November chitchat

[Snuggles]

Agate, I stopped the Avonex in November 2020 so it has been a year already. My mri's that I had last month of my brain and spine are stable from the previous ones over 5 years ago. I seem to be stable so far. I have a followup appointment with my new neuro after Thanksgiving to discuss my mri results and the decision of whether to stay off of Avonex. Currently I am not taking any MS disease modifying drugs.

Interesting info on the new drug you linked to. I wonder if it is a pill or injectable. I am glad to see new drugs emerging, now if they could only cure and reverse the damage that has been done! I worry about the co-pays for the new drugs since they are always specialty tier drugs. I was on a assistance program for my Avonex and I didn't pay anything for it. Before the assistance program I was responsible for $250 per month for the co-pay.

Virginia, It sounds like your brothers are excited about having all of you together for the dinner. I am glad you decided to let them make the arrangements. Just relax and enjoy everyone being together especially after the year we just had with Covid. Let us know how it goes and what you had to eat. Inquiring minds want to know!

I haven't watched the Golden Girls on Hallmark yet although I watched all seasons of the Waltons last year. It brought me back to my childhood when I watched it and it also reminded me of a much simpler time.

I love Christmas time and love to decorate. We decorate 2 live Christmas trees that we get right after Thanksgiving. We also decorate throughout the house and my husband decorates the outside of the house. I love putting all of the decorations up. Last year I was decorating for Christmas before Thanksgiving! I enjoy the decorations for the month of December but I am ready to take them down before New Years Day. My husband like them up until after New Years so I usually am taking them down January 2nd. As much as I love putting them up I hate taking them down and putting them away. It seems like so much work!

Many of my decorations were made by my mother who was a decorative painter. She also loved ceramics and I have many of the pieces she made. I remember her each year as I decorate using many of the items she made. I am sure that is one of the reasons I love decorating for Christmas. She always made the holidays so special during my childhood and while my children were growing up. I miss her and my dad greatly during the holidays.

I am trying to gather the energy to go grocery shopping today. I'm not sure if I will succeed.

Have a great day!

[agate]

Snuggles, tolebrutinib is described here as oral--probably a pill?

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[Virginia]

Snuggles your Christmas sounds wonderful. It is fantastic that you have so many of your Mother's Christmas decorations. It must be really nice to know that you will be able to pass them on to your children.

My Mother was a big Christmas person. She loved the music. She sang in the choir at church and really loved music, but Christmas was her favorite. I guess this might have started with her Father who had a beautiful tenor voice and was choir director when she was growing up. My Aunt was a piano teacher. She tought until she was in her early 80s. She also played the piano and organ in church. She was my Aunt Virginia, so now you know why I have that name.

When I took over Christmas after my Mother passed away we started doing quite a bit of decorating. We had a live tree in the living room and a false one in the den. I could never make it like going home. But we all tried to have a good time.

I have had two bad nights. I had planned to run at least one errand yesterday, but I slept very little Sunday night. This may have been due to stress. I put off the errand until today, but then slept even less last night. I am allergic to msg and I thought I had gotten some in some food, but I couldn't figure out where. My heart was beating hard and that is usually a sign I have gotten hold of some msg. But then when I walked in the kitchen this morning I saw a pill laying on the floor and knew that could do it. I was putting a couple of pills in my mouth and one didn't make it. I am going to shoot for Thursday on the errand.

[Virginia]

Snuggles, you mentioned what you had to pay for Avonex when you were taking it. My share for Rebif is $491.21 per month. The total cost for this drug now is $9,701.33 every 28 days. These drugs have gotten just out of range. My share is after the Part D prescription plan pays. My assistance for this year has ended. If I do not get more assistance in 2022 there is no way I can get this drug.

When I have exhausted all other avenues I will call MS Lifelines to see if there is any help there. Every year at this time I begin to stress out. If I mention any of this to my brothers they do not understand, they just say that their insurance pays all of their drug cost or they have just a small co-pay.

[Ikoiko]

When I started on Betaseron, the total cost was about $800 month in 1997. Of course I paid much less with insurance.

[Virginia]

Ikoiko, just think from hundreds to many thousands.

[agate]

Some drug companies are probably doing very very well these days.

[Snuggles]

Regarding the cost of medication I am glad for the development of new MS drugs but am dismayed by the cost of the drugs. I thought my copay of $250 was bad but a copay of almost $500 is unreal. Virginia I hope the MS Lifelines comes through for you. No wonder people stop taking the drugs, they have to eat! People who do not have medical conditions that require these specialty drugs do not understand. It sucks that we have to deal with this lousy disease and have to struggle to get/pay for our medicines.

