***Huge Helpful Tip***

Normally I write all of my little 'Helpful Hints' on the left margin of my blog, however, I believe this one is extremely important!  So I have decided to briefly interrupt my medical stories, but will resume them tomorrow.

One of the most important things a person with POTS can do is consume a large amount of sodium.  This helps the blood vessels expand and allows the blood to flow throughout the body easier.  Now, when I say a large amount of sodium, I’m talking 3 to 5 grams per day.  That is a lot of salt!!!  For example, one package of ramen noodles has about 1,300mg of sodium.  The salt tablets I suck on have about 150mg.  My point is that it is difficult to consume that much sodium and stay hydrated at the same time.  As a result of that I have been getting IV fluids weekly for a while now.  And being that I have these awesome veins that work like an old flat empty garden hose, it makes this process quite a hassle – being stuck 3 or 4 times to find a vein…each week…that adds up over time.  My arms were pretty much starting to look like I had been shooting up heroin.  Not to mention the process last 4 to 6 hours by the time I’m done getting the two liters. 

Well, the other day, I remembered that a friend use to talk about drinking her electrolytes while she was doing track at Kansas University.  I called her to find out exactly what those electrolytes were.  Turns out, there electrolytes made by Gatorade.  The actual name is, G Series Pro Gatrolytes Electrolyte Mix.  Each packet contains 780mg of Sodium and 400mg of Potassium.  I had been drinking a lot of G2 since it is high in sodium and has fewer calories, but it also was causing cavities, which my dentist wasn’t too stoked about.  So I took this packet of Gatorlytes in to my doctor and asked him what he thought about them.  He pulled out his calculator and then told me that if I mix 4 packets with one liter of water it would be the equivalent to one liter of fluids I was receiving at the hospital.  The idea alone made me completely ecstatic.  I thought if it really works there would be no more digging on my arms each week, no more bruises, no more sitting in the hospital every week.  The next morning I tried it.  Let me tell you – it works!!!  I have been drinking these Gatorlytes for almost two weeks now and haven’t had to get IV fluids once during this time.  AND, I was able to cancel the surgery to have a port put in on the 14^th of this month!

The one difficult thing about this product is that they are actually made for elite athletes, so they aren’t sold in too many stores.  I have found it easiest to order them off Amazon or the Gatorade website.

For those booze hounds that read my blog, I know there are just a few; this actually is the perfect hangover cure.  Of course, you wouldn’t need four packets - just the one.  However, it’s always better to just say no to drugs and alcohol to begin with.  You booze you lose, kids. 

G Series Pro 02 Electrolyte Mix Gatorlytes

***The information included on this site is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her healthcare provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment.***

The Ultrasound That Made My Heart Sink to My Uterus

On the last blog I left off with just having had a Colonoscopy…the most intrusive procedure there is, or at least I thought that at the time.  But that procedure is for another day and another blog.

So I was on a high fiber diet, which was supposed to help shoot everything I eat right through me.  As you can imagine, that is not quite how it worked, which is basically the theme of every doctor appointment or procedure I have had this year.  Every time I ate something my stomach would expand…swell…bloat…get gigantic.  Call it whatever you want, but every time I ate, my stomach would get huge.  At first it was the equivalent to, let’s say, a little baby bump.  But it wasn’t long until even eating a salad would cause my stomach to appear 8 to 9 months pregnant.  I know it sounds like I am exaggerating, but I am actually not.  Sometime this week I will take a before and after picture of eating a salad so you can get an idea of what I am talking about.  Not only would my stomach become huge, but it would become very painful and I would end up vomiting.  In fact this happened so much, I started taking pregnancy tests because I could not imagine why my stomach was continuing to grow, knowing I was not consuming enough food to do so.  I mean, I knew it was almost impossible for me to be pregnant!  Apparently, based on science you have to have intercourse to become pregnant (excluding obvious procedures) and I certainly was not doing that.  But I figured, hey, it happened to the Virgin Mary and let’s face it; we all know I am pretty much as pure as she is!

