• entries
  • comments
  • views

Boring, yet aggravating, but this is my life right now (not complaining!)



OK this is for Sue, hope I don’t bore you all to death. Mostly all we have been doing the last two months is shoveling snow, and making big pots of soup and stews, but I guess a few other things have been going on too. Let me see…..



We had an interesting outing last Friday, during our temporary heat wave of 55 degrees. Ray was really looking forward to it; I had been pumping him up all week that we were going for a ride and a picnic on the beach, or to a winery for a glass or two. Anything to get out. The night before, I asked if he wanted to wait until Saturday instead, when the fog and rain would be gone, but he wouldn't hear of it. He was totally psyched, as was I to tell the truth. He insisted on picking up a couple of Quiznos heroes rather than bringing homemade sandwiches, then we went to one of the local beaches to eat them. It was so foggy that you couldn't even see the water, so we didn't bother getting out of the car. Watched the seagulls begging for our scraps instead.


It wasn't totally fogged in at that point, so we kept going and then I find out Ray also wanted to go to a winery. I had offered him one or the other, but he was being greedy! We ended up where we always do, at Martha Clara, and with the weather we were the only ones there. Ray got something new, a nice hearty red called 6025 (which is their address). Loved it but at $45 per bottle I didn't take any home. Maybe for the next really special occasion though. Martha Clara is owned by the Entenmann bakery family and Ray used to work for them when they were a little local place, back in the 1960s, so we feel a little bond. The shame is, there are at least 40 or 50 wineries within 30 minutes from us but we always default to this particular one. Luckily the wine is great!


After we left there, wow did the fog get scary thick. Then just as we got home, the thunder and lightning started. As I parked in the driveway, in the same spot that the tree and car had been hit two and a half years ago, the lightning was going nuts. We were both afraid to get out of the car even though we were only a foot from the garage door. Finally we had to, I knew our one cat would be going nutty, she has always been terrified of thunder and lightning since she was a baby. Anyway it stopped quick enough, with no strikes I'm glad to say. Quite the adventure. I'm not used to being out in bad weather anymore.


The next morning, the sun was shining and it was gorgeous, so I asked Ray if he wanted to go back to the new local/gourmet farmer's market in town and see what was there. I also foolishly told him that it has been so crowded every week that there are lines to get in. Maybe that turned him off but he said no, and settled down to catch up with his TV friends (Pawn Stars, Counting Cars, Orange County Choppers and Jesse James etc). I went outside to take a look at the yard, and my mulch bin. To my surprise the fennel is coming up already! I raked out the leaves along the front walk, because I saw the first crocuses and hyacinths popping up and I want them to hurry and bloom. Then I pulled down three of the four dead branches on the fancy tree by the street, they had broken during Hurricane Sandy a year and a half ago, but the tree is tougher than it looks so they never fell down by themselves, as I had lazily planned. It was sort of nice because for a change I was the only one in the neighborhood outside so I didn't have to chitchat. Once I start talking, I forget all about Ray being inside by himself!


The week before, the regular nurse was on vacation so they sent someone new. I told her she didn't have to come, we're seeing the doctor Tuesday, but I guess because she was new she wouldn't take no for an answer. First she said between 3 and 4, which is later than anyone ever came before. But fine by me, better late than early when it comes to Ray! Then she called and wanted to make it 5:00 and I said no, that's our dinner time. So then she said I'll go feed my horses and come by at 6. Anyway, she didn't show up until 6:30 after all that, her husband dropped her off and went to do the horses himself.


So first off she was really excited, turns out she knows our neighbors directly across the street, they used to be neighbors before they moved here. She hadn't seen them since and didn't even know about the baby they had right after they moved here, who is now 11 or 12 years old, so I showed her all the Christmas card photos they give us every year. Now we're like old friends: So she tells me a sad story, she had twins but one of them died when he was 9 in a car accident. That's how she ended up getting horses, she was so sad and was looking at horses for adoption online just to cheer herself up, not really looking to get one, and saw a baby colt named Anthony's Angel. Her son who died was named Anthony! Her husband said, you have to get it, so she did and raised it and broke it and then her husband got one too so he could hang out with her when she goes on group trail rides upstate. I told her about the Hippotherapy I'm considering, and she said that's what she wants to do; not as a certified therapy but just to let troubled kids hang out with her horse. She insisted that Ray come soon and check it all out, and Ray was very excited about that idea. I used to ride a lot when I was younger, and I took Ray out a bunch of times back then. He had no idea what he was doing but he loved it and at least he never fell off. So when we were on our ride Friday we also drove by the stable to see where it was, and lo and behold it’s right across the street from the model house which was the office of our builder. Small world!


I mentioned the horse therapy to our doctor the other day and he looked at me like I was joking. I told him, yeah I know, I just want to rip off Medicare with a wacky new therapy, hahaha. But then I did explain the whole theory, and told him how Ray was always so uncooperative with regular PT so I think he saw the method to my madness. I didn't ask for a scrip yet though, still more investigation to be done on my end. But there is a possible trip to Wyoming coming up this summer, to my sister’s in-law’s dude ranch, wouldn’t that be cool if I could get Ray up on a horse just to circle the corral or whatever?



