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Am I paraniod or what?



So. We went to Ray's psychiatrist Tuesday for a previously scheduled appointment, but my only goal was to get him to send through the paperwork to Ray's Part D pharmacy company to approve the anti seizure drug he needs so desperately. Ray has no issues otherwise, although he will if he doesn't get this prescription. They told me they hadn't sent it in despite the urgency I claimed; then when the doctor finally saw us he tried to tell me that it is really a neurological doctor issue. This despite the fact that he was the one that sent Ray for that crazy 4 day EEG last year plus he had already recommended this particular drug beforehand, whereas the neurologist only told us he sort of leaned towards that against Dilantin; he was not involved otherwise in this decision. I told this doc I don't care, give it a try, and he finally did as we were leaving. I saw the fax go through myself


So I waited til midday the next day, then called Humana to see what was going on. I finally had gotten the hotline to the pharmacy department during one of my last calls, although most were still rerouted to regular customer service. I finally got someone who knew something. They tell me that the doctor did fill out the correct info as to why the name brand was required vs why the drug was prescribed in the first place. BUT NOW the doctor didn't fill in his name or address or ID# . So I call his office manager and she says she will take care of it, no problem. She called me around 5PM as they were leaving, said I see what you mean about this company but I finally just got it approved. Hallelujah!


So I call the prescription into CVS, hoping against hope. They call me back an hour later and say they are out, but it should be in in 48 hours so they will give me a few days worth (again!) until they have it, by 5PM today. AT 5:10 today I call them and they say, oh the manufacturer is out of stock and we don't know when we will be getting any more. This nightmare just won't end!


Now here's the weird thing. A couple of hours before all this my Mom calls me from upstate, complaining how CVS was out of one of her regular meds and she had to drive a half hour away to get it at another location. Too much coincidence, although I didn't know it at the time. Now I tell the person on the phone about that scenario and she admits that over the last year they have been running into a lot of pharmaceutical companies having shortages, much more than she's ever seen. She calls me back a half hour later and found another CVS that I can go to tomorrow to get what I need, luckily. We were supposed to go for a fun ride but I guess this is more important.


You know in my last blog I also mentioned that all of Ray's doctors are doubling his time between appointments, which I want to see as a good thing but it's across the board with all four places. I hear all the bad talk about the changes in healthcare right now and my antennae are up. Something's rotten in Denmark, methinks!


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Col: the only issue I have with our Pharmacy - Rite Aid - is the Ditropan. Bruce must have the name brand. They have substituted twice with the Generic and I end up doing mounds of laundry. I explained that I don't care if it costs more-I will pay it. And Bruce's PCP did fill out the form that states the name brand is required. Bruce's Part D pays for it. The issue here is the Pharmacy.


I am thinking our Part D's pay for the generics right on time, no hassle; so the pharmacies stock up on those. When only one or two need the name brand and even have the paperwork in place to back it up, the pharmacies don't pay as close attention to the inventory.


I even put the Ditropan on auto-refill, hoping that would help. It is one of the few meds he is taking that is not being adjusted currently. Now when Bruce uses it up, filling a week's worth of his pills, I call them. And I told the Pharmacist I did not need "attitude" from the Pharm Techs. Yes, I know it is on auto-refill but I need the BLUE pills, please check their stock so I will have it in a week. Even so there have been times when I have had to take a few of the generic just to get us by.


I do understand how difficult this time is for everyone in Healthcare. I also understand how difficult it must be to keep local pharmacies afloat. Our Part D has it's own mail-order pharmacy and yes there is a savings. But right now, with all the changes in Bruce's medications, that is just not feasible for us.


But I certainly understand your anxiety over the Keppra - that is seizure medication and imperative to keep his levels even and therapeutic. Sorry about the huge hassle. Maybe you can fit in the fun ride later. Debbie

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yes this isent gonna go well -- i dont think so, not at all....... like we dont have better things to do than chase a doc around to get everything done... and go not one or two extra miles - but colleen looks like she is gonna have to DRIVE extra miles ...

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These issues just started this year, Jan 1 to be exact, when we were forced to change Part D; maybe it is Humana (based on their attitude on the phone) or maybe it IS CVS but at least they're helpful and forthcoming. I will not go with mail order because if something goes wrong there is too much of an overlap in time. Maybe I should just switch to the VA.


Ray's off the Keppra since early last year, which was generic anyway (and maybe why it didn't work) and on name brandDepakote now, which has the desired side effect of allowing him (and therefore me!) to sleep at night. Because of that, I am adamant about name brand. Not to mention the recent findings of generics, of which the majority are coming from out of the US and have been found by the FDA to have rat *beep* etc embedded in them, no wonder the diahrrea is a common side effect.


Yes my plan is to hit the pharmacy first and then the rest, as much as possible; if only Ray wasn't such a late sleeper!

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Colleen i think you would have a lot less run around with the va once all the dots are done and the t's crossed--- and i believe he would have a casemanager person who would do all the coordinating.... i have to say our nurses who come in pretty much take care of everything in terms of coordination , contacting the doc , getting scripts renewed - keeping the inventory needed for IV'ing... it is sad to think of the care ray gets as oppossed to what dan gets.... and that is a agency thing not a insurance thing... we have a va clinic annexed to the hospital and everytime i walk past it i think of ray....

