Still sleeping so much/unhelpful docs

Sounds like you are getting the doctor runaround. Many of us have been there and done that and it is time that you start being proactive instead of letting the doctors be reactive. Do so as soon as possible. I lost a fairly good paying job last year due to sleep problems that I did not aggressively work on because I was too tired to do so. With the current job market I can't buy a job that pays enougth to drive to work.

You need to borrow or buy a used recording oximeter so you have data on o2 destats to prove to the doctors you are having problems. I got one for under $100 that works well.

Do you have a card reader and software to check your bipap progress and adjust bipap if needed? If not buy from an online provider and/or use shareware.

Being on 17 medications at once can cause LOTS of problems. Do your doctors know what the other doctors are prescribing? A good pharmacist may be able to advise you on medication reactions if you get them filled at one place. By law the pharmacist needs to speak to you when you pick up a prescription so start by asking for his advice. On the internet there are sites where you can check out how medications interact with each other. You may want to see if you can reduce the number of pills you take. Taking alot of pills may do more harm than good.

Sometimes doing self help activities like being in this forum help more than running to doctors who tend to write off certain types of people who appear passive. I found doing certain things on my own (like buying a cpap machine and making medication changes that I knew were safe to do) then reporting only the sucessfull results got me more respect then letting doctors control things andnot helping me . Never got yelled at for doing this and most of the time got prescriptions/orders to get insurance to cover the cost of future treatment. Glad my symptoms were helped by cpap or else I was going to buy o2 concentrator on my own. Good luck

I understand what you are saying, but I am extremely poor, on Medicaid and Food Stamps and pay for COBRA premiums out of my social security disability. I don't have the money to buy things on my own. This further limits me to having to go through the doctors. For instance, I tried to get in at the University of Michigan. They would not take me until March if I make the appointment, but will get me in within 2 weeks if the doctor refers.

I have not been passive. I have been actively involved in my care and pressed on my providers to do something. I am limited in my power to do much more due to my poverty. I have been informed to the greatest extent I can be. I just can't change how the world and medical system is with people in my situation. Lovey

Lovey, I know many of us have been following your (lack of) progress and really cheering you on. There's not much else to say except that I hope you know we are all thinking of you and hoping that you will eventually prevail.

Can you get the cardiologist or any other doctor besides the sleep and home doctors that can refer you to U.M.?
Have you checked with your local AWAKE group to see if they can help in some way? http://www.sleepapnea.org/awake/index.html

Keep strong!

well, you are right I do not have a full understanding of what is going on with you.
How ever I find that when we get out of sink with our sleep,and breathing lots of things can go crazy.
So maybe you do need to change your pressures. Change the way you are sleeping.
may be that is why you are getting heart pains? I couldn't sleep because I was not getting enough air, and I remember that I would feel like I was having heart problems, my Doc sent me to the cardiologist, and there was nothing wrong with my heart
and it didn't get better until my air levels were changed.

Well sorry I know it is a bit frustrating when all you want is some kind of help and understanding what is going on
and all that is happening is some Doc trying to prove a point, and think that it is the help you need and have no regard for your symptoms. How ever it may seem I have no point to prove just hope talking to me will help you in some way.
I have already prayed for you, and you are going to be back to yourself!
you will get the things you need.

well just don't get to snippy,
because that will stop things from happening
you must stay positive to let the universe and others help you.
I'm still going to pray for you.
nonono.

lovey wrote: I appreciate your prayers, but I do not need love, I need adequate medical care. It is not psychological.

Sorry to to be snippy-- I just don't understand why you took this position with me.

I think you have every right to be snippy! I don't understand why this nonono person posted what they did, either. (Nonono is kind of an odd name for someone who tells everyone to be positive all the time LOL ) It doesn't seem like you're "just" unhappy or depressed, and most people who are sick don't just need positive thoughts to cure themselves. It would be great if it worked that way, but it doesn't.

I'd be very concerned that your doctor has been out of the office for 2 weeks. Does he have a partner in the office that takes care of patients when he's out? Can you find another PCP to transfer to if needed?

I am concerned with my primary care doctor also. He does have partners in the practice, and they are supposed to step up when he's not there. But the office staff doesn't bring up anything to the partners when I ask, and just wait for my primary to come back. I complained to the primary care doctor last time about this delaying my treatment, and he said he would do something about it. He seemed surprised it was happening, that his partners were not picking up my care. But a month later, it is the same situation. He was gone all last week, and was suppose to return Monday according to the office staff. Then I talked to them yesterday, and the office staff said he hadn't been in, and wouldn't be in until Thursday (today). I've had another problem this week, with a rash on my face. I called today again to ask him what could be done about it. He did absolutely nothing. His nurse told me late today to go to the ER. Yeah, that's a good use of the ER. I went to the walk-in clinic instead (the bible-thumping one in town that won't give young women birth control). Just because he hasn't been in, doesn't mean that he should pass off care.

