Video from the trip

Just a short lil video from the trip.  Nothing was recorded in the hospital as I wanted to respect the privacy of the people in it. 

 

While I was away I got something new

We all know how much POTs sucks.  In March I had an internal heart monitor put in.  I posted about it in a a previous blog entry.  Well it did its thing and showed that my heart stops a few times.  It was then recommended that I try this med that must be given to me via injections.  I hate needles.  I hate meds that require 2 to 3 times a day injections.   I manage to give MYSELF injections but the pain was just too much.  The med was called octreotide.  

Dr. Grubb was consulted right away about the pain and since we had little hope that I meds would help me anyways (I had gastric bypass surgery) we proceeded to go with a pacemaker.  I had said pacemaker put in on Tuesday.  I was sent home yesterday.  Words can’t explain the thoughts going through my mind right now.  I’m just praying that it helps.  I’m praying that someone else reads this blog and it helps them.   

This is now apart of me. http://www.eplabdigest.com/BIOTRONIK-Launches-Evia-Pacemaker-Series

 

I’ll post more later. 

<3 Krista

Where does time fly when you aren’t having fun?

 

Yeah it has been a while since I posted.  I know.  Sadly this past week we lost my husband’s grandmother.   This loss has made me do a lot of thinking and how I really need to at least get an updated will and make decisions on how I want my body to be treated after I’m gone.  Ok sorry to be depressing there for a moment. 

Let’s move onto something better.. I have an appt with Dr. Grubb tomorrow.  Apparently that 12000 dollar piece of equipment they put in has been sending data that he’s not happy with.  So I have an appt to see exactly what that is.  I’ll let you know when I know more.  Sadly due to the fact that my husband has been off for so long we won’t be staying in Toledo too long.   I really need a vacation.  Hey Disney!  Want to send a family of 4 to your resort for free? ;)  Great PR.  Mom has chronic illness.  You’d look like a saint! lol

Speaking of my children.  They are my world.  However,  they are on summer vacation.  It makes me miss “me” time.  Sure call me a bad mom but sometimes mom needs some peace and quiet.   Sadly while I was in the hospital a couple weeks ago I missed them so much that I convinced my doctor to let me go home so I could hear their wildness. 

I’m very proud of Hunter.  Today marks his last baseball game.  He’s stuck through it all season and this is his first season of playing baseball.  I’ve seen a big improvement.  Enough that I know with lots of help he’ll be pretty good in the next year or two.  Plus during his last day of school he was the ONLY kid in 4th grade to receive special certificates for his achievements.  His teacher told me she’s never seen a kid with so many goals and stick to each of them.  He is really gifted.  I wish we had an actual “gifted” school nearby but I’m thankful that Northwest has a gifted class for him. 

And onto my other sweetie.  Ian had a lot of problems reading at the beginning of his year.  This kid now picks up books and reads almost anything.  He reads words I had no clue he could.  He’s also not hard to get to read.  His brother hates to read.  Plus he’s still enjoying cub scouts and just got signed up for tag football.  I think he’ll do great!

So that’s all I’m going to post for now.  I am going to start posting more.  If anything about my craft projects in between the important stuff.  Crafts seriously save my sanity.  :)

Until next time, Krista

Technorati Tags: Children,POTS,Dysautonomia,internal Heart monitor,Columbus Ohio Zoo,death,family

Not your typical artist.

I’m always saying how with having a chronic illness, like POTS, EDS, or any other ones that might exist, just how important it is to have hobbies to help keep your mind off of it. 

I started getting back into scrapbooking.  Only thing that sucks is that I’ve had to buy all brand new stuff because I had pretty much cleared out my stash.  So I’m slowly rebuilding.   I wanted to post some of the things I’ve worked on lately.

Enjoy!

 

 

 

These two pictures are of a tag that I recently made to send to a friend.

 

 

This is a mini scrapbook that I made for my mother on Mother’s day. The first one is just the card that went with it.  :)

I made the red flower!

 

And this last picture is another tag that I made for another friend. 

 

Feel free to leave comments or email me anytime!

Thanks for stopping by,

Kris

It's been a few weeks eh?

I made a video of my weight loss journey. I thought I'd share it with you.

Enjoy,
Kris

Make an on-line slideshow at www.OneTrueMedia.com

Is April really that close to being over?

It seems like just yesterday I was getting my internal heart monitor put in.  Its still there.  I don’t know if it has picked up anything but I do know it sends lots of information based upon the time it takes to transmit.  So we shall see.

This month has been a month of very little energy.  I filed for disability and I still have to get them some paperwork before they can process it.  I do expect to be denied.  I do expect to get a lawyer.  I do expect that I WILL NOT give up until I get it.  I simply can’t work.  I can’t even last an hour out of bed most of the time.  Its hard for me to accept but it is what it is.

About a week ago I did manage to pull myself outside to take some pictures of the sunset.  I hope you enjoy them.

