Oh My Broken heart!

For those of you who have not caught my daily rant on Facebook,I thought I would give you a little more information as to what is going on with my precious heart!I was in St Louis last week for a Stress test and a echo of my heart,the stress test itself was quite interesting,having POTS,and being without my medicine for two days as they recommended,so it didnt start out too bad,I was talking to the tech,noticing my heart was around 130,not a big deal to me.When the stress test advanced to the second level,boy did I see a difference,and almost immediately my heart rate jumped to about 175.The techs eyes got big,and he asked me how I felt,I told him I was getting winded.He called the test on account of my heart rate!Everything else went just fine.The next day I got a phone call from my cardiologist,to go over the test results with me,he said they found 2 problems,.the first is that my heart has too many extra beats...lol,yes.But really its a problem,they are deciding what to do about it.The second problem is the biggie.It looks to be genetic.I'm sure many of you have heard of a "long QT syndrome".Well this is the new,more recently discovered genetic heart problem called a "short QT syndrome"Essentially,my heart does not reset itself quickly enough for the whole next series of beats to start...how to fix it?Only one way,an implant,like former Vice president Dick Cheney had put it,its not a pace maker,but rather a defibrillator that will slow my heart down when it beats too fast.How do I feel about this?Well,I'm glad they found the problem,but scared at the solution.So,I must finish wearing the 30 day monitor I am now wearing that I push the button if I feel something "funny".When I am done wearing it,same day I go for a 24 hour loop,which automatically records every heartbeat I have for 24 hours,so they can watch this short QT syndrome of mine very closely for a 24 hour period.Then they want to do genetic testing to see if I carry the gene for this,if I do,My son will need to be checked out.As for now,I am so glad I did early Christmas shopping,no headaches!!!House is decorated to perfection that would make Martha Stewart happy,just a few more ornaments on the tree tonight and I am done!So,I will update all of you after my next big Dr Appt!!Hang in there with me,I need all the support I can get!~

Tests,tests,and more tests!

The crisp fall air is finally here,and as the leaves are drifting to the ground,this girl is getting buried in medical tests!I met my great new cardiologist last week in St Louis.His name is Craig Reiss,and he is awesome!He spent about an hour with me,explaining that autonomic disorders can affect your heart in many ways,but there are also many heart disorders that can mimic autonomic disorders,so they have to be ruled out for me.Also,since I have Lupus (currently in remission)he is checking for the clotting factor many people with lupus have.He said blood clots could have broke free,and went to my lungs,and although that is potentially very serious.he said it would cause the rapid heart rate and dizziness also.So,he wants to be very through with me,I appreciate that.He sent me to have labs drawn,and the tech started putting in the orders,and ALL these labels started printing out,I mean label after label.I'm thinking,they can't possibly all be mine.She turns around and looks at me and says"Oh Jesus"I said."Oh My" She said"I have never drawn this much blood from one person before"I said "well,I have never given this much blood to one person before"It started out as 23 tubes of blood,then after she looked at all the labels there were 3 duplicates(lucky me!)so it was only 20 tubes of blood!I told her I was trying to get over anemia!I better double up on those vitamins!So,besides the blood draw,he wanted me to wear a 30 day heart monitor,which I am now wearing.It also randomly records my heart at different times during the day and night,so the thing is constantly beeping at me for one thing or the other!It's really not horrible,but I will be glad when December 1st comes and I can take it off and mail it back to them!On Monday afternoon next week,I return to St Louis to Have A Stress Test Done at the hospital,and a echo of my heart.They told me I cant take my propranolol ,which I take for my dysautonomia the night before the test ,or the morning of the test...this really worries me!I jokingly told my husband maybe I better pack a bag just in case I end up being hospitalized overnight!My test is sort of late in the day,3:00 in the afternoon,so I am packing a overnight bag,just in case something happens.St Louis is 2 hours away from my home,I want to be prepared!I am also having an echo of my heart done on Monday,and then,hopefully that is the end of all the testing.The Cardiologist was very knowledgable about dysautonomia,and really eased my mind about it.He said propranolol is a perfect medicine for it,and it seems to be working great for me.So,get through the beginning of next week,and get past this 30 day monitor,and then I will have had every test known to man done!On another note,he ok'd me to drive again,after a year of being confined to my home,unless Kevin or my mom took me somewhere,I can now drive again.I can't tell you enough how this small bit of independence has brightened my life!I am taking my son to the movie tonight!It's great to be able to get out and be independent,and on my own.It's one thing I have wished for for so very long,to have that restored to me has meant so very much.So,I will update here after I have all my testing done next week.I hope everyone has a great fall weekend!

Happiness

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.

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.

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

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.

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?