JANUARY 2022 Chitchat

[Snuggles]

From now on I will read the Keep Moving thread!

[Earth Mother 2 Angels]

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

Howie ~

I won! Yay! What did I win? A bucket of snow? A windshield scraper? I drove a '62 Chevy II with a broken heater through a blizzard. Ah, the good old days, eh? I'm glad that you didn't take a chance. Were you able to go out today? Looked like more snow was happening in your area. Better safe than sorry is a good adage.

SuzE-Q ~

Setting intentions for the year is a wise way to view resolutions. I found it difficult to say "Happy" New Year this year, because I don't know anyone, who is actually happy right now. Health issues, loved ones passing, COVID in their circle, et al. So my dear friend and I decided to wish people a Healthy Hopeful New Year. These are my intentions for me and everyone I know. If we have hope, and we remain healthy, happiness will follow.

Please share your re-creations of restaurant meals! Pretty soon you'll be Chef SuzE-Q!

I made my Christmas meal on New Year's day, a field roast celebration roast with fresh veggies and veggie gravy. That's the first meal I've made in weeks. I received a gift certificate to try Daily Harvest, which is a farm to frozen veggie/vegan delivery service. The link is too long to post here, but their offerings do look tasty.

Snuggles ~

What a blessing that no one in your family got COVID. May it continue to be so. The taking down, packaging and putting away Christmas decorations are the reasons why I don't decorate anymore.

John is a true blessing to me in every way. I would be lost without him. He has been so wonderful to our family, helping me with Jonathan and Jim. I don't have to ask for help, because he volunteers. We agree that we have a Mom and Son relationship, and we are grateful to have each other. His mother was one of my dearest friends for 20 years. I think she is smiling upon us and pleased that we have each other to get through these trying times.

Virginia ~

Before you were discharged from rehab, I posted to you that coming home is wonderful but exhausting. You do have some extra stuff added to your necessary medical needs, such as the painting and having your hair done, so that just piles on to the stress. Both of those things are behind you now, so the future should have lessening activity as you recover fully.

How I "stood all of this" is a mixture of factors.

I love my children and husband and would do anything for them, which is the foundation of how I managed their care. I wasn't the one, who was ill, so it wasn't as difficult for me. I was much younger and had more stamina. I was Michael's and Jon's paid caregiver, so this was my actual job to juggle appointments and ensure that they had their medications, etc.

Keeping the house clean and tidy, when every room looks like a medical clinic, kept me on my toes. I worried that people coming in might judge my housekeeping. I would make sure that we were all clean and well dressed, and I smiled when they arrived like I'd been eating bon bons all day, and Martha Stewart had just left before their arrival.

Having spent a significant portion of our lives in hospitals, I was thankful that we were home and that medical professionals were visiting us. That meant we didn't have to transport via ambulance for doctor visits, blood tests, G tube change, PT, OT, wound care, etc. We also had a wonderful home health agency, and our nurses and aides were awesome. They became part of our family, even the podiatrist gals, who treated Jon at home.

Home care is far superior than rehab care. I am so happy that you have these professionals coming to your home. I know it is stressful, but isn't it wonderful to sleep in your own bed in our own home as opposed to a hospital bed in a facility? You will heal more quickly at home. And as you do, the number of visits will be reduced. So, you have that progress as your goal.

You might be surprised how much a housekeeper can do for you twice a week. You are still recovering from a serious illness, so you need to save your energy. The more you overextend, the greater the risk of stepping backwards. Take your time. If you don't have enough work for 8 hours a week, then tell the agency you only need a visit once a week. You are in charge. They are working for you.

I'm glad that you can get a month's worth of Rebif, but what happens after that? This is just not right to have to fight to get the medications you need. What you are going through is what President Biden wants to change. No one should be denied vital medication for any condition.

Now is probably a good time to use Instacart to get some food in your refrigerator. Also, your painters were negligent in turning off your refrigerator. I think you should be compensated by the painting company for the expense of your loss of food. Perhaps Eric could pursue that for you.

agate ~

Having experienced a broken rib many years ago, I know how painful it is. You know that it is best to rest the arm on that side as much as possible. I couldn't do that, because I had a family, who needed me. I did the best that I could, but it took 8 months to heal. So, please be super careful, especially now after having your booster.