 

Oh yeah I forgot!  I got to deal with my first bought of low blood sugar post gastric by-pass surgery.   I hate this!

 

Technorati Tags: april,pots,heart monitor,energy,reactive hypoglycemia,low blood sugar

I create!

Or so I try anyhow.  I decided to make some silk lollipop flowers last night.  Here is how it turned out:

 

And

Not bad for a first try.

This is how I keep myself from thinking about all the challenges that I have.  It’s my sanity. 

 

So what do YOU do?

Technorati Tags: silk flowers,crafts,scrapbook

Finding purpose when you can’t leave the bedroom!

 

One of the many things that comes with dysautonomia is the incredible unpredictability of how it affects you daily.  It’s often hard to get out of bed yet to even consider holding a full time job.  Nothing more can make you feel useless or like a failure than not being able to do what “normal” humans do everyday. 

I’d love to consider going back to school to get my degree in photography but that is seriously impossible.  Sitting and standing makes my heart beat like I’m running a marathon.  This causes exhaustion beyond belief.  Plus driving 30 minutes to school everyday would wear me out alone.  Oh and there is that little bit that also stops me called money! 

So what does one do with POTS? Here are some suggestions to help you get through the day!

• Find a hobby! – this can be very good for you when you are feeling stressed.  (I am currently getting into scrap books, again)
• Start a blog – Why start a blog when there are so many out there? Well it gives you a place to not only let your thoughts out but it can help spread the word about whatever you are going through.  This is very good for dysautonomia/Pots patients because so little is out there and it is great to find someone who has something in common with you!
• Take some free online courses – Google is a great place to start to find these classes.  Many universities (even MIT!), libraries, and organizations have free courses on a TON of subjects.
• Read a book -  Yes read a book! There are tons of ebooks online not to mention Google books has some completely on their site.
• Get some fresh air – Even if you aren’t feeling your greatest it’s always good to step outside for some fresh air.  Plus if it is sunny out then you can get some vitamin D.  Something many people are low in.
• Take a shower or bubble bath – Not only can you feel like you are being pampered but it is amazing what this can do for your mood.

In the end it’s all about finding a way to make you feel like you can still do something yet in a way that your body can handle it.  Sure POTS can go into a remission like state but who knows when that will be and if it will happen to you.  Finding purpose helps you stay sane and relaxed.

Technorati Tags: POTS,Dysautonomia,dealing with a Chronic Illness

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.

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.

For she has redlight eyes. No not really.

 

View Full Album

 

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

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 @ gmail.com

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

“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.

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)

Technorati Tags: marriage

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

Technorati Tags: POTS,surgery,loop recorder,Toledo,Dr. Grubb,gastric bypass,seizures,copper

Symptoms of POTS

I realize that I said I would get this done a couple weeks ago but between snow days and POTs being very active it’s been a bit hard. These are just my symptoms and I want to advise that I am not a doctor nor can I give you medical advice.  However, if you are noticing that you are having these as well then I would recommend writing a list and taking it to your doctor.  If they just shrug it off then you need to find another doctor.

My symptoms are:

• Fainting or Near fainting (also known as syncope)
• Light headed
• Weakness
• Heart Palpitations (these often feel like flutters)
• Vision issues
• Cognitive Impairment (this is a BIG one for me. )
• Chest pain (if you have this call your doctor or go to an ER)
• Heat/Cold intolerances
• Tremors (sometimes are mistaken for seizures when they aren’t)
• Headaches (I have these a lot and they are sever after falls)
• Sleep problems/Insomnia
• Fatigue (This is never ending for me.)
• Gastro issues (Usually when you’ve ate recently)
• Exercise intolerance (Not from being lazy!!!)
• Anxiety
• Blood pooling (I notice it most when my feet are red and burning.)
• Low blood pressure (not everyone has this.  Some are high)
• Cold hands, feet, and nose. (All of the time for me.)
• Breathing troubles (Often mistaken for asthma)
• Noise sensitivity (Not good when you have kids like I do.)
• Light sensitivity
• Problems with balance
• Chemical sensitivities (Melatonin is one for me.)
• Feeling full quickly (after just a couple bites)
• Easily over stimulated.
• Swollen lymph nodes
• Feeling of being detached from your surroundings.

Again these are just some of mine.  I’m sure there are more that I just can’t think of right now.  See I do have cognitive impairment! ;) Again, self diagnosis doesn’t help you any.  If you suspect you might have POTS/Dysautonomia then please see a doctor.  Find one that will listen to you and is open to the suggestion of what you feel might be wrong.

So what type of symptoms do you have?  Feel free to share in the comments or email me at bangingpots @ gmail.com 

Legalities of a blog

Blog known as Banging Pots by Krista Cable or just Kris is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Because people like to sometimes share information off of blogs to help educate the masses as I am trying to do, I want it to be made aware that everything on this blog unless noted otherwise is property of me, myself, and I alone. If you are going to borrow any of it please email me for my permission first. I will take anyone to court who does otherwise.

