Can't Afford Pots Anymore, Neither Financially Or Physically.

[blueskies]

Hi all,

I just can't afford this pots gig any more. I've had to stop exploring new avenues for answers.

And I can't afford to see the doctors I already have let alone see new ones. Nor can I afford the medications I have to buy. And as I'm 58 I can't see my financial status improving in the future.

I live in Australia with a public medical system sitting alongside a private one. I have private health coverage but am able to access public care but I've found that neither system compensates adequately, financially speaking, when a person has a chronic illness. It's great for something acute. An emergency, for example. I look back over the costs of my health care of the past 12 years and see how much it has cost and can see pots-wise it's cost me a lot financially with little headway made in terms of my health.

Doctors, medicines, pathology, ultrasounds, mri's, endoscopies, ultrasound endoscopies etc. the list goes on and on for pots health symptoms. I don't even bother attending to other health issues anymore. I just can't afford it. As I age more health problems other than pots crop up but I just have to shrug my shoulders and ignore them.

My physical abilities to get to and from medical appointments as well as my financial abilities to pay the gap payments, sometimes more than half of the account, are now severely limited. Just the other day I was at my new gp appointment and he wants me to have a whole new set of the same blood tests that were done last November done again. He has most of those results anyway and should be able to get the rest - it's all computerized. Why not make the computers do their job - either he or his secretary should be responsible for getting the results of the rest. Do I really have to explain to him that physically and financially I can't afford the drain? Even if all the blood tests were financially covered, I'm too freaking tired to put myself to the effort of doing those tests again so soon. I'd bet the part of my apartment that the bank doesn't own that nothing has changed in regard to those results in the past 4 months.

I can only conclude that people poorer than I just don't get their much needed health care or it's extremely scant, at best.

We are told that the situation in the U.S. is worse. My god!

Is there anyone here that is not able to access health care due to financial stress? My resources have just about run out. Anyone here find that physically it's just become too much to make it to and from medical appointments. That, that is all one does, leaving no energy for something like a visit to the park or an outing to a movie. Which, for me would do me the world of good. Probably more than any good I will find at a doctors office now, in regard to pots.

If I was younger I'd be up for making more effort and mortgaging more of my future, I think. What am I saying? -- I did make more effort for years and have already mortgaged much of my future.

blue

[Tachy Phlegming]

If you just can't afford it, maybe you need to speak to your physician about returning POTS and letting him give you a less expensive and agonizing condition in exchange. Tell him particularly that you need a condition that is like a walk in the park because that is indeed what you seem to need right now.

Do you really think you are developing other serious primary health conditions? Or are they secondary to POTS. You are not necessarily doing the wrong thing by ignoring some of the other stuff and even refusing some of the tests either because you don't think they'll show anything, because you're tired, or you can't imagine it would help to treat those instead of your primary condition -- especially if you aren't getting adequate treatment for it. I remember going to the doctor and wondering why they were bothering with yet another cholesterol and diabetes test when neither of those could possibly be in any way connected to the condition I actually already had which, at the time, was severely damaging to my overall health and completely untreated.

I suppose there is nothing to add to what you have said but I can at least say I've had some of the same thoughts ...

[corina]

blue, I'm sorry I haven't much to add that might be of much help to you other than that I would be honest with my gp and tell that I just don't have the money nor the energy to go through this again. S/he might surprise you in a positive way (being honest and open has made my doctors more emphatic than anything else). I feel for you and hope you at least can have that visit to the park

[Macca]

Hi Blue

I'm from Australia too. Any chance you are in Melbourne? If so, then Dr Chris O'Callaghan at the Austin Hospital has a blood pressure clinic that specialising in POTS and they bulk bill. They can also organise blood tests as needed through the Austin pathology and that is also bulk billed.

If that is not a viable option for you, it might be worth asking your GP if they will consider bulk billing given your significant costs. Your GP can also request any pathology is bulk bill as well.

You probably also know that you can register for the Medicare safety net, which will significantly reduce your out pocket expenses when you hit the threshold.

Hope that some use. Take care .

[Becia]

I don't have anything to add either, but just wanna share a hug with ya.

*HUGS*

Believe me, I've been off work since July when I was diagnosed, and money is very infrequent. I guess I'm blessed with great friends who help me as much as they can, and I've managed to get Medicaid at the time being because I have a disability claim out, but that's been the only saving grace with me and getting tests and meds. My midodrine costs over 600 bucks a month, with prescription helper cards, I managed to get that down to $84, then I got my Medicaid, and they reimbursed me for what I've already paid out, thank goodness.