Prayers and healing, positive energy for all ~

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[agate]

Yes, Howie, I understand you're probably not near the newsworthy traffic tieup that stranded drivers for 18 (or more?) hours but I've heard a lot about your own VDOT--pronounced vee-dot. We hear a lot about ODOT here (pronounced oh-dot). Guess we all have to follow the DOTs these days if we're planning to go anywhere at all because the weather can be so very unpredictable.

Rose, you may have won a snow sculpture of Howie's cat Sam. I'm just guessing that Sam wouldn't have made a snowman but would definitely have made a snow model of herself.

Rose, I'm no stranger to rib injuries either, and sparing my left arm is the name of the game just now. Years ago I fell and had rib injuries in 3 places. When I was well enough to get myself on the public transit system to a hospital, many weeks later, the hospital happened to be Mass General, one of the finest in the world, I'm told, and what the doctor there said was, "So what if you have broken ribs? Nothing we can do about it. We used to wire them but we don't do that any more. Ribs take a long time to heal. Let the pain be your guide."

This time, since it seems to be only one place in the rib cage, it's a lot easier. I was even able to breathe tolerably well today when I had to wear the N95 mask for a few hours. I was only a bit winded.

If I use that left arm for even just a few minutes, the pain tells me to stop and rest. So anything that gets done around here is getting done at a snail's pace but that is all right. I don't have any deadlines to meet.

There will be an inspection at 9 AM on the 24th but that's a long way off. My oven won't need much attention because it's no longer used for anything that spatters grease around. The blinds are dusty but I'm thinking of ways of cleaning them in a slapdash way, like vacuuming them on both sides. Even that sounds like an impossible task just now but I have nearly 3 weeks.

News came around about yet another COVID case among the residents here (#7). This one is quarantining "offsite." COVID isn't through with us yet.

[Ikoiko]

Agate, I didn't know that you used to be a Boston Babe.

[agate]

Not really a Boston Babe. In fact, I've never even been to most places of note there though I became fairly familiar with the Boston Public Library. I lived in a Boston suburb for nearly 3 years and had a job in Boston itself.

[Virginia]

Agate. you are an interesting person. I believe you also lived in Chicago and Washington State and now Oregon. Ikoiko, Agate has been around.

Well, brother Eric is laughing at me. He says I went from nearly dying a month ago to being so feisty now. My PCP will not refill all my meds because the hospital took me off of some and put me on others. So, we are going round and round about that. I keep telling the nurse that I can't help what the hospital did and that I don't have any of the medicine that they were giving me. I told them that the hospital put me in an ambulance and sent me directly to a rehabilitation center. The Nurse says that their records show that a prescription was sent to Walgreens for me on Dec. 15th from a Doctor at the hospital. Sooooo, back to Walgreens I went. The last prescription they had for me was on November 10th and the last entry was when I got a COVID booster on Nov. 18th.
Then back to the Doctor's office to tell them and I asked why Dr. Iqbal thought the Doctors at the hospital were smarter than she was anyway. Currently, the way that stands is that the Nurse will again talk to the Doctor and call me back.

Rose, says home care is better than rehab. At the moment I am beginning to wonder. I was kind of thinking about calling the rehab and seeing if they would take me back. So much less stress. Mostly all I had to do was exercise once a day with Nathan and then I got a hug. (I am kidding of course)

Julian was a young very skinny young man. My first roommate was a registered nurse and she turned me on to Julian. I asked him to take me to the shower. He wheeled me in a wheelchair. Then he made a small towel into a turban and put over my hair. He washed my back and my feet, then turned his back to me so I could wash the rest of me. If I wanted ice water or ginger ale I just looked for Julian in the hall and told him what I wanted. I always got it. If I needed clean wash clothes or towels that is how I got them. The one thing that Julian could not fix was the terrible food. But heck I don't even have any food here. If y'all could see my freezer and refrigerator you would not believe how little food there is in it. Yes, I intend to stock up on some frozen foods through Instacart, but that will not replace everything because I can't remember all that was in there.

Brother Fred is very mad with me. I can't remember if I posted about this but yesterday I called Healthwell Foundation to see about a grant for my Rebif. I called yesterday morning and I was number 900 and something in line. I just put the phone on speaker and I have two landline handsets so I kept watching to make sure neither battery ran low. Finally late yesterday they got to me and I could hear someone saying this is Michele from Healthwell Foundation. I kept telling her who I was and I got no reply, so I was yelling Michele can you hear me. Anyway, the phone went click and Healthwell was gone.

