Whats up with me and my health?;o)

Remember me?Yeah,its been a long time since I have posted to my blog,to just be truthful,I didn't want to.The past two months have been an  emotional and physical roller coaster for me.All I wanted to do was find out what was wrong with my heart.The Cardiologist I see is one of the best In St Louis,a Professor at Washington University.He is very intelligent and informed about POTS and Dysautonomia.I have been through a battery of tests,including a stress test and echo of my heart.After these two tests I got news that I may have a extremely rare genetic condition known as Short QT syndrome.Talking about rocking my world.It was very bad news.I really was scared and depressed after this,and the research that I did about this disorder,not to mention that I could have passed this on to K.J.I proceeded with a 30 day heart monitor and then a 24 heart monitor and waited to see the Cardiologist.I saw him on Monday and got much better news!Based on the 30 day and 24 hour monitor,they have ruled out the rare genetic condition...that was so good to hear!At this point,the heart problems are this:1.Extra ventricular beats.....this contributes to the palpitations.And 2."Inappropiate Sinus Tachycardia"This is also another cause of the palpitations and chest pain.We are trying to treat both of these conditions via medication.At this time we are experimenting to find the right meds for me.I have been on metoprolol for almost a week....Things seem the same at this point ,but he said it takes a while sometimes to get the medication built up in your system.I see him back in 3 months,unless my symptoms do not improve or get worse..then I am to call him immediately.So thats where I am at this point.I am enjoying time with the kids while they are home on Christmas break,and enjoying the return of our former exchange student from South Korea,Julia.She will be staying with us until the end of January,and will return to S Korea to hopefully get her dream job as a flight attendant for Korean Air.Its a very prestigious job for South Koreans to have.I have no doubt she will get hired.She is beautiful and articulate,and speaks wonderful english,so I can  see her getting this job.I dont know when we will see her again after this visit.Maybe if she gets the job we can meet up with her when she flies to a US city that is close to us,maybe Chicago?

Anyway,this is my much needed update to my blog.I will try to keep it updated better,it's just been such a scary time for me,but now that this is behind me,I am much more hopeful about getting this situation with my heart under control.Surgical intervention is a LAST option,and there are many medicines I can try if needed.Merry Christmas to everyone,all my Facebook friends and family,you know we will be talking soon after Christmas!~God Bless<3

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?

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!

Wish List

You know ,when you develop a chronic illness,whether its Dysautonomia,POTS,Lupus,RA,MS,or countless others,and you become ill you think about the good old days.I discussed this with my best friend Ash the other day,and we both agreed that we take so much for granted as healthy people.When you become ill,all those little things we take for granted,taking a long hot shower,standing under the hot water forever,blow drying our hair and putting on make up,cleaning your house until it's gleaming,Taking a long leisurely walk down the road,or pushing your little girl on the swing as high as you can ,driving a car.These are all now on my wish list.Things I am not guaranteed,but things that I wish to have back so bad.It's amazing as a healthy person what you take for granted.I am as guilty of doing it as anyone else.I would push my body and push it even further to do those extra things,now I am just begging to be able to do the things on my list.I want a good family vacation to Florida and Disney World,and I want to feel like walking all over the park,and riding all the rides without being wore out.Good news for me,is that my Propranolol is still working,and I am still taking iron tablets for the anemia,but I believe in my heart that I will be able to do some of the things on my list,and if I am extra blessed,I will be able to do all of the things on my list,once my body recovers from being ill for so long.I think my wish list fills my heart with happiness and optimism that this is not the end of the road for me,but just a curve.

The Dr said.......

The Dr Said that 17 hours of sleep is too much(as if I didn't already know that!)He said not to let my son sleep for longer than 12 hours,because when you sleep for longer periods than that it actually depresses your body.He said you need the sunlight,etc.So no more long bouts of sleeping.It seems he is still recovering from this nasty 4 month long bout of mono he has had.The P.E. class at school when he did drills reactivated the virus which had finally quieted down.So,now we're going through the recovery process again.He plans on going back to school next Monday.In the mean time,he is keeping all his homework caught up,and resting ,drinking lots of fluids.It's tough on a parent to see a vibrant young teenager look so sick!He did have a big laughing spell today,and it did my heart good,reminded me the old him is still in there,just recovering from a nasty illness.