I am glad that most of the new drugs are oral pills. I hated the weekly shots. I only gave myself a few of the shots and when I did it took forever to stab myself with that long needle. My hubby used to give me my weekly shots and I really appreciated that although I don't miss the shots!

I never did make it to the grocery store. Now I will either wait until after Thanksgiving or fight the crowds next week. Most of the items on my list are 'stock up' items for the winter so it can wait a week or so.

I got my covid booster shot yesterday. I woke up in the middle of the night feeling achy and a little nauseated and could not get back to sleep. I took my temperature but didn't have a fever. I took some ibuprofen and after a few hours was able to go back to sleep and slept in this morning. The only symptom I still have is a sore arm. I am very thankful to get that behind me.

A few hours after my booster shot I did get my mammogram results and everything looks good! Every year I hold my breath until the results come in. So I am 6 years out from my bout of breast cancer.

Just taking it easy today. I have a load of laundry in the washer (sheets) and that is probably all I will do today.

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

The cost of all pharmaceuticals is obscene. If we are lucky, the government will pass a measure to reduce drug costs. From the NYTimes:

WASHINGTON — House Democrats reached a deal on Tuesday to add a measure to curb Only registered and activated users can see links., Click Here To Register... to President Biden’s $1.85 trillion social safety net plan, agreeing to allow the government for the first time to negotiate prices for medications covered by Medicare as they pushed for a quick vote on the bill.

Negotiators were also Only registered and activated users can see links., Click Here To Register... to reinstate a federal deduction, capped in the 2017 tax cuts signed by President Donald J. Trump, for state and local taxes, which would benefit people in high-income states like New York and New Jersey.

The prescription drug deal is limited. Starting in 2023, negotiations could begin on what Senator Ron Wyden of Oregon called the most expensive drugs — treatments for cancer and rheumatoid arthritis, as well as anticoagulants. Most drugs would still be granted patent exclusivity for nine years before negotiations could start, and more complex drugs, called biologics, would be protected for 12 years.

But for the first time, Medicare, the federal health insurance program for people 65 or older and for disabled people, would be able to step in after those periods, even if drug companies acquire patent extensions or otherwise game the patent system.

Full article here, if you can still get in:

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At least they are trying to address this long-standing problem. I do not understand why it will take 2 years before any negotiations begin, but then Big Pharma has lots of lobbyists. That is why biologics get a 12 year protection in this deal.

Jim's chemotherapy drugs were about $6k per infusion; his Opdivo (immunotherapy) infusions were over $9k each. Medicare didn't pay the full amount, but still that is ridiculous.

Snuggles ~

Great news on your mammogram results! I'm glad that your side effects from your booster didn't last too long. I hope that you are resting and feeling better now.

Howie ~

We haven't heard from you since your fall. I pray that all is okay with you. Please check in when you can.

Prayers for all ~ be well and strong, and stay safe!

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[agate]

Snuggles, congratulations on getting past the side effects of the booster shot! And that's really good news on the mammogram--I've heard that if you get along OK for 5 years after having cancer, you're regarded as cured of that cancer.

Howie, it would be good to hear from you and to know how you've been doing since your fall.

Today I tried to sit in on a Zoom session where some experts were going to outline the new legislation designed to improve broadband service for everyone in the US but my computer wasn't up to doing Zoom as it turned out. A recording of what was said at the session will be e-mailed to me, and I hope to get hold of it soon.

[Virginia]

Snuggles, so happy to hear your news regarding your mammogram. I remember holding my breath like that after I had be breast cancer.

Agate, after my bout with cancer, what I was told at UNC Women,s Center was that if I had cancer somewhere else, such as colon cancer even 20 years or more after breast cancer, it is really breast cancer. The Surgeon who operated on me over there told me that it meant that a cell was left in my body. He said you hope that if one is left the body can absorb it. He may have been trying to put some fear in me because I was more focused on my MS. Their job was to focus solely on cancer and they were about the most focused team I have run into. I don't know if that is still the school of thought or not.

Snuggles, I am anxious about the drug because while it is the monthly copay, on Medicare Part D you have to pay way over $2000.00 in January and February then the $500.00 every 28 days kicks in. It is ridiculous to expect ordinary people to pay these kinds of copays on top of the insurance premiums that they have to pay. I hope you have insurance through where you were employed or through your husband' s employment.

