Sea otter Posted November 24, 2023 Report Share Posted November 24, 2023 I am just so tired. Of educating myself about POTS, educating others, even doctors, searching for ways how to help myself, trying various treatments that don't work and only giving me side effects, trying to raise awareness usually without much success. When I think I have some "control" over my body or that is getting better, flare happens. Plus triggers are always somewhere around the corner. I am doing everything I can but I feel quilty, like it's my fault that I am not getting better. I don't want my whole life to revolve around illness so I try sometimes to ignore it. But soon reality hits, as it is affecting every aspect of my life. Why am I writing this? Because I know you will understand. 😌 Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted November 24, 2023 Report Share Posted November 24, 2023 2 hours ago, Sea otter said: I am just so tired. Of educating myself about POTS, educating others, even doctors, searching for ways how to help myself, trying various treatments that don't work and only giving me side effects, trying to raise awareness usually without much success. When I think I have some "control" over my body or that is getting better, flare happens. Plus triggers are always somewhere around the corner. I am doing everything I can but I feel quilty, like it's my fault that I am not getting better. I don't want my whole life to revolve around illness so I try sometimes to ignore it. But soon reality hits, as it is affecting every aspect of my life. Why am I writing this? Because I know you will understand. 😌 Hang in there. We definitely understand. I always say "I quit this job" because the combination of feeling awful all the time, and having to fight so many things (getting appts, getting to appts, getting meds or equipment, billing issues, infusion arrangements…) at the same time is not a "job" I feel like having. There’s not much I can do other than keep working on all of it, but it’s frustrating and draining for sure. Quote Link to comment Share on other sites More sharing options...
Sea otter Posted November 24, 2023 Author Report Share Posted November 24, 2023 1 hour ago, RecipeForDisaster said: Hang in there. We definitely understand. I always say "I quit this job" because the combination of feeling awful all the time, and having to fight so many things (getting appts, getting to appts, getting meds or equipment, billing issues, infusion arrangements…) at the same time is not a "job" I feel like having. There’s not much I can do other than keep working on all of it, but it’s frustrating and draining for sure. Thank you so much for response. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted November 25, 2023 Report Share Posted November 25, 2023 Please don’t feel guilty about not getting better. You are trying your hardest! I hope something changes for you so you can get a bit more contol and have some time to yourself. Quote Link to comment Share on other sites More sharing options...
Sea otter Posted November 25, 2023 Author Report Share Posted November 25, 2023 3 hours ago, Sarah Tee said: Please don’t feel guilty about not getting better. You are trying your hardest! I hope something changes for you so you can get a bit more contol and have some time to yourself. Thank you. I know it's not my fault. Sometimes some family members are putting pressure that I should do something, try basically everything that exist and similar stuff. Like it all depends on me. I understand it's hard for them watching me suffer but they are just adding additional burden on me with that kind of statements. But I know they are also frustrated they can't help. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted November 27, 2023 Report Share Posted November 27, 2023 @Sea otter, it’s hard when people do something that’s ultimately unhelpful, but do it out of concern for you. Maybe you could try to redirect their efforts to help into fundraising or awareness campaigns. I am exhausted too. I have been trying to get my specialist to order me a particular test since August. Last week he emailed me telling me all about how a different test that I don’t need and have never mentioned isn’t available here (Australia). I don’t know whether to laugh or cry or scream in frustration. This is a dysautonomia specialist, mind you, and I seem to know more than he does about this topic. I am going to have to write out for him what to put on the test order. I should get a percentage of his pay cheque! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted November 27, 2023 Report Share Posted November 27, 2023 @RecipeForDisaster, I want to quit this job too! Where do I send my resignation letter? 🙂 Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted November 27, 2023 Report Share Posted November 27, 2023 8 minutes ago, Sarah Tee said: @RecipeForDisaster, I want to quit this job too! Where do I send my resignation letter? 🙂 Maybe if we ALL quit, they’ll go out of business?? Quote Link to comment Share on other sites More sharing options...
Sea otter Posted November 27, 2023 Author Report Share Posted November 27, 2023 @Sarah Tee good advice with redirecting efforts. Yes, it is exhausting, I feel your frustration with doctors. Quote Link to comment Share on other sites More sharing options...
MikeO Posted November 27, 2023 Report Share Posted November 27, 2023 2 hours ago, RecipeForDisaster said: Maybe if we ALL quit, they’ll go out of business?? i get a feeling we don't even have to quit. fired my faint folks three times in the last several weeks and their billing was refused. money talks..... Quote Link to comment Share on other sites More sharing options...