As for me,today has been such a great day,the weather is beautiful here,and I feel pretty good.my medicine has definitely made such a difference in my life,I would be scared to ever be without it.It has allowed me to stand for longer periods of time,and my heart doesn't feel like it's going to burst out of my chest anymore either.My blood pressure is a nice 110/68,pulse 70,so I am a very happy girl.I am insightful enough to know that everyday won't be this good,so I am enjoying today,enjoying the blue skies and sunshine,and enjoying the wonderful sound of my son's laughter.




 

17 hours of sleep!!!

Those that know me well,or follow my blog,know my son is trying to recover from a 4 month long bout of mono,that ate up his entire summer,and it's starting on the school year.He did make it a couple of weeks at school,but then the exhaustion set in and he was lost.He missed 2 days last week,and 3 days this week,with a Dr appt in the morning,to see what is going on with him.I let him rest yesterday morning,knowing he would wake up while I was in town with my mom doing errands....he slept until 2:15 pm yesterday afternoon,going to bed at 9 :00 pm the night before,17 straight hours of sleep!I don't think he has ever slept that long in his whole life!At this point I am very concerned about his health,and if there are underlying health issues involved.This is supposed to be the best time of his life,the carefree fun time.I hate mono,and I hate that this is the second time in 3 years that he has had it.I will update the blog once I get home from the Dr in the morning(ha,it already is the morning)and see what is going on with my # 1 son.

That 4 letter word M-O-N-O!!!!!

I think in the book of illnesses,Mono must be one of the worst by far.It feels like POTS only worse,and you have a sore throat and stomach and headache to accompany it.My son is currently in his 4th month of trying to recover from Mono.There is no antibiotic or magic pill they can give you for this,it takes bed rest,lots of liquids and avoiding the heat to recover.His summer was horrible,he couldn't go out to ride his bike or go fishing.....he spent it reading books and playing his PS3.I felt horrible ,knowing this was a summer of his life,lost to illness that he could never get back.He still has mono.It seems once he got into school and started taking Gym,that it reactivated the virus,which,for lack of better words was sort of sleeping.Now he is sick again,He missed 2 days of school last week,has slept away almost the whole weekend,and I doubt he will be going back tomorrow.It's a horrible feeling as a parent to watch your child ,whether they are 6 or 13 suffer.I would gladly be ill in his place,any good parent would say the same thing.Sort of makes me understand why my mother asks me two or three times a day how I am feeling .She feels the same way about me as I feel about my son and daughter.I hope every morning that he will wake up and this awful mono will be all gone.I worry,because I first became ill with POTS after a serious bout of mono that I suffered myself.Please tell me God,that this is not something that is waiting for this bright vibrant boy later in his life,it would kill me inside to see him suffer from this same illness.But again,I do look at the glass as half full,and I wear rose colored glasses most of the time,so for now,I'm just thinking he has mono,it's taking a bit to recover from,and he will be back to his normal smart mouthed,quick thinking,fast to laugh ,self.The one that I adore so much.

Propranolol,Part 2

O.k. It could have happened to anyone,the pharmacy problem,but yesterday,after I posted how great things are with my new medicine,things steadily declined through the afternoon,enough for me to know how much I LOVE Propranolol,and I don't ever want it to go away!

