Announcement

Collapse
No announcement yet.

August 2020 Chat & Musings

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Today I swam 1/2 mile.
    I am so glad to hear about Jeanie. I wish some health aide, or OT or PT can go examine her living situation and possibly make recommendations to prevent this from happening again. If it’s at all preventable.

    It makes me nervous that family member not allowed to visit due to COVID. Hopefully she would be able to let Andy know if she is getting sub par care. Is this the same place they let her sit in her feces? Hoping not.

    Comment


      Sunshine, I don't know if this is the same place but certainly hope it isn't. I think that not allowing any visitors must be a fairly standard practice now at nursing homes and rehab centers because of the coronavirus but it does mean that the person who is staying there is being held pretty much incommunicado unless there is phone access, and sometimes that's not so easy either.

      We can only hope that she's getting attentive and competent care.

      My nextdoor neighbor friend went to visit the neighbor who died recently when she was in a rehab place. She was able to "visit" her by standing outside the window and looking in and waving. It sounded frustrating and dreary.
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

      Comment


        Hi Agate!
        "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

        Albert Einstein

        Comment


          Hiya, Howie!
          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

          Comment


            We are safely home. While we were away, we got a $20 off $50 coupon for that pandemic/vacation grocery store we stopped at on the way to Cape Cod so we stopped at it on the way home, too. And my less sugar Chobani peach yogurt was on sale for $1 both times. Color me happy.

            Our cats did not bother with the cold shoulder routine this time.
            ANN
            There comes a time when silence is betrayal.- MLK

            Comment


              I'm going through a personal problem, that I can't do a thing about. I have run out of Gabapentin which I take for seizures. Because it is a controlled substance, every refill requires my NP call it in.

              But she hasn't. I've called her office, I've called CVS, but no one can do anything without her OK. So her office is closed now, CVS hasn't called to say it's ready, and I just wait for the seizures to begin.

              I feel so helpless.

              On the prescription bottle, it says I have 2 more refills. The last one was refilled on 7/28, a 30 day supply, so that's not the problem. It's just her that's the problem. This is not right.

              And I know none of you can do anything about it, I just needed to vent and get it out of my head.
              "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

              Albert Einstein

              Comment


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

                Howie ~

                Here's a list of frozen meals ranked according to preference of people, who voted on the site:

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

                Smart Ones is ranked #11.

                I have no idea what the price range for these brands is. But, if there are ones in the same price range as Smart Ones in the 1 to 10 rankings, perhaps you could try one of those in the future.

                The heat and humidity certainly can be a deterrent to the desire to cook in a hot kitchen. Perhaps you could get an assortment of frozen veggies, which you could microwave. They generally don't have salt or other additives, which most frozen meals do have.

                agate ~

                Sardines are so odd to me that I have never eaten one! I didn't really have to give up fish, since I've never been fond of fish, with the exception of tuna salad sandwiches. Now, I have a substitute called No Tuna Salad, which is made with chick peas. It's quite tasty, but it takes a bit of time to prepare it.

                Virginia ~

                Sounds like you're getting in a lot of reading. I'm glad you have a Sunday service to lift your spirits.

                Sunshine ~

                I hope that you are feeling better today. Having an OT and a PT consult at home is an excellent idea, and it is one that should be recommended upon Jeanie's discharge.

                Since the onset of COVID, I have read and watched many news stories about health care providers, who are devastated that patients die without family around them, or patients, who could use the love and support of loved ones while recovering, are alone. I've seen interviews with nurses nurses weeping as they recall holding a phone up to their patients ear, so that their loved ones could say goodbye. It's just another heartbreaking aspect of this horrific virus.

                ANN ~

                So happy to hear that you are safely home, that you got a good bargain on your Chobani, and the cats still love you.

                Be well, safe, and content, everyone ~

                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


                  Oh, Howie, I can’t believe this is happening again! Just telling Peter. I really wish I could help.

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

                  Comment


                    Howie, I fail to understand why your doctor doesn't have an "after-hours" number where people can reach her when the office isn't open. There may be one if you listen to the entire recorded message you're probably hearing when you call--?? You have a legitimate need for your doctor's cooperation. I hope you aren't hesitating just because you don't want to bother her. She's the only one who can make it possible for you to get this needed med, or at least that's how it looks to me.

                    Chobani yogurt has been mentioned--I have some of it every day, either the plain nonfat Greek yogurt or the vanilla Greek yogurt. Lately I've been mixing in blueberries that a neighbor friend has very kindly brought me. She goes to pick them in the town of Boring.

                    Yes, this state has a town called Boring.

                    Two people so far have asked for Jeanie's address. I have the notion that if you're stuck in a rehab place or nursing home, you're less in danger of falling through the cracks if the staff has to handle pieces of mail for you (or calls) often. It reminds them you exist. It lets them know that you are important to people in the outside world.
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                    Comment


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

                      Howie ~

                      I completely understand how frustrated you are, because I've been there thousands of times with Jonathan, Michael, and Jim.

                      The only way that you can stop this cycle is to not depend upon CVS or your doctor to automatically refill your prescription. At least 10 days before you need a refill, you have to call your doctor and CVS to make sure that the refill is available for you to pick up within 5 days. Also, since this is a seizure medication for you, CVS should be willing to give you a supply of Gabapentin to tide you over, until this gets resolved.

                      Please call CVS and ask them to give you a supply to tide you over. I've done this so many times, Howie, especially for my boys' seizure meds, and the pharmacy has always complied out of compassion.

                      But YOU have to ask for it. You have to call your doc and pharmacy to coordinate your refills, and you have to do it, before you run too low on pills.

                      Please, Howie, be proactive in getting these refills. It's a couple of calls, and aggravation, but all of that beats having seizures or withdrawal.

                      Call your pharmacy tonight and ask for a tide over refill. Call your doctor and the pharmacy tomorrow to make sure that they are on the ball.

                      If you leave it up to them, it's always going to be like this.

                      Clucking from a vast amount of experience and love ~

                      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


                        Howie, I don't understand this. They refill mine every month and notify me that it is ready for pickup, which I did today. I could really help you out if I lived close enough to you. I have too many. They have built up over a period of time. They refill mine without calling my Doctor until the prescription has run out, which I think is once a year. Mine are a lesser strength than yours, but if I had a way to get 100 of them to you, you could take 3 instead of 1 when this happens. I know it has got to be very frustrating and also you are on a strength that you should not just go without. If you were intending to come off them, which you are not, they would need to wean you off.

                        Start making phone calls first thing in the morning.

                        Howie, I didn't know you were so cute, but I could see it in that picture you sent Agate.

                        Ann, glad you are safe at home. I think you are the only person on here who has had a vacation this summer, unless it is Suze-Q or Rene, and we don't know about them. But no one has mentioned going on vacation.
                        Virginia

                        Comment


                          Um, what picture did Howie send Agate? I don't remember any but I'm sure it's just my weird memory. Or lack of it.
                          SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                          Comment


                            That makes two of us. I don't remember any picture. Virginia explain, what picture?
                            "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

                            Albert Einstein

                            Comment


                              I do have a dim memory of digging up a photo of Howie from the forum archives because there was one he used for a while as his avatar, or else he posted it somewhere. I believe it was Howie's head along with a cat?
                              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                              Comment


                                Okay, I remember now. It was a site I made called Howie's World. I think I was holding Seven when I first got her. I sure would like to see that if it still exists.

                                Virginia???
                                Last edited by Howie; 09-01-2020, 08:06 AM.
                                "Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."

                                Albert Einstein

                                Comment

                                Working...
                                X