my knee felt like someone had hit it with a hammer. My left elbow was so sore that just to rest it on the table was impossible. My right knee felt inflamed and hurt to walk up stairs. I had to take one stair at a time and hold on to something as I climbed each one. I had swelling and bloating in my stomach. In short, I was in pain and discomfort before the day had really begun.

    In case you are wondering why things are like this right now, I will say that this has all coincided with a drop in my steroids and an increase in my immunosuppressant. It is something that has happened before for me in my journey with Systemic Lupus and previously with ITP but I had been hoping it wouldn’t happen again. Maybe it’s just a one off bad pain day today. I don’t know yet. Maybe it’s more of a pain-kind-of-season.

    What happens on days like today when homeschooling still needs to go on?

    Well, it’s what happens to anyone when you have kiddos at home and are feeling under the weather. You do whatever you need to get through. Some days like this we do lots of bed-school or lounge-school; we learn from the lounge or bed. Some days we watch movies or have resting time. Some days it all gets a bit too much for everyone.

    This morning Miss 12 (Zippi) showed me some new fashion designs she’d be working on. She’d sourced the template and then designed over it herself. She happily showed me what she had created. The kids did some chores before we left the house. All examples natural learning.

    We had a few errands to run so we did those early in the morning. We made a list and went for it. We went to the local church book fair (first one since Covid hit). Zippi posted some letters too. I did minimal walking and had time to have a cuppa at my fave café with the kids. The kids chose books (more Trixie Belden, books on Ancient China for Zippi and some Mr Men for Mr 9 (Zeeki)).

    By the time I got home, I was wrecked and in pain. I had to rest again while the kids had their lunch and did some quiet poetry reading together in my bed.

    We read a beautiful War poem called ‘Lights Out’ by Edward Thomas. We discussed the themes of death and light. We talked about subject matter, about the stanzas and the rhyming pattern. We discussed how it was written perhaps from the point of view of a soldier given that it was written in 1916 during World War I.

    Once rested and with meds under my belt, we tidied up a little together and then read outside under our fave trees. We were still ticking off learning outcomes (and actually just learning awesome things!) but we were doing so at a pace that suited us all.

    The flow of our days reflects the flow of our lives and the flow of our learning is the end result of it all.

    Even if you don’t have chronic illness, know that the seasons of life come in various shades and colours and at times, catch us off guard. Over the years we have had seasons of pain, of depression, of post-diagnosis and needing time to get our heads around things. We’ve had seasons of sorrow and of new life, of worry and of hardship. We’ve walked out seasons of adventure and travel, of celebration and of death.

    At home, our kiddos have experienced all these things right alongside us. They are doing life with us and get to see the seasons of life in all their beauty and fragility.

    Maybe right now all you can do is feed your kids a bowl of cereal for dinner. Don’t worry. This season won’t last forever.

    Maybe your kiddo is always pulling at you and “neeeeeeed”-ing you for something! I know it’s hard right now but this season truly won’t last forever.

    Maybe you feel like you haven’t read enough books to your child, they haven’t written enough or you worry that they haven’t mastered their times tables.

    Don’t worry, friend. ALL kids learn in their own time. Yes some need explicit instruction and help in various areas. You’ll work out what they need as the days go by. That will come.

    Seasons flow with time too. They help us find a flow in life.

    There’ll be a season where you’ll be able to manage more hearty meals.

    There’ll be a season where you’ll find read alouds less challenging.

    There’ll be a season where writing comes more easily to them and you notice they actually enjoy it.

    Time.

    Seasons.

    Do whatever you need to get through.

    I pray that if you are struggling today, there’ll be arms that uplift you and help you carry your load.

    I pray you find joy in some small thing.

    I pray that you are reminded that you are not alone.

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    Community Voices

    😂this one hits too close to home😂

    <p>😂this one hits too close to home😂</p>
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    Community Voices

    Not Sick Enough, But I Am Enough! A Post About Validation.

    “You’re not sick enough…”

    I was nine years old when I was diagnosed with a rare blood disorder, ITP, it affected my platelets and required a lot of different treatments, mistakes, and loss. It required me to grow up quickly. My room was in the hematology, oncology hallway at the hospital. The last room on the right side of the end of the hall. I was in the playroom with my grandma, and a friend I had made, we were watching harry potter and painting, when another kid came in. she was a cancer patient, I could tell because she had lost her hair. She had her mom with her. We started talking, just playing and painting when I noticed a blue pin on her shirt.

    “What’s that?” I questioned,

    “Oh! That’s from my trip to Disney! Have you ever gone?” and she proceeded to tell me about her trip. Just then her nurse came in to check on her.

    “I’ve never been there, how did you get to go?” I asked, I had heard of organisations that granted wishes before, that funded trips and granted wishes to sick kids. As she was talking about how fun and amazing her wish was, I grew a little jealous,

    “Maybe I’ll ask if I can wish, too!” I smiled, hopefully. Looking back up at the TV, the movie was getting good.