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I am afraid to think if someone else was in charge of all the paperwork and phone calls; this has been a full time job for me the last month or so. At least I've learned a lot. Unless I was a millionaire with a private secretary, I can't imagine anyone else having to time to deal with all that's gone on lately.


The VA was always a backup plan, and still is. But we chose Medicare and Part D comes along with it. And with the VA he'd have to pay a couple of bucks for his meds where now they are free, so there's the good part. I had a friend who used the VA for his meds and he was happy enough, but I seem to recall they had to be mailed to you and that scares me, too much chance for error and too much time to correct any mistakes.


As time goes on I am realizing that the old saying "You get what you pay for" is so true. Then again, I always got the runaround when we were on COBRA too, once Ray started racking up the bills; healthcare just isn't what it used to be. It's like you're the enemy! I have to say I was very impressed with the VA doctors though, they really know everything when it comes to brain injury. I'll have to keep that on a front burner for the future.

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i guess the thing for us is that - the nurses do just take care of it ( remember this just started about june last year - before that it was all up to me ,) the nurses can get through faster, response way quicker - i used to wait for 2 days for a call back . now by the end of the afternoon i know what they know.. dans seizure was reported to the doc via the nurse - who ordered a complete blood panel , and levels of drugs. so the nurse showed up with all the needed supplies and took the blood , then took everything to the clinic/lab.... in ref. to the V.A- with all the brain injured individuals coming home from the service - sadly - the docs have become specialists ....but in your case with all the chaos with the agencies you have had to deal with i would be just like you - cause about 90% of the time they get it wrong... that is what makes me feel so bad about rays care ( from the agency NOT YOU -LOL) as oppossed to the care and coordination we get from our agency.... i just thing about the BIG PICTURE - ethics involved. Remember on facebook i posted something once about BIG being a disease... not just a overweight human, but a farm to big, a store to big, a hospital to big--- once it goes to big it loses it's whole (root) purpose - once the goal is to make money as opposed to provide service it becomes diseased.... that even has a biblical root to it - something about the farmer who starts to farm for money instead to provide for his family -looses his soul - type of thing... Ray is lucky to have you...

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Thanks for your kind words. Oh well, we just lost our real time nurse after almost two years, by choice; now I have one that will call me once a month for 5 or 10 minutes. I do get a lot of free supplies though.


We never had your level of care anyway, our nurses always just called our PCP if a problem (and the office told us they knew her and that she was a pain in the butt as in off the wall, and not in a good way). I I have a feeling there are a lot more legalities in play here. I watched and learned and guess it's time to take over myself. I've done enough customer service and sales and management that I have a little insight in how to navigate the system. Plus we have a big hospital 5 minutes away, with carte blanche, so I can always fall back on them if there is any question.


As I tell them, all I want from the agency is a caregiver, is that too much to ask? (Apparently yes). Just a few hours a week. Maybe here it is easy to get caught in between the cracks, so many in the system. I'm a fighter though and I hope I proved it these last few weeks.


PS I did go to Wading River this morning and I did get the rest of this months pills. In about 3 weeks I will start calling CVS and get way ahead this time, until I feel certain of the outcome. We went for a ride today, all the way out to Orient, and I mellowed out enough to say to Ray: Remember before? We were like everyone else, if something strange happened we just ignored it out of ignorance. But now, if the tiniest thing happens I freak out like it's the end of the world; where is the middle ground?

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Colleen: a lot of it, for me anyway, is that it never ends. There is always something. I planned the whole week just to give us today off, with the weather forecast. Out for breakfast, off to our favorite farm market, nice long ride. I planned ahead with an easy dinner so I could fit in a shower and some lady stuff. 2pm - BOOM - the accountant calls. She doesn't like the way some forms were coded. So an hour on the phone and more time to xerox and mail what she wants to see - there goes the nap.


The Public Works Department has spent the winter using my mail box as a hockey puck and the mailman, who has been wonderful, is getting to the end of his rope. Do you think I can get one of Bruce's friends to come and nail it back on the post? Yes, the post is still standing. And now the dryer vent hose has to be replaced. I am going to bungee cord the mail box and Mary and I will do the dryer hose - I had repairman walk me through it.


So no help and the hits just keep coming. Yes, where is the middle ground? Debbie

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Debbie - remember the commode bucket ---lol.... I DARE YOU !! or i used to say to the employees i supervised - I will give you one whole dollar if you ________... lol good memories,, and i agree even though we get pretty good care - it does seem that we move from one issue to the next - IT is always something... Kinda like my plan to return to work just a few hours of easy menial stuff - and we get illness galore a seizure and erika moved to MT ( although i am happy for her- yes it was a boy who compelled her move ) so now i am down to just beth here FT - erika plans to come home every other weekend and help out at least for a while... so i am starting to emptynest a bit - but with weston coming often that helps.... Colleen - it is true you are becoming more of a fighter -- good job -- can i pat myself on the back for that --LOL?? You have been shellshocked for so long that the "old" you with a little *beep* and vinegar is finally coming back .... good , nice to meet you. just wish the old/new you could get a little timeoff now and then...

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No that was the old Ray, he was my bodyguard. I just had to tell him someone annoyed me and he was all over it. And he always won!


It's been a long row to hoe, but at least he's still here to guide me somewhat. And he too is getting the old fight back in him, I'm starting to hear a lot of sarcasm from him lately. That is a MAJOR development in his recovery: His old self finally showing its face. Watch out, world!

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