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    How I Halted CKD and Ditched my MS Wheel Chair: How to Feel Empowered, Energized, and love

    Part 1 of 3 8 YEARS OF SEARCHING

    Shortly after the birth of my third daughter a level of fatigue and weakness set in that I had never experienced before. Severe joint pain, mysterious rashes, IBS, sleeplessness, and even after becoming a veteran in coping with inextricable pain, many trips to the ER with unbearable migraines.

    It didn’t make sense after a life of eating “healthy,” playing sports, and juggling all of life’s wonders with ease. In the beginning of my journey, test after test came back negative. From the doctor’s perspective, I was perfectly “fine”. For years I dealt with debilitating fatigue, vertigo, loss of balance and joint pain.

    I pleaded for help over and over, often in tears. If you have ever struggled with your health and not felt heard, you know what I mean. Next came blaming my physical symptoms on my mental health. “You need to get more sleep.” “You are probably depressed.” “You are too anxious.”

    Ironically, I was in the prime of my life feeling on top the world. I had a great career, a wonderful husband, and three beautiful little girls. I couldn’t (and didn’t) ask for anything else. Somehow, they still insisted I was too stressed. Did you ever have one of those dreams when you are screaming but no sound is coming out? That is how my doctor’s made me feel. The thing is, after you go unheard for so long, your soul starts to die a little and you do get depressed. You do develop anxiety. And you do start to lose more sleep.

    Eventually, each symptom intensified. More meds were given, but still no improvement, just further disease. Over the course of 8 years, I ping-ponged from specialist to specialist. I went through diagnosis after diagnosis. Raynaud’s Syndrome to Lupus, Rheumatoid Arthritis to Neurological Lyme, hypoactive thyroid, and of course all of the mystery symptoms that didn’t fit into a label. Eventually a spinal tap and MRI unveiled multiple sclerosis, which eventually put me in a wheelchair.

    After countless steroids and immunosuppressants, I gained 40 pounds of fluid and even lost vision in one eye. This was when my kidney disease really ramped up. My immune system plummeted to the point where I developed an aggressive tumor subsequently leading to Complex Regional Pain Syndrome.

    The absolute worst gut-wrenching part of the whole thing was not even my diagnoses.

    The worst part was missing milestones in my children’s lives at such an early age. I couldn’t care for them. I couldn’t give them what I saw other children being given. I watched them grow from my couch in agonizing pain.

    Over time my friends disappeared. Who wants to hang around a sick person all the time? That human connection that drives our well-being and provides a sense of self-worth and purpose was dissipating before my eyes.

    To top it off, I was too sick to go back to the classroom and teach my students with disabilities. I became the disabled one.

    Through the years, I was the perfect patient. I followed all of my doctor’s orders, went to every appointment, and took every medication and supplement. I tried every fad from high fat to fasting but still my symptoms became more crippling.

    I was exhausted trying to find relief. We down-sized our forever home. The chronic fatigue I was trying to alleviate was compounded by the fatigue of trying to find answers. The symptoms forced me to redesign my life around feeling unwell.


    I wish I could say that I took my power back and regained control of my health before the night my children had to watch an ambulance rush me to the hospital. It wasn’t until almost losing my life twice in that 2 week stay, having pleurisy in my lungs, a dangerous blood clot in my leg, poor liver functioning, and learning that I had kidney disease so severe that my nephrologist expected the need for a transplant in 6 months, that I finally said enough is enough.

    I needed to HEAL!

    I needed to change my very rigid way of thinking. I needed to put ME first. Mind, body, AND soul! I needed to rethink my priorities. I needed to allow my body to do what it was designed to do…instinctively restore and repair.

    After this crucial realization I knew it was up to me — I had to do this for ME, for the life I wanted and for the life I wanted for my 3 little girls, and my husband to have.