Thanks!

Man I need to just say...

I swear I'll post some more this week. We've had a lot of snow so it's been a little bit crazy here at home. I should be able to get my symptoms post up without fail tomorrow. I do want to share something right now.

Today I am filled with feelings that I hate. They rang from frustration to feeling like a failure. You see today is Valentine's day. I wanted to take my kids to watch a movie as their gift. While getting ready I was feeling really bad. Next thing I know I'm shaking (tremors). They were pretty bad. After discussing things with my husband we decided to offer them a rain check and another gift.

It is very hard to not feel like a crappy mother when you can't do the simplest of things for your children. All I want to do is let them have a normal childhood and not be affected by POTS like it is affecting me. Not being able to do things like this makes me feel like I've "dropped the ball" on motherhood or that I somehow can't even be a parent. I just want one day where I am normal. Where I feel like all the other moms in the world.

I'm sorry this sounds depressing but let's face it. POTS isn't a walk in the garden nor is it a trip over the rainbow.

Sorry that I'm late..

I know that I had promised a few people I would try to post in the last day or two. I obviously didn't get the chance because I had to go have needles stabbed into me. Really. Since my POTS has been hell lately we decided to do some IV fluid therapy. It's almost always works for me. I can safely say this time it did not.

Mentally my brain function is zero. I'm exhausted. And too tired to walk or anything. Not good for a lady who spends the days home alone while her husband and kids are out for their daily duties. So in the meantime I will pretend to be talking to people on here. Aren't you lucky!!!

Again I am also open to answering questions. You can post them here or email me. I should probably get an email address for this blog.... let me do that right quick!

bangingpots@gmail.com


I will of course answer them on here unless you want me to not do so. If I do answer it, give me a name to list the author by. Otherwise it will be just listed by your first name.

Well time to go work on yet another informative post about POTS. I'll try to work on that symptoms post.

See ya soon!
Kris :)

The view from down here..

In the past week I manage to come down with something. Who knows if it was anything or just the illness(POTS)having yet more control in my life. Either way there were at least 3 days that I pretty much slept non-stop in the past week. It seems the fatigue is winning the battle.

This all feel at a really bad time. I was suppose to go for a trip to Toledo. Up there is one of the best doctors for dealing with this syndrome. The man is Dr. Grubb. If you Google his name you'll find lots of studies that mention him. So now my trip is rescheduled for the end of February. I was really sad when they first mention that they didn't have an opening until April.

So now we are caught up to today. Today has been well.. spent in bed. I'm exhausted. I have absolutely no idea how I'll make it to town tomorrow for the last of my cardiac rehab. This was prescribed as a way to help with the POTS. I laugh at this because I agree at first it probably was helping. However, now that it's harder and they push more, I feel this might be causing a bit of a set back as well.

So tomorrow I will work on doing some educational post. I am also not proof reading this tonight. If you have POTS you know how mental clarity is not a strong suite of ours. Feel free to ask any questions. I'll also try to make up my "symptom" list and some of the things that I've tried so far.

Visit again soon!

Help I've fallen and I can't get up!

Hi, Allow me to introduce myself! You can call me Kris, since all my friends do and well I hope we could call each other friends since I'm about to share my life to you.

Let's rewind to this time last year. I was laying on the floor in my bathroom and unconscious. I woke up not aware of my surroundings. The feeling that I experienced when I woke up was one like I had never felt before. I imagined it was a seizure, mainly because of the desire to want to sleep and the accident that had happen, but was it? I manage to compose myself enough to clean myself up and hit redial to call my husband who then rushed home to rush me to the local emergency room.

I pretty much did nothing but sleep at this point. I was drained of any energy that I had within me. The emergency room was something I remember very little of because of my exhaustion. I do know that they removed any clothing that I had on and had me hooked up to so many machines. Not to mention the endless list of blood work and testing they performed. They were sure that I had a seizure due to the fact that I had a high prolactin level. I was then admitted and that began one of many visits and stays in the hospital since.

Nobody knew what was wrong with me. Months before I had complained multiple times to doctors about dizziness. I also started to notice how standing in the shower wore me out due to an increased heart rate. Being that I had just had a life altering surgery about 8 months before this all started to go south and fast, I just contributed it this and went on about my way. Oh and that surgery was gastric bypass surgery and it wasn't a seizure! It was a tremor triggered by my heart as it tried to return blood to my heart and brain.

Between and during the multiple visits I researched and found out that I had postural orthostatic tachycardia syndrome. This mad and crazy long syndrome shall now be known as POTS in my blog. I was diagnosed with it after I convinced my family doctor and a specialist to test me for this. Bingo!


So this is my journey and my story. It's going to be a roller coaster of madness that I hope helps someone along the way as well as spreading awareness. Here we go...