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    OT July Chit Chat

    Hello out there,,

    Yes its hot,, We aren't in the extreme heat like Nuthatch is,, but its close enough,,

    Got the hay done,, now my husband is staining our wrap around deck,, we went thru 4 color choices before {he said I decided, well yeah but he had the final word on it,,lol},, its gorgeous,,

    Our garden is sorta okay, wind and rain, did a number on a few plants,,but we deal with whats out there,,

    Grandkids, I see , when they stay with their dad {divorce},,that Thain is a little miniature Josh,, cute as a bugs ear,,always hugging me,,Nora,, she is 8 now,,she is as pretty as her mama,, typical 8 year old.. attitude,,lol

    Sam is learning more commands,, she is so eager to learn,,

    that's it from our tar paper shack on a dirt road,, stay cool folks,, I think July is going to test us,,I won't pass, I am used to cheat sheets,,hahahaha!!
    " Don't outsmart your common sense"

    Peg

    #2
    July is going to test you, Peg? See what you're made of? Whether you can take it?

    Soldier on there!

    As I mentioned in another thread about cooling resources, I've been going to a class in connection with an MS fatigue study. It's two hours a week for 6 weeks.

    It's a way to exchange ideas on ways to make life with MS easier. One person talked about a battery-operated jar opener. She didn't demonstrate how it works though.

    Maybe somebody here knows about this gadget? It's probably a Hamilton Beach Open Ease:

    Only registered and activated users can see links., Click Here To Register...
    Last edited by agate; 06-30-2013, 10:14 PM.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

    Comment


      #3
      I grew up in the southwest and moved to the inland north west. Just seem to stick with the heat. Also I worked in boiler rooms and roofs where the temp easily got to 125. But since MS..................

      I am having a flare. Started Friday and is getting worse by the minute.....you know vision disturbances and in my case high blood pressure just took it and the automatic machine cant read it lol it tells me to retake it manually, well duh if I could do that I wouldn't need this machine, fatigue and you cant sleep of course. I will probably see Dr tomorrow as its time to refill meds. I know what the answer will be and I have gone over 7 months without a flare and IVSM nice while it lasted.

      I was totin' my pack along the dusty Winnemucca road,
      When along came a semi with a high an' canvas-covered load.
      "If you're goin' to Winnemucca, Mack, with me you can ride."
      And so I climbed into the cab and then I settled down inside.
      He asked me if I'd seen a road with so much dust and sand.
      And I said, "Listen, I've traveled every road in this here land!"

      The dusty road is hwy US 95 and is exactly 2.3 miles from my house. and Winnemucca is 240 miles south along some of the dustiest, driest land much of which will not even support sage brush. If you have ever been east of Palm Springs its the same except it snows here! When ever it gets hot this is the first song I think of. Even when I was a kid, who knew I would live it!

      Stay cool everyone.
      Last edited by Gary; 06-30-2013, 10:45 PM.

      Comment


        #4
        :) Hi everyone. We are having days around 100 degrees and the humidity is so high it is steamy outside. Needles to say I stay indoors as much as I can. I'm sorry we are all having heat problems.

        Gary I am sorry you are having a flare and I hope your doctor can end it quickly. We are still waiting to see photos of your house when you feel better. Peg your porch sounds nice but here I do not even go on the screened porch until cooler weather.

        Good news! Andy, my son and I sold the 1993 GMC Coachhouse RV for the blue book price which is a lot less than we were asking. David had added so many extras like flat screen TV and DVD player, a storage box with indoor outdoor carpet, folding chairs, charcoal, etc. Plus we left all the dishes, pots and pans, linens, fishing tackle and rods, etc. A nice lady with kids bought it.

        I have a cleaning lady coming this afternoon and I hope to get the refrigerator cleaned, the kitchen wiped down and the whole house vacuumed and have her get some of the things for Goodwill down from the shelves in the indoor utility room.

        My son Jim took home two boxes of items from David's computer room. His wife will check them and put the ones sellable on eBay and the rest will go to Goodwill.

        I agree with Gary that the board moves slow. Maybe we can all try to post more often.

        I just finished reading a book written by a 46 year old Mother with MS that is in my support group. Her title is It's All About Attitude. Her name is Alys Capozzi and it is a well written book chronicling her MS journey.

        Please keep me in your prayers and you are all in my prayers. Jeanie :)

        Comment


          #5
          Hello July. Hello Friends. . Gary feel better soon. ((((Hugs))))

          My DD, who also has MS, is going to race in the MS Muck Fest and has a team.
          Here is her website.. Only registered and activated users can see links., Click Here To Register...
          I hope she doesn't overdo. Her Brother will be racing with her, so he'll watch
          out for her, I hope!!!

          The summer is racing by and it can't go fast enough for me.
          I'm a winter girl now.
          Last edited by SalpalSally; 07-01-2013, 05:40 PM.
          Love, Sally


          "The best way out is always through". Robert Frost






          Comment


            #6
            :) Hi everyone. Sally I did not know that your daughter has MS too. That sucks. Speaking of that there is a good website Only registered and activated users can see links., Click Here To Register... and the young man who put it up has MS and has a PhD and I think he used to post on this board. It is a good informational site for family and friends.