Seems the pharmacy,due to insurance was unable to refill my prescription for 3 more days.....I was waiting for my prescription to be brought home by Kevin yesterday for my afternoon pill.The Pharmacy and myself both tried to call the Neurologist in St Louis to get the prescription changed.No such luck,you get caught in a web of phone transfers and lengthy voice mails.I was panicked,and as the afternoon wore on,my heart began to pound,the nausea returned,as did the shortness of breath.I hated knowing it was this easy for me to feel horrible again,missing one pill could do this to me......then I had an epiphany(angels singing,bells chimed)as I remembered my old Neurologist said he would be here if I ever needed him for any reason.This was at 4 :00 in the afternoon.I had his nurses direct line,but got her voicemail stating all calls after 3 pm would be returned the next business day.I left a panicked message in tears,telling them the whole situation,and how I needed these pills NOW.I hung up,feeling more disheartened.45 minutes later,Debbie,my former Neurologists nurse called me back and said Dr Mettu had wrote the prescription out,and it had been called in.I wanted to squeeze her through the phone,instead I thanked her profusely.Kevin went straight away to the pharmacy,got my prescription and brought it home,by this time I was laying on the bed feeling horrible.I took my pill,and within an hour or so,I began to feel the pounding heart go away,the labored breathing and the nausea.My old Neurologist was a life saver,while the new one is great,he is from a University in St Louis with a HIGH case load,and just had not gotten around to fixing the problem with my prescription so insurance would cover it.

I now know how much I depend on this little pill,and the fear I felt inside with my symptoms returning so quickly.For now,the rose colored glasses are put in a drawer.I am sure they will come out again when I am feeling more secure about my health.I saw how quickly things with POTS can go from good to bad,and it scared me,just missing one pill.But for right now,no rose colored glasses for me,just Propranolol 80 mg 2 times daily.

Propranolol 80 mg capsules 2 times daily.

I am amazed at how this prescription has in just a few short weeks,improved my life.No,my life is still not how it used to be,and when I look at my old life through the rose colored glasses I so often wear,my old life,before I got sick was just about perfect.I could do anything I wanted anytime I wanted to.I could hop in my car and drive anywhere I wanted to at the drop of a hat.But the prescription Propranolol,has given me the first steps back at a life.I can stand longer without my heart pounding,I walked to the mailbox and back yesterday,and didn't feel like I was going to faint!I think I have learned to appreciate the small things in life now.All the small things I want to be able to do on a daily basis with no fainting,or heart pounding,or nausea.Taking a shower,blow drying my hair,putting on make-up.straightening up the house,baking cookies,making supper,going to the movies.All these things are the things that are my "new" life.Things that I want to be able to do again,and I believe that propranolol has put me on the path to doing those things again.I am so thankful that the first prescription I was put on has worked for me.A lot of my friends have to go through a list of medicines,and even sometimes take a saline IV to control their symptoms.So far(knock on wood)I am doing so well on this medicine,I feel like I am getting better everyday.I am also on iron pills to recover from some severe anemia,so between the two medicines,I feel I am getting stronger.I can't believe a little pill has helped me so much.It makes me want to keep my rose colored glasses on a little longer.=O)

Priorities!

Today is a beautiful early fall day here.It's not going to be hot,the skies are a deep blue.The kids have been packed up and sent to school,I have done my chore for the day,which was 2 loads of laundry(I space all my house cleaning out on a daily basis instead of doing everything in one day,that would take me days in bed to recover from!)So what do I plan on doing now?I plan on getting my coziest blanket,and big soft feather pillow,and laying down for a long nap,sleep until I wake up.Part of me feels guilty,but the other part of me wants the nap so bad it's silencing the part of my brain that wants to go outside.I have learned one very important thing from becoming ill.Priorities.What really matters the most.It kind of goes along with the spoon theory,but it's more about making time for what really matters to you.So,the leaves are not falling off the trees yet,they are just starting to turn color,I think there will be another beautiful fall day I can go out and enjoy,when a nap isn't my number one priority. =o)

Pity Party!

