A Winning Heart
Welcome to A Winning Heart conversations about being awesome with a disability and raising awareness at the same time and absolutely Yes sometimes you have to say F…..CK you to your own mindset and especially your disability!
A Winning Heart
Living with CP: My Honest Journey
Managing health challenges with cerebral palsy requires resilience and support, especially when dealing with recurring C. diff infection while pursuing educational and spiritual goals. Despite the chaos of unstable care situations and upcoming medical procedures, I'm committed to expanding my podcast and preparing for a communications degree that will help me better serve the disability community.
• Currently facing challenges with caregiver staffing due to post-COVID labor shortages and low agency pay rates
• Scheduled for a fecal matter transplant (FMT) in August to treat recurring C. diff infection
• Planning to return to school on August 18th to pursue a communications degree
• Working toward becoming a priest in the Episcopal Church to serve people with disabilities
• Continuing to develop the podcast while navigating health and care challenges
• Will reintroduce hosts and format in next week's episode
If you're interested in disability awareness or want to share your story, find me on PodMatch to collaborate, or invite me as a guest on your podcast to help educate others about cerebral palsy and chronic health management.
All your family’s pressing concerns and questions, answered in one place. Mike...
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welcome to a winning hunt, you guys. Um, I want well, I should get on here and say my house is care, is stable, but the way it looks right now, I am a mess. I am a mess because I don't have enough care to take care of me, and so and yes, we're working on that we're working on that aspect of me to take care of me. When I say take care, I mean help me with my daily needs. I don't mean help me with my spiritual needs, help me with my emotional needs. Actually, that's not true. Help me with they do help me with my emotional needs in a sense, but what I'm primarily talking about is helping me with my daily needs, and so we are working on that.
Speaker 1:Aids are a very interesting process, and I'll just are a very interesting process, and I'll just say to those of you who aren't AIDS and to those of you who know AIDS and to those of you who work with people that have AIDS just keep them in the ashrams and prayers, because what I'm finding out is, after COVID, no one wants to work. No one wants to work. And there I said it's public knowledge. And there I said and I'm about to say something else that is public knowledge, that these agencies pay pittance to these aides. So either you love your job or you're in it for the paycheck. I hope you love your job because there are some of us that are trying to live life here but without help. To kick AIDS out of my house for purposes of vaping that is public knowledge and the agency knows that and purposes of vaping. I said yes, I said vaping, and vaping as in smoking, drugs, vaping as in drugs. So that was fun. Dealing with a vape pen on my couch and watching they do it. That was fun, and so I am trying to.
Speaker 1:That being said, I, with all the interesting chaos I have going on in my life right now, I am planning to go back to school in August August 18th, I'm planning to start school. August 18th I'm planning to start school. I have to get rocking and rolling on that as of tomorrow because, yeah, I have to get rocking and rolling on that. And, unfortunately, transferring transcripts, the system didn't work. So the reason why I'm going back, to make my podcast bigger and better.
Speaker 1:But I also want to focus on people with disabilities as a priest, not necessarily to help people with disabilities, but be one of their own to encourage them to open their eyes to their faith. Open their eyes to their faith. Basically, I am going to become a priest after I finish my degree. I have spoken publicly to my church about this and they want me to do it. It's going to be a long process but I'm going to email them in the next couple weeks and say any updates from the bishop to me. As far as me becoming replaced, but right now I'm focused on getting a degree in communications and because I want to make my podcast bigger and better and, trust me, when I become a priest and when I get ordained, it is going. I'm still going to have this podcast because those of you who can't make it to church can't do anything but listen to it online.
Speaker 1:And yes, I've been in those positions. I have been in those positions too many times where my body won't allow me to go to church. When it does, so lately with my health condition and Cdiff mainly C-diff, not necessarily my leg, not necessarily me and my knee's getting better. My knee is I can slowly bend it, slowly bend it out, and my knee is getting better, but it's going to be a year post-op for it to be completely better. In the meantime I have to call PT and get that reset up again. But that's beyond side notes.