            My Royal Poinciana tree covers my entire front yard. So it is shaded part of the year. Right now it is in full bloom (looks like a solid red tree) and dropping petals everywhere. When I go down to the mailbox all three of my scooter wheels collect petals and I have to scrape them off before going in the house.

            I just this morning bought a leaf blower as our old one died. My son will stop by this afternoon after work to run it.

            I hope all of you have happy and fun 4th of July. My son and his wife have birthdays on the 5th. Jeanie :)

            Comment


              #7
              Originally posted by Jeanie Z View Post
              :)
              Speaking of that there is a good website Only registered and activated users can see links., Click Here To Register... and the young man who put it up has MS and has a PhD and I think he used to post on this board. It is a good informational site for family and friends.
              Unfortunately, Jeanie, Ian Parberry's website has closed.

              Yes DD is in Remission right now and I pray she stays that way forever.
              BTW, she is on LDN also.
              Last edited by SalpalSally; 07-02-2013, 10:21 AM.
              Love, Sally


              "The best way out is always through". Robert Frost






              Comment


                #8
                Originally posted by SalpalSally View Post
                Unfortunately, Jeanie, Ian Parberry's website has closed.
                If I remember correctly, he closed that website rather abruptly and left a lot of folks scrambling to find somewhere else to go. He was the one who used to use a picture of an ostrich as his avatar, wasn't he?


                Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

                Comment


                  #9
                  :) Hi everyone. I sat here for about a half hour trying to remember Ian's name and could not. I have not been to his site for sometime but I still have his bumper sticker on the back of my scooter. I am sorry it is no longer.

                  My neighbor brought me 4 barbequed spare ribs and they were great. It is nice to have good neighbors. Also I like having all of you for friends too. I don't know how I would have made it through Mother and David passing away without the support I got here. Thank you all. Jeanie :)
                  Last edited by Jeanie Z; 07-02-2013, 03:54 PM. Reason: Typos

                  Comment


                    #10
                    Originally posted by Frog42 View Post
                    If I remember correctly, he closed that website rather abruptly and left a lot of folks scrambling to find somewhere else to go. He was the one who used to use a picture of an ostrich as his avatar, wasn't he?
                    Yep he's the one. lol!
                    Last edited by SalpalSally; 07-03-2013, 03:43 PM.
                    Love, Sally


                    "The best way out is always through". Robert Frost






                    Comment


                      #11
                      Sorry I am not here as much lately. My doc ordered Tecfidera for me on June 20. When I had heard nothing by the 28th , I called Active Source and they had no record of me as a patient...only as an MS nurse...so I emailed my doc with this information and he had his nurse in CT (I am treated in RI) send in a referral on the 27th (or so he told me). I called Active source today and they had received the referral yesterday, July 1 / Talked to the specialty pharmacy this afternoon after work and they said Blue Cross would not pay for it as it was not in the formulary. "Have you considered trying any of the other approved drugs for MS management?" Well, yes! in 35 years, I been on Interferons and Steroids and even resorted to more than 2 years of high dose , high frequency Cytoxan when all the others failed, so, you see, this is one of my few options left. "Have you considered Novantrone or Gilenia?" Of course I have but I have a congenital heart condition that negates me using either. "What about Tysabri?" Yes, I would have loved to have been able to take that but I am JCV positive so am not the best candidate for it.

                      So... I got on the phone with a very positive and lovely lady named Tonya who told me that I would be able to get the med in a week or so overriding the insurance until 12/31/13. What then???? It should be in the formulary by then and if it is not, we will petition your doc to make a good case as to why you , personally , need this drug above all others............. So ..I wait to hear what the powers that be have decided. It is a long Holiday weekend and they tell me it may be next Wednesday or Thursday before I have an answer and another week or so before I get med (a full month after prescription) I will keep you posted on the progress.

                      Since my relapse the first of March that did not really resolve till the end of May and I still have daily vertigo and visual problems and cognitive yuck, things seem to be going downhill. It does not matter either to Blue Cross or to Boigen that there is an increase in symptoms. They will take their time and maybe see that I get medication and maybe not.


                      You all know me by now. Will I sit still and wait for this to play out, our will I work on behalf of all of us to make a new medication available to all?
                      Last edited by Cherie; 07-03-2013, 11:32 AM.

                      Comment


                        #12
                        Someone found this.... Only registered and activated users can see links., Click Here To Register...



                        Only registered and activated users can see links., Click Here To Register...
                        Last edited by SalpalSally; 07-04-2013, 08:04 AM.
                        Love, Sally


                        "The best way out is always through". Robert Frost






                        Comment


                          #13
                          All US people, have a glorious Fourth of July!

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

                          Comment


                            #14
                            ~~~~Happy Independence Day U S A

                            ~~~~~~~~FireworksAnimated.jpg
                            Last edited by SalpalSally; 07-04-2013, 05:17 PM.
                            Love, Sally


                            "The best way out is always through". Robert Frost






                            Comment


                              #15
                              Happy 4th!

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


                              Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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