January 2024 chitchat--HAPPY NEW YEAR!

[Ikoiko]

We finally watched Oppenheimer and all of us liked it very much. I actually worked at Los Alamos for a brief time.

[flatcap]

In the late '80s, I worked at Sandia National Lab in Albuquerque for a couple of years. That was in research, though. I was not involved in weapons production.

[Virginia]

Hello Everyone,

Ikoiko, so glad you finally got to see Oppenheimer. If I see where it is back on again, I will watch it based on your recommendation.

I have been busy, stressed and now sick with a cold. I appreciate you posting about the financial assistance for MS drugs Agate. I worked the phones for two days. I felt like pulling my hair out. I was on a lot of that time with the pharmacy that supplies me with my MS drug (Rebif). I was notified that Patient Access Network had MS money available. I had already been told that I had to have a zero balance before they would give me another grant. I had $367.66 left on my last grant. They told me how to get the pharmacist to zero it out. Tuesday, I talked to countless different people, but I assure you that with Optum Specialty Pharmacy you can't get a pharmacist on the line. These grants are first come, first served so time is of the essence.

I talked to several "patient care coordinators". It sounded as though they are just people sitting at home answering the phone. I got one that was halfway bright eyed yesterday, Wednesday. I explained what was at stake for me and what it would take for me to get the grant. She said she talked to the pharmacist, and he didn't know how to do what Patient Acccess Network had said needed to be done. After a day and a half, I gave up on working the pharmacy.

I finally just ordered a shipment of my medication so they would take the more than three hundred dollars out of the grant and I paid $2885.21. After I had done that, I was sitting at my computer and an alert came through from HealthWell Foundation saying they had MS money available. I had applied at both PAN and Healthwell. I went on Healthwell and it appears that I did get the grant with them. I am pretty sure I did. One place said it depended on certain information that they needed, but another place on their portal said those things were waived. This afternoon I checked my e-mail and there was an email from PAN saying that I had a grant with them. I wonder which one will give me my $2885.21 back the quickest. There is nothing more stressful than what I have been going through for the past couple of days.

I had been coughing for a couple of days and after going through all the above, I just really wanted to get some rest. However, I had someone coming today to clean my carpet. That meant that late yesterday I had to pick up all the pieces of my plant stand that I broke when I fell, and double bag it in heavy duty trash bags and carry it to the trash and then vacuum the rest of it up. I also vacuumed the rest of the carpet before they came today. Since I didn't change my bed linens Tuesday, my usual day, it meant I needed to do that. So, I washed sheets and put fresh ones on my bed. I was already feeling bad and yes I admit I overdid it. I came on here Tuesday night and Wednesday night thinking I might post. When I got on both nights, I was so tired I just couldn't.

I had to go out today. The wind is blowing and it was brisk but I just went to the pharmacy. I had put food on in the crock pot this morning, but I just wanted some chicken noodle soup, so I stopped at Chic-Fil-A and got a bowl and brought it home. I need to finish up my crock pot dish and have it tomorrow night.

I want to put in a big order with Instacart tomorrow, but we will see what tomorrow brings.

Hope everyone on here is well.

[agate]

Virginia, your experience trying to continue on an MS drug you've been taking for years is a disgrace. This is one situation where an MS organization could make itself very useful. Where are these people when the need arises? They could be keeping tabs on how to pave the way so that a smooth transition is possible when finances are involved. They could stay informed about the possible resources and connect the patient to them.

In fact, why aren't they doing more? I think I'd be on the phone with the National MS Society, the MS Foundation, and the MS Association of America and telling my story. After all, it is generally accepted that people with MS should be on an MS drug unless there's some reason not to be. These organizations have helped to advertise and promote these drugs. Since they are so costly that nobody could possibly pay for them out of pocket, it is unconscionable that they are dangling them in front of people and then obliging them to play a game of "How much do you want this drug? How many hoops are you willing to jump through?"

People with MS tire easily and have trouble concentrating. Presenting us with a maze to find our way through just to get a medicine that might (or might not) help us seems cruel.

Too bad you have a cold, Virginia. I seem to have one too. I may have picked up something from the grandchild because I forgot to wear my mask when he was here, and he had a cough. I've had a sore throat and a cough for several days now but so far I'm getting along on Robitussin-DM and not feeling bad so long as I don't overdo.

Unlike you, I don't have to get ready for carpet cleaners. I can't even imagine doing that just now.

I'm glad Chick-Fil-A was there to bail you out on the food, at least.

Optum Specialty Pharmacy sounds like the same place that United Health Care keeps sending me information about. I went to its Website once or twice and was tempted by the idea of having all my rx's mailed to me. But I haven't ever made the change. I have my doubts about whether Optum would get an antibiotic to me fast enough, although they've assured me that they rush rx's to people if needed. Now that you mention that Optum makes it almost impossible to get a pharmacist on the line if you call, I'm glad I didn't sign up with them.

