Clostridium difficile

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    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


    Why it is impossible to “just let go” of your trauma

    I understand my #Trauma happened in the past–you don’t have to tell me. A sarcastic and authentic comedy about #Trauma , illness, and life-One Mississippi, helped me find the words to describe why I can’t “just let go” of #Trauma .

    #Trauma is always with you like a shadow, following you around or over your shoulder. It will always be a part of who you are and what made you but it doesn’t have to be you–it doesn’t have to control you. You have to learn how to take back control and discover who you really are and give yourself some grace.

    I have recently finished watching a 2015 series that was cut too short and recently put up on Hulu called One Mississippi about a woman that has to relive and uncover a lot of #Trauma , especially family and sexual #Trauma while dealing with the death of her mother, recovering from #BreastCancer , and struggling with #Clostridiumdifficile (colon infection). It is based on the true story of comedian Tig Notaro and she plays herself.

    Through the series she has such a sarcastic sense of humor in a pretty honest way while confronting her past and dealing with her illnesses. She has a live radio show where she talks about these things as she lives through it all. It is so authentic, relatable, and hilarious.

    There is a scene in episode four of season one, where she confronts her past by talking to her stepfather about how she was molested under her mother and stepfathers roof for years. Her stepfather, Bill tells her to let go of the past because it has been over thirty years and the man that hurt her is dead. Tig doesn’t really respond to this, she ends the conversation and leaves.

    In the next episode, Bill tries to fix things with her as he has noticed tension in their #Relationships since they last talked. Tig and Bill start to talk and pick up the conversation sort of where they left off. One of the powerful quotes from this conversation is when Tig says, “You say to move on. Why not move on from the good, too? Like when I learned to walk or birthday parties. Or when Remy (her brother) pitched a perfect game. The good is in the past too, Bill. You can’t pick and choose. Every chapter matters.”

    Bill says, “This is nonsense.”

    Tig’s response is wonderful, “You don’t seem to comprehend the impact all of this (#Trauma ) has had and continues to have on my life and Remy’s.”

    Bill says that they turned out fine. Tig then talks about impacts of childhood #Trauma by saying, “What is fine, Bill? Remy lives in the attic and hasn’t had a girlfriend since high school. I can’t commit to anyone and I have no place to live. We’re all paralyzed. This house is a pain vortex.”

    I have been told many times to let go and move on from my #Trauma . Finding words to explain this is not easy and that is why I understood Tig when she just left when Bill first told her to let it all go. But the fact that she was able to come back and talk to her stepfather about this and find the words to describe why she can’t let go was fucking amazing. I felt like I had found some words to help myself describe why I can’t let go either. It is not easy to talk with someone who has not gone through what you have about letting go of #Trauma , they could never understand.

    I felt connected to Tig in those scenes as well as many others in the show. Tig taught me that you should always be true to yourself in every moment, even if it makes others uncomfortable.

    Recently, I spoke with a friend about these episodes and how I have heard so many people tell me to let go or move on when they have no clue what I have felt and experienced. My friend told me that she sees it as learning to walk alongside the #Trauma .


    This space for rent...

    I have found that this app is way too triggering. There is no way to avoid the posts that trigger. This app has also shown how very few medical professionals are actually professional- according to posts.
    Why must I see every dang post there is? There's very little explaining that most hastags are general topics, not any specific group. But it makes no difference because I see folks posting to a group and folks with just topic hashtags and they all end up in mainfeed. SMH there's no way to avoid posts I don't need to see!! It seems it makes no difference if you post to a specific group, I'll still see it in my feed even though I have not joined that group. I'm glad folks feel they are getting something out of this but I feel it's doing more damage to others. But nothing will change, because being the only app like this some must be so proud that they can't see the flaws. It's messy. Being the first means there is a responsibility, particularly to the users of this app. I'm sure this falls on deaf ears. I can no longer keep being subjected to every trauma. Besides, the fact that there are people in this world that will go out of their way to harm you, this app makes it too easy for those kinds of people. Good luck folks, careful what you share.


    Am I Allowed to Feel?

    This is long. So bear with me.

    So a majority of you know my brother in law was diagnosed with Stage IV colon cancer last September. He had four rounds of aggressive chemo, went back to MD Anderson for a scan and the cancer had reduced, so they put him on a less aggressive and intense chemo for the remaining four rounds. After those four he went back to MD Anderson for another scan and the cancer had spread. They ordered eight more rounds of intensive chemo and told him he has about one year if he didn't take well to the chemo, two if he did. He had his first round of the new chemo three weeks ago.