What a horrible day Saturday was for a girl who tries to stay optimistic and always see the glass half full.The waves of nausea washed over me again and again until now I feel battered and bruised.The only plus,or optimistic thing this positive minded girl can think of at this point is a) My heart rate is so wonderful,and I am not finding myself winded at the smallest activity that I do.Saturday was such a bad day for me,I woke up feeling good,ate some cereal,but around 10:00 I felt it creeping up on me while at Wal Mart.This nausea is the kind that makes you feel chilled,and you don't want to move at all.I got home,and Kevin had made the most awesome B.B.Q. lunch,the smell just made me so sick,I got the heating pad and laid down and slept for 3 hours.I ate some yogurt when I woke up because that's what my body told me it wanted.I'm getting pretty good at listening to what it says or it will make me pay.The only other thing I can  say to add to my pity party is everyone keeps passing the buck when it comes to giving me some medicine to ease the nausea.My family Dr thinks the prescribing Neurologist should change medicines(NO!!!!!!THIS ONE WORKS SO WELL!!!!)or give me something for nausea.The Neurologist wants me to wait until I see the Cardiologist who will follow me more closely since I am on a medicine that is controlling my heart rate and blood pressure.He(the Neurologist)feels the Cardiologist will know what to do.I have even had advice from a dear friend who suggested we fix the problem ourselves.....just not sure what to do,except right now I am a big baby who wants sympathy.Kevin is wonderful,but I think he hears about me feeling unwell so much,its hard for him to differentiate between unwell and REALLY unwell.I don't feel REALLY unwell,just so damn sick in my stomach.So,here I sit at 2 am,attending my pity party.Any of my blog followers,can feel free to attend. It is B.Y.O.N.(bring your own nausea!) = o)

Most Common Dysautonomia Symptoms

Ever wonder why you feel some symptoms but not others?Its all normal.we are all different.This is a pretty detailed list of Dysautonomia symptoms that you may or may NOT experience:

 This is a compiled list of symptoms put together by researchers of dysautonomia. You can see why the puzzle is so big and hard to put together and why most days life is a struggle for us. At.any time we can experience any combination of these things not just from day to day, but from hour to hour.



Lightheadedness

Fainting or near fainting
Blackouts

Generalized weakness

Palpitations
(irregular heart beat that causes conscious awareness of it's beating)
Tremulousness (uncontrolled shaking of body parts)

Seizure like activity

Shortness of breath (air hunger)

Chest discomfort and/or pain

Loss of sweating

Excessive sweating

Loss of sweating and excessive sweating

Delayed gastric emptying

Bloating after meals

Nausea

Vomiting

Abdominal pain

Diarrhea

Constipation

Bladder dysfunction

Polyuria ( excessive urination)

Pupillary dysfunction
Blurred vision
Tunnel vision

Fatigue (which can be disabling)

Sleep disorders (can cause unrefreshing sleep and an increased need for sleep)Headache/migraine

Myofascial pain (the connective tissue that covers the muscles)
Neuropathic pain (nerve pain)

Dizziness

Tachycardia (rapid heart beat)

Bradycardia (slow heart rate)

Exercise intolerance

Clamminess

Anxiety

Flushing

Postprandial hypotension (low blood pressure after meals)

Blood pooling in limbs (can make legs feel heavy and appear mottled and purple in color or swell to sometimes twice it’s normal size)

Intolerance to heat

Feeling cold all over

Low blood pressure upon standing

Cognitive impairment(may include difficulties with concentration, brain fog, memory and/or word recall)

Narrowing of upright pulse pressure
Cold hands (and often feet & nose)
Hypovolemia (low blood volume)

Chills
High blood pressure

Hyperventilation

Numbness or tingling sensations

Reduced pulse pressure upon standing

Low back pain

Aching neck and shoulders

Noise sensitivity

Light Sensitivity

Disequalibrium

Arrhythmias (irregular heart beats)

Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses)

Easily over-stimulated

Feeling full quickly
Feeling "wired"

Food allergies/sensitivities (some foods seem to make symptoms worse) Hyperreflexia
(overreactive reflexes)
Irregular menstrual cycles

Loss of appetite

Loss of sex drive

Muscle aches and/or joint pains

Swollen nodules/lymph nodes

Polydipsia (excessive thirst)

Weight loss or gain

Feeling detached from surroundings

Restless leg syndrome



Thanks again for taking the time to read.

"But you don't look sick!"