Speaker 1:And so with C diff it's going to be interesting because I have to have a fecal transplant, which it's either people don't support me having a fecal transplant or they do, and I am lucky because half my inner circle supports it. So basically, what is going to happen? Fecal matter, fmt, fecal matter transplant. That means and it wakes me out and TMI. I'm sorry, but that means I have to get stool transferred into me to cure my infection. So I don't know how well I said this last week publicly. I know how they're going to do it. It's either going to be Enma, reverse Enma, or it's going to be um, a colonoscopy. Now if it's a disease control says in Arizona, then we will decide whether it's going to be an enema or a colonoscopy, going to be an enema or a colonoscopy. But either way I have to get this done because my gut is not happy with me right now.
Speaker 1:And why they do it is because of reoccurring C diff. Now C diff is diarrhea. It's actually an infection that shows up in the diarrhea. So for those of you who have heard of C diff and for those of you in medical field who have heard of C diff and wanting to know what it is or what it was. It's an infection that shows up in the diarrhea. It is nasty. I wouldn't recommend you deal with it at home, like I did. Nope, if I knew what it was other than a stomach bug. If I knew what it was back in April 27th, I would have gone straight to the emergency room from church, but no, I didn't. We ended up doing that. I thought it was the stomach bug. Well, food poisoning which I have had after C diff is completely different than C diff.
Speaker 1:So, and yeah, so me going to school. Number one, it will keep me busy. Number two, it will keep my mind off the chaos of CP. And, yes, I'm going to get a tutor to help me with my homework, because my comprehension is wonderful. I could comprehend things like this note them all. I can type emails like this. Note them all. It's just the reading of textbooks that I have trouble with, and so does Danielle, due to our disability, so I need things read to me. Our disability is cerebral palsy, by the way, if you guys haven't realized that and I will be, because we have a lot of new listeners. I will be introducing ourselves again on next week Because, yeah, I can't believe I have to wait until August to get this surgery procedure.
Speaker 1:I shouldn't call it surgery, even though it is procedure done. I just want to be healthy again, you guys. I just want to be healthy again and C diff is knocking the wind out of me. But C differential is knocking the wind out of me and the reason why I call it C diff is because that's a shorthand for C differential. And C differential is a bacteria in your colon. It lays dormant in at least in my case, it lays dormant in the colon.
Speaker 1:I picked it up from a rehab center. It didn't wear its ugly head until May. Actually, it wore its ugly head in April. I stayed home for a week dealing with it and then by the time I went to the hospital, it just was nuts. So, as I said, I'm going to have surgery. I'm going to go get my degree in communications. So you guys can quit saying when are you getting this degree? When are you getting this degree? When are you getting this degree? You guys have caught up with the wild journey of CP, hopefully in 2026.
Speaker 1:No more surgeries, no more hospital stays and stable aid care, which that's always an interesting show in itself. Stable aid care is always an interesting show in itself. So the eyes that I don't have stable aid care right now to those who are my aides, have been my aides, will be my aides. I'm very grateful to you guys. But right now, since post-COVID, no one wants to work and no one wants to be laid for anyone. So that is that.
Speaker 1:I am working on my podcast. Still, I am still. I just reopened PodMatch so you guys can come and find me on PodMatch or you guys can invite me to be a guest on your podcast to share my story about surviving C-differential and educating guys about cerebral palsy, because all you guys want to do, including the priest at the Episcopal churches in Arizona, is want to be educated, want to be educated, want to be educated, want to be educated, want to be educated, want to be educated. And so it's my calling to educate you guys and it's my great joy to educate you guys and it's going to be my greatest joy to be involved in the Episcopal Church in a deeper way than I was planning on it originally. But yeah, yeah. But first we got to get my health organized. Second, we got to get the degree organized, and then the Episcopological church. Here we come.