    Since that first round, he has had agonizing abdominal cramps, vomiting and diarrhea. He has not been able to eat or drink. He was in and out of the ERs, including MD Anderson, his last ER finally admitting him where he remained for roughly nine to ten days.

    While at Hillcrest Main in Tulsa, during his time there they constantly had fluid IV going to him because he was so dehydrated. His potassium was super low so they were pushing potassium. He was ordered a feeding tube but he couldn't take the one down the nose and the surgeon said for his type of cancer, the feeding tube surgery had a high fatality plus she did not believe it would help. So they skipped that, did a colonoscopy and a endoscopy. His throat and bowels were swollen. They took a sample during the colonoscopy to test for C-Diff bacteria. The doctor said it looked, smelled, acted, etc like C-Diff but they could not start medications for it until they had a positive lab. They stated it would take 2-3 days to get results.

    Guess what? They DESTROYED the sample. They never tested it! So he has to have ANOTHER colonoscopy done. They next day they told him it wasn't C-Diff and it was just that he was in the final stages of his cancer. How can you go from 2-3 days to get the results to "we got them it's not C-Diff".

    He left the hospital on Friday or Saturday and is home. The plan was to get him to MD Anderson (if it was the cancer, they would have seen it on the scan the week prior when he was there) but he is too weak to make the trip. He has decided to stop chemo and to bring in hospice. He is exhausted and sick of being in pain and just doesn't want to be in pain anymore.

    I am angry at the hospitals for this. I am upset it feels like he is giving up (I know he isn't, he is tired, his body is tired and he is mentally exhausted from constant battling). My heart breaks that my husband will no longer have his brother, my mother in law will no longer have two sons and my sister in law will no longer have her husband. I feel guilty and that I have no right to be we upset or cry as much as I have the last two days because, I just married into this family. I didn't realize how much I would love having a brother in law and sister in law that would I actively want to participate in their lives.

    I ask that you all pray for my entire family of in-laws and me. We are going to need it. It's going to be a rough time during and for a bit after. I love you all. ❣️


    4am Thoughts

    I wanted a opinion on something. i’ve been really struggling with my health lately, and everything has gone to crap, all the way from catch C.diff for the 4th time, to a pain management doctor who is unprofessional and unsympathetic. i wanna get all of these things off of my chest, so i’m thinking about starting a podcast. I want to share my experience and my journey to help guide others. <3 #MentalHealth


    #RA #ChronicPain #HS #Hypothyroid #rayauds #Depression #suicide #patientAbuse

    I'm deleting this app. I can no longer play pretend with folks. I am so tired of finding that everyone is treated so differently from my experiences. I have never been offered any treatments other than methotrexate or humira- NEVER asked about TB, Never asked if I had any abcesses... yeah right as I am making the appointment to learn how to inject humira, I mention the dentist appointment I have and suddenly I cannot take humira. Not a single Dr. has ever asked the pertinent questions required. That was about 5 years ago. Nothings changed. I've had my rights stomped on and given no options to improve my quality of life. Everything I've ever had I had to ask for repeatedly. Doesn't matter what my labs say because I look too healthy. My last Dr., a gaslighting so and so that only cares if she LIKES you... didn't have any of my info correct. I tried to correct it but it didn't matter. I am always AMAZED to hear when folks are prescribed oral steroids, I was told they wouldn't help me - but then the lowest dose for 5 days probably wouldn't do much. I can't come here anymore and continue to confirm that I am not treated with any compassion or respect by my Dr's. The last Dr lied to my face trying to convince me that topical clyndemyacin ( I'm sure the spelling is wrong) did NOT have the same effects as oral - as in C. Difficile that I already had once! So I got it AGAIN. Just to try and show cooperation I did this and the woman didn't apologize- nothing. In fact it just got worse. I have NO SUPPORT system so I have no fight in me. I'm tired of still feeling completely alone HERE. Here on this app. Where I see the same kinds of posts over and over by the same people. It's more depressing than anything in my life. I can't find a single person that will treat me like a person. If I have to see another post full of platitudes and nonsense that negate everything I deal with , the very literal abuse at the hands of medical professionals ... why do I stick around? No one even bothers asking me anything, they think looking at me they can ASSUME they know me or my lifestyle. No one asks. No one listens. I have real medical issues that never get addressed. I guess I don't have the same rights. How about an article on when to sue for malpractice or resources for folks that have none, not hotlines that cannot effect any change... I'll never call. The state allowed me medicaid to pick up where Medicare leaves off and that's ALL. I shouldn't feel like the only way to make things better is to die. I have No one. I'm tired of feeling like I don't exist and nothing I do matters. Oh and kudos for offering some form of gift card or payment as incentive to join, really feels like exploitation of the impoverished. Being disabled is hard enough without being poor, but being poor and feeling baited by the CHANCE of compensation is sick.