How many times have I heard that?I have surely lost count by now.As we all get ready for whatever we are doing this weekend,and we leave the house with a smile on our face,at some point someone will have these words uttered to them.You know,we are sort of like the turtle with it's protective shell.Most people only see the tiny claws and head poking out,but what is under the shell is a mystery.So it's the same for us POTSy or Dysautonomia sufferers.People see whats outside,but not whats under the shell.I just want to give you a word of support this morning,to let you know there is a vast group of us who suffer together,mostly via the Internet.I knew nothing about Dysautonomia after being diagnosed until I found You Tube.It saved me.That lead me to face book,and my wonderful support system.We laugh together,cry together,gripe together,we "get it" when someone says they are having a POTSy day.We know what that's like.There are so many resources available on the Internet,I am in the process of trying to link some of those to my blog,but WE GET IT!This weekend,just remember ,when you are told that you look perfectly healthy,remember that turtle and its shell,and what cant be seen by the eye.

Spoons!!!

How familiar are those of us with a chronic illness with the spoon theory?You start out with,say,5 spoons for the day.You use one spoon to take a shower,a second spoon to blow dry your hair.A third spoon to out on your make-up.....that only leaves you with 2 spoons left for the whole day ,and its 8 am!I try so hard to stretch my spoons out and make them last as long as I can into the day,I try to nap,which helps me save a spoon,and use it later.I try to have at least one spoon left when the kids come home from school because they deserve my time and attention as much as anyone else does.Housework gets spread"lightly" through the week.and these are only the things I can do.I can sit on the floor and fold laundry,I can dust if its nothing high where I need to reach up.I can clean the windows,they  tilt in.Things I cant do:run the vacuum,it will drain me in under a minute,same goes for vacuuming the stairs.I cant dust high locations where I have to reach,or I will get dizzy and heart palpitations.I cant scrub the shower,I get very sick from the heat and steam.I cant drive right now...I would give all my spoons to be able to do this.I miss my independence more than anything else and its tough to always have to rely on others to get you where you want to be.that one is the hardest to swallow.Not being able to hop in the car with the kids to go to Wal Mart or McDonalds.So,for now,I ration my spoons so carefully.We are having a b.b.q. this afternoon,which means to save a spoon to use then,I will need a morning nap to conserve spoon usage.Funny the things we take for granted isn't it?

Day to Day Challenges.

I think unless you are a person who suffers from a disability,or a long term illness,it's hard to appreciate the ease in which everyday things are done.For example,making my bed in the morning actually drains the strength out of my arms,and requires me to take a rest after.Unloading the dishwasher,or running the vaccum all require a great amount of energy,and to someone who is short on energy anyway,it can be very tiresome,and very frustrating.The worst part of my day is taking a shower.I know that may be hard to believe,but the heat and steam actually cause my heart to race faster and the feelings of dizziness to be much worse.I usually have to do this while sitting down in the shower on the bench .This used to be a relaxing time for me,now its get-in-and-get-out -as- quick-as you-can.All of this being said,I can say on a up note that the propranolol the Dr's have put me on is working well.The worst side effect is nausea,and its usually in the evenings,and it does get pretty bad.But during the day,thankfully,I am for the most part nausea free.I am so glad to finally be on some form of medicine and that it's working for me.All my symptoms are not gone.The overwhelming fatigue is still there,the joint pain,the brain fog,(and more that I know I am forgetting...)are still there,but I can live with those.The relief I feel being able to breathe and NOT have a pounding heart makes those other symptoms easier to live with.Some things I cant cook,anything that involves boiling steamy water,like spaghetti.I can start it,but my husband or son will have to finish cooking it and drain it,because if I do,I may be passed out on the floor as a result of the heat and steam making my heart rate rise and my blood pressure drop. I miss my old life a lot ,and sometimes feel a little bitter about it.But then,I look at the other side of the coin and know how lucky I am just to be alive,and the bitterness goes away.Yeah,this life of mine isn't perfect,BUT it is MY life,and I am grateful for it.

 

1. The illness I live with is: POTS (Postural Orthostatic Tachycardia Syndrome)a form of Dysautonomia

2. I was diagnosed with it in the year: After 2  years and numerous doctors I just began to be diagnosed in September 2010.although we knew this was the diagnosis I was headed towards!

3. But I had symptoms since: I have had symptoms since the age 12!

4. The biggest adjustment I’ve had to make is: Giving up quality time with my kids and friends,the ability to "go" whenever I feel like it.Not driving a car.

