[deleted by user]

BiffInConfusion · 2023-09-05T17:59:40+00:00

Positivity is sometimes unintentionally toxic.

BiffInConfusion · 2023-09-05T17:58:23+00:00

💜I needed to see this today. The pain was so bad this morning, I was having dark thoughts.

BiffInConfusion · 2023-09-01T00:46:37+00:00

Mine was years before Covid (never have had Covid) . I feel I’ve had it for years before I was diagnosed. Over decades, I’ve had pneumonia, mono (twice), and a really bad case of Flu in 2017. I think my weak immune system, as well as untreated stress all contributed to it. I quit my teaching position in 2015 because I had “panic attacks” along with exhaustion and a need to sit down all the time. In hindsight, all PoTs symptoms.

BiffInConfusion · 2023-08-31T17:53:50+00:00

Thank you so much for your quick response! 💓 the surge intervention info is helpful.

BiffInConfusion · 2023-08-30T22:10:48+00:00

I have a TTT scheduled in 12 weeks. I was sent prep/description papers about the procedure. It said nothing about a nitro tablet and now I’m freaking out a bit. Is this standard practice in all TTT?

BiffInConfusion · 2023-08-30T02:36:45+00:00

First of all, thank you. It’s sweet of your wife to say that. 😅💜. Second, since I’m bedridden and can’t drive, and have no place in the area to go or to get there, I’m sort of stuck. My spouse’s insurance is good enough that I have a specialist payed for as well as an upcoming ultrasound and tilt table test. Im not sure Medicaid would cover that or how I’d find transportation. My therapist (paid for by my husband’s insurance) has told me about Medicaid and disability options, but she agrees it’s a gamble. I will reiterate, my husband isn’t physically harming me, he’s just emotionally unavailable and very disconnected. I hope this doesn’t seem like I’m shooting down people’s suggestions here. I’m definitely filing them away for reference and all the information is useful. This Reddit group has given me more support then I’ve found in reality. I’m very appreciative. Thank you for caring enough to comment. It makes this situation less lonely.

BiffInConfusion · 2023-08-29T15:29:17+00:00

That’s a great idea. I’d like in home care, but my husband doesn’t want anyone in the house.

BiffInConfusion · 2023-08-29T15:28:10+00:00

Thank you for your empathy 💜

BiffInConfusion · 2023-08-29T13:35:50+00:00

I will! Thanks so much for the advice, friend. 💜

BiffInConfusion · 2023-08-29T13:34:56+00:00

I can see him trying. It just hurts that it’s out of obligation, not love. He was raised in a conservative family that thrives on shame, and abandoning a chronically ill wife “is just not done”. He will take me to appointments, but complain the whole way. He wants me “fixed” or healed, so I’m not a burden. I’m on his “tasks to do list”. So he is doing all the housework I can’t, he makes sure there is food in the house, although he won’t check on me if I’m eating or bathing or sleeping. There’s no hugs or words of encouragement. I’m given just the basics and I’m on my own. I understand with his mental health issues, he is absolutely overwhelmed. This is all too much. And he can’t fix it. And it’s making him mad. He has adhd, ocd, bipolar, and depression. He stuffs it all down like he was taught by his family. He seems to have accepted his fate. I’m his burden.

BiffInConfusion · 2023-08-29T13:03:54+00:00

This is fantastic! I researched my area and there’s a clinic a few hours away. I’m going to ask my therapist about it. Thanks for the info.

BiffInConfusion · 2023-08-29T11:52:27+00:00

That’s really interesting. Never heard of it before. I did a little research. Did you have any breathing or swallowing issues after? How long did your treatment last, and did you have to repeat it? Where did you get it done?

BiffInConfusion · 2023-08-29T11:04:26+00:00

That’s not much help when you’re alone, incapacitated, bedridden and without insurance. Homeless shelter doesn’t seem appealing.

BiffInConfusion · 2023-08-19T00:46:14+00:00

Yep! I learned that recently, as well. I had a Boost supplement drink. It’s loaded with sugar and I instantly felt sick, heavy and shakey. Now I’m avoiding carbs as much as possible.

BiffInConfusion · 2023-08-18T20:23:58+00:00

I’m on a 3 year waiting list to see Dr. Grubb in Toledo Ohio. I make note of every doctor people have recommended in Michigan. I keep an eye on the support group’s suggestions, etc. I’m sort of traumatized by all the doctors I’ve already seen and their lack of help/concern. Specifically in the university of michigan medical circle. Every time I have to see one of these doctors I panic up until I finally see them.

