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    Virginia, Sam made it back in, but it was a nice day, so she took her sweet time. Don't worry about Sam, she can still really move when she has to. Since she came in, she has pretty much been planted on my lap, but letting me get up to fix something to eat since she always gets my leftovers.
    "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

    Albert Einstein

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      Ann, I was in my kitchen today and I was thinking of Jeanie and wondering if she is in the same place. I think that is two great minds working the same channel.

      I miss Jeanie and wish Jim would e-mail Agate again with some updated information. She is always in my prayers each night. I know that is what she would want the most.

      Howie, I worry that Sam will get too distracted and something might happen to her. If you are out there watching her it is one thing, but for you to leave her out there I don't like.

      Rose, I know how you feel about the van, but the car will be better for you. I hope things begin to clear up there so you can take your walk each morning. I know this important to you.

      Agate hasn't said how things are for her, but the last I heard they had gotten rain. I really hope it helped.
      Virginia

      Comment


        The rain did help though 11 fires in the state are still "active," and what I don't like about that situation is that many of them are only 10% under control--and the forecast doesn't call for much rain at all. But the air is delightfully clearer at last.

        I'm resting my right hand all day because it's acting up. I probably overdid on the crocheting last night. Years ago I broke my right wrist when I fell and it's never been the same. It gets out of whack sometimes, swollen and painful and misshapen, but with rest and aspirin it will undoubtedly calm down.

        So I'll say more soon.
        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

        Comment


          My DD was in that earthquake. Its unnerving as you don’t know if it will stop and what will come next. As a mom, it’s one more thing to worry: Covid, Smoke, Earthquakes.

          Tomorrow is IVIG. I have been inspired by agate and have reached over a thousand steps a day., my best was short of 1300. Tomorrow I don’t walk hardly at all at IVIG, it triggers spasms, or has in the past. So I use a wheelchair to use the bathroom. Every hour I try to stand at least 30” to prevent DVT from the IVIG.

          I hope its uneventful.

          Last night I missed my midnight doses, and discovered it at 3:45am and quickly took them. It leaves me funky in teh morning. It happens now and then: first time in a long time. My own fault. The alarm did do what it was told to do.

          I am still trying to see a pulmonologist. The intake system at Cleveland clinic is broken (new software) and they cannot receive the referrals. So, my doc mailed it a few days, that can take a week until its read. This began on Sept 8th. I got told to try the “Ombudsman” and I asked her to call the doc’s office and ask if he referred me. She said she would try that. If that doesn’t work, I will impose on the asthma doc to call theOmbudsman.

          These big hospitals are overwhelmed with COVID, short staffed, and now a problem with software...do they administrators care? I know the staff cares.

          Comment


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

            ANN ~

            Somewhere I have a photo of the van after she had her last paint job many years ago. I can't seem to find it now. Neither my phone or my camera (actual camera) are taking photos for me now. Maybe John can take photos of it and the car with his phone.

            John's car isn't new. It has over 200,000 miles on it, I think, because he used it for work. I don't know what year it is. He bought a newer car for his work and gave this car to his daughter. As a combination birthday, Christmas and graduation gift, he and his wife bought her a newer car. Because I need a car without bells and whistles, John decided to offer it to me.

            Today, I scoured the DMV website for information on transferring the title to our cars. The van will require a smog check, which is due this year anyway, before I can donate it. Jim's name is on the title, so I have to show his death certificate and get a form notarized.

            I knew that there would be hoops for me to jump through, flaming hoops. Nothing is ever easy, even during a pandemic, when it should be at least easier to do these things.

            John had an appointment this afternoon, so he'll be here tomorrow, and we'll wade through all of the red tape together.

            The fire continues to blaze and feed on the dry chaparral and threatening homes. Containment isn't expected until mid-October. By then, who knows how much will be lost? Or how many other fires will have flared up?

            Thank you for your positive thoughts and energy. It's about all any of us can do about anything these days. "Chin up!" as Jim used to say.

            Howie ~

            I'm glad that Sam returned, but of course she would. A) She loves you. B) You feed her. I hope that she is wise and agile out in the "wild." I have watched so many movies, animated and CGI, where critters speak, I think she's going out to meet with her pals to talk about world domination. And, I'm fairly sure that she and her pals could do a better job than our current head cats. That, or she finds some cozy shady place to just be on her own.