    With this shift in perspective there was a glimmer of hope when a fellow kidney patient shared with me about whole food plant-based diets. I started to research and question. I learned the ins and outs and I learned about the power of my own thoughts, their impact on my body, and how they lend themselves to my success or failure.

    I had what you would call a miraculous recovery. Doctors cal

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    My badge of courage

    Just went through with a double lung transplant 3 1/2 monthsa ago.
    I hope to connect with both pre and post transplant.
    Looking forward to hearing back

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    Travel Agent for Complex Medical Care and Special Needs

    Hi everyone. I used to be on here but I can’t remember my login or the email I used so I am starting a new one. I am mom to two young adults with cystic fibrosis and other health issues. I have RA and other conditions as well. I had to change my career due to the risk of COVID and my son’s transplant not to mention the kids CF in general. I am an esthetician and makeup artist so I touch people’s faces for a living. So during the pandemic I started thinking what I can do now since I am 50+ and worked cosmetics since I was 17. I have always dreamed of working as a travel planner/advisor/agent. I travelled a lot as a kid due to my dad’s work and I picked up the travel bug while I was still in diapers. I found out that due to the pandemic people are relying more on travel advisors more than ever. Then I wanted to narrow down my specialty/niche. I figured it out, I hope. I have had to figure a lot of things out traveling with my kids, especially our son. Meds galore, some refrigerated, vest compression machines(2),, nebulizers, nebs, feed pump, supplemental feed, tubing, feed bags, plenty of snacks traveling, wheelchairs and fluid at all times. I had to research hospitals in London when we went on my son’s make-a-wish so we would know where to go just in case. A plan A plan B Plan c just in case. Then for my sons transplant which we had to relocate for and my daughter’s make-a-wish. These experiences taught me so much, not to mention seeing what my fellow moms would do in order to travel. So have decided to help chronically ill and special needs travelers and their caregivers. Everyone deserves the opportunity to explore this beautiful World and I would feel honored to help facilitate this. I started my business several months ago and found out there is a great need for this. I have been learning so much and have been working with some clients already, some with challenges and also some great family, leisure & luxury trips. I am so glad I made this change. I guess a few good things have come from the pandemic. I have decided to not charge my clients for medical travel advice. I hope to help as many people as I can.
    #Travel #travelagent #specialneedstravel #medicaltravel #sunflowerlanyard #InvisibleIllness #ChronicIllness #CysticFibrosis #Transplant #pancreatitis #ChronicPancreatitis #tubefeeds

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    Dealing with my husband death

    I lost my loving and caring husband last week. He had health issues but the reality was medical negligence. We fought for his life. We wanted to live. Only 53 yrs old. He was waiting for the kidney and pancreas transplant. He was on the list. We were the perfect couple for 30 yrs. Four wonderful sons. 8 grandkids. We miss him. I miss him. God is my strength. But I’m just processing one thing at a time. The most hurtful thing it was a hospital negligence. I saw him alive and he looked me with those beautiful blue eyes and smiled. Next day it was gonna be the caterer surgery to bring him home after a peritonitis and covid(covid was in the hospital) His inmuno sistema was compromised but he was fighting. The love of my life has gone….. my heart is broken in pieces….. my baby. My boyfriend, my dear husband is not here. I know he is in heaven. He was a Christian Man. He believed in God. This is so hard to deal with this emptiness. Every thing in our house 🏡 talks about him. I donated his clothes and shoes. I have a trailer and I put all his cars stuff there . His tools 🧰 are there. My son is gonna take everything because I can’t see none of that. His corvette …. He said Tommy son : take it , I can’t drive this car anymore because I have to take care of my transplant post surgery care….. this is day by day….

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    #ligament transplant surgery

    Looking to have this surgery on my ankle. Anyone out there w tips


    I’m new here!

    Hi, my name is TwistedVixen909. I'm here because I have been having a rough time lately. My daughter has an illness, and will need to have a transplant to survive and has had multiple complications due to her illness. I’ve lost my job, my home, and I’m about to lose my car, and our pets.