 

 

, 5. Most people assume: I want attention, I'm exaggerating and am too negative or that I am not as sick as I am because I am usually pretty happy and try to stay active as I can as I have learned that it minimizes my symptoms.

6. The hardest part about mornings are: Starting the day off with a shower.It absolutely drains me.

7. My favorite medical TV show is:House

8. A gadget I couldn’t live without is: My compression stockings!

9. The hardest part about nights are: When I cannot sleep or just no energy or I have to cancel plans with a friend becasue I am sick.

10. Each day I take _8_ pills & vitamins.

11. Regarding alternative treatments :Therapeutic massage......wonderful!~

12. If I had to choose between an invisible illness or visible I would choose: VISIBLE hands down. If only to shut people up because they could SEE that I was really sick!

13. Regarding working and career:Unable to work anymore.Was fired from my last job due to my FMLA running out and no more vacation or sick time to cover me being ill.

 

14.Favorite quote or scripture that helps get you through tough times:Those who hope in the Lord will renew their strength. They will soar on wings like eagles." Isaiah 40:31

Kids and Chronic Illness

This is a tough post to write.I worked for almost a year after I got sick from mono and POTS,and would drag myself home every night.I remember pulling the car into the garage,and plastering on a smile for my two children...until the day came that I couldn't keep plastering on a smile and hide my illness from them.He is 13 ,she is 6(and 1/2!!) and they are precious to me.The funniest thing about all the smile plastering I was doing,is that they both saw right though it to what lay beneath...Mom is really sick.

The hardest thing to do ,is to have to tell them "no" when they want to do something fun because I don't feel well. Also tough is the amount of napping I require just to be able to function.My 13 year old has been wonderful in helping out in this area,he will play a video game with his little sister,or turn a movie on for her,something to occupy her time until I wake up.Its hard not having that"Go Go Go!!!"lifestyle that I had before,I miss it a lot.It's tough not being able to drive and depend on other people to get me places I used to be able to just hop in my car and go to by myself.But the hardest thing of all is learning to accept the mother that I have become to my sweet kids,and knowing that super mom will probably not be returning to my life.The kids understand this and want me to do whatever I can to feel better.If that is a nap,they want me to take one,then I can wake up,and make cookies for them,or watch a movie.Chronic Illness sucks,not just for you,who physically deal with it,but for your family and friends,who deal with it on a emotional basis.

POTS Awareness

Dysautonomia=POTS

Yesterday's Neurasthenia, Today's Dysautonomia

People who a century ago would have been called neurasthenics today are given a host of diagnoses. These include chronic fatigue syndrome (CFS), vasovagal or neurocardiogenic syncope, panic attacks, anxiety, inappropriate sinus tachycardia (IST), irritable bowel syndrome (IBS), postural orthostatic tachycardia syndrome (POTS), or fibromyalgia. Sufferers of all these conditions tend to experience an imbalance, and most often a peculiar volatility, in the autonomic nervous system. We now call this dysautonomia.

The Autonomic Nervous System And Dysautonomia

The autonomic nervous system controls the “unconscious” bodily functions, such as heart rate, digestion, and breathing patterns. It consists of two parts: the sympathetic system and the parasympathetic system. The sympathetic system can best be thought of as controlling the “fight or flight” reactions of the body, producing the rapid heart rates, increased breathing, and increased blood flow to the muscles that are to escape danger or cope with stress. The parasympathetic system controls the “quiet” body functions, such as the digestive system. So: the sympathetic system gets us ready for action, while the parasympathetic system gets us ready for rest. Normally, the parasympathetic and sympathetic components of the autonomic nervous systems are in perfect balance, from moment to moment, depending on the body’s instantaneous needs. In people suffering from dysautonomia, the autonomic nervous system loses that balance, and at various times the parasympathetic or sympathetic systems inappropriately predominate. Symptoms can include frequent vague but disturbing aches and pains, faintness (or even actual fainting spells), fatigue and inertia, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms such as irritable bowel syndrome, sweating, dizziness, blurred vision, numbness and tingling, and -- quite understandably -- anxiety and depression.
Sufferers of dysautonomia can experience all these symptoms or just a few of them. They can experience one cluster of symptoms at one time, and another set of symptoms at other times. The symptoms are often fleeting and unpredictable, but on the other hand they can be triggered by specific situations or actions. (Some people have symptoms with exertion, for instance, or when standing up, or after ingesting certain foods.) And since people with dysautonomia are usually normal in every other way, when the doctor does a physical exam he or she often finds no abnormalities.