It's difficult to get a pharmacist on the line with the (supermarket) pharmacy I use but it does happen. And they're right here in town, with a real address, not just an 800 number off in the middle of nowhere. When it comes to pharmacies, I find that comforting.

[agate]

I hope you're recovering, Virginia!

[Virginia]

Agate, I couldn't have said that better than you did in post #19 about the pharmacies. What a way to start out the New Year. It has been something every day all week. Being somewhat sick did not help at all. I am better today, but not well yet. By the way, United Health Care is also my insurance, and I received a letter from them last year stating that if I didn't use Optum Pharmacy for my Rebif that they were no longer going to pay for it. I pay UHC $272.75 per month for my medigap policy and $109.00 for my part D, but they get to tell me where I can get my medicine. I don't think it is right. I quickly realized that there was some money being switched around and later read that many of the insurance companies are now in with the pharmacies, and are getting kick backs on these high-priced drugs. The rest of my drugs I still get from Walgreens. I do not want to get them from Optum because they might get left out in the sun in the summer, or Optum might say they couldn't fill something when I asked them to. At least now I can ask when they can. I would always be anxious about my medications.

I will take back up where I left off Thursday. Thursday night after I had posted on here one of my brothers called and by that time found me quite sick. Thinking I might have COVID, the youngest, Eric went to my brother Fred's and got some COVID test and brought them over here at 9:30 that night. At 10PM I was on the phone with Fred. He wanted to walk me through the test because he was afraid I would just halfway do it since I was feeling so bad. So, he went step by step. These are supposed to be the latest super-duper test. Well, thankfully I tested negative. I went to bed and didn't get up until noon Friday.

Eric called while I was still in bed, and I told him that my medicine would be on the front porch and that I was going to get up and go get it in. Well, I was surprised to find it wasn't there. I waited thinking it would come and that they were just running late. Finally, I got very anxious and called Optum Pharmacy to get a tracking number. I finally was able to get it written down. My writing is hard to read when I am feeling bad, and of course I was getting nervous about the medicine by then. It came by UPS air overnight. Much to my surprise the tracking number stated it had been delivered at 9:27AM. I started trying to call UPS. I got one live person on the phone who informed me that I had as much information on my internet as she did. She said that was where she was getting her information. She told me there was a picture of the box on my front porch. I told her it wasn't my porch. I then found the picture, and of course it wasn't my porch. It only showed the box sitting down low. I couldn't see all of the door, but the porch looked bare except for a very small door mat right up at the door. I could see there were no sky lights on the side of the door, which my house has. I also have planter boxes and other things on my porch. I wasn't even sure it was in my neighborhood.

I quickly called Eric. He said I am on my way. He told his wife about the skylights, and she called a friend of hers from church that lives out here. She told her that some of the older units do not have the skylights. Eric got Fred on the phone, gave him the tracking number, and they stayed on the phone together with Eric asking at each doorway he was checking what the picture looked like and describing the door he was seeing. He didn't have to stop at any other than end units that look like mine because they are the only ones that have porches. The others only have small little overhangs. He went door to door. Several times people stopped him and asked what he was doing. He quickly told them, and he said they were then nice, and he kept going. The doors to houses like mine are on the side of the building. Mine comes straight down the sidewalk, but some of them have sidewalks that curve around before you get to the front door. Finally, he saw a house with a big box sitting on the porch and he said he knew he had it. It is pretty dark here by 5PM and he got to my house with my medicine about 5:35PM. He said he was determined to find it if he could. He and I were afraid someone was going to take it in, and just say the heck with it I'll get to it tomorrow or whenever I can, not realizing that it contained medicine that was packed in ice. Even as it was, I was lucky it was not summer, or it would have been too bad as hot as our summers are.

I have to say, I do have wonderful brothers!!

Today, I was unable to get an Instacart order in because the internet, land line, TV and everything was out until about 8:30 tonight. I will try to get it done tomorrow. I think that is about all that has happened around here since I last talked to all of you. But the way the New Year is going just stay tuned because so far it scares me.

Agate, I hope you are feeling better and about over your cold. I hope everyone else is having a good start to the New Year.

Virginia

[agate]

Oh my, Virginia! I'm so glad your brother was able to locate that package. Under the circumstances, Optum RX should have sent you a replacement shipment by whatever the fastest method is--but maybe even that wouldn't have been fast enough? You and your brother shouldn't have had to go scouring around the neighborhood trying to find a prescription drug delivery.

I've had UPS or FedEx deliver my packages somewhere else too but I don't get rx's by mail any more. Even when it's just an ordinary package containing some item I ordered, it's a big nuisance to go chasing around looking by neighbors' doors for it but that's what UPS or FedEx will tell you to do if you report that you didn't receive a package. The photos of the deliveries that they take (sometimes) are helpful though.

