Monday, February 21, 2011

Week from Hell

Well,I didn't think I would make it,but I survived one of the worst weeks I have had in a hell of a long time.Seemed like the week took forever to get by.My heart has been aching,not to mention I think I used 3 boxes of kleenex up!Anyway,the point here beingmis that,I'm a little banged up,but I made it,thanks to my great friends.You all know who you are,and one in particular,who is amazing in my book.No judging,no blowing me off,just a lot of listening,and support.All of you helped get me here.Thanks so much.

So,now we are focusing on the BIG Branson"DanceMakers' competition for Willow.She is in two different dance numbers,and I'm sure the competition will be stiff.On another note,we get to stay at the "Chateau on the Lakes" resort,which looks pretty swanky!I will be sure to take some pics,the view looks breathtaking.Mom is coming with me,Thank God!!We are leaving Friday at noon,and will be home Sunday night.I am taking the laptop.Us parents are going to have a LOT of downtime,since when the girls are not in competition,they will be in dance classes.Willow is going to be tired out come Sunday night.;o) She will be great I know,that girl can shake her tail feathers,and everything else too.

As for me,I woke up today feeling pretty dizzy,and groggy,and sort of out of it,the kids are home since it's a school hoilday,but I'm trying to stay down on the couch as much as I can.I havent felt like this in a long time,sort of like I'm drunk,my balance is off..just not feeling good.Lots of aches lately.I am continuing to do my daily Yoga stretching,it does make me feel good,and I know its good for my body.

Not much new to report.I see my family dr tomorow for a follow up on my meds.Hope that appt goes well.I have been in such a state this past week,I dont know how I will be in his office.

TTFN,will update after Branson.....cant wait to see my baby rock out!Woo hoo!

Monday, January 24, 2011

A Brief Update.

Today's not a feel good kind of day for me,so I'm going to try to keep this short and sweet.Last week was my disability hearing before a Judge.I was so scared going into it.He was such a kind and compassionate man!After my hearing he asked to speak with my lawyer.I waited in the hall.My lawyer came out a few moments later,and said :"This very rarely ever happens,but the Judge told me to tell you he was ruling in your favor,and to tell you you are a warrior"I just started crying.You hear about so many people getting disability that don't need it,finally the system works for someone who does need it!I still have to wait for the official ruling to come in the mail,but finally that chapter of my life is over!
Next we had Willows birthday on Thursday.We had spaghetti and cake.We decorated the house,and all the girls wore tiaras!Her party was Saturday,at the local roller rink.She had  some friends,and her sweetie"Nathan" and a fun time was had by all.I never realized how much energy 7 year old's have!Then her best friend Keeley spent the night and we had giggling in the house until well after 1:00 am.I tried to re-coop yesterday but the house was just too loud.Julia,our guest from South Korea will be leaving to go home this Sunday.I will miss her greatly.I am sure it will be awhile before we see each other again.I know she is going to be a success in whatever she does in life.
Thats all for now,the kids have left for school,I'm taking a shower and hopping into a warm bed.

Monday, January 17, 2011

Whats new?

To start with,a big shout out to my very dear BFF,"Fruit".I know you are going through a down time right now,and I am thinking of you every second of the day.I know the way you are feeling,and its a horrible way to feel.I don't know what I can say to make things better for you,except that things will get  better.A year ago was the darkest time in my life,and then I found Face Book,and made so many new friends,including you,that helped pull me out of the pit I was in.Its even harder when on top of being in a pit,you are physically not feeling well,or strong.Its hard to want to do anything.Except Sleep.Anyway,I am here for you,and thinking of you,and sending you my love.

As for me,I am making progress on packing away all these beautiful decorations.Everything is put away now except my 9 1/2 foot tree that is covered with over 1000 lights and hundreds of ornaments....This is going to be the hardest job to do.I just get my strength back,and poof,taking that tree down is going to do me in.I plan on attacking it through this week,and having it down by weeks end.

Tomorrow is a busy day,I see the Hematologist to check on my anemia,and tomorrow afternoon is my disabilty hearing.I pray all goes well.I cant believe its finally my turn for court.I will update after!~

Monday, January 3, 2011

The New Year

Happy New Year everyone.As I said in my last blog update I am going to be better about writing and keeping my blog updated in 2011.I have high expectations for this year.It has to be a better year than 2010,it seems that I spent most of 2010 sick and trying to get a correct diagnosis for my illnesses.Instead of the usual resolutions I always make,such as exercise more,lose weight,which are great,don't get me wrong.This year,I have decided its more than just my physical appearance that needs to be taken care of.This year I am working on the inner Julie.My goals for 2011 include,learning more patience,with myself and with my family.Not to fly off the handle so easily.Not to sweat the small stuff.Enjoy the time I'm spending with my kids,even if I am watching the Disney channel with Willow.More "carpe diem";Seize the day,and enjoying it.More smiles,More laughing,less crying if I can help it.Trying to get to church more.Going to communion just makes me feel peaceful inside.Not going to freak over a little bit of dust.I am a good housekeeper,and I am doing very well at keeping my house clean despite chronic and debilitating health conditions.I am going to be more optimistic,be thankful for every new day I am given.My disability hearing is Jan 18th.I hope I have an understanding judge,who understands dysautonomia,pots,and inappropriate sinus tachycardia,Premature ventricular contractions,along with fibromyalgia,lupus,migraines,irritable bowel syndrome,g.e.r.d,and everything else I deal with.I hope the hearing goes well.Optimisim is my new priority,and I hope I can make those around me feel good too.O.K...enough rambling for today....Thanks for reading,and listening.<3

Friday, December 24, 2010

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

Monday, November 15, 2010

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,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 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!~

Friday, November 5, 2010

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!