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    Getting our affairs in order

    I can remember how overwhelming it is to be diagnosed with this miserable disease, heck its overwhelming to live with it also, but I do believe it is very important to quickly start attempting to get our affairs in order once we receive this type of diagnosis.

    Would you share your strategies for future planning?

    Mine include:
    • Career-I went back to school for a more flexible career for if/when my health takes a dive. Although I know some people feel it beneficial to slow down for me the plan is to work as hard as I can for as long as I am able. It would be more stressful for me to not to make money. Plus when I'm off work I seem to shop, lol.
    • Financial-We were always savers but I have amped it up now and work as much as I can in an effort to attempt to live comfortably in the future.
    • Physically-I participate in structured exercise on a regular basis now. I continue to maintain a healthy weight and try to eat a fairly healthy diet.
    • Drama-no time for it in relationships and that includes family as well as friends.
    • Advanced Directive: updated it with my wishes for no DNR/DNI. If a Heimlich maneuver can't bring me back, let me go.
    • Housing-I will only purchase a 1 level home in the future.
    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
    Anonymous

    #2
    Good list!

    To be honest, I haven't done any planning which is really dumb of me. I think this gives me a lot to think about.

    Comment


      #3
      thank you Jules for reminding us to think about these things.

      No drama? LOL...You must not have children. I agree working as long as you are able is an excellent suggestion...financially and mentally.
      Getting your finances in order is another excellent suggestion.

      Thank you for the reminder.
      Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

      Comment


        #4
        I was diagnosed in my 30s so I went directly into planning for the future mode. I immediately enforced separate checking accounts for my ex and I due to his reaction to my diagnosis. Good move on my part...please note he is now an ex.

        I was trying to conceive at the time of Dx. and put that to a screeching halt. My future was too uncertain and I was not comfortable raising a child into my 50s...a very personal decision. I already had two children that I inherited because of a death in the family.

        I saved, saved, and saved some more, and worked as long as I could. I buyed a one story home near family with no mortgage.

        I actually completed a bucket list early. Best thing I ever did. I did not wait to do all those things I wanted too...I did them while I could. No regrets here.

        I started buying myself flowers. I absolutely love fresh flowers. I would always wait for a guy to buy me flowers. Heck with that! I have fresh flowers in my home every week now. I want to enjoy the flowers while I am alive. I never understood the purpose of flowers at a funeral. Who are they for? If it was my funeral I would haunt anyone who sent flowers. Why did they wait until I was dead and not buy them for me when I was alive?

        And I too implemented a DNR order. Additionally I have stopped all preventative screenings such as mammograms, colonoscopies, etc... Now that I have turned 50 and got the kids raised, I am not going through any more health issues...even if it means death. I am tired of doctors...purely worn out...the fewer I have to see the better.

        If I am not in a flare I squeeze every single moment I can out of every day, almost to the point of exhaustion and enjoy life...but I am not going to chase rainbows. My goal is Quality...not Quantity.
        Katie
        "Yep, I have MS, and it does have Me!"
        "My MS is a Journey for One."
        Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

        Comment


          #5
          when dx

          According to my brother, I did not look myself, the NMSS had said that on their website when I was dx.

          I had already started that because I had seen my parents unprepared for their retirement.

          Smart plan.
          God Bless and have a good day, Mary

          Comment


            #6
            Due to having a blended family (3 kids each) my DH and I (along with a Will) did Power of Attorneys for property (incl finances) as well as Power of Attorneys for personal care long before MS. Only 1 child (17) is not an adult yet, all the rest are 18 and over.

            I know from personal experience what bs it is not to have them done. My late Mum had Alzheimer's, passed away in Dec 2012. I'm STILL trying to settle her estate. I don't want anyone to have to worry about this stuff, especially making difficult choices while in the middle of a health crisis.
            RRMS 2005, Copaxone since 2007
            "I hope to be the person my dog thinks I am."

            Comment


              #7
              Thanks to everyone for writing! I have always been a bit of a control freak so this is right up my alley.

              KatieAgain, I'm still doing a few screenings for the stuff that I feel could be cut out without having to go through chemo or radiation both of which I will not consider at present. For now I kind of think anything that takes me quicker than MS might would be a welcome trade off.
              He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
              Anonymous

              Comment


                #8
                Agree absolutely. Better to have everything sorted while you're still capable of getting it done.

                The prospect of filling in the forms and getting all the paperwork organised so I can have a much needed disability pension fills me with dread.