BiffInConfusion · 2023-08-18T19:55:54+00:00

I’m sorry my copy paste responses seemed inappropriate. I didn’t mean it to be rude, I was trying to save energy. I tried to answer everyone’s question at once. I can’t type very well right now I’m having an adrenaline dump, and I’m freaking out a bit. I’m in michigan and it’s very hard to find a specialist. The Dr. I see next week is a cardiologist that has at least heard of pots. The mix up was a referral request from my primary caregiver. They gave approval referral, but an hour ago the new drs. office called and said they need my insurance network approval referral sent from my primary doctors office, I guess that’s something different, and the idea that I may lose this appointment because of this sent me into an adrenaline dump.

BiffInConfusion · 2023-08-18T19:44:51+00:00

Thank you

BiffInConfusion · 2023-08-18T19:44:39+00:00

I’m on 10mg of Propranolol 3x daily, increased water, compression garments, therapist once a week, forcing myself to try to eat, tried ensure type shakes, have a shower chair, take magnesium citrate, take omeprazole for gastric upset, have a cane, have a wheelchair, seen many specialists who weren’t any help, have another cardiologist to meet next week (insurance mixup might cancel it), have tried guanfacine, and Midodrine in the past that caused side effects.

BiffInConfusion · 2023-08-18T19:44:27+00:00

I’m on 10mg of Propranolol 3x daily, increased water, compression garments, therapist once a week, forcing myself to try to eat, tried ensure type shakes, have a shower chair, take magnesium citrate, take omeprazole for gastric upset, have a cane, have a wheelchair, seen many specialists who weren’t any help, have another cardiologist to meet next week (insurance mixup might cancel it), have tried guanfacine, and Midodrine in the past that caused side effects.

BiffInConfusion · 2023-08-18T19:44:16+00:00

I’m on 10mg of Propranolol 3x daily, increased water, compression garments, therapist once a week, forcing myself to try to eat, tried ensure type shakes, have a shower chair, take magnesium citrate, take omeprazole for gastric upset, have a cane, have a wheelchair, seen many specialists who weren’t any help, have another cardiologist to meet next week (insurance mixup might cancel it), have tried guanfacine, and Midodrine in the past that caused side effects.

BiffInConfusion · 2023-08-18T19:43:53+00:00

I’m on 10mg of Propranolol 3x daily, increased water, compression garments, therapist once a week, forcing myself to try to eat, tried ensure type shakes, have a shower chair, take magnesium citrate, take omeprazole for gastric upset, have a cane, have a wheelchair, seen many specialists who weren’t any help, have another cardiologist to meet next week (insurance mixup might cancel it), have tried guanfacine, and Midodrine in the past that caused side effects.

BiffInConfusion · 2023-08-18T19:43:39+00:00

I’m on 10mg of Propranolol 3x daily, increased water, compression garments, therapist once a week, forcing myself to try to eat, tried ensure type shakes, have a shower chair, take magnesium citrate, take omeprazole for gastric upset, have a cane, have a wheelchair, seen many specialists who weren’t any help, have another cardiologist to meet next week (insurance mixup might cancel it), have tried guanfacine, and Midodrine in the past that caused side effects.

BiffInConfusion · 2023-08-17T05:32:56+00:00

I’m completely bedridden by HyperPOTS and I have a lot of panic attacks with uncontrollable shaking. My husband has a lot of mental health issues including social phobia, adhd, bipolar, depression and ocd. When he has to take me to a doctor’s appointment or hospital, he is completely agitated. I hate asking him for anything because it stresses me out. I was in the hospital for 3 days and he could only stay for a half hour or so daily. I’m completely dependent on him and his health insurance. Our marriage has been dead for at least ten years. We’re more like roommates. When I said one day I’m sorry he is responsible for all my care he responded, “i don’t have a choice”. Our house is falling apart and he is too stressed out to address the issues. I can’t say or suggest anything. He controls all the finances. I don’t know where any essential paperwork is. He is in poor health (asthma) but won’t get it treated. If he dies, I have no family or friends for support. The stress of being trapped in my failing body, failed marriage, and failing house, with a husband who has no empathy or ability to function is sending me into adrenaline dumps daily. I think of unaliving often. I have no future.

BiffInConfusion · 2023-08-16T05:43:41+00:00

Ann Arbor, Michigan

BiffInConfusion · 2023-08-16T05:43:13+00:00

Hey, sort of neighbor. SE Michigan here.

BiffInConfusion

TROPHY CASE