Tuesday, October 19, 2010


Well,it's been a little while since I have updated my blog.Busy fall days are here.I have now been on the propranolol for close to 2 months,and can't believe the difference it's made in my life.My pulse is still around 74,and blood pressure is around 110/74....I can't ask for more.I still tire easily,but I thank God that things have improved for me.I have learned what is enough,and when to let my body rest...that has been the hardest thing for me to learn...when to stop.I felt good enough one day last week I decided to go outside and work in my forlorn landscaping.I knew when I should stop,but I didnt do it,and I spent the rest of the week recovering from that little escapade!I have a plan in place for holiday decorating that should not tax me too much of my energy.I decided to work on one storage container a day,not try to deal with 12 or 13 in one day,like I used to in the old days.So I will be starting earlier than most people,so I can have the decorating done on time.Same with baking.I used to spend one whole day doing the baking,now I'm going to start about a week before Christmas and make one cookie each day,and freeze them for freshness...again,hopefully I will be able to save my energy.
My Dr approved me for a wheel chair.Its next to our bed in the bedroom,and its really for longer journeys.There are times I want to venture out further,such as the zoo with the kids,or the mall,and after a little bit my legs will tire out,but I still want to go!This is the perfect time for the wheelchair.This was very hard for me to accept,because I am so strong willed ,but I realized it's not fair to the people I am with,or my kids to have to cut a trip short because I don't feel like walking anymore.So I have a shiny new chair to take with us on our fall trip to the St Louis Zoo with the kids.They think its so fun to sit in it,and push themselves around in it.I am constantly reminding them that a wheelchair is NOT funny,some people have to rely on them 100% for transportation from room to room,and to be glad mom only needs it for when my legs are tired.I think they get it now.
So,busy fall days,and the holidays just looming around the corner,plus the wonderful propranolol that has helped me to feel so much better have made me so happy.I am looking forward to the next few months,and getting through them with a little more slowness.

Tuesday, October 12, 2010

Propranolol part 3

Today was a wonderful day,thanks to my wonder medicine Propranolol.We started out early taking the kids to school,then spent almost 2 hours leisurely shopping for my groceries at Wal Mart with no dizziness or leg weakness!I then helped my mom load 2 carts full of groceries into her trunk,still feeling good.Came home.cooked lunch,laid down for a power nap,woke up just before the kids came home from school.helped them with their homework,made supper....and I just felt so good today!I can't remember a day I have felt this good in such a long time.I hope its the medicine really taking effect on me,I hope I have more days like this,I hope I feel this good through the upcoming Holidays......but right now,I'm just thankful for today,because it was a reminder of what life used to be.

Monday, October 11, 2010

The Holidays are creeping up on us!

Well,as a dysautonomia sufferer,I know what a challenge it was last year to decorate my home for Thanksgiving,and Christmas.....Oh my,it took me forever,due to the fatigue and lack of energy.Since I am feeling better this year,but I still don't want to over-do it,I have devised a plan.I decorated very simply for Halloween,instead of the usual 3 storage containers I drag out.I put out decorations that are really more "fall" themed than Halloween,that way they will work for Thanksgiving too.In the mean time,starting tomorrow,I am weeding through the 12 storage containers that are full of Christmas decorations!I don't even use all of them.So I am going to take one storage container a day,and make a keep and a donate pile, and hopefully condense the amount of boxes I have.Then right after Thanksgiving,I am putting up the tree as that is the thing that takes the longest!Every day,I will pick one more box of storage out and decorate.That way there is no over doing it...slow and easy.About 4 years ago we had a exchange student from South Korea live with us for a year,and she became such a part of our family.She is coming back and spending the Holidays with us this year over college break.She will get here Dec 20th,and we are all so excited to have her here with us from the 20th until Jan 22nd...so she will be here for Willow's 7th Birthday.So much to look forward to.As I look out the windows,the leaves are still on the trees,but they are changing color now.How quickly one season folds into the next and then another year is over.So this year I am taking the whole Holiday season nice and slow,with lots of photos,so I can savor every second

Saturday, October 9, 2010

I hit a wall.

Of course not literally,but today,I didn't feel the best to start with,and I pushed myself through that as much as I could.As the day proceeded,I got into a fight with my husband,details are not necessary,and then it happened.I hit a crushing wall of grief and self pity unlike any I have dealt with before.Facing an incurrable illness,means that a lot of the old Julie is gone.The Julie who LOVED to go to comedy clubs with her girls,have a drink or two and dance after the show,nope,she is gone.And the grief hit me so strong,I felt as though wave after wave of cold ocean water was pouring over my numb body.The old Julie was a riot,she was quick witted,easy to laugh,easy to smile,ready to go out of her way for anyone,ready to do anything for someone she called a friend.She loved to dance,she loved to sing,she loved to eat raw cookie dough.She could giggle at the most inappropriate moments,giggle at very inappropriate things........I loved her.This Julie is fine,she is more vanilla,more "lets-not-rock-the-boat"the old Julie would be dancing in the boat ,daring it to tip.Grief had struck me again,this grief,crushed my heart,I felt like crawling into a little ball and just staying there.My life line came in a form of a best friend who has so many of the old/new Julie traits,the humour,sometimes inappropriate!The love of gore and horror movies,and ghosts,and things that go jump in the night!The love of dancing,even if you suck!This life line reminded me of a mother talking to a injured child,checking for the scraps and bumps,and seeing which ones needed band-aids.We talked for over a hour while I cried and poured my heart out to her about my grief.Grief,I was most sure I had dealt with on a previous basis.Thank God for my friend.She may roll her eyes,but it was her caring,that felt like a warm blanket around my cold numb shoulders.I finally emerged from the grief and the gloom,and we had a good laugh about what awful"white girl"dancers we are.She wins the award for saving a friend in need,most assuredly.So Grief,after being sick for well over a year,can sneak back up on you.For me it could have been the combination of not feeling well,the argument,that may have been enough for it to rear its ugly head.I hate it.I don't wan't to say I hate the Julie that I 've become,because she has more time for her children,more time to cuddle,not always in a hurry,but I have made a list of what I do miss,in no particular order,that the old Julie had.If I could have even one or two of these things back again,I would be so happy.Thats my new goal.to continue to get well enough to"earn" back some of what I lost....not all of it,I know that will not happen unless a cure is found,so here is my list:
                                                           1.DRIVING A CAR(oh my God,that would be heaven!!)
                                                            2.Dancing in a club/or anywhere for at least 5 minutes!
                                                            3.Jumping on a trampoline with Willow.(enough said)
                                                            4.INDEPENDENCE....no help from anybody
                                                             5.Tap Dancing lessons with Willow(they MAY be fun)
                                                             6.Family Vacation to somewhere awesome and I feel great.
                                                             7.Standing in the shower,the WHOLE time....lol
                                                             8.A walk with no heart pouding or fainting!