I"m so glad there are still helpful people in the world like your brother, Virginia!

So United Health Care is pretty much forcing you to use Optum for your Rebif? That seems so wrong. They could easily decide to do the same thing with my Glatopa. I'll be watching for a notice about it. I've been getting lots of mailings and e-mail messages encouraging me to use Optum RX for quite a while now. They must be really eager to sell people on it.

I'm still coughing and dosing up on the cough syrup. I'm so very glad that I've had only a couple of coughing spells. Years ago I had several bouts of this kind of thing every winter but they were much much worse. I'd lose my voice entirely and be up all night coughing nonstop. It would wear me down, and I'd be feverish and lose my appetite and have to go on an antibiotic. I think that this time I'm getting the better of it before it turns ugly. It's been 6 days now and the trend is upward.

I'm so glad we heard from Ralph (Tom Cat) after so many months. He's had a rough time there.

[Virginia]

Agate, thanks for getting the post from Ralph to us. I too had been really concerned about him. It has been a long time since his last post. I am still very concerned. The winters are so long and harsh where he is. I just hope the couple that is helping him are close by and checking on him a lot. Since he was in the hospital fairly recently he should be getting some home health care I think. Not sure about that.

About United Health Care and Optum Pharmacy. It is true that UHC said they would no longer pay for my Rebif if I did not get it from Optum. I had ignored their request until they said that. The first statement after that showing how much my drugs cost Rebif went up. Then later I read in either the Wall Street journal or the Washington Post that insurance companies were getting money back from drug companies. That confirmed my suspicion.

As far as getting another shipment when we thought mine might have been lost, it wasn't going to happen. First of all United Health Care would not have approved it. Secondly, when I agree to the shipment over the phone or on the internet I am informed that it becomes my responsibility and I agree to their terms. No way around it. I would have been out the medicine and until I could file a claim with UPS I would have been out the $2,885.21 that I had put on my credit card. I had to hope that I could get the claim approved with UPS. I don't know what kind of documentation I would have had to have from Optum and since there is no one you can really talk to other than whoever answers from their home, I am not sure how involved and long it would take. Regardless, I would still not have the medication.

Agate, more and more, things are changing in this country. I still believe it all comes down to greed, and we at the lower end of the financial chain pay the price.

It sounds like your cold is hopefully on its way out. I sure hope so. I use to have the same thing as you when I would cough and cough until it would wear me out. I have only minor coughing today. I haven't been using my voice today. I haven't been on the phone or talked to anyone in person. Also with this episode I had a dry cough, which was different.

[agate]

Virginia, I hope you don't end up having to pay nearly $3,000. When a drug is that costly, it's truly sad that Optum has no more direct way of contacting someone there to get this straightened out.

I think you're right about greed. It's what drives the economy, seemingly.

Yes, using the voice seems to bring on a coughing spell. I'm trying not to talk much at all and very gradually I think I'm getting better. I'll give it 2 weeks and then I might check with the doctor about an antibiotic. I'm going into the second week now.

[Virginia]

Agate, how's your cold? Also your cough? I do hope you don't have to make a trip to the doctor.

Flatcap, hope all is well with you. We haven't heard from you in a number of days.

After placing an order with Instacart how long does it take to get a receipt from them? Agate, I think you have ordered from them. I placed an order yesterday morning and received the order before 2:30. I still haven't gotten a receipt. There were a couple of things not right and I would like to see how I was charged and how much for each item. They don't bring a receipt with the groceries.

We had some rough weather this afternoon. We had been warned of high winds and heavy rains. Well, we got it. I watched on TV as the storm went over the little place where my brothers live. I was pretty nervous. They are fine, thankfully.

[agate]

About Instacart, they should send you an e-mail showing the receipt (itemized) and giving you a chance to rate your order and adjust the tip if you want. If you didn't get that e-mail, something is wrong. It just might have ended up in a Spam folder? If you can't find it, you should contact them. It might turn up in your account on the Instacart Website where you'd be able to see it that way, but they should send you that e-mailed receipt.

Once or twice one of their grocery orders has come along with the grocery store receipt included in the bags that are delivered but usually the only receipt is the one that comes by e-mail. Or maybe you're using your phone only? I'm not sure how it works when people order by phone. Maybe they get a text with the receipt?

Instacart always takes more out of your account (debit or credit card) than they need for the order, and sometimes it's several days before the adjustment is made in your credit or debit card account but I think you're talking about the itemized receipt that shows what you paid for each item.