            Virginia ~

            The air quality this morning was "Fair," but by the time I saw the forecast, I had already started my morning. I like to go out first to warm up, but once I'm up and doing things, I don't feel like getting in my "walking clothes." If the quality is fair tomorrow, I will venture out. I have to wait for sunrise, and that seems to take forever some mornings.

            agate ~

            I'm pretty sure most everyone here and you know what I'm going to say ... Douse a paper towel or cloth in Witch Hazel and wrap it around your wrist. It reduces inflammation and provides relief. I've recommended this to everyone here at least once, and those, who tried it, reported good results.

            Thankfully, your skies are clearer, but I've found that that can be misleading. So, I check on the internet every morning for the local weather, which also gives air quality. That's how I know not to go outside.

            Rest your wrist. Elevate it as much as you can, and get back to us, when you feel up to it.

            Sunshine ~

            Since your DD felt the quake, then she is also affected by the fires. And, as Mom to Mom, I know how worried you are. Plus, I live here, and I know how unpredictable quakes and fires are.

            I also know that our fire departments are stretched to the limit and then some right now. So, the last thing we need is another big quake. We just don't have the person-power to manage that overload of disaster.

            I am so sorry that you are having issues with your referral. With COVID, it must be so difficult for medical facilities of all kinds to keep functioning. Think about how much overtime everyone is working to keep up with the crisis. And the risks they are taking being exposed to COVID repeatedly.

            Administrators care about profit and loss, or funding, if they are nonprofit.

            Sending prayers that IVIG goes well for you tomorrow.

            Jeanie ~

            We miss you. We're thinking of and praying for you.

            Sending healing prayers and love to all ~

            Love & Light,



            Rose

            *Virtual Hugs Are Germ-Free!
            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment


              Good morning, Brain Talk.

              It’s going to be in the 70’s here for the next seven days! I hope your day and week are also good.

              I am avoiding the news. If something good happens, wake me up.

              Sunshine, best wishes for a snag-free treatment today.

              Jeanie, we are missing you.

              ANN
              There comes a time when silence is betrayal.- MLK

              Comment


                I just found the "quick reply"........duh!
                "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

                Albert Einstein

                Comment


                  Yesterday was Peg's birthday--I'm sure we all still miss her. I know I miss hearing about the "tarpaper shack" and her many activities.

                  I have some messages from Tom Cat to transfer over here and I'll do that as soon as this wrist calms down a bit more.

                  It's much better already thanks to resting it and doing things left-handed. I think it's a sprain as well as the old break acting up with arthritis. Sometimes the old break does this--and the wrist goes out of shape but this time there's swelling across the entire hand as well. The wrist might have been in an odd position in my sleep and somehow was sprained a couple of nights ago. Or maybe I was just lying on it.

                  These things take time but I'm getting there.
                  SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                  Comment


                    NEWS FROM JEANIE!

                    I got tired of not hearing from Jeanie, so I looked the place up where she is and called her. I lucked out and got a nice lady who put me through to her, then I lucked out again because an aid was standing by Jeanie's bed and told her the phone was ringing. It is on the highest setting, but she can't hear that tone. We talked for at least 1/2 hour.

                    She has two screws in her leg and they have come loose, so she is going October 1st for them to take them out. It is outpatient and she will go right back where she is. She is in a double room and she is next to a window so Jim and Andy have brought Lacy to see her. They can't go in, but she talks to them through the glass using cell phones.

                    This place is better than the last place she was in. None of them are good and she gets upset at times, but they do a better job than the other place did. She has a catheter and is in a diaper. She says it is hard to go to the bathroom in a diaper. Then they have to clean her up. Sometimes when she calls they come right away, but there are other times when it takes awhile. I guess they get busy sometime, but it is not like the other place. They did leave her sitting in a chair for 3 hours yesterday and she was not happy about that. That was either when she was leaving physical therapy or going to physical therapy.

                    She still has shingles and she is allowed to have percocet for that. I think she said about every 6 hours, but it doesn't last 6 hours, so she starts hurting and has to wait until it is time for more medicine. She does get some relief for about two hours or so.

                    Her roommate has some dementia and occasionally cries out during the night, but it did not sound like very often. Jeanie says she turns the light on for her when it does happen. She has not asked to be moved because other than that the lady stays in bed and is fine. Jeanie said she could get worse.

                    She was asking about everyone, Agate, Rose, Ann and everyone. She was glad I called so I could report on her to everyone. She has worried because we are not getting any news. Jim took her computer home and has torn it apart. I don't know if he will be able to put it back together or not, but right now that is the way it stands.

                    She doesn't know anything about when she will get out. No one has said anything about it and no one has told her how her leg is, though she says they x-ray it quite often. She doesn't get any reports. She said they also do EKGs and such stuff as that, but have not given her any of the reports.

                    I have given y'all the gist of the conversation I think. She sounded good and it was good to talk to her. She sends love and I told her we loved her and were praying for her.