I need a full-time doctor, not one that seems to be gone every other day. The problem is there are few family practice physicians because I live in a rural area. And fewer still take Medicaid, even though it is my secondary. I am in a search though, to find one taking patients like me, who are "complicated", with Medicaid!!!

Not feeling "snippy" anymore. Generally, I am a very loving and kind person. Take care, Lovey

You seem to have the knowhow to deal with the system in that you are able to get qualified for social security disablity, food stamps and medicaid so fast after losing a job that qualified you for Cobra. So with that drive use it to get the medical care you need. Consider yourself lucky to be given all these tools when so many people get denied and fall between the cracks.

The self help activites I suggested cost little or no money(pharmacy consult is free) compared to what you are paying for Cobra which most people drop once they get qualifed for medicaid or medicare because it is not neccessary to have duplicate coverage. I can see paying for Cobra only if you are about to lose medicaid due to a dependent child turning 18 until you qualify for medicare.

My final thoughts are that you were successful in qualifying for three programs you can use those same skills to get medical care. It just may take more time and effort this time around and being ill doesnt help.

JRT-- I did mean to address that I am doing some of things you mentioned. I have a good relationship with my pharmacist and everyone there tries to help. I've made sure that each doctor knows what each other prescribes, and generally, they are in agreement when one eliminates something. It just seems that when I get rid of one, for some other reason, I gain another. And then I have a side effect from the new drug, and end up on another to deal with a side effect!!! And I have so many medical conditions that each need treatment, i.e. hypothyroidism, essential tremor, OSA, etc. The main reason I get social security disability is because of how many conditions I have, and not especially the severity of any one of them.

Yes, I do have good skills and have been able to navigate Social Security, COBRA, and Medicaid with a spend-down. I have become quite the advocate after a year and a half of dealing with this. In fact, even on this forum, I have piped in some advocacy...see viewtopic/t36407/Health-Insurances-Woul ... ml#p314893 I realize I am lucky to have these skills, and I do try to use them with the doctors. I feel sorry for all those others who are not capable of advocating for their needs and others. Everyone says I am "tenacious"-- I never give up!!! In fact, tenacious should be my middle name...

As far as COBRA and Medicaid, technically I could drop COBRA at this point. But with Medicaid with a spend-down, it is risky to do so. And since it took them 4 months to process the paperwork for Medicaid, I do not trust them with my health. I am getting some family help with the COBRA payments. I am also making great progress lately with changing Michigan Medicaid after a year of attempting to do so, especially to make the rules fair with COBRA and Medicaid with a spend-down. If they do adopt some of the changes that I have been advocating, it might benefit me personally in that Medicaid would pay the COBRA premium. There is a program in California that pays for COBRA on Medicaid, if you have a serious illness, and after an analysis, it saves Medicaid monies to keep COBRA coverage. I did an analysis of my situation, and COBRA is saving $29k (at least) of Medicaid monies a year. With all the push for health care reform, I am hopeful that these changes will take affect in time to benefit me. Anyways, I am grateful for what I do have and that I have the skills to help and advocate for myself and others..
Anyways, thanks for the advice. Take care Lovey

Hi lovely,
I do believe that when one has a very positive attitude, things do get better,
because you can change what is happening to your feelings, maybe not change what others are doing but,
you can make a different.
you see I know a man who had everything you could think of that was really wrong.
Cancer, Kidney failure, Diabetes, you name he had it, and one day I was talking with his mom,
I asked her, " does your son always have that big smile on his face, even at home?"
" she said, yes, I don't understand it myself, but he dose". "She said that when all this stuff was
happening to him," he said this might be happening to me but I'm not going to let it make
me into a negitive person, crying helps sometimes, but have a negitive attitude helps nothing at all".
Not even finding a Doctor lovely. Be patient a little longer help is just around the corner.
There are many people who do not have, even bad doctors to go to.
but they servive and live happy until help comes. I do have faith and some times we must have lots
of it, and when we do the sun dose come out and makes things all better.
You are on a good path now, think good thoughts and good things happen, no matter what,
you may feel right now!
I have something for you.
when I don't feel like felling, or even trying at all,
when life looks to hard to face, and the road seems like you never find
what you are needing, or find that right person, friend,or even (Doctors)
I ask God for the help I need,
I pick myself up put a smile on my face, I tell myself that there is
love help and all the things I need in side of me. And you know what!
Live is what I need and the things I needed come.
and P.S.
you know Doctor don't know everything, they like to give you things sometimes that you don't need.
I have a friend, will call her Barb. she takes everything a Doter would give her!
I kept telling her not to take all that stuff,"oh but the Doter said I need this" Well 4 years latter she had all kind of things
going on with her crazy things, and the doctors kept on giving her more Drugs. that were no
good for her, So finely Barbs' boyfriend and I convinced her to find a Doc that didn't just give Drugs
to fix things, well now she is still taking some Med but not like she was, she is felling a lot
better,
So do be careful with doctors that just treat with giving you med!
talk to you soon.
if you would like.
nonono stands for
no bad attitude
no bad feelings
no bad thoughts,
and because I was being silly with
my husben when I first got on this sight!