What Causes Dysautonomia?

Dysautonomia can be caused by many different things; there is not one single, universal cause. It seems clear that some patients inherit the propensity to develop the dysautonomia syndromes, since variations of dysautonomia often run in families. Viral illnesses can trigger a dysautonomia syndrome. So can exposure to chemicals. (Gulf War Syndrome is, in effect, dysautonomia: low blood pressure, tachycardia, fatigue and other symptoms that, government denials aside, appear to have been triggered by exposure to toxins.) Dysautonomia can result from various types of trauma, especially trauma to the head and chest. (It has been reported to occur after breast implant surgery.) Dysautonomias caused by viral infections, toxic exposures, or trauma often have a rather sudden onset. Chronic fatigue syndrome, for instance, most classically begins following a typical viral-like illness (sore throat, fever, muscle aches, etc.) but any of the dysautonomia syndromes can have a similar onset.

What Becomes Of People With Dysautonomia?

Fortunately, the prognosis appears far better than it was in the days when the disorder was called neurasthenia. This is likely because bed rest is no longer considered the treatment of choice. Most victims of dysautonomia eventually find that their symptoms either go away or abate to the point that they are able to lead nearly normal lives. Sometimes, in fact, the probability that things will ultimately improve on their own may be the only thing that keeps some of these individuals going. But even though the symptoms eventually improve in most cases, many people with dysautonomia experience symptoms that completely disrupt their lives, and the search for competent medical assistance in rendering their symptoms tolerable is too often a difficult one. So if you think you may have dysautonomia, you should learn as much as you can about the various forms of this condition, especially how the dysautonomias are evaluated and treated.

How I came to be a POTSy head.;o)

Well,on this subject,there is not a lot I know.I have always been sick.My mom remembers me getting ready for school,laying on the bed telling her my heart was pounding and I felt like I was going to faint(classic POTS symptoms).Back then they attributed it to plain "tachycardia" and told me whenever I felt like that to bare down like I was trying to have a bowel movement!It worked for awhile.Fast forward to adult hood.My husband and I began a family.My blood pressure soared out of control and I was placed on bed rest.The baby,Caitlin,survived until one day before my due date,and due to multiple issued pertaining to the high b.p.she died still born. Hard times for Kev and I.We clung to each other and shunned the world,and 10 months later,I was pregnant again,and with a wonderful new Dr who checked me 2 times a week.This little baby was healthy,and I was doing well too.Kevin Jr was delivered by unplanned C section due to his arm compressing the cord. I remember how hard he cried when he was born,and Kevin brought him to me,and as soon as this little guy heard my voice,he opened his eyes and looked at me and stopped crying.Instant bonding and a moment that my hearts scrapbook will always cherish.three months later pregnant again,happy,sad and scared.my little k.j. was just a baby!The same wonderful Dr cared for me again,it was a girl this time,so we opted for a repeat c-section and tubes tied,this was the dream family so many wanted.She was born blue.Problems,rushed away from me as I lay there tubes being tied,cut,and burned.Turns out a undiagnosed heart condition that couldn't be picked up on a routine ultrasound,only on a in depth ultrasound they use for families with a history of heart problems.Emily Anne lived for 4 months and had 3 heart surgeries.We mortgaged our home to pay the half million in uncovered expenses.She has her 3rd and final operation at Mayo Clinic.I remember a cold chill going through my body and I looked at Kevin and said "somethings wrong with Emily"right then the Dr's came around the corner.She had made it through the surgery but her little body couldn't come back off the heart lung by-pass machine.How many times can a heart break and mend again,for mine crumbled that day.We returned home to our bouncy 18 month old son who wanted his "baby"oh how my heart ached.Then my health spiraled down down down.First anemia,second a pre- cancerous condition found in my uterus,a hysterectomy,a vein stripping for varicose veins that were pooling blood in my legs.Thyroid condition.I.B.S.Hernia,migrane's,lupus.Then my son got mono.Pretty routine.Took him a month to recover.Then I woke up one morning,and discovered I was sick,very very sick,so sick I couldn't move my arms or legs without pain.Saw my family Dr.I too contracted mono.It took me 3 months to recover from this illness.....but what it left behind,I am still fighting...P.O.T.S. or "Postural Orthostatic Tachycardia Syndrome",a rare heart condition that Dr's do not know much about.