                    By the way, she thinks it will be better for Rose to have a smaller car than the van. Agate, I told her you were have a little wrist problem but you are hoping it will be better in a few days. I told her you are taking care of it. I told her how much Sunshine has been able to walk lately.
                    Virginia

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                      Virginia, thank you so very much! I’m very glad you had a phone visit with Jeanie. It’s good that they know that she has people who care but especially good for her.

                      Did she say anything about physical therapy?

                      It would be so therapeutic for her to have a laptop or a tablet. She could read, communicate, have music and books and news (such as it is).

                      She has a right to know the results of her tests and the therapeutic plan. There should be an ombudsman for the facility.

                      Bless you for reaching out and bless Jeanie for helping her roommate.

                      ANN
                      There comes a time when silence is betrayal.- MLK

                      Comment


                        Thank you for calling, Virginia! I'm so glad you were able to talk to her and that she's doing all right though of course she's eager to be home again.

                        I agree that a laptop or a tablet would be really nice for her to have. I hope she can at least watch some TV there. Or maybe they keep her so busy with the healing process that she never has time or energy.
                        SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                        Comment


                          P.S. Post re Jeanie:

                          I forgot to tell everyone. The food is pretty decent. I could tell she was pleased about that.

                          Ann, she is going to physical therapy every day, but I don't know how much she is doing. Since the screws in her upper leg that were holding the rod together have come loose and have to come out she might not be getting as much PT on that leg right now. She did stand yesterday for awhile on the other leg.
                          Virginia

                          Comment


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

                            Virginia ~

                            Thank you so much for calling Jeanie and sharing this update. I'm sure she was thrilled to hear from you. It must be lonely to be there, especially for so long.

                            I'm so sorry that she still has shingles and pain, and that she has to have the screws removed. I wonder if they will be replaced.

                            Aww ... it hurts my heart that she can't see Jim, Andy and Lacy, except through a window. But in COVID times, that is definitely better than not seeing them at all.

                            Jeanie was a nurse, so she has that nursing instinct to help her roommate.

                            From what I remember about her previous rehab, this place sounds a hundred times better. Of course, none of them are going to be like the Ritz. The one Jim went to last year was "highly rated," and it took us an hour to realize that Jim was not going to stay there. I'm sure he would have died from neglect within days. Or an infection, as they didn't wash their hands or wear gloves.

                            On her rehab's website, it states that iPads and computers are available. So, Jeanie needs to ask them to bring her one or the other, so that she can reconnect. If only to play her favorite on line games or to connect with us, I think it would do a world of good for her well being and recovery.

                            Among the many kinds of therapies we all need is social therapy. Connecting with others, sharing, communicating, communing. During COVID the primary way in which we can do that is virtually on line. Jeanie needs an iPad or a computer. STAT!

                            Once again, Virginia, thank you for reaching out and tracking down our Jeanie. Your recollection of the conversation helped me to feel closer to her.

                            Love & Light,



                            Rose

                            *Virtual Hugs Are Germ-Free!
                            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                            Comment


                              Rose, I am not sure Jeanie would want an iPad since I don't think she has used one enough to know how to use it well. She left her rolodex at home and no one has brought it to her yet.

                              She kept mentioning her friend from Canada who goes to see her, Kim. Someone must have gotten in touch with Kim, maybe Jim the same way he did with Agate. Anyway she is very concerned about Kim not hearing from her. She says Kim gets very upset. She said Kim had not called her and I tried to gently remind her that if she could not hear her phone that Kim might have tried, but I also told her that the lady I talked to was very helpful in telling me that she was doing fine before I asked if there was a way I could talk to her. I told her that Kim might know how she is. I told Jeanie that I would call her again a few days after her next surgery. If she has Kim's telephone number I will be glad to call her for Jeanie and let her know how things are. If she calls on her cell phone I think she will have to pay for it.

                              Rose, I didn't specifically ask about the screws in her leg being replaced, but I get the impression that since it is to be a fairly short procedure and same day, they probably are not going to be.

                              I did ask her if she knew how long she could stay in that place and she said she does not. She says no one has told her and that leads me to believe that Andy and Jim have not checked into it. Since she sounds like she is pretty well satisfied I would hate for her to have to move. Most of the aids and nurses she likes. There are only a couple that are horses a...s, as she put it.
                              Virginia

                              Comment


                                Ann, I got the idea in your first post of the day that you really don't care about hearing from us. You said if there was any "good news" to wake you up. What is that? I haven't heard of it in so long I don't remember. It must have been close to four years and I can't completely remember what the definition is.
                                Virginia

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