highspiritedlady

Hey New York,

           I hear up-state is very pretty, but I think you get too cold up there for me. We get lot's of snow but it doesn't get THAT cold.

           So what works for me...well, first off being 50 with a 10 yr old to keep up with is a big thing.  She is my motivator. And my temprent.  She let's me know when I should be moving so I don't get stiff and she frowns at me when she knows I'm doing too much. LOL  When I shake my foot, she knows I've over done it and will actually go get a pain pill for me.

           I do Chi with David Carradine off an OLD vhs tape I picked up years ago.  It's slow and smooth ahd not too strenous on the joints.  I also do restorative yoga.  I 'm blessed with a friend that is a yoga teacher specializing in helping people with injuries. Sometimes I do the class and sometimes I follow the dvd she made for me.

           Walking is too much for my knees anymore, unfortunatly with the RA has come some extra weight, and they tire easily. Everything I do is in shifts, If I vaccuum Sunday, I only do the livingroom and leave the rest for Wednesday. Things like that.

            NO LISTS!!!!!!!!!!!  Do not make lists of physical activities (grocery shopping, cleaning, running errands) that cram too much in.  You never know when a flat tire is going to hit (that's what Lily calls it when I run out of energy) What good is the dishes done if you don't have enough energy to go to a movie with your friends?

           ALWAYS make time for you.  Meditation, a good book, live music.

                          Always remember to live as if there is no tomorrow!  ;-)

                                              Nancy

Yeah, we don't like the cold either!  

I make lists of what I need to do, but with no time limit attached - just to prioritize, sometimes just what ONE thing am I able to do next, that will take me one step toward fulfilling the day . . . and always pat myself on the back when it's done, whether it's changing the bed, doing the dishes, or catching up on all that insurance paperwork (I happen to be good at paperwork, which is a necessary evil, and that's often the way I get my rest.  But it doesn't allow for the aesthetic of, say, listening to music (my husband and I are both music majors/music lovers ... we met at the Crane School of music as graduate students, and he is now the audio engineer there).  I love to sew, as well.

   Tai Chi is helpful in getting me to focus on the present, rather than all those plans I tend to make that just don't work anymore!  My mind still wants to do it (it's a game my busybody mind likes to play, but that's becoming less so) but my body says, "Whoa!  Let's slow down here, baby!"  Deeeeep breath!  I can lower my blood pressure about 20 points (at least the first number - the last one goes up with pain regardless...)  I do miss not being able to accomplish what I used to - but to rush or pressure myself to do it, doesnt' work, so I'm gradually getting over that.

    50 with a 10 year old - wow!  That's neat that she is so attuned to you.  My only daughter is 25 and I do not get to see her much, but when she was 4, and I would get exhausted (way before RA), and lie on the couch, she would come over and say, "Mommy, you're all out of love,  I'm going to fill you up!" and kiss me - aren't children amazing?  It was so sweet, how could that not help?"

    Best wishes -

Ellen,

          You know in the begining, I refused to accept that I was not Wonder Woman any more; I fought it at evert turn, every dr's appt, every commercial that said "Who are you going to be now that you have RA".  Have you seen those...oh they used to make me so ANGRY!

         But one morning I woke up to an INTENSE flair-up because I pushed myself too hard and too long, and I finally told myself I was NOT the person I used to be; but that didn't mean I couldn't be someone I was proud of, someone that I would be happy with.

         I did some intense soul searching that next couple of days.  I follow my Native American beliefs (I am half Cherokee), But I study alot of Buddism teachings and I think that pulled me out of my black hole that I had allowed myself to slip into.

         Talking to people was my greatest inspiration, when I would open up to them, I found out that every one has their cross to bear. In letting them unburden on me, somehow my burden got lighter and lighter.

         It still helps to this day and I have a large circle of friends that I can rely on for emotional support.

                           Here's to sunshine and rainbows!

and - because of all that you do, you actually end up being a WonderWoman of a different sort!  Not some caricature or cartoon, but a unique and creative individual.

I am so taken with all you are saying - I have done some reading in Native American spirituality, and even had a dream or two about it - I am a Christian of the Episcopal variety, and yet I find it impossible to put God in a box (every time I did, when I was younger, my faith would vanish, but a newer, stronger one would emerge, leaving a stereotype in the dust) and now that I have been through these RA trials, and other emotional ones leading up to my diagnosis, the idea of a creed defining belief seems more and more absurd.  Structure can be helpful, but the Spirit blows where it will and no one can tie it down!  I think there is more that unites people of differing beliefs and we can all learn something from each other.  My earliest recognition of the Spirit was in nature, and that has never totally left me, though I've felt imprisoned in an invisible 'prism' at times...They say, "what doesn't kill you makes you stronger."  From what I have seen of family and friends that have passed away, I believe there comes a time when our own individual spirit grows, not too weak for the human body, but too strong, living through all these challenges and difficulties, and it comes time for us to 'graduate' to the next phase of existence (some of this relates to the Tibetan Book of Living and Dying - which has been extremely helpful to me at times when Christianity didn't seem to offer much help - i.e., how to sustain oneself through suffering.  For me, it was initially suffering of an emotional sort.  In some ways, the physical suffering is easier, it leaves my faith intact, though challenging me in many other ways ...

How I do go on!

May peace and harmony surround you, and your family, and all of us!

Ellen, 

        Nietzsche was certainly with us when he quoted that pharse, and you understand he's true meaning entirely. He was tortured with mental problems his whole life and he lived through the holocust. I believe we all do have a breaking point and I think with pain, it is at  severly different levels for all of us. 

        Some days, like you said, it's the physical pain that floors me, fogs my mind, and makes me ANGRY. Other days it's the mental challange that has the worst affect on me. I draw on all my faith sometimes to guide me through the haze.

        My first RA doctor said it best though " We are not in a race here, we are in a marathon" . And when I look at it that way, it helps me to calm the anxiety. I know that RA won't kill me, but I am going to die with it. ACCEPTED!  Then I moved on.

        I do look all the time for new drugs to try. I surf the web and then I talk to my family dr who takes care of my maintenace. I would be so lost without him. He checks to see if my ideas having any validity and if their safe and then he gives me a yea or nea. I take Embril, so I have to be carefull what to mix with the biological drug.

       I have been tested for Celiacs disease, Glueten intolorance, and though I came up negative , I gave up all glueten products. I eat rice and potato flour products, and I have noticed a destinct deference in my stomach problems. I had my vitamin D level checked and found it was low, so now I make sure I get plenty of sunshine and take 1000units a day with my evening meal. It seems to have had a positive affect on my backaches and pain.

       My daughter and I took up flying kites, we have about 10 different ones now including a pirate ship and 12ft Koi Dragon.  It takes your mind away, almost better than meditation.

       You said that your husband and you both are musicians but don't play much? Shame on you! Music soothes the savage beast. You have to remember there's always time for life....Paperwork CAN wait.

       My husband and I are seperated, have been for a while, but he was diagnosed with Parkinsons disease, so we are putting off signing papers untill we can get him on disability and medicare.  We still live in the same house, financially we can't make it alone. But we get along better now, because with his diagnoses and symptoms he know has first hand knowledge on dealing pain and fatigue.

                    Carpe Diam           Nancy