    “I don’t think that would work…” her nurse smiled at me strangely.

    “Why?” I asked, I was sick, wasn’t i?

    “You’re not sick enough…” she sighed in exasperation. That made it even worse. After I left the playroom with my grandma, my mom and sister would be back soon. They were at the performance I was supposed to be in, but I missed that, because I Was really sick! I felt miserable, I was sick! My life was a constant roller coaster of blood draws, needles and pain. I was bleeding most of the time. I was hooked to an IV pole all day. I was on chemotherapy used to treat lymphomas, it made me get terrible migraines, and I was constantly throwing up after. I was on another drip called IVIG, the doctors said it would help. it didn’t. It just gave me migraines and made me puke. I was also on prednisone. It was a poison cocktail being pumped into my veins for one reason. I was sick. Life was unfair, it was scary, it was painful. And now? Someone was saying, “not sick enough” . I felt invisible, alone and was hurting.

    Then, As time went on, I returned to school when my platelets were high enough, my health was better, but kids did not understand. How could they? A tumble on the playground was fine, paper cut? No problem! But me? Inside recess, no P.E, no running. No jumping. No kid.

    Why? Why wasn’t I sick enough? Why was I not seen? I may not have been sick enough for a Wish. but I was sick enough for validation. This experience has left me with medical PTSD and mental health issues. Depression and Anxiety go hand in hand with their friend, PTSD. so here I am. 15. almost 16, still fighting, still hurting and still growing, and if you are a survivor or still fighting your battle, I see you, you are beautiful, you are amazing. I may not have gotten the validation I needed then. But I hope this helps. We are stronger than our illness. tougher than the needles. Louder than the beeping from our IV poles.

    We did it, and we are doing it. We are warriors.

    PS. I have recently started a trauma program for my medical trauma and it has brought up one persistent thought,”I have been invalidated for along time! i deserve more!” It also has brought up an endless stream of painful memories, like this one, and to those who are reading this, I hope you have found this validating… I see you, and though I may not know you personally, I love you, I care for you.

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    Community Voices

    deeply annoyed #ImmuneThrombocytopenia

    I have Medical PTSD related to #ITP ,I know that I should be relived and happy to be in my sixth year of remission when other are not, but the anniversary of my diagnosis is coming up and everything that I've worked to mask, is coming up again! worst of all is my memory pain... I don't know what to do! has anyone dealt with any of this?

    Community Voices
    Fern

    Daily Drill of Lupus Warrior

    Hello!

    I’m here to share about my daily grainy bits as Lupus Warrior.

    My life with medication started since I was 7 when I was diagnosed with ITP (dangerous level of low platelets count). I only short happy memory of my childhood which didn’t involve of hospital beds, needles, drips, doctors, nurses and the smells of medicine. I love the sun but it became my fear after that experience. I collapsed during a morning assembly. That morning sun was burning and my vision was flickering before everything went blackout. I could here people shouting and the bumpy ride rushing me into emergency. The next moment I opened my eyes, I found myself laying on the hospital bed with family surrounding me. I remember the expensive medical bills that my parents had to bear with private hosptial in order for me to get well. It was a hard time for us as family.

    Just when I thought I finally getting rid of steroids, I found myself developing freckles on my cheeks (I was loving back then) showing off to my friends proudly. Until one day, my doctor told me it was Lupus (not freckles but Butterfly rash) one kind of Lupus symptoms. Since then, both of my kidneys were scarrred attacked by my immune system. I was devastated with the news. My hope to cut ties with hospital, medication just shattered in pieces. I never like taking steroids because it made my face round and my body feel bloated. Moreover now my kidneys were damaged. Due to the high cost of private medical bills, I was transferred to government hospital. At least, my parents can feel more ease with lower cost. I was put with the care of paediatric unit for about 7 years after that.

    One day my doctor used a special tool to look into my eyes. They found white spots on my cornea. It was cataract they said. Later I found out Cataract is an eye condition usually developed in older people. Yet, I have it when I was just merely 12 years old. My vision was quite sharp as I recalled during my younger days before Cataract. Apparently, it was the side effect from high dosage of steroids, not to mentioned I been having it since 7 years old. It didn’t really bother me until one day when I couldn’t see things properly. My vision was so blur that I could hardly tell the time from the clock hanging on the wall of my house. Even the subtitles on the tv channel was showing double vision. I was forced to wear sunglasses to attend classes. My friends looked at me oddly, I could hear whispers around my back. I felt embarassed to look at them and I had to explain it to them like I was all coool about it.

    Today surviving 23 years, I am going through perioneal dialysis after the annoucement of renal failure last year September when I was very ill with shingles on my face. My life at 30 has took a detour and I’m embracing it everyday!

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    # C - diff

    <p># C - diff</p>
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