Goodbye hospital 👋🏥, Hello “home”🏠

March 2016-Żywiec, Poland 🇵🇱

After 6 long months, October 2015-March 2016, we were finally leaving the hospital to go home 👋🙌🙆🏻‍♀️. Yaaay! That GIF attached above 👆 best describes how I felt 😂! If only I could run… I’m calling the rehabilitation centre a hospital, because I couldn’t see much of a difference, in fact no difference really, and I’m saying home in inverted commas, because a huge part of my heart was in Ireland-my mum, my friends, my boyfriend at the time, and the life I built over a decade living there! Nearly half of my life back then (2015), over half of my life now (2020). The real reason behind this decision was the fact that we needed to take matters into our own hands, especially that they didn’t want to remove my PEG feeding tube (when I was already taking in foods + liquids orally for weeks🙄) nor my trachea-I’ll definitely have a separate paragraph on this only, because it’s a story worth mentioning (read below 👇)… I managed to get them to remove my catheter, as I absolutely hated it, and I was ready, practicing continence everyday after Kate’s departure. My dad would close the tube that was attached to the bag collecting the urine, for a few hours every day, so the bladder would get used to holding in urine. This was the bladder training exercise proposed to me by Kate, and it worked very well! I was so happy to get rid of it! One tube down, two more to go 👍👊✌️

The fight for removal of trachea 🙄👊😤…and trust me it was a BIG, looong one!

I had to keep the trachea to get admitted to GCR Repty-Rehailitation centre, and in my head this was the place where they would remove it. At this stage I had it for 4 months-since October, and yes it saved my life, allowing me to breathe, however it was time to remove it. This tube in my throat, was getting very painful, also disturbing the rehabilitation process. Never mind the second tube in my stomach! Had to be very careful with it, also annoying me and stopping me from doing more in physiotherapy😫. It was March, and since January I knew I was ready to remove my trachea, as well as the PEG feed tube in my stomach, but the trachea was bothering me the most, therefore becoming my priority. I started saying this to my doctor non stop, but she wouldn’t listen, constantly giving me the reasons for leaving it in, and making bazzare excuses, like my breathing not being strong enough, what if? even that the ambulance wouldn’t make it on time if I couldn’t breathe, and as a result I would die! 🙄🙉🙈🤦🏻‍♀️ Finally I got her on board-kind of! I would have to have all tests done for swallowing, and see a laryngologist for a professional examination, so he could determine that I was in fact ready to have the trachea removed, and that it was safe to do so. The day I was impatiently waiting for has arrived. The appointment with laryngologist. I passed every single test and in his opinion the trachea could be removed, but I didn’t know that that doctor of mine was calling all the shots🙄😑🤦🏻‍♀️ she quickly ran to his office, and he suddenly changed his narrative! Of course 🤦🏻‍♀️🙄 Ugh 🤬. Since that day, at every single week at doctor’s rounds I would just repeat myself about removing the trachea, and every time I heard a NO😤! Backed up by stupid, non logical explanations. I could eat, drink, breath, cough, you name it! The scar on my neck was more and more painful, and bleeding because the wound wanted to close up, but couldn’t because of the plastic tube running through it. I can’t express how annoyed and frustrated I was…it’s my body, I know exactly what it needs and feel that I’m so ready for this next step. But I’m being stopped by the medical staff because I don’t have their permission. I mean the main people in charge-my doctor and the main boss right above her. The director of the centre, who would always ask me questions at the rounds. I can’t say I liked the woman, but I definitely let her know that I’m not stopping until I get that trachea removed, as well as expressing my unhappiness each time I’ve seen her. After the rounds one week, the physiotherapist who was always present at the rounds said to me, while smiling: “OMG 😅😂 if only a look could kill” 👀🤷🏻‍♀️💁🏻‍♀️. I guess she got the message 🤷🏻‍♀️😜😂.

I shed a few tears 😢 leaving GCR Repty Rehabilitation Centre, but not because I was upset to be leaving. I was emotional saying goodbye to the people who made my stay more pleasant, as well as the staff that were nice, and took good care of me! I thank them all again now, and I’ll never forget them ☺️💕. Especially Psychologist, Speech & Language Therapists and physiotherapist. Daniela, Ania, Dorota and Asia. Thank you for everything girls, and for always putting a smile on my face! 🇵🇱Dziękuje Wam! 💜💜💜💜🌻🌻🌻🌻

Home sweet home 🏡-March 2016 🇵🇱

I knew I had to leave this place to move on, and get things done ✅. It later turned out that we’ve made the right decision, because once you leave trachea pipe in for too long the wound might never close up and heal😲. So thank God 🙏, or I would be fitted a permanent metal tube in my throat for lifetime😳.

Back in my hometown hospital my dad had to sign forms, stating that we request, as well as take full responsibility for both the trachea, and PEG feeding tube to be removed. Thank God 🙏 those forms could be signed to get the procedures done (my initiative, as professionals didn’t recommend it, nor agreed it was time). I wasn’t concerned even a little bit, I knew well, and felt I was ready. I think that was probably the start of me listening to my body 🧘🏻‍♀️ really tuning in 👂🏼👀. Your body your choice, right🙄!? I was back home! 🥰, but most importantly I was tube less 👊💪👌! It might not seem like a BIG achievement, but for me it was a HUGE step forward, to where I was pre stroke, step by step💪👣.

I will never forget the reasoning of one of the doctors before removal surgery, asking me and my dad: “Are you sure about removing this PEG feed?”… “Why?”… “You know it’s better keeping it just in case”… “In case what!?”… “In case your daughter has another stroke, it would be nearly impossible to insert it back in”… 👀😳… We couldn’t believe what we were hearing! Me and my dad laughed about it later, imagine my dad replying then: “Yeah, it’s better you place a PEG feeding tube in my stomach just in case, you never know I might need one in 10 years or so” 🙄🤣 seriously…where’s the logic in that? Anyway I’m here years later, without any fake tubes in my body, doing just fine. I’m so glad we left that hospital/rehabilitation centre, and that I listened to my body. Still it was a little too late, and that’s why my trachea scar is more visible than some people that also had it. But it healed, and I’m proud of it! 👊💪 It’s my own special “war” sign-a sign of healing 👇

🦋 A scar simply means you were stronger than whatever tried to hurt you. It means the hurt is over and the wound is closed. It means you conquered the pain, learned a lesson, grew stronger, and moved forward 🦋

🦋 My scars tell a story. They are a reminder of times when life tried to break me, but failed. They are markings of where the structure of my character was welded 🦋

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“It’s not who you are that holds you back. It’s who you think you’re not”

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