                Trips to the bank, trips to the doctor, trips to social security - all too much to deal with. I know, phone a friend, but that would shatter my "I'm fine, honestly" facade.

                The chemist and I meet on a nearly daily basis, but that's just about the only place I go. If there was no online shopping, I'd be barefoot and naked.

                I've told everyone who matters that I don't want to be kept alive if it's hopeless.

                Comment


                  #9
                  Jules, your list is my list to a tee! We did the advance directive when I was pregnant with my first daughter, so I think it would probably be helpful to review that again, but I made the items you shared my priorities too.

                  Still have the multi story house...think about a ranch all the time, but my husband remains convinced I won't need it. I tell him that is because he doesn't feel the pain in my legs, but one never knows. My leg pain has been so much less these past six months...let's hope it continues. With MS, one can never be certain what tomorrow will bring, but ya got to love it when it is GOOD! I've been blessed!

                  Comment


                    #10
                    Originally posted by MyGirlsMom View Post
                    Jules, your list is my list to a tee! We did the advance directive when I was pregnant with my first daughter, so I think it would probably be helpful to review that again, but I made the items you shared my priorities too.

                    Still have the multi story house...think about a ranch all the time, but my husband remains convinced I won't need it. I tell him that is because he doesn't feel the pain in my legs, but one never knows. My leg pain has been so much less these past six months...let's hope it continues. With MS, one can never be certain what tomorrow will bring, but ya got to love it when it is GOOD! I've been blessed!
                    We even have similar husbands, lol. Mine can't seem to consider that there might very well come a day when I can't do all the stuff I manage now. Sometimes it frustrates me but other times I just pray he is correct.

                    Hang in there!
                    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                    Anonymous

                    Comment


                      #11
                      Planning for the future

                      You have a great list for planning. Mine differ just a bit:

                      Career- Continue working full time as long as possible. I switched to office work years ago, so that has helped a lot. I'm 13 years away from retirement, if the social security system hasn't collapsed by then.

                      Financial- To be totally free of debt in the near future. This means not having any luxuries (such as new cars or expensive vacations), not eating out, and rarely buying anything new.

                      Physically- Regular exercise and eating correctly (not eating out helps).

                      Relationships- Make more effort to talk to or see my aging parents and other relatives and more time with my family. This means spending more time on the phone (which I usually abhor). I'm learning to look beyond the issues that tend to create drama (getting a thicker skin and accepting others for what they are).

                      Advanced Directive: Unless resuscitation means living in a vegetative (or near) state, I will take it, at least for now. If my symptoms get much worse, I may go for a DNR later.

                      Housing- Yes to a one-level home with wide doorways and hallways. I also want a low-maintenance yard.
                      RRMS since July 2010.

                      Comment


                        #12
                        Hey Jules,

                        We did the legal stuff (living will, healthcare surrogate, POA, etc.) many years ago. The ranch house was easy...we live in Florida , we did redo bathrooms to
                        be more handicapped friendly. I had been a stay at home mom for many years when I was diagnosed, so when the "kid" started college, I started working again (albeit from home) in order to gain credits in case I needed to file for disability.

                        But when I started having autonomic dysfunction due to my MS, I got to thinking that the MS could take me out suddenly, and to tell the truth, everybody, MS or not, is faced with that prospect.

                        So there were things that for the 30 plus years of our marriage I have always handled, not that my husband wasn't capable, I just had more time to devote to it. Mostly financial stuff like banking, taxes, etc. I decided it was time I started showing my husband how we did things, where documents were, where funds were, etc.

                        We put the info on a thumb drive, evidently not advised to just keep this kind of info in a file on your computer due to hacking or system failing. But you could just as easily write it in a notebook. Also included logins and passwords to sites I use for things like online banking, credit card, even shopping site logins...he liked learning the login and password for Amazon Prime

                        Erma Bombeck used to tell the story that she had a dream in which she had died. She saw her family members looking at each other and saying "Didn't she tell you?" "No I thought she told you." She them reveals that the vital information she had failed to pass on was how to change the toilet paper roll. Pretty funny!

                        But I didn't want to put my husband or son and DIL in the position of not knowing how our finances worked so it is all recorded so they could access it in the event of a sudden death. Of course, every family is different, and for some it might not be finances, but other info like birth certificates, immunization records (if you have kids) etc. We decided to nail the info down so no one would have to wonder where to find it.

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