Got our income taxes done for free at the library last week too, it's an AARP thing but you don't have to be a member to take advantage of it, just over 55. Did it with them last year too. We are getting back enough from the Federal to pay my house insurance bill which is due March 2 (hoping the Electronic refund comes through quickly!). Also getting a bit from the state, which I ended up having to mail in because there is a bio-fuel credit here in NY on oil deliveries, and that is giving me $190 extra, worth the extra time. Our state refund is always really late, definitely after April 1 because it ties in with the budget vote in Albany; but I have some fancy restaurant dinners planned for our anniversary and both birthdays this spring, so the extra money should get here just in time for those. I feel a splurge coming on! Funny, I didn't realize that most retired people don't even have to file returns; the woman who was doing ours doesn't do one either.




The nurse from the Dominicans came yesterday and finally signed off on us. Adios! She has been remarking the last few months how animated Ray is when he answers her usual silly questions; she knows I don't really notice it day to day so she always points it out to me. She truly seemed sad to see us go, I bet partly because Ray was very chipper knowing this was her last visit. He couldn't have been more pleasant, or dare I say, even charming. I think Ray knows exactly what he's doing on that accord, and is putting a little more effort into his interactions with the people that hold the cards. He can always save his crabbiness for me!


Saw his PCP the day before that, his next appt isn’t until July rather than the usual 2 or 3 months. Every one of his doctors is doubling or tripling the time between visits lately. I'm starting to wonder if this is part of the new Affordable Care rules but hopefully not. I am taking it as a wonderful milestone in his recovery.


Having a major issue with our new Part D prescription company that Medicare switched Ray to on Jan 1. As usual, it's about the Depakote; I know they cost something like $600 a month, but the generic the other company tried to force on us last year didn't work 100%, plus they gave Ray really bad diarrhea. Not going through that again! They did pay last months retroactively but then denied us any more. Ray's psychiatrist did contact the company but they said it wasn't enough information and denied it. So I called and was told I had to get involved. I wrote a detailed, two page letter and faxed it Friday morning. Ray didn't have even a week's worth of meds left by that point. They qualified my request as expedited and said I'd get an answer in 72 hours. I called every single day this week to make sure it didn't get lost, then finally yesterday I called and said OK time's up. So the lady looks and looks, and then says Good news! Your 40mg Protonix is approved. I said no, Depakote, you fool! (not really) I had to tell her three times before she realized (and said) that they had made a big mistake. This is something for acid reflux apparently, not anything that Ray takes. She tried to call that department and after a half hour said she couldn't get through but she would call me back. By dinnertime I still hadn't heard so I called and got someone else, and she told me the lady's name I spoke to and said I had to talk to her, but couldn't put me through. Meanwhile I scrounged and found a few more pills for Ray to get him through the weekend. There is NO way I am getting the generic just because I'm in a panic, been there done that with the other company. Then even if they finally approve it you still have to use those up first. So this morning it's back to the phones, because they're closed Sat and Sun (doesn't seem right but that's the way it goes).


UPDATE: Total fail now. After spending most of the day Thurs and Friday on the phone with them, now they're saying there is NO medicine waiting to be approved, As far as they're concerned the Protonix is it. My last desperate call was finally transferred to a pharmacist who is starting the whole procedure over again, he faxed the info to the doctor but since it was 7:30 PM on a Friday, nothing will even start to be done until Monday. Which is when Ray runs out. And I mean really runs out, I thought I had some of the generic leftover but I was wrong. I told the pharmacist this fact and said this is a time sensitive med and Ray will have seizures very quickly without it; his response was, well then take him to a hospital. I said Medicare will be thrilled to hear your solution, a few hundred dollars worth of pills versus a few thousand worth of hospital bills. Then I hung up and reported them to Medicare for everything, but didn't ask for a new company yet. Because that will be back to zero, starting sometime next week at the soonest. Oh well, I'm going to try to relax over the weekend and get ready for the next round.


Recommended Comments

So much to think about in your blog. I used to take Ray out and about any sunny day in winter. He got depressed inside all the time yet objected to me "dragging him around". It is a Catch 22 isn't it? I love that you have regular places, like the winery that you both love to visit. And your plans to try hippotherapy sound to be coming into line now.


Like all caregivers you are in a fight to get what is BEST for Ray and opposed to what the medical profession wants which tends to be "take this and go home". Without an advocate they would not do as well as they do. He is lucky to have you in his corner.

Link to comment

Now that I can't work it's a little bit about me too. But since it's the only therapy he gets, I try to make it interesting. Thanks for your kind words!

Link to comment

Hi Colleen, you are great, and Ray is lucky to have you! Keep on developing your idea about hippotherapy, sounda a wonderful plan.


Hope the weather is getting better, please that you have places that are "special".



Link to comment

ARGHHHHHHHHHHHH... our code for -- ( swear word) why- oh- why , colleen i do sugest you get the VA involved if for not other reason just to advocate .......

Link to comment

I do have Medicare on their case, filed a complaint and they are their boss; they also said I can switch insurance anytime since Ray is disabled or whatever his category is called, there is no time frame or limits. But that would set us back at least a week I'm guessing. If I had decided to switch Friday night we would have had a new company the next morning, but they still would have had to research to find someone who is not against that particular med and also accepted all the others too. I figured better to wait for an April 1 change if necessary and give them a little lead time. You can change anytime during the month and then the new start day is the first of the next month, I decided to give it a few more days, but to keep in mind that I might want to change for April 1. They assign you the company though so it's hit or miss.


Actually Ray is signed up to get his meds from the VA, if it all comes tumbling down. I just decided to go with Medicare instead, but nice to have options. Thanks for reminding me, I'll keep that in mind.


CVS indicated yesterday they might front us some pills in the meantime on Monday, so I will look into that after a few more calls. Depending on the snow of course! I knew it would be a problem but didn't imagine anything this bad.

Link to comment
Add a comment...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.