Telehealth Appointments and First-World Problems

You know that pesky saying – the grass is always greener? Don’t you hate it when you have to admit you’ve fallen prey to that belief? 😊 Folks, I’ve been wishing for telehealth appointments since my son was little. Sitting on the ‘sick’ side of the pediatrician’s office with other children open-mouth coughing was never my cup of tea. Fast forward to my life with MECFS and telehealth appointments became even more appealing, so much easier, so much less exertion. Due to Covid-19 I’ve now had a few of those telehealth appointments I was longing for, and have at least a few to go. They are indeed less exertion, less energy, and less of an inconvenience for my partner to get work off, take me, push the wheelchair. That part of the pasture is indeed greener.

But I’m here to tell you, I’ve got first-world telehealth problems. Unfortunately, my telehealth experiences haven’t been all roses and green pastures. Let me preface by saying, maybe this is because I’m awkward just keeping it real, maybe it’s because I’m introverted, I’m not sure. But what I am sure of is that since MECFS decided to try take over, phone and video calls are difficult for me, cognitively. From what I understand, this is a common symptom of fibromyalgia and MECFS. The nitty gritty is, I now have several telehealth appointments under my belt, and I want to talk about them.

One was a phone-only appointment with a new specialist, and in my opinion, it was so awkward, and underproductive, not because of the doctor, but because of me. I didn’t ask questions like I normally would have because my brain simply wasn’t populating them, and the print outs I normally bring and show doctors weren’t an option. Luckily, I do have a follow-up in June so hopefully that will be more productive.

My video appointments have been better, because it’s an established relationship, but even still the screen will intermittently go bonkers with pixilation, and it’s distracting. Don’t get me wrong, I’m thankful to have had the appointments but they just haven’t been the same.

To be fair to the whole telehealth experience, I’m so tired of explaining my symptoms to new doctors (moderately terrified of their response because of bad past experiences I think they call this medical PTSD) that I now print lists out and hand them over in in-office appts., and that’s probably one of the most difficult parts with telehealth as I can’t do that now. If I didn’t need to hand over lists the telehealth experience would surely be better. I also don’t have the energy to list all my symptoms, while typically watching their eyes glaze over (it’s happened one too many times), so the list is the perfect solution to that issue. The list means they don’t have to pretend to listen to me, instead they can pretend to read the seemingly never-ending list instead😉. The other part is trying to explain your illness to a doctor that has little to no experience, without any backup articles or doctors’ letters. Recently I was told, “POTS is common with MECFS (true) but once your Rheumatologist gets the MECFS under control the POTS should clear itself up (not true, but dreamy if any of that could happen!!).”

How do you explain to someone over the phone that their lack of knowledge with regard to your illness is incorrect, how do you hand over documentation from organizations and doctors to show the nature of MECFS? You don’t. Well…I didn’t. I’m so tired of explaining my illness to health care professionals that should know something about it, so tired of begging for care, so tired of doctors not checking the daily patient roster to see what the ailments of the patients of the day have and then at least googling the diagnoses if they are unfamiliar. I won’t pretend to understand how doctor’s days go, but if I was a doctor, I would at least try to familiarize myself with the general understanding of the illnesses my patients have, but … that’s just me.

I’ll close by saying, believe it or not, I’m very thankful for health care. I’m very thankful for where I live, and the types of doctor’s I’m able to see. I’m thankful that we are no longer losing lives to things antibiotics treat. I’m just venting and sharing my learning experiences. Next week it’s supposed to be in the 80s, so I’ll have something new to go on and on about, and it too will be a first world problem. Thank you for stopping in today.🌸

Stay safe please! So far everyone at my home is okay, hoping everyone at your home is okay too.

A few more doodles. I’m trying to use doodling as a stress reliever this month and it’s going pretty well.

16 thoughts on “Telehealth Appointments and First-World Problems

  1. I am so very sorry you have to keep going through the whole – here let me tell you all about my illness and symptoms and you pretend you care! I’ve been there and don’t that a lot. It’s exhausting and soul crushing……….but on a happier note, your lighthouse painting is outstanding!

