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    Still here.
    Suffering.
    Still and always a member of BT.
    Will post as can.
    Referred a local MS patient to this board.

    Comment


      Thanks for referring someone, Sunshine!

      So sorry you're struggling though. Hang in there!
      SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

      Comment


        So sorry that you are suffering, Sunshine.

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

        Comment


          So sorry you are having a hard time. Miss you so much. I think of you so often.
          Virginia

          Comment


            :) Thanks for posting your photo. He is so cute. You look great too.

            Sunshine feel better. Jeanie :)
            Last edited by Jeanie Z; 02-24-2020, 12:03 PM.

            Comment


              It took me several weeks to realize that I was getting high anxiety and suicidal thoughts but no intention, (the thoughts horrified me) from a new GI med. It is a black box warning.IT worked well, and it took a couple of days to creep up on me.

              It took being off of it 6 days to see it recede. And several more days to be gone.
              So, I was in a black hole of discomfort and fear. It has been two weeks now, and I am open to the idea, it may continue to recede for another few weeks.

              Leaving me with less options to treat the symptom the med was used for.

              Within the past few days two of my long standing docs sent out letters of resigning. I think I found a new one for one of them, but it requires going to the doc to be seen— exhausting. Oh well.

              I have a good way of locating a sub for my long standing PCP. First I will find out if he is leaving but still available elsewhere. If not, I have two other good options.

              Who knows, maybe fresh eyes are a good thing....

              I have had my docs for so long, they aged along with me. Likely you have had this too.

              I did start In home counseling to reduce sadness and anxiety. It has been very helpful in just 2 sessions already.

              And, I am going to try to have someone come over for a brief visit at least once a week.Being so isolating maybe contributes to sadness.

              I am trying.

              And, I am keep on swimming on days of no morning appts.

              Still hoping to surf again. I am not done surfing...

              IVIG all day Wed. This week. Today was a doc appointment.
              Last edited by Sunshine; 02-24-2020, 12:24 PM.

              Comment


                Thank you for this, Sunshine. I understand that it may have taken extra effort/energy that you barely have. I’m glad you are coming out of the “dark place.”

                Good luck on IVIG day.
                ANN
                There comes a time when silence is betrayal.- MLK

                Comment


                  Sunshine, good for you for recognizing and getting help for these issues. It takes a lot of strength and energy when you are already feeling bad.

                  Hope you get good new Doctors.
                  Virginia

                  Comment


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

                    agate ~

                    What a wonderful picture of you and William! I'm so happy for you that you had this great experience. Such beautiful memories were made on your expedition. I wish your DIL great success with her new bakery. It's brave to leave a secure job, when you want to try something else.

                    Sunshine ~

                    What an ordeal you have been through and continue to endure. I'm praying that the side effects will abate quickly, and nothing lingers, and that you find new doctors, who are caring, compassionate, thorough, think outside the box, and genuinely want to help you. May IVIg go smoothly and help you return to your baseline. There are more waves out there with your name on them, waiting for your return.

                    Blessings to All ~

                    Love & Light,



                    Rose
                    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


                      Originally posted by Sunshine View Post
                      It took me several weeks to realize that I was getting high anxiety and suicidal thoughts but no intention, (the thoughts horrified me) from a new GI med. It is a black box warning.IT worked well, and it took a couple of days to creep up on me.

                      It took being off of it 6 days to see it recede. And several more days to be gone.
                      So, I was in a black hole of discomfort and fear. It has been two weeks now, and I am open to the idea, it may continue to recede for another few weeks.

                      Leaving me with less options to treat the symptom the med was used for.

                      Within the past few days two of my long standing docs sent out letters of resigning. I think I found a new one for one of them, but it requires going to the doc to be seen— exhausting. Oh well.

                      I have a good way of locating a sub for my long standing PCP. First I will find out if he is leaving but still available elsewhere. If not, I have two other good options.

                      Who knows, maybe fresh eyes are a good thing....

                      I have had my docs for so long, they aged along with me. Likely you have had this too.

                      I did start In home counseling to reduce sadness and anxiety. It has been very helpful in just 2 sessions already.

                      And, I am going to try to have someone come over for a brief visit at least once a week.Being so isolating maybe contributes to sadness.

                      I am trying.

                      And, I am keep on swimming on days of no morning appts.

                      Still hoping to surf again. I am not done surfing...

                      IVIG all day Wed. This week. Today was a doc appointment.
                      So glad you shared with us and hope the load lifts from you soon. I went to a play yesterday and barely half way through I started developing spasms. I tried to figure out how I could leave the theatre but was in the second row at a very intimate small theatre. I never experienced such panic...saw no escape...then suddenly there was intermission. My friend who took me had seen I was in trouble and she just took over. We left the play. As soon as I got out I felt better. Started drinking water. Maybe I was dehydrated ...legs shaking...very dramatic event. Hard to climb out of dark places sometimes.

                      Sending you hugs and wishes....
                      Linda~~~~

                      Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

                      Comment


                        Agate, I have had a bad day today so I have not been on my computer. I was reading on my iPhone and everyone was mentioning this great picture. I finally just had to see it so I came on my computer. Well, they are right it really is a good picture of both of you. That boy is half grown! I still was expecting a small little toddler, but he is a big boy now. You look great also.

                        I don't know why my iPhone was not picking up the picture, but it is not. So glad I came to have a look.
                        Virginia

                        Comment


                          Virginia, I see the picture on my phone.

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

                          Comment


                            Ann, that whole post was missing from mine. I went back and tried to bring it up again but could not.
                            Virginia

                            Comment


                              Originally posted by Virginia View Post
                              Ann, that whole post was missing from mine. I went back and tried to bring it up again but could not.
                              That's odd. When I was posting the photo, a message of some kind popped up on the screen, and it may have been an error message, but it went by me so fast that I couldn't read it. The photo seemed to post OK at my end. I'm sorry that you didn't see the post at all.

                              It might have something to do with the kind of photo it was. It was taken on my DIL's mother's phone camera, and she e-mailed the pic to me. I moved it to my files as I would any photo I want to save, and then I copied it here.

                              I may be able to fix it but it may be a few days before I can do that.
                              SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) since December 2020.

                              Comment


                                Ann, I went back again and found where it says “images attached”. When I try to open it I can’t. If you know what to tell me to do please do, for future reference.

                                I have the picture on my computer, but don’t know why it will not open on iPhone.
                                Virginia

                                Comment

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