I had also been on the internet trying to get through and kept getting knocked off. I only got off the internet while the PT and Visiting Nurse were here. The Visiting Nurse helped me keep up with where I was in line when it came on the phone. So I am sitting here trying to enter information after hours hopping it would take it. Fred called and I dropped all the cards (ins, etc) that I keep in my billfold. I was telling Fred I was going to call Instacart and he was mad because I was not going to let his wife go for me. I kept saying that I did not want her out in the stores. Finally, we both got mad. I haven't heard from him anymore. So, Rose, you say home health is so great! I have to go let an occupational therapist in who sat on my couch the last time she was here and talked about paying $200.00 to get her hair done and she was not happy with it. I sure hope she doesn't stay long.

[agate]

Words fail me, Virginia. But one thing is clear to me and I'll say just this much: The Occupational Therapist is supposed to be there for--occupational therapy. Not sitting around and chatting about what's on her mind. Please request a replacement or do whatever you can so that she wastes no more of your time and energy. She is paid to be of help to you. You need the help, and when she's not giving it but taking up your time that's a disgrace.

I'd go ahead with Instacart. You can patch things up with the brother and SIL soon, I'm sure, but in the meantime you need supplies. It looks to me as if Instacart can deliver on the same day though I haven't tried that.

[Virginia]

While OC was here brother Fred showed up bringing with him 5 single containers of vegetable soup that his wife made yesterday. He brought 1 partial container of beef stew that is not frozen in case the lady here in the neighborhood doesn't come tonight. So guess Fred and I have made up. I think Eric had a little talk with him.

[agate]

It's a ticklish situation when someone wants to be helpful but you know it wouldn't be a good idea for them to try and you don't want them to take the risk. It's so hard to turn them down without hurting their feelings. You probably know your brothers well enough to find ways of dealing with the situation though.

I'm sure Rose is right in saying that in-home care works better than the rehab places. Once you realize that you're in charge, I think you'll find ways of organizing your time--and scheduling the people who are helping you--so that things don't seem impossibly frantic.There's a lot to be said for taking one day at a time and trying to make sure each day has the time YOU need in it. If you'd benefit from rest periods, make sure they are built into each day somehow.

I've found that I don't have to settle for whatever time is offered me by people I need to see, whether it's people coming to see me or people I'm going to see (clinics, dentists, labs, etc.). If I'm offered a 9 AM appointment and am sure I'll find it difficult to be all ready by 9 AM, I speak up and say I can't make it at that time, and do they have anything later in morning?

I don't tell them this but I need to nap in the afternoon, and so I try to schedule nothing in the afternoon if it will interfere with that nap. You might want to figure out what kinds of time you need to get through a typical day at a pace you find comfortable. Maybe it's a leisurely breakfast with plenty of coffee, maybe it's a couple of nap breaks, whatever it is that you need to keep yourself on an even keel--please do try to make room for those times each day.

Of course there are exceptions to my ideas about schedules. Surgery, for instance, almost always has to be at whatever time is proposed, and other procedures like MRIs are probably not flexible enough to play around with scheduling, but visits to doctors and labs and visits from social services people and wheelchair repair people can usually be negotiated. When I had helpers, I got away with limiting the helpers' time to certain times of day as long as I allowed ample time for a worker to complete the allowable hours. I would tell the case manager that I preferred mornings but not too early.

Sometimes when no substitute could be found I had to settle for an afternoon but that happened very rarely.

[Earth Mother 2 Angels]

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

agate ~

I am glad that your breathing has improved. The Mass General doctor was right, of course. I was told the same thing, when I broke a rib. A nurse told me that they used to bind up the chest area, but they found that it was not beneficial. The concern comes when the rib is too close to puncturing the lung.

Like you, I scheduled home care visits, when it was suitable for Jonathan or Jim. Many of Jim's appointments had to be rescheduled, because we depended upon John to transport Jim, and he was only available in the afternoons. Almost always, our requests were accommodated.

You haven't mentioned how you fared after your booster. Did you have any side effects? I hope you didn't. COVID absolutely isn't done with us, as the increase in cases in the U.S. is surging.