Speaker 1:So health comes first and my stomach still feels icky, even though I'm on antibiotics for C differential. Even though I'm on antibiotics for C differential, yeah, until the fecal matter transplant, fmt, my stomach will still feel icky. The amazing thing is, people think I have enough energy now to sink a ship and I said, well, I said to someone this morning, and someone knows who she is, imagine after the surgery, imagine after the fecal matter transplant and how much energy I will have gone. I mean, I have been sick since February. My God, I've been required to help since February. Now the help is starting to go away at night, finally, thank god. But um, so it's my life. It's a little bit of a mess right now, but I'm still doing what I can to support you guys and it's all good.
Speaker 1:It will be all good as of August because of the fecal matter transplant happening, yay, which yay will restore my gut health, which yay will put me on track to healing so I can at least pay attention in classes. And so small, that is my main project, along with many other projects due to the 4th of July being last Friday and so, due to the 4th of July being last Friday, I couldn't get anything done. So that transfer, getting transcripts over to Grand Canyon University, is going to be my main project. So if I'm a little MIA in August, yeah, and if Danielle's a little MIA in July, that's because we are taking time off.
Speaker 1:If I'm a little MIA in August, that's because I'm having surgery again and that's because I am going back to school like a crazy woman. Going back to school like a crazy woman went through over the cuckoo's nest, went crazy along with healing her gut. I'm crazy, I know I am, but Danielle's shaking her head yes, as in, yes, you're crazy to have surgery and be going back to school, but it is what it is. I mean, well, you're busy in July, yeah. So we are both crazy. Well, we are both crazy.
Speaker 1:Well, welcome to the world of CP. You guys, cp gets crazy. Yeah, when people see me taking off, they're like where are you going? Where are you going again? And yeah, as soon as I get my fecal metal transplant, I can be a lot more independent than I am now, but it is what it is. A lot more independent than I am now, but it is what it is. And so let the craziness begin, let the craziness still.
Speaker 1:And, as I said, my main project tomorrow is getting the transcripts for school organized and getting the festivals organized. And yes, that is my main project and I will keep you guys updated on school. I know you will be looking for me on that. I will also keep you guys updated on when the actual surgery is. So yeah, but I'm pretty sure it's a day in, day out thing, because colonoscopy for anyone is a day inin, day-out thing.
Speaker 1:But I don't know if they want me to clear myself just for a normal colonoscopy. I don't know how this is going to work, hopefully. Well, option A is an enma, option B is colonoscopy. So hopefully they can do the enma. If not, they can do the colonoscopy. So hopefully they can do the NMA. If not, they can do the colonoscopy. If not, and I have to do pills, I will do pills, but I will just be grumpy about it because the pills are absolutely disgusting. I draw a line on pills, but if pills are the only option, I will be grumpy about taking my pills and doing it. But I need to do this to prevent reoccurrence of C diff. So that's my next project.
Speaker 1:But my next project that's in monday is monday being july 7th is um, getting transcripts for school and doing all that and so, yeah, but I'll keep you guys updated. I'm not going anywhere, so I'll keep you guys updated and we will see you next week. Yeah, oh, what the cute blondie said. Thank you for following us, you guys. Thank you for following us, you guys.
Speaker 1:And we are going to introduce ourselves again next week and Danielle may have will probably have her iPad, because iPad is easier than speaking. So Danielle will have her iPad, but her iPad will be rocking and rolling, so you may have to listen to the episode I will be talking about. My day, oh geez, play Camp is next week. Oh boy, oh boy. Okay, so luckily we're bringing the iPad Because, yeah, danielle, tired speaking doesn't help. So, yeah, well, welcome to the craziness of CP and we'll see you guys next week. And next week we'll introduce ourselves again and see where that craziness goes, and I will keep you updated on school and keep you updated on the fecal matter transplant, fmt for C, diff, and so I'm going to let you guys go, I'm going to let Miss Danielle go, and we'll see you guys next week. I'm going, you guys go, I'm going, miss Danielle, go and we'll see you guys next week. Bye, you guys, bye.