Nausea is NOT a girls best friend!

Well,to cut to the chase in the article today,Nausea is BAD.You know in my first article I was explaining how my family Dr sent me to a Neurologist.He was a great guy,I would have loved to have shared a bottle of wine with him discussing POTS,and everything he knew about it.He trained at Harvard,studied in POTS,when I first saw him he told me I was a text book case of POTS,and there was a clinical study going on in Boston that I would probably get in to.Angels singing and bells chiming in my head!This was it!I would get help!Nope,it didnt happen.I didn't "qualify" for the case study in Boston.The air was slowly let out of my balloon of happiness as one thing or another dragged this illness forward with no diagnosis by him,and no treatment for me other than salt tablets!Salt Tablets helped a little,they raise blood pressure by raising blood volume,and then heart rate drops.It worked....and I gained about 35 pounds!So Finally I layed it on the line with him because I was determined to get some medicine.I waited 6 months to get into a Neurologist at Barnes/Washington University In St Louis Missouri.13 tubes of blood,a EMG,And nerve conduction study later(I will discuss this further later)and 2 weeks later,I an on a wonder drug called"propranolol"My heart is breezing along at a pleasant 72 b.p.m. as opposed to 155.I can breathe with no shortness of breathe.I can do more...BUT the Nausea is now this girls new best friend.Seems to be much worse in the afternoon when all I can do is lay on the bed with a heating pad clutched to my stomach,like a life preserver clutched to someone flailing in the water.I called my wonderful family Dr,Who has been fantastic through all of this to ask if I could get some medicine for the nausea.He said to contact the Neurologist,who then told me I must wait for my appt with the Cardiologist who will be monitoring my heart and blood pressure,before any further medicine will be given.I have to wait??I am crying on the floor in my mind like a 4 year old who can't get the toy they so desperately want.Nausea.....until I see my New Dr,is a girls best friend.:o(

Insomnia!

The title reveals it all right?I have been tossing and turning in bed for 4 hours now and I probably acquired one hours worth of sleep.Quite upsetting to someone who used to sleep like a baby.Big sigh.Well,since I can't sleep,I thought I'd take advatage of this quiet house to write.

POTS is really a mystery illness.In the United States there are very very few Dr's who a) are familiar with the term ,and b)know how to treat it.I got mono almost two years ago from my son,not sure how,I could have drank out of his cup,anyway, I GOT SICK.So sick I was dragging my legs to walk,so weak that pulling the covers up over my body in bed wore me out.My wonderful Family Doctor Diagnosed me,and the road through hell began.I couldn't work,I couldn't do anything I was so ill.I applied for FMLA at work,which bought me a little time as a safety net,but not long.I also noticed new symptoms starting that I had never had before.Electrical jolts in my arms and legs,and even my butt!lol.Numbness in my hands and feet.I told all this to my family Dr,so he referred me to a Neurologist.Next time,I will pick up where I leave this story off.

Well,today is certainly better than last night.I went to bed at 5:30,put my eye mask on,pulled the covers over my head and prayed for the waves of nausea to pass me by.As a sufferer of POTS(Postural Orthostatic Tachycardia Syndrome) there are multiple daily maladies that come into play.The biggest for me is getting up from a sitting or a laying position.I sort of feel like Alice must have when she went down the rabbit hole!The room swims and my heart does double time.I got really sick about 2 years ago when I got mono,since then my life has sort of spiraled out of control.Enough for today's posting.Tomorrow I will tell you more on how I came to be(hehe) a POT head.