Virginia ~

If I misled you about home health care, I apologize. For decades, experts have stated that home health care is far superior to institutional care. For us, that was accurate.

Consider these things:

You don't have a roommate. You aren't exposed to the germs of others in the facility. You are able to get up and do what you want, when you want. You sleep in your own bed. It's easier for family/friends to visit you. When you have food available, it is what you want to eat, not what is slopped on a plate and called "a meal." You don't have to ask someone to bring you what you want, if it is even available, because you can get it yourself, at any time that you are hungry or want it.

Also, home care means that you don't have to find someone to transport you to a medical center for PT, OT, or blood work. Or, you don't have to drive yourself, it you are well enough to do so. Having health care professionals come to you is easier for you in that regard, and it is also safer, because you are being exposed to germs in a medical environment. With the omicron variant thriving right now, the further away from a medical facility you can be is the safest place.

As I mentioned, now that your painting and hair styling are behind you, you will have less disturbances. If you feel that your OT isn't helping you, then you should request another OT. You have rights as a patient. You don't have to accept subpar care.

Do you have the same visiting nurse for each visit? I ask this, because we always had a case manager nurse, who would visit, and she managed all of the medications needed. She could intervene on your behalf to get a medication that you need, or put pressure on your doctor to prescribe it. You need someone, who can explain the differences in the medication changes you had in the hospital and help you to determine which meds to take.

Our hospital always informed our PCP of any medications given during hospitalization. Your doctor should have that information. She should also consult with the hospital physicians about the changes to determine the best path for you. She should take over prescribing all of your meds, because the hospital physicians have discharged you to her care. Be assertive with your doctor's office and request a telephone consult with your doctor. You need clarity on all of your meds. Otherwise, you're relying on whatever you are given without knowledge of its consequences.

I would make a list of all of the meds you've been prescribed, figure out what they are for, and then confront my doctor with that information. Just say, "I need to know what these are for, why I'm taking them, how to take them, and how long I'll be taking them." Then add, "And I need you to prescribe them."

A good resolution between you and Fred as he came bearing soup and stew. I hope your neighbor also stops by with some food. Nonetheless, it may be awhile before you will be able to drive and walk around the store, carry bags up your steps, etc. With that in mind, I recommend that you order from Instacart.

I just celebrated 4 years of not going to the grocery store, except for vaccinations (that's where the pharmacy is). Instacart spared me so much effort, energy, exhaustion, pain, and now it keeps me safe from COVID. It also gave me time to be with Jon and Jim when they needed me most.

What is the objection to using Instacart? You can communicate with your shopper on line during shopping, accept or refund replacements, ask for "fairly ripe or not too ripe" for veggies, give all kinds of instructions to your shopper through the system before you place your order. Your shopper can take photos of replacements and ask you which you prefer. My shoppers message me with things like, "all of the organic avocados are too ripe, do you want non-organic avocados as a replacement?" Or, "they are out of stock on this item, but I asked a store clerk to check in the back."

As soon as a shopper is assigned to my order, I write in the Message box: "Good morning (name)! Thank you for shopping for me!" That establishes a sense of appreciation for their service, which opens up communication.

My Instacart orders are delivered within an hour or two, depending upon the delivery time I choose. Same day delivery is available.

Whenever I find something, which helps me and is good for me, I stick with it. Home health care was good for me, and Instacart is good for me.

Instacart is right at your fingertips. You need food to last for more than a day or so. You shouldn't have to hope that someone brings you food, like Fred or your neighbor. You should have your own supply on hand.

I still think that you should be compensated for the loss of food by the negligence of the painting crew unplugging your refrigerator. That was inexcusable. You deserve to be reimbursed for what you lost. If they hadn't done that, you'd have food in your freezer now. Maybe Eric could address this issue on your behalf?

Sending prayers and healing, positive energy to all ~ Be well, stay safe and strong!

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[agate]

Just a footnote to Rose's comments about Instacart: If you don't want to use your phone to send texts back and forth with Instacart, you can do the same thing on a desktop computer. There is a little chat window that opens up on the screen, and the shopper and I can have little discussions when there is a question about an item. And for every item I order, I check the "Preferences" section and choose a possible substitute. That cuts down on the need for the shopper to contact me but I do try to stay right by the computer screen on an Instacart shopping day so I can catch any messages from the shopper.