    Need some feedback pls

    So, I want to change drs after only a couple visits- this is a pcp not a rheumy. My previous Dr. "dismissed" me as a patient after 8 years- 8 years of ignoring me, talking down to me, comparing my pain to hers...I should have left years ago. From age 10 Dr's would blame my weight for everything, never bothering to run a single diagnostic test.
    So I grew up with #HidradenitisSuppurativa and by age 13 RA appears. At least the Ortho surgeon I saw then took x-rays, and did inform me of how thick my bones are yet not in my joints- and did say I had a "joint growth disorder" which supposedly explained why the cartilage in my knee was so degraded. But again, told to lose weight or the alternative would be metal rods in my legs that would be very painful for the rest of my life (yes, he really said that). I have learned to ignore pain from a young age so I never appear to be all that disabled. Sound familiar? Between my history with drs,neglect growing up and a 5 year relationship that was a sham- I don't trust anyone and I have no support system.
    I decided after my last dr that I would no longer give so many chances , 3 strikes and you're out. So my current dr has 2 strikes. He must not have been listening when I mentioned having c diff twice, when he suggested a round of antibiotics ( just because it would probably help??? I know some think that RA is just from rampant infection but I don't think prescribing them before any blood tests or diagnostics is a good idea). Strike 2 was trying to fill a prescription - celebrex- all I have for pain and inflammation , and nothing for 2 days. When I called drs office I was livid. A staff member that had been fired had screwed up. But I was being blamed for being upset, and not being reassured that it wasn't my fault, that it wouldn't happen again and my prescription would be called in asap. I yelled but Never cursed or insulted anyone. My next appointment the woman I spoke on the phone with was the check-in nurse that decided to again blame me for getting upset. She knew she was wrong, they screwed up but was determined to shame me. Now I have a recommendation to a dr from another spoonie, but I want to have my first visit be just a conversation. I literally do not want to fill out a single piece of paperwork, just give my insurance and talk to the dr. Is this possible?? I want to explain my situation, what's been done and prescribed, what health goals I have, what I've accomplished. I want to get an understanding of their approach, personality, biases. I am totally willing to use teledoc as it may make it easier on the Dr and definitely on me.
    So holler at me spoonies, is it possible?
    FYI- no rheumy will do squat for me due to the 6 roots of teeth that have to be surgically removed that are considered abscesses and prevent me from taking RA drugs.
    TY in advance! Sorry so wordy.


    Fear the cure!

    #ChronicIllness - Does anyone else here have problems taking antibiotics? I was recently put on Macrobid for yet another UTI , one of the very few I can take without allergic reaction. Having had a C.dif infection in my past life, I put off treatment for the longest time, not good for my struggling kidneys- now almost done with treatment, my stomach is protesting each and every " bumblebee" pill I take ( black and yellow capsule) ! I feel the familiar rumbling in my lower gut and am terrified I am going to have a recurrence of the beast, which anyone who has gone through it knows C.diff to be ! My first bout started after sepsis from a lodged kidney stone- I was two hours away from death almost four years ago to the day , spending my birthday in the OR having a central line placed without anesthesia because the surgeon wasn't sure if I would be allergic to it ! After six weeks of iv treatment @ home, it went away for a while but recurred within a matter of weeks! Now,any time I take an antibiotic,there is a good chance I will have it again- the only cure is a stool transplant from a healthy person ,and just the thought of that sends me into a spin - anyone else have experience with this terrible condition that leaves you drained and depleted from constant trips to the toilet ? Not to mention it can be contagious- keeping my bathroom all to myself just in case !


    A Mighty Introduction

    Hello my name is Christopher. I have been scrolling on The Mighty for a few weeks. You are all so brave and strong and I really appreciate all you have shared. It has helped me to learn about myself as well as the world around me.
    My story coming into this world begins with testing for a connective tissue disorder (which is still undiagnosed, but is in the same family as Marphans). I have been in and out of doctors my whole life and escaped accurate diagnosis for a long time. In 2013, I was diagnosed with Gastroparesis after a bout with C. Diff and a year and a half of eliminating possibilities. Fast forward to 2017 and I began treatment for Complex PTSD. Life has been extremely messy since then: Flashbacks, pain and numbness have all become a part of life for me. A lot of hard decisions also have presented themselves with an underlying theme of “you or them”. Here I am today, on this journey into my true self, introducing myself to a community of warriors. I am so grateful for this community, my work and the work of others that have all led me to here.
    A heart felt thank you to all of you Mighty Folks!