The good thing is the propranolol is working for me,I have not had one really bad day except yesterday,in almost a month,and I mean a POTSy day,There have been lots of days I have just felt tired,but yesterday was my first POTSy day in over a month...thats such a good thing,when they used to be on a everyday basis.So,yes,The old Julie is gone.....BUT maybe,there is even a better Julie just waiting to step into her size 8 shoes.

Tuesday, October 5, 2010

A Bitter pill to swallow.

This time of year always makes me reflective.Reflective on what I have lost.In 1995,I lost my first baby,Cailtlin Elizabeth who was stillborn one day before her due date,I had a very very bad Dr while I was pregnant with her,and I was very young and did not know to question his judgement .Her Birth/death date was Sept 27th.She would have been 15 if she had lived!Then K.J. came alonghealthy and happy,and3 months later I was pregnant with our sick baby Emily Anne who had 4 heart surgeries in 4 months time.She was born June 9th,just 1 month after K.J. turned 1.She smiled all the time,even though she felt horrible.She would be 12 right now if she had lived.Life throws us lots of curve balls.The second curve ball,with Emily knocked the wind out of my sails.I remember the Mayo clinic had to call a shrink for me,I was doing so badly,and screaming at the top of my lungs.I remember Kevin pulling a picture out of his wallet of a sweet little 18 month old baby boy who was home waiting for his mama,and I knew then,I had 2 choices.I could curl up in a ball and stop living,or I could take this into me,and use it to make me a stronger person....I chose the later.I'm not saying I don't think of them and have weepy days,I do.Especially as I see K.J. growing up.I think of the two that never will.This is my point though.Life sometimes throws you one hell of a curve ball that will knock you flat down...what are your options?you have illness?Dysautonomia?POTS?MS,RA?Are you going to be one who lays down in a ball and refuses to go on with this wonderful roller coaster ride called life,or are you going to pick yourself back up,brush yourself off,and be ready for the next curve ball?

Sunday, October 3, 2010

Learning the Law.

Well,it was bound to happen one of these days,I knew it would.My 13 year old son who wants to be a law student decided Sunday night was the night to test his parental boundaries.I was in no mood for this,as I didn't feel in top fighting mode anyway.He reasoned one more day home from school would give him time to go over all his homework and make sure is was all accurate before he turned it in.I held my ground firmly,we are going to try half days this week and see how you feel.He then countered with "you never listen to me" I replied"I hear everything you're saying but it does not change a thing,you are going to school half day in the morning ,end of subject"It was NOT the end of subject,he continued peppering me with comments about my love for him,why didn't I care,etc etc,I countered with,"WE would do anything for you,but its time to see if you are well enough to go back to school"This lasted 1 hour.No wonder I am so wore out.After the bombs had blown up or been diffused,we had a big hug session and talked quietly about our different views.I love that boy more than I can describe in words,from the second I knew he was inside of me growing,and generally he is the best kid you could ask for.....last night was a rare exception.Now I can't sleep,too much on this mother's mind.I pray sleep finds me soon,or God help who crosses my path tomorrow.;o)

A blue kind of day.

Don't get me wrong,there have been days that have been much worse than today.Today,the air has a fall crispness to it,the sky is a brilliant shade of blue.I am wearing cozy P.J's,and have a yummy lasagna ready to go into the oven for lunch.So,this girl,who chooses to look at the world through her rose colored glasses sees today as gray.Could be because I have a touch of a bug that has got me down.Could be the anemia that I am fighting(and loosing!The Dr called friday and said even though I have been taking the iron tablet 2 times a day for 2 months now,my iron level is still dropping and they want me to see a hematologist as soon as possible.They will call me Monday morning with an appt date and time)or it could be both things working together like a monkey on my back.All I know is today is a feel down day for me,a day I wish I could curl back up in the covers and go to sleep.Unfortunately life does goes on even though the sheets are calling me,I have two great kids who need my time and attention today.Willow has went next door to visit her papa,and is playing a game with him.K.J. is still sleeping,but if you have read my prior posts,you know it won't be for 17 hours!As soon as the world does not need me so much,I am creeping to my bed,with my cozy feather pillow,and warm blankets,and taking a nap,hoping to wake with fresh perspective on what is left of this beautiful fall day!