    Liked by 2 people

  2. My response is kind of off subject. Here in the midwest when we have hit the limit with our doctors capabilities many people are referred to mayo clinic. Has anyone suggested that to you? Maybe not an option at the moment, but from my understanding most have received some help

    Liked by 1 person

    1. Hi 🙋🏻‍♀️ I have had people suggest mayo, but not the correct people I guess. I knew this year would be rough because I switched PCPs, which meant some specialists would change. What I didn’t know was that it would be handled online. Thank you for the recommendation. I’ll bring it up to my PCP next time. Hoping you are well as can be! This is certainly a generally stressful time for all of us chronically ill people. So ready for it all to be over but it doesn’t seem like that light at the end of the tunnel is shining brightly enough just yet. We’ll get there though 💪💙

      Liked by 1 person

      1. Good luck sweetie! Ty for sharing your experiences. I have met with one doc over the phone but it was no biggie because he’s been my doc for over 25 years. The foot surgeon is a different story. No choice but to see him in person every couple of weeks since december. (yes Im still in a cast and a wheelchair)

        Liked by 1 person

      2. So in the spirit of honesty, yesterday’s appointment went better. 😊 And…oh gosh, that’s a long, long time!! My mom spent many years in a cast, pain in the tuckus. Hoping today is totally uneventful for you (something I could only say to you and it’s okay… no falls, no breaks!) 💙

        Liked by 1 person

  3. Ugh. So what’s the outcome, is there anything else for you to try, any suggestions they’ve made? I totally get where you’re coming from with having to go over it all again each time to a new doctor. My anxiety is through the roof each time because like you say, it’s knowing we’ll likely have to fight to be believed and we’re already wound up with how we’ve been responded to in the past, and it’s horrible and it’s exhausting. Going through similar-ish with medical calls at the moment and it’s enough to make you want to throw the towel in and give up. But your health is worth fighting for, so it can be good to rant and vent some of it out because it really does become overwhelming. Medical PTSD? Doesn’t sound too far off what happens! I wish your June appt were a little closer but I’m glad you’ve got it scheduled in nonetheless. Sending lots of love your way xxxxx

    Liked by 1 person

    1. Thank you for your compassion, Caz💙 Most are rescheduling after telehealth appts to when we can meet in person.

      Hoping you’re having a better go in the future with it all. Such chaotic times right now. I think we’re all being thrown for a loop. What seems to add insult to injury is that none of us chronically ill WANT to be going or dealing with doctors at all. We just want to be well. So it can feel like trudging up hill. Sending you wishes for better days and easier experiences with medical stuff 💙

      Liked by 1 person

  4. Sorry to hear about your telehealth appointment – my last telehealth appointment with my primary physician was a disaster, he could barely hear me over the phone, but of course I still got charged a co-pay. I’m hoping the next telehealth appointment I have scheduled goes better. And I’m also grateful for healthcare – I know these are first world problems, ultimately!

    Liked by 1 person

    1. Hoping your next appointment is much better! My last one was one for the books and not in a good way, but onward we march. Thank you for stopping in and sharing your experiences. 🌸 It helps to know I’m not the only one who is having a challenging time with telemedicine. Take good care 💙

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  5. That’s interesting to hear you struggle with telehealth. I’m the opposite – in person appointments I’m confused, overwhelmed by the heat/sound/bright lights/people, can’t get my thoughts together, and generally forget to discuss anything I really want to bring up. At home I’m in my element! Things work so much better for me. And I feel safer.

    Liked by 1 person

    1. I thought it would be that way too. But the mystery has been solved. In two parts -I’ve been attempting these alone, and I need backup because two – I’m terrible at asking for help. And I’m also no longer quick enough to speak up or have thoughts on the fly. So going forward all appointments will be accompanied by either my partner or son. The last one, which was very important, went terribly. Not walking down that road again. It’s an absolute shame that professionals need to be held accountable by a well person when a disabled person is clearly struggling and instead of helping they mow them over. Sigh… Trudging on.

      I do have to say that it’s good to read that you find comfort in the home appts. I think anytime a disabled person’s life can be made more comfortable is an absolute win 🌸

      Liked by 1 person

      1. That’s a great plan. I’m sorry your last appt went so badly. And yes it is a disgrace that we need to validate our experiences with a healthy person (often a male too…). Keep strong my friend.

        Liked by 1 person

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