Friday, March 19, 2010

When I’m on my own.

During the day I am home alone.  My kids are at school and my husband is trying to maintain his job.  I am very much not alone.

blue and gold plus feb 2010 238

For this is Purrl.  My white cat with half blue and half normal cat eye colors.  No she’s not a kitten.  She’s almost two.  No clue about the eyes but she is unique beyond those eyes.

blue and gold plus feb 2010 207

For she has redlight eyes. No not really.



She does like to grab her butt while she cleans herself.  It makes me laugh.  It is the simple things in life…

Wednesday, March 17, 2010

A little under the weather.

I just wanted to post a brief update. I will try to work on some post for this week/weekend but I felt I owed you an update. As some of you may or may not know I have two amazing boys. While their mommy is sick, it never slows them down. I try to save my energy for them as much as I can. Well both of them have birthdays in March. My youngest had his recently on the 11th. (Happy Birthday my little Firecracker!) My oldest has his on the 22nd. While they are still willing to share, we have a huge party for their friends and family in between. Sunday we had the party. I was exhausted and wore down. Friday before the party I spent the day in the ER. That experience will be a forth coming post pending I don't file a lawsuit.

So back to where I was...Friday in the ER with a fever and problems breathing. I figured it was the flu but my husband pushed for me to get checked out. He was right, it wasn't the flu but pneumonia. I had another checkup today with my PCP and he added 4x daily breathing treatments and yet another antibiotic. So I am now on two of those.

We need me to get better. I am having that implantable heart monitor put in at the end of this month. I can't be ill when I have my blood work done. So please understand when I say I do miss you guys and will try to write a post soon, but my brain cells are seriously just not here right now. Not that they ever were! PoTS sucks like that.

In the meantime, if you have any questions for me please post a comment here or send me an email at bangingpots @

Hope everyone is feeling well and you have much more energy than I! <3

Tuesday, March 9, 2010

“in sickness and in health”


I still remember the day that my husband asked me to be his wife.  I still remember walking down the aisle as we eloped without our friends and family knowing.  I still remember my vows and those words, “in sickness and in health.”  Being twenty and some odd years you never think of the sickness part of your vows.  You never wonder if your mate will be able to stay by your side as well. 

When I started having syncope(fainting) episodes we pretty much thought it was nothing.  Off and on through my life I had these but not as bad as it was becoming.  So much that last year I spent my youngest son’s birthday in the hospital.  I never in my life had I imagined that I could end up with something so chronic that it could change my world as much as this has.

So how does POTS/Dysautonomia affect a marriage?  In more ways than I care to admit to but will try to for educational reasons.  There has been a huge strain on our marriage.  I can’t work at all.  We all know the saying that money makes the world go ‘round.  I can honestly say money makes my world turn upside down.  My husband works a full-time job and 2 part-time jobs.  I feel very guilty for not holding up my end of the deal.  For not being able to work and most of all I also feel terrible because I can’t always keep up with the housework as well.

rogerandI My husband and I at a wedding in 2009

There are days, well a lot of days, where getting out of bed to go sit on the toilet is even hard to do.  With the huge number of appointments that I have and the syncope episodes this has also caused a big strain on my husband’s full-time job.  Bosses don’t always understand nor do they care.  They have a bottom line and that’s really all that matters.  This is one of those moments when I wished I lived in a country that would pay for family medical leave.  My doctor has offered to write my husband off for family medical leave but our bank account is just not padded enough to allow this.

With the daily issues of having enough energy just to get out of bed has also come with the inability for me to clean my house on a daily basis as required sometimes when you have children.  I’ve always wanted to be the one to help take care and have a 50/50 household.  This is no longer possible. 

POTs has a way of changing your world and those around you.  It has a way of making you sometimes doubt if you’d be better off in a nursing home during those bad days.  So when I say it’s changed my marriage  a big way, I’m not even touching the surface. 

Do you know someone with a chronic illness that has changed their quality of living?  Visit them so they know that they are not alone. Play with their children so the impact can be just a little bit easier for them.  Push for the government to make it so that medical leave is a paid benefit.  And lastly I ask that your pray for the marriage that has a huge strain on it.   They need it.

24 And let us consider one another in order to stir up love and good works, 25 not forsaking the assembling of ourselves together, as is the manner of some, but exhorting one another, and so much the more as you see the Day approaching.

Hebrews 10:24-25 (New King James Version)

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Tuesday, March 2, 2010

We aren’t in Oz anymore!

Last week my husband and I packed off and headed north.  We were on our way to visit one of the highest regarded doctors when it comes to POTS/Dysautonomia.  As we drove our way through the snow I was starting to wonder if this was a bad idea.  Why not just turn around? We had every reason to.  We were experiencing white-out conditions along our way to Toledo.  NO way was I going to cancel!

Most people who have POTS have heard of Dr. Grubb in some form or another.  Most have read his name in the studies and websites with information about this annoying syndrome.  Some have even read his name on forums that have other members who had appts with him.  The one thing that these people all know is how hard it is to get into this doctor.  I was told 6 months to a year wait(could possibly be longer).  I consider myself lucky in this aspect.  I was able to meet his assistant within 3 months and had an appointment with him just a month later. That appointment would be rescheduled due to me not doing well. 

I will tell you the thing that bothered me at first about this appointment was the time I had to wait in the lobby before I saw him.  I’ll be honest and say it was two hours.  I will also tell you I’d do it again in a heartbeat.  Dr. Grubb is not like any doctor you’ll ever meet.  He doesn’t let time have any say in the care he gives you. I think if I needed 12 hrs of his time that he would’ve gave it to me.  The care and attention I was given was greatly appreciated.  He talks to you honestly and in a caring way.  He makes you feel like a friend and not just a patient.  He even shared things with me about his personal life that I have never experienced with another doctor.

During this appointment I mentioned to him about the blackout periods that I’ve had where I’ve been out for hours at a time.  This obviously concerned him as much as it did me.   It was then decided that we should implant a loop recorder under my skin to see if my heart flat lines during this time.  He has had numerous patients with this problem.  I was also giving a prescription to try another medication that I’ve been on once before but this time at a different dose.



We also discussed how my gastric bypass surgery is causing most of the medications I take to not even be absorbed.  We talked about how copper deficiencies have been known to cause seizures in gastric bypass patients as well.  Not to mention the huge increase amount of gastric bypass patients he now sees.  This surgery has been known to cause POTS.  While I’ve had it all my life the surgery did cause stress on my body and has thrown it back out of the “remission” of dysautonomia.

Upon the end of my visit I was told that the hospital would contact my insurance first to make sure they would cover it since they are an university hospital.  Once this was done they’d let me know when my surgery is.  My surgery is now scheduled for the end of this month.  Also the doctor was very kind and mailed me a book called: “When Bad things Happen to Good People.”  He also sent me a lot of information about my condition and other works that will be of use to me.  I am very pleased with the care that I have received from Dr. Grubb and his staff.  He really is a special doctor and the wait to get into him is very worth it.  I look forward to seeing how this testing turns out in the end. 


For more information about the Reveal DX please click here. Click here for an overview of POTS