I'm happy to say I think I'm really getting the better of this cold. In the past when I often had sinus infections doctors wouldn't want to look at a cold unless I'd had it for at least 2 weeks already, and now I'm only starting the second week but already am sure it's not going to turn into a sinus infection or a chest infection that will need medical attention. I've cut down on the number of times I take the cough syrup today, and that is great progress. I was taking the maximum dosage there for quite a while. I have a little more energy and can do more.

In fact, yesterday I pulled out the upright vacuum and ran it around, trying to get rid of any dust that might be making the cough worse. I felt better almost as soon as I'd finished that job. It was easier to breathe.

I was so inspired that I decided to replace the 3 filters in that vacuum, and I spent most of this morning on the Bissell Website trying to make sure I had the right part numbers. Like everything else, vacuums are so complicated that nobody can figure them out easily.

Blast from the past: my mother had a vacuum. You plugged it in, and it ran. You emptied out its bag. End of story. To be sure, it had no attachments and no filters and it didn't light up. This one I have now does everything but whistle a happy tune.

[Virginia]

Yesterday morning I was smelling gas from my gas logs. The husband of the lady who owns the cleaning service came with them about 1PM. He stuck his head in the door and said the word gas. I said yes I can smell it too. He said it was very bad. He left the door open to air the place out and went on my deck and turned a little handle down close to the bottom of the deck that turned the pilot lite off. He told me to call the gas company. I did and they had someone out here in no time. He said the logs were fine and it was working real good. I kept asking why we had smelled gas. He told me he didn't know that I should burn them last night and see what happened.

He left the pilot light on and he left. Almost immediately I smelled gas. The cleaning lady's husband had left, but he came back to pick them up. He stuck his head in the door and once again said he smelled the gas. I told him what the gas man had said and he said no that was not right. He told me it was not good for me. He again turned the outside valve off and told me I should not burn the logs until someone definitely fixed what was wrong. So, I don't have any gas logs to burn if it turns real cold. I feel sure I will have to have new ones, but they will have to wait a while.

I was going to eat a bag of Skinny Girl popcorn before going to bed last night. My house was clean and smelled fresh after it had been aired out, and I was feeling better about life. I went to the pantry to get the popcorn and knocked a new jar of bar-be-que sauce on the floor. Of course it crashed and the bottom busted completely out. I had to change my mind from the popcorn to cleaning up the glass and mess it had made. It took me an hour and 20 minutes to feel comfortable that it was all up.

My power went out during the night. I had to go to the bathroom once during that time. I had a flashlight by my bed so I used that. Judging from the clock on the stove it was out about 4 hours. My brother said the wind blew so hard he was almost certain they would loose power but they didn't. I know it was bad where I am when I started to get popcorn. After that I think I was too busy to pay it any attention.

[agate]

Virginia, when is this run of bad luck going to end for you? It doesn't sound good about the gas logs, and losing power during cold weather is always bad.

I have a great fear of dropping any glass container, especially one full of something liquid or sticky. I'm so afraid of this kind of disaster that I'll pay considerably more to get something in an unbreakable container when there's a choice. Cleaning up the sticky stuff is hard, and cleaning up teeny-tiny glass fragments is ever so much harder. I have a way of finding more glass fragments on the floor days later, and I wonder how I missed them when I was trying so hard to get all of them.

I hope that at least your cold is going away, and maybe with the power back on and the mess cleaned up, you can sit back and have that popcorn. You certainly deserve it!

Snow was forecast for us here but it depends on whose forecast you're looking at. If there's snow tomorrow, or even ice on the streets, my groceries won't be delivered and I'll see if Instacart can come some day soon.

Yesterday the weather was getting bad when I went out with the trash, and a nice neighbor happened along and offered to take my trash the rest of the way to the dumpster for me. I am so glad to have helpful neighbors like that one. He is a Ukrainian man and I helped him a couple of times in the past with some language problems. People here think everyone who doesn't speak English is Russian but some are Ukrainian, and there are Romanians as well.

[flatcap]

Virginia, I am sorry to hear about all the trouble you are having. In light of your gas log problems, now would be a good time to check your carbon monoxide alarm to be sure it's working.

[Virginia]

It is good to have helpful neighbors. My next door neighbor called me tonight. She and her husband were just checking on me. They do that occasionally. One called this morning to check. I always appreciate it. As to why this cloud continues to hang over my head, I just don't know. It started with the New Year and I am hoping it will soon end. I didn't do anything today other than my exercises. I am hoping to get back to normal. I hadn't done any exercises lately because so much has been going on. I can tell it in my movements and felt that it was time to rest a little and do some exercises.

I am going to have my popcorn now. I hope Agate is getting well.

Flatcap, you are right about now would be a good time to check the carbon monoxide alarm except that they turned my gas logs off on the outside and they are not sending another person out to check them until February 19th. I miss them. There are a lot of glass windows where I stay and when it gets cold they help out.