Well, all the worry about getting to and from the restaurant the day after Thanksgiving was for nothing. It has been worked out.. My middle brother is going to pick up my older brother where he will be and bring him to my house. He is going to stay with me for a couple of hours - just he and I. Then my youngest brother will pick us up and take us to the restaurant and his wife's daughter is coming over to get my brother and take him back.
I assume his wife will join us for dinner at the restaurant, but she is not coming with him to my house. He told me he just wanted to spend some time with the two of us. It is nice but kind of sad. He and I did so much of our growing up before the other two were born so we remember family things that they do not.

Well, I got my third vaccine today, so I don't know how I will feel tomorrow, but I am sure it will not last long. I will try to let y'all know.

Okay Howie, here's the second hen clucking. You didn't even come back yet to let us know how sore you were or if you were a little more injured than you thought.

[agate]

Yes, Howie, and now we're left wondering if you're just depending on Sam to bring you everything. She can be so fickle. I mean, if she thinks it's party time, then it's party time, and poor Howie can just sit there and wait.

Snuggles, you've been reading all along here and no doubt know that Howie has this very remarkable cat who is capable of all kinds of activities you wouldn't expect of a cat, named Sam.

Virginia, I was hoping that among the various family members something could be worked out to get you to and from that restaurant, and it sounds as if that is happening. Sounds as if the event is shaping up nicely!

[Virginia]

I had an eventful night, but do not want to repeat it. I stayed up late watching HGTV. I enjoy the "Love It or List It" and a couple of others. I love to look at houses as everyone can probably tell. So anyway I took my medicine along with a Tylenol since I had the vaccine yesterday and it was almost 1AM. I washed my face put on my gown and house coat and then was going to brush my teeth and make sure everything was secure in the house. I love to wear the short nightgowns to sleep in. A few years ago, actually when Jeanie had a couple of falls, I decided I needed to get use to wearing some panties. I set down on the stool I use to put my makeup on and did a very stupid thing. I propped my feel on the edge of the tub and was putting on my panties when the stool slipped out from under me.

I was left on the tile floor with one leg under the other and I couldn't get it out from under it. I inched my way into the bedroom (took ages) got on the carpet, but due to my bad knees especially one that is very swollen from some exercises I use to do, I could not get up on my knees and crawl to any piece of furniture. I remembered Howie and butt crawled to the bed. It was too high, so I rested against the bottom of it a bit and inched down to a cedar chest at the bottom that is padded. I worked and worked and finally pushed myself up. All of this took between 1 1/2 hours to 2 hours. I brushed my teeth and got to bed at ten to three this morning.

I woke up very sore. I have been moving around a bit today to try to get some of the soreness out of me and I have made a couple of business calls that needed to be made. I am so thankful that I didn't have to push my emergency button last night. My panties were not all the way on and I had on a winter robe which made it much harder to move, but at least I was well covered. But I just didn't want anyone to see me in that position.

As for the vaccine, I can't tell that I had one. I am tired from the night and maybe I am more tired with the vaccine, but I don't know how to tell.

Now, I am really wondering about Howie. It took a lot out of me and there is a lot of soreness in my legs. Howie may be stronger than I am, but I wish we would hear from him.

Strange thing was that I felt like I walked better yesterday than I had in awhile. The weather was nice and the humidity was very low and I think that is why. I had made my appointment on line and I went to the Walgreens that I thought it had been made. I got out and walked in and they didn't have me listed. After carefully searching she found the Walgreens where it was. I drove to that one walked in and they didn't have me either. Paperwork had to be done while I stood and then after that I walked around for about 15 minutes like they told me to. Then I drove to Home Depot walked in that store. I did get a cart there, walked all over where they keep light bulbs and stocked up on a few that I thought I might need. I then walked over to where the appliances were and I looked at counter tops and all their appliances while I waited for a lady to become available to help me. I set while we talked, but got up a couple of times for her to show me some things. She was very good about pricing things for me. Then I went back up to the front, checked out and drove to Chic-Fil-A to get a salad. I had to leave home a few minutes before two o'clock to get my shot and I didn't get back home until shortly after seven. I ate between 7:30 and 8:00PM. So, all in all, yesterday was a good day and then the fall happened during the night.

That ruined it.

[Howie]

Thanks everyone for your concern. My ankle is hurting less each day. I can limp to the kitchen, and I'm hoping it is totally healed by Monday so I can go to the store. Sam is in my lap where she stays most of the day. I think she just wants to keep an eye on me and make sure I don't eat any of her turkey or cheese.

Everyone have a great Friday evening.

[Virginia]

Thanks Howie, for letting us know how you are doing. I hope your ankle continues to heal and at a rapid rate. You didn't mention getting sore. My hands are pretty sore this afternoon. I just took the trash out to make sure I could without any problems other than what I normally have.