Pistol Posted November 28, 2023 Report Share Posted November 28, 2023 19 hours ago, Sarah Tee said: I am going to have to write out for him what to put on the test order. I should get a percentage of his pay cheque! @Sarah Tee - both my PCP and my Cardiologist actually go along with any tests or meds I mention ( within reason ). If a new med comes along and I present them with studies or explanation why I think it might be helpful to me they order it. This is how we found my current well-working regimen. It is so important to find a physician that understands US, even if he does not understand our illness. My cardiologist ( I was his first dysautonomia patient years ago, and he has informed himself about it and now sees many dysautonomia patients ) already called me a few times asking questions. THAT is a good doctor! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted November 29, 2023 Report Share Posted November 29, 2023 @Pistol, I’m glad you have found some good people. I think my specialist is a bit immature. He seems to be frightened of writing an order for a test he is not familiar with, and instead of learning about it from me or by reading research or asking a colleague for help, he comes up with excuses. My dad and I are doing our best to coach him! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted December 7, 2023 Report Share Posted December 7, 2023 I would also like to resign! I’m also weary of specialists, who don’t know anything about US and ignore my gentle attempts at education. I was close to a new low 4 weeks ago. Docs not responding, not listening, not trying. Five years limping around grinding the bone in my hips down, staggering around the house in a brain fog. Much better now that I have a total hip date, March 18, and working on the CHOP to prepare for my hip rehab. If our meds would let us drink, I’d suggest meeting at the bar and drowning our sorrows. Well, thank goodness Cannabis is legal here in Maine. It’s the only med that actually helps! 🤔 Quote Link to comment Share on other sites More sharing options...
DanteMccoy Posted March 1 Report Share Posted March 1 I hear you, and I'm really sorry to hear about your struggles with POTS. It's incredibly tough dealing with the constant challenges, treatments, and setbacks. Just know that you're not alone in this journey, and there are others who understand what you're going through. Also, have you heard about 1D-LSD? Some people find it helpful for managing symptoms and improving their quality of life. Of course, it's essential to approach any new treatment with caution and consult with a healthcare professional before trying it.Take care of yourself, and don't hesitate to reach out if you need anything. Quote Link to comment Share on other sites More sharing options...
Sea otter Posted March 1 Author Report Share Posted March 1 1 hour ago, DanteMccoy said: I hear you, and I'm really sorry to hear about your struggles with POTS. It's incredibly tough dealing with the constant challenges, treatments, and setbacks. Just know that you're not alone in this journey, and there are others who understand what you're going through. Thanks for reaching out and support. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 2 Report Share Posted March 2 @Sea otter, I hear everyone! It feels like each step forward just ends in them adding more steps!!! It’s not fair! I come through my preops well, all specialist’s cleared me. But then my labs come in, liver enzymes higher than ever, high WBC, and immune function all over the place, high/low all red. 🤬I spend 6 hours everyday on wellness, meditation, breathing exercises, chanting, praying, diet, research, and more. Everything and anything to help. Meanwhile I watch people all around me drinking, smoking, doing hard drugs, sedentary, massive processed meals everyday, taking high doses of hepatotoxic substances, vandalizing and pillaging, and rampaging, for decades and the worst health issue they have is…a tummy ache. 🤬🤬🤬 🤬🤬🤬🤬 It’s just not fair. Lucy with the football, again and again. Sorry but feeling hard done by this evening. 🥺 I’ll bounce back in the morning.😓 Just like we always do, again and again. 🫡 Quote Link to comment Share on other sites More sharing options...
Sea otter Posted March 2 Author Report Share Posted March 2 @MaineDoug I feel your frustration. Sometimes it's rough, both physical and emotional. Unfortunately a lot of people think if you will eat and live healthy, you are supposed to be healthy. But there is no rule. Healthy people don't understand that they are healthy because of God's mercy. Hope today is a little better day for you. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 5 Report Share Posted March 5 @Sea otter, Thanks! I was feeling very overwhelmed! I just got back from my preop visit to HSS in NYC. Twelve hour drive, but I get to stay with my mother! ❤️ Over the week I had 12 MD appointments! 4 zoom, the rest physical. All with heavy Manhattan traffic, thank goodness for GPS! It pushed me to my physical, orthopedic, PEM, and emotional max! I needed to drink an extra gallon of water and stress dose steroids each day just to survive. The trip home was the last straw! I’m wiped out. But I have to head back in 12 days for surgery. Then I get a shiny new hip for my 60’th birthday! 🎉 Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 5 Report Share Posted March 5 @DanteMccoy, Thanks for the support and kind offer of assistance! I hadn’t heard of the 1D-LSD. But there is a lot of activity in my area around Ketamine and Psyloscibin. I wonder if they are similar? Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 5 Report Share Posted March 5 7 hours ago, MaineDoug said: But I have to head back in 12 days for surgery. Then I get a shiny new hip for my 60’th birthday! Wish you the best with your hip replacement. should make one thing in your life easier. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 7 Report Share Posted March 7 @MikeO, Thanks Mike! I’m really looking forward to walking without pain or limping for 5 years! 🎉 I’m having my MR CRP at 3:30 today! I’ve been getting IV saline since 8:00 to allow NPO. Hoping for good results! 🕉️☯️🙏🌈 Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 7 Report Share Posted March 7 1 hour ago, MaineDoug said: @MikeO, Thanks Mike! I’m really looking forward to walking without pain or limping for 5 years! 🎉 I’m having my MR CRP at 3:30 today! I’ve been getting IV saline since 8:00 to allow NPO. Hoping for good results! 🕉️☯️🙏🌈 Pulling for you! Quote Link to comment Share on other sites More sharing options...
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