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Having A Rally Bad Day!


AJVDK
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Hello All,

Well I went back home this week to see my family for thanksgiving. When I got back home I had a letter from SSDI. I lost my reconsideration. So now I am on to my appeal. So I am going to file my appeal, but am not going to hold my breath. Part of me thinks maybe I should try to get a fulltime job, I need one to pay the bills, up I can?t even get up off the bed half the time, from dizziness, or the headaches I have all the time. I am not sure what to do. I am just so upset. I now been dealing with for a year, and to get the appeal, to get a court date it could be another year or more. I think they just want us to give up!

Then to top things off, my cardio wants to pull my PICC now. Get this he has not seen me since the day he order the PICC but now wants it removed as he is worried about infection, with my pacer. (Now don?t you think they should of thought of that before) anyways, my site looks good and has had now problems. My one doctor wants the orders to be increase as it is helping, but my cardio now is like, I think we need to pull it, and see how you do. This has been the only thing that has seemed to make a good improvement and now they want to pull the line.

So my husband calls my cardio?s office and says we want to make an appointment to see him, but he is booked till Feb. My husband ask to speak to the nurse, and he tell her we want to see him before the PICC line is pulled and she says he only going to keep the orders for a few weeks and orders to have the line pulled right before Christmas. So he?s really mad, as they will not see us before they pull the line.

So for now our plan is to go talk to our PC on Monday, and see where to go from here. Plus I have to go for a CT scan again to see what?s going on with this mass in my head?. I just want to scream. I can?t take much more!

Thanks for listing!

Amy

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new cardio time perhaps??

Just my opinion here, but I think that it's not adequate care to have a doctor fail to actually see you before he orders a major change in your treatment plan. I don't think that meets a very basic standard of care. Might be time to get your insurance company involved in helping you find a new cardio--and maybe get a nurse case manager to help you coordinate appointments and get a little pushy on your behalf when things like this are going on.

Hope you have a better day today. Nina

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Amy,

I'm so sorry you're going through all of that. I'll second what Nina said - the doctor is not caring for you adequately or properly. You might want to start looking for a new doctor.

About the SSDI - it's a long hard battle for those of us with POTS. But many have been approved. If you are unable to work due to disability from POTS, I'd recommend getting a lawyer and proceeding with the appeal.

Good luck with everything and hang in there.

Rachel

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I'll second what Rachel said and third what Nina said. You get to call the shots on your own medical care, not your cardiologist.

My disability claim was rejected twice, but approved when I finally got a hearing. It's a hassle and a headache, but there's an arrangement where you only pay your lawyer if you win, so you're not out any money, at least. I know how discouraging the process can be; I almost gave up, too. But a lot of people get rejected before they get approved.

I wish you luck on both things. Hang in there.

spike

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Well as for right now I don't know too much. I went to my family doctor on Monday, and he seemed really upset with what my cardio is doing. So he said he was going to call them today and get back to me. Well as of know I still have not heard anything, so I am guess theres no news yet. But get this my home care nurse said my cardio called and said to keeo the orders, and when they are down in three weeks they are "washing there hands of the deal, as I should just out grow this" then they went on to say "they don't understand why I am not getting better". So I guess Mayo and Cleveland don't know anything as they both say I have POTS

Get this on, the only thing SSDI was waiting on to make there dision when the deained me was this same doctor. I am so mad right now. I guess I need to suck it up and out grow this! I need to find a new doctor but Its going to be hard as almost every doctor belongs to this large cardio group. Plus to top it off my husband insuace is change so they have to be in the "network" too.

I don't know what to do! I just want to roll up in a ball, and not come out, I want to cry, and scream but I am to tried to even do that. I am so sick of feeling this way, and now to top it off I feel crasy...... like this is all in my head. I just want a life!!!

Venting and down, looking for new doctor! :)

Amy

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I am going through a lot of the same stuff. I am up for reconsideration but know I will get denied. I already have a lawyer, but its really tiring and disheartening. When I got denied the first time I did curl up in a ball and cry, so don't feel bad. Its really bad feeling like people don't believe that you just can't work. I think we both need to find a new doctor, although that's a lot easier said than done. Whenever I mention disability to my doctor he says, "now why would you need that," or finds an excuse to leave the room. He also wrote me off at my last appointment because he says its been a year and I should be doing better than I am. Maybe we have the same doctor. =)

I'm so sorry you're going through this and you have every right to be angry. You also have every right to curl up in a ball for a little while. A good cry can be a lifesaver. I hope things go better.

Kady

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