Re: [QUAD-L] just another day in quadadise

[greg]

Do you have straight Medicare, or a Medicare Replacement? I switched to a AARP Medicare Complete, United Healthcare. It covers a bit more and I find more docs take it. You can search their directory to find docs and specialists in your area, etc.   I only wish I could find a secondary insurance to cover my co-pays, etc. $10 for doc, $40 specialist, 20% for equipment.   Greg > You hit the nail on the head Dave! Things out there are just > getting worse and worse. I can't even find a doctor after moving to > Arizona and because the one doctor got tired of trying to find a > home health agency to take me on and the home health agencies > [Medicare certified ones which I am forced to go to because that is > my only insurance] he sent me a letter saying that he thought I > needed a doctor that would provide more care for me and telling me > that I had to find a new doctor within 30 days! I have never ever > in my entire life had a doctor drop me. However, he was the most > egotistical, arrogant physician (PCP or otherwise) I have ever had. > > > The only reason I have had to go to my primary care physicians have > been to get my medications and to write out orders for home health > agencies to provide skilled nursing care to change my catheter once > a month and to bring the of the supplies. > > > The next problem I have come across is, since moving back to Tucson > Arizona, is not only finding a physician who is accepting new > patients but a primary care physician who will accept the patient > who is on a pain med of any sort... which I am.  > > > I very much wanted to go back to the same doctor I had before I > left Tucson and that same doctor would take me back IF I WAS NOT on > a pain med. This was not the case 3 years ago. Now almost all > Tucson's physicians are not taking on patients who were on pain > medications... and they are including Valium/diazepam as well. > Jesus... I have been on diazepam since 1979/1984 spasms. After > acquiring syringomyelia I began to develop pain and have been on a > pain med [low dose] since 1998. But trying to find another doctor > has been a nightmare! > > > So... get this...I finally found one and when I went in there I was > first seen by her Medical Assistant to put all my information down > in their computer which is common. The problem was... he was from > another country and could not understand me or my caregiver. So it > took him an entire hour to write down 5 medications and what my > surgeries were and just a couple other things. > > > My appointment was at 2:45 PM but I had to arrive at 2:15 PM to > fill out the initial paperwork... which is always done with a new > doctor. > > > When the doctor came in she got straight to the point and faced the > computer 99% of the time statistically speaking. Then comes the > completely unexpected bombshells: > > > My husband or my sister or my caregiver have always been the ones > to pick up my pain med script every month at the doctor's office > because it is a controlled substance and that was fine over all > these years. Simply because it is easier for them to hop in their > car and drive over to get it rather than me going out, getting in > the van, and getting into the doctor's office just to get a piece > of paper every month. THIS doctor requires that THE PATIENT come in > every single month to get that piece of paper. IN ADDITION TO > THAT... THIS doctor requires random drug tests via urine specimen. > Again, never ever have I had to have this done in my life or since > been on pain meds since 1980. > > > I feel it is a form of discrimination. The reason behind all this > is because, most likely anyway, is because the illegal aliens are > jumping the wall and Mexico so frequently with illegal substances > and either abusing them or selling them. But the doctors should > look at the patient's situation and it be obvious that I am not one > of those people. > > > I did not go through this in the Northeast and I did not go through > this when I lived here in Tucson 3 years ago. So, again, all these > doctors have changed their policies as far as accepting patients or > going to this extreme if you are on a payment of any sort. > > > It did not occur to me at the time I was in the office since I was > in there for so long and after leaving here at 1:45 PM to get there > at 2:15 PM [because she is 45 minutes away] to ask her what if I > were bedridden [like I was between 2009 and 2012 and bedridden 24/7 > for almost the entire summer of 2010 when my Stage III wound was so > bad that it would be detrimental for me to get out of bed.  > > > Now I have to make a trip every 28 days that will take 2 hours of > my day just to pick up a piece of paper. I tried so very hard to > find a closer doctor and it did but that was the one who dropped > me.  > > > This e-mail does not even include what Dave brought up as far as > people not getting back to you no matter how minor or how important > the issue is. For example, I had some bladder pain a couple weeks > ago and asked my urologist to have my home health agency nurse to > collect a urine specimen to send out for culture and sensitivity. > This was a week and a half ago and I have still not gotten the > results! I have found this to be more and more common with getting > the results of culture and sensitivity results from any doctor. And > it is ridiculous because if I was in pain this entire time or had a > fever am still waiting for the results... I could be dead by now.  > > > Thankfully the pain went away but my urologist [whom I have had > since 2006] should have gotten back to me by now. I finally called > this morning and left a message with her triage nurse (the best > person to reach the quickest) but that was over five hours ago and > I think they close early on Fridays. Either way... ridiculous. > > > Since my husband needs to be a chief medical technologist and did > urine and blood cultures (and more) as a living in now said it does > not take longer than 2.5 days to get a culture and sensitivity > report no matter what doctors were laboratories are telling you > today. They usually say it is 3 days and I have been okay with that > over all these years but over the last several years I have always > been the one to have to call the doctor to get the results rather > than the other way around. Actually, even the home health agencies > have gotten the results earlier than the doctors and that is either > because the doctors are not paying attention to what is coming in > or what. > > > I was with a fabulous home health agency before leaving PA and now > I can barely get any help from the home health agencies down here. > Again, Medicare certified agencies are being discriminatory against > quads for a myriad of reasons and I am just so worn out after going > through 3 months of sheer hell trying to keep on top of everything > when the medical field should be helping you and taking care of you > rather than the patient having to call about every... single... > thing. > > > I have been treated like a third class citizen or something no > matter where I go. I have never ever been treated this way by any > doctor or any home health agency who are in the business of helping > patients and not hurting them. I have also been hurt by so many > medical professionals that it isn't even funny. > > > Well, I've had it for the day.  > > > ~Lori > > > On Fri, Apr 22, 2016 at 2:14 PM, Dave Krehbiel > <davekrehb...@earthlink.net> wrote: > >> >> My experience over the past eight years has been that many >> companies who provide services to quadriplegics provide a low >> level of service (and typically at a higher price). I think that >> is because they are small specialized companies who don't have a >> lot of competition. >> >> >> Severely disabled folks like us have an increased need for >> services, and a decreased ability to pay for them. >> >> >> There are some companies out there (such as a local landscaping >> company, in my case) who provide services at a discount or free >> to the long-term seriously disabled. I used to rake my own >> leaves, and paint my own house, and change my own oil, and so >> forth. Now our family has to pay people to do all these things. I >> keep wondering if there might be a way to create a directory of >> local companies that will offer service discounts to people with >> long-term disabilities. Or if there might be a way to identify >> and advertise local community minded businesses, and subsidize >> services. >> >> >> For example, I'd like to find restaurants who would give a >> discount to people in wheelchairs. After all, I can't visit most >> people in their own homes, and I cannot be as hospitable as I >> would like to be here at my house, and so local restaurants would >> be a great place to get together. And I would like to be able to >> buy discounted restaurant certificates as a way to say thank you >> to volunteers who come and help with household tasks. >> >> >> If anybody has interest in this sort of thing, or has contacts at >> a nonprofit which has programs along a similar line, please let >> me know. >> >> >> Thanks, and take care, >> >> Dave Krehbiel >> >> >> From: Danny Hearn [mailto:ddh...@sbcglobal.net] Sent: Friday, >> April 22, 2016 12:37 PM To: RONALD L PRACHT; Quad-list Post >> Subject: Re: [QUAD-L] just another day in quadadise >> >> >> Glad you got it Ron, you are right about trying to not get mad or >> hold resentments towards people because all that does it harms >> the one holding that stuff inside...On other hand though if a >> person tells you they will come in one of the next 3 days it is a >> shame they can't at least call and let you know about it, could >> be he just forgot or had other things of life come up on him. >> hope  you get it going soon, let us know. Dan H** >> >> >> On Thursday, April 21, 2016 10:49 PM, RONALD L PRACHT >> <r.pra...@sbcglobal.net> wrote: >> >> >> Well peeps, >> >> >>   I get my rio dragonfly( attachable powered handcycle) from >> ebay last week and I was happy about potential fun I would have >> with it this spring/summer. This guy I know told me he would come >> and help me get it fitted either tues, wed or thurs of this week. >> in preparation I read the manual , put some of it together, >> charge battery and get it set up to make it easy as possible for >> when he comes. I wait all week and the guy never shows up or even >> calls me. I told myself that I wasn't going to get mad so I >> rigged the legs of the cycle on jack stands in my room and was >> able to adjust them to the right length by myself. Its all >> together now and adjusted as well as charged. If my mom will just >> hold the front of the bike, Im going to try to attach it tomorrow >> for the first time. I would have tried that myself but the front >> end has a spring that brings the wheel back to center when you >> turn and that needs adjustment I think. Somehow..........someway >> Im going to get this thing going by hook or by crook. I guess >> anything you want bad enough you can figure out, but it sure is a >> big deal to do the simplest things as a quad. >> >> >> Ron