I don't know if what I'm seeing on the screen is the same as would show up in a text message window on the phone but I suspect it is.

[Virginia]

Agate, you're much better at this than I am. However, I could have handled all this better had I not had to be dealing with funding for Rebif. That is extremely stressful every year and I have to spend a lot of time on it. It just hit at a time this year when other things were totally overwhelming me.

I was kidding about going back to rehab. My house is. not a mansion, but it is a lot nicer than that half a. room I had, but I did come away feeling that I had made some friends while there.

Tomorrow I have the lady coming who is supposed to work for me twice a week. I don't know what Eric was thinking. He wanted someone who could take me to appointments. Well getting here at 10AM means I will have to book my appointments between 10:30 and 1:30 in order to get back home so she can leave. All my appointments are afternoon appointments, so it means changing my entire schedule.

Just got word from Eric that Mary, the lady I was talking about has COVID. That means only PT. I will have to change my bed and do a few things, but takes a little of the stress off me of having so many people in..

Rose, I understand what you are saying, but I just prefer going to my Doctor than having six different people come here. I made it clear to the Nurse yesterday that I didn't need an. OT. I didn't say anything bad about the young lady who is coming, just that I felt I had just had OT in the rehab and they had some gadgets that they turned me on to, but beyond that OT didn't seem to offer me much. However, I have made it clear that I would like to keep PT. That is not going to happen because PT told me Monday that she would run out oUf things for me to do. She said I already knew every leg exercise she had taught me. I expect most people with MS do know them.

The only time I have seen the Nurse is yesterday. I like her, but she knew there was a mix up about my meds between the hospital and the Doctor. I discussed it with her, but she made no mention of being able to come into it and help me. I would like to see her again, but she made no future appointments and didn't say if she would be back or not. Maybe they think I don't need much.

I have ordered from Instacart and it is fine for frozen foods, Canned things, bread and things like that. I like to get fruit and other things. Also, Harris Teeter, the store I like the best doesn't have any kind of delivery or shopping service. But they usually have the best fruits and vegetables.

While I have been typing this Eric and I are going back and forth on the cell phone. We have been texting. At his suggestion I bought a clean air purifier. I got the kind he suggested and it was broken. He has 3 or 4 of them and had never had a problem. His daughter has 2 or 3 and she had never had a problem. He sent mIne back for me and brought one of his over. Then he brought another one over. So I told him I have two and have only paid for one. They are pretty expensive and I want to pay him for the 2nd one, but he will not take it. Finally, I told him I have two, have paid for one and therefore owe him for the 2nd one. He wrote back "Don't You get feisty with me". He was teasing me

[agate]

That Rebif situation just shouldn't be happening. MS is a stressful disease anyway, and just why people with MS should have this added stress, all about the very costly drugs we're more or less expected to take, is something I fail to understand but my guess is that it's all about money.

Have you tried this organization?

Only registered and activated users can see links., Click Here To Register...

I don't know anything about it but dug it up in the Useful Websites sticky thread. Some time ago JTwin (Joy) posted about it.

[Virginia]

Agate. thanks for the information about PAN. They have helped me once or twice. I did put in an application with them and I am on a "Wait List" I think.

PT came and I went for a walk. Always good to get fresh air. I had only my cane and I kind of went sideways a couple of times. It scared her each time and she reached out to grab me, but I assured her I was alright. I like her. OT is only coming one more time, but then the head OT will come back again. I've kind of got all this figured out now. They send in what I call the Reconnaissance Person, then she sends the ones to do the work, then she comes back to access what they have done. Which if a person doesn't know this, it becomes very confusing because it means there are extra people coming in. When Jen from OT came she told me who she was and asked some questions and then told me I would be working with April. April's last day is Monday and Jen will come back Tuesday to assess what April has done. Each category is like that. Deianna, the PT told me today that she thought the Nurse would come back next week. I told her she didn't make an appointment and she said that she would call me before she came. So now that some of them are leaving I have it all figured out.

[Virginia]

YEAH I think! I just went into Healthwell on line. It shows that I have an active grant of $8000.00. Not enough for the whole year, but enough to get me to a point that I can handle things. I am not sure but I think I have to wait for some kind of letter confirming this before I can order any medication. I will try to find this out.