[jpjd59]

Blue:

So sorry for the rough time you are going through. I always thought that because we had health insurance we would always be fine, but now that our daughter was diagnosed with POTS (and Lyme, Babesia, etc.) we are also finding that most of the expenses we are incurring are not covered by insurance and we are paying out of pocket. What a lesson we have learned!!!

Hope you get to enjoy a walk in the park soon to lift your spirits

[blueskies]

Thank you Tachy, Corrina, jpjd59, Becia and Macca,

I appreciate your thoughts and support. That you related to what I'm saying is a big help to how I'm feeling emotionally. I guess that now I'm only 2 years off 60 I have to actually realize that I'm no longer young (the mirror tells me this each time I look at it, but inside my head I still feel like my young, often uncertain self, full of expectations despite plenty of experience under my belt which gives me a certain amount of wisdom - not a lot but some .But still, I'm aging and can't expect a return to the robust health I enjoyed, and which disappeared so rapidly and suddenly a dozen years ago, anymore but rather just need to deal with what I have and hope for some improvement. And perhaps just try to take my health a little less seriously than I've become used to -- at least as much as my symptoms will let me.

Macca, I'm in Sydney and I think Westmead Hospital might have the sort of set-up as Austin Hospital in Melbourne. But I'm on the other side of Sydney and have no way of getting there. I've organized my health care with most of my specialists in different parts of St. Vincent's Hospital -- they communicate with each other and are very good but only one of them decided to bulk bill medicare despite my saying to all of them (over the past 2 years) that I can't really afford to see them anymore. So I have to think this response means they aren't too worried about my health. Or perhaps it is my age they are taking into account now and really have nothing to offer me. At any rate, I'm seeing less of them now. I don't live in a part of Sydney that has GPs who bulk bill -- this means I have to travel. I used to sigh with relief when I got to the safety net level and was managing to get myself to and from appointments, but now I can't afford to see the doctors enough to get to that level anyway. And even if I could find the money for that, I don't have the money for taxis to and from, and physically, public transport is now out of the question for me.

I guess I'm throwing in the towel on trying to get better from pots and I'll stick with what management responses I already have and just try to live with anything new that crops up. I am very lucky that although I live beside a major arterial road, that across that road, a short walk through a small park, I come to the harbour's edge and can sit on the grass and enjoy the most fabulous view. Maybe I need to concentrate on doing more of that. It might not do anything for my pots stuff but I might get a little bit more zen about it all while looking at a glorious harbour.

blue (doing a lot of thinking aloud, or is it thinking-typing).

[Macca]

Hi Blue

I am guessing you are in the eastern suburbs, somewhere near Rushcutters Bay? Being able to walk to Sydney harbour is a fantastic option, it is such a beautiful place.

From what you were saying it seems like you've explored most of your options for reduced healthcare costs. That said, wondered if there any chance you're eligible for a Centrelink pension and healthcare card?

In any case, wishing you all the best. Enjoy the beautiful Sydney weather and the harbour!

[looneymom]

Sorry you are having a rough time. I know the feeling. Even in the USA, private insurance does not take care of it all. We have found a specialist that could help but will not take insurance. It seems that many highly specialist doctors are going towards this route. However, more information is bcoming available of what type of treatment and supplements their paitents are taking.I have learned this information through blogs and other forums. Don't give up Blue! You can still help yourself and learn to manage POTS. You will find things that help and things that make your POTS worse. It does help if you can find a doctor that is just willing to try other things to see if they will help. Stick with things that you know help. I have stopped being afraid of trying herbal supplements with my son. Since doctors don't want to help with pain and inflamation issues with my son, I have decided to try some herbal supplements with the guidence of our cardiologist. I have a cardiologist that's willing to think outside of the box. Hang in there and keep reading and researching.

[blueskies]

Hi Macca,

You are right. I do live in the eastern suburbs -- lucky me! We spent 15 months living in the inner west (just moved back to the east 5 months ago) and while I loved the society, diversity of culture, and the creativity and imagination that goes into making those inner west suburbs an exciting place to live, I did not miss the hotter temperature - I'm heat intolerant. I love the cool harbour/ocean breezes so much and am glad we have moved back to the east. I hope that I never have to move away from the coast again.

Thanks for your imput and encouragement too, looneymum. I actually have been doing a little bit of research on the net lately about dopamine. I know one hormone can not be taken on it's own. That bodies are finely tuned and supposed to be balanced - just not ours. But the more reading I do the more I think I may have a dopamine problem. Not enough dopamine. I haven't read enough yet to come close to understanding this but I've more reading to do and also I will take a visit to the psychiatrist to discuss this with him.

Warm Regards to all,

blue