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 > > > -- "Petting, scratching and cuddling a dog could be soothing to the mind and heart and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