    #MightyTogether #Anxiety #Depression #BipolarDisorder #Migraine #PTSD #ADHD


    The Art of Living

    Part 1 of 2 My daughter, Laura was born with #Cystinosis . Laura went through so many struggles medically in her life. Laura was a firm believer in science, in the potential treatments to be found, in making life better for the next person, always happily being a guinea pig for any medical study that came along. She didn’t long for a cure, she longed to live the best life possible. #Cystinosis was just part of who she was, like being a 4’10 blondie.

    In 2017 when Laura’s first #Transplant failed. She quickly began hemodialysis, and it was awful. Laura ended up with uncontrolled blood pressure which made her brain swell. For days, she couldn’t communicate other than to make the “Ma” sound. She was in this spastic body and you saw her fear and frustration in her eyes. She developed #Clostridiumdifficile while she was in the hospital and I quickly learned in the ICU they could not diaper her. Let me tell you it was amazingly gross; the poop literally flew. The #Spasticity that was happening added to the mess. She was scared, you could see it in her wild always open eyes, and she wanted to be touched every moment. We took turns sleeping in shifts so someone could have a hand on her 24/7. The doctors said she may need step down care, rehab type care which was so very scary. As she began regaining her mind and the swelling subsided I walked into her ICU room to see her on her knees on the bed singing “Despacito” at the top of her lungs swaying to her tune. Laura was coming back. It was decided that she would come to my house and live. She and her two dogs came to my house after this hospital stay. It was rough in the beginning. The dogs were wild and Laura was so very confused. She would wake up yelling for me not sure where she was, in some ways like a child. As she came back to herself, she told me when she couldn’t communicate she was in an episode of Modern Family, her mind took her away to another place that was safe from the pain. She could not drive at this time and I recruited people to give her rides to or from dialysis. Hemodialysis was rough. She would come home wiped out, legs cramping. She had minimal energy, sleeping tons, lots of headaches. We were taught to do peritoneal dialysis (PD). We went to classes and sat through days at clinic so SHE could take control of her healthcare. A new port put in and we found out that Dobby (her first transplanted kidney) was dead inside her and needed to come out immediately. She got through yet another surgery and she moved onto PD. She settled into the routine of 4 exchanges a day, every 6 hours, time windows for fun. She could have used the cycler machine at night but she worried how that would affect her dogs and her sleep. Laura valued her dogs and sleep way more than anything else.

    Laura’s life over those few years was rough. She learned to have a clean car so she could do her exchanges as she chased adventure. And she did have adventures, she went to Miami and Los Angeles for festivals, to London and Ireland for two weeks and saw her beloved Harry Potter sets, Arizona, Philadelphia a couple of times, places that I can’t remember because she was always planning her next adventure. She adapted to her new reality which was what Laura was- adaptable. When life threw another curve ball and her foot was fractured and needed surgery. She adapted. Even as a child when she would constantly throw up, she accepted it, made it just something she did and moved on. She didn’t know the words, “You can’t do this” or maybe “you are just too sick or hurt”. Once she figured out how to make her life work around whatever obstacle she started making plans. The girl was a planner. We had so many plans, lists of places to go, people to see.

    But, in October of 1999 Laura was hospitalized and this time was different. when I walked into the hospital room I knew she may not recover. This time might be the one she couldn’t overcome. As the days progressed, she could not even give a feeble thumbs up, her eyes were closed and minimally reactive. I started trying to adopt her bravery, I had to face that my girl may not be able to come home again. Laura didn’t like you to dwell in sadness, she wanted giggles and grins and that was what I needed to give her. On October 15th at 11:30am she left this world surrounded with laughter through tears and boundless love.

    The best thing about Laura was she loved her people. She collected them like seashells, that, I like to think, she got from me. Once she made you part of her heart you resided there forever. And you were lucky. To be loved by Laura meant tons of laughs, singing at the top of your lungs barreling

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