 After returning to see the Ass Man (Gastroenterologist), who I never thought I would have to see again (I guess I had lost my college touch), he ordered an ultrasound.  Everybody knows these aren’t to big of deal to have done.  You pretty much just lay there and get covered in goo, which all females have experienced in some form or another, whether you admit it or not.  Plus, I had to have an ultrasound when I was about 15 years old.  The technician at the time was shaking the KY Jelly, without the lid on, and squirted me in the eye.  No, this is not a joke!  Totally true story!  Getting hit in the eye with KY Jelly before I was even sexually active definitely foreshadowed my relationships and dating life, I just didn’t realize it at that time.  I figured as long as that didn’t have again, everything was smooth sailing.

I scheduled the ultrasound about 6:30 a.m. Thursday morning so that I could get it over with and not have to take time off of work.  So I get to the appointment and at the very beginning the ultrasound technician tells me that she cannot disclose any findings and that it will all be reviewed and my primary care physician will call in a couple of days and inform me of the results.  She then covers my mid section with jelly and gets this show on the road.  Being that the majority of my mid section would experience periods of pain at different times, this took quite some time.  She had to go over my sides, part of my back and my entire front torso.  On a side note and to clarify – I have never had kids, so I have no idea how the whole ultrasound works when they are viewing a bun in the oven.  She was running the probe down my stomach over and over to get a clear picture.  She then ran the probe just past my belly button and stops…the only words she said during this entire time, “Oh my, we have a strong heart beat right there.”  Being the circumstances of what I was having the ultrasound for, that was the WORST possible statement that she could have made.  At that moment my heart literally sank all the way down to my uterus.  I looked at the technician and said to her, “Ye-ah, that is not something you should probably ever say to anyone again unless they are here because they are prego.”  I of course then started laughing so she would know that while I was seconds away from shitting myself (for the first time in weeks), I was only joking.  Shortly after that she completed the ultrasound and handed me a towel to clean off with. You know the drills ladies…in some way or another.  She then offered me another towel and at that point I responded like I had so many times before in my life, “Ahhhh.  No thanks.  I think I will just go home and take a long shower.  No offense.”  She started laughing and I left.

A couple of days later my primary physician had called.  The ultrasound came back normal for the most part.  Turns out I had a small tumor on my kidney, but it is literally so small I don’t think it really count.  I just have to get it checked again later in the year to make sure there is no growth. 

This is when the different tests just started to snowball into my life like a freaking avalanche.  About every week from here forward I would have some sort of test or blood work done for several months.  The week after the ultrasound I visited Nuclear Medicine.  From a Colonoscopy…to an ultrasound…to eating radio active baby chickens…

The Colonoscopy....What Seemed So Much Like My College Years

Each Sunday morning, I use to meet a group of women for breakfast. Yes, believe it or not, I am actually only 28 and was 27 at that time this part of the story occurred. This group of women and I would just sit, eat breakfast, and shoot the shit…literally! Somehow these, lets call them experienced…or seasoned, women would always end up directing the conversation to their bowel movements (actually the lack there of). It would drive me crazy! Contrary to this blog, I am actually a very private person. Being that I am a counselor, I am more than willing to talk about you all day. The moment the conversation is on me, I am out! I also tend to be a huge germaphobe. I do not particularly care to see, smell, hear, or taste a bodily function of any kind of anyone. You can imagine my disgust when they would bring up their bowel movements. I would always make fun of them and ask if they could refrain from talking about their bowels each time we got together.

Let me tell you – Karma is a biatch! It was not six weeks after this converstation with my "seasoned" friends the doctor had signed me up for a colonoscopy. I was devastated. Naturally, the ladies had a hay day with this.

After a few weeks of hearing the jokes, my day had come to prepare for the colonoscopy and drink the G.I. Hooch. It obviously is not really hooch, but I can not remember what the drink is called that they give you to clean out your system. I just figure G. I. Hooch is a rather fitting name being that it made everything come out of the bum the same way that regular Hooch makes everything come out of the stomach through projectile vomiting. It truly is some awful stuff! Anyone in your 20’s reading this, brace yourselves, it will be a miserable long night…as I am sure you have all experienced before – just a different type of miserable.

The next morning I woke up at the butt crack of dawn (sorry, I can’t help myself) with a colon and ass so clean you could have eaten off of it. That is neither a request or a challenge, and sorry for anyone that drew a mental picture.

So I was in the waiting room at the doctors office and I couldn't help but notice that everyone in there is about three times my age. I turned to my dad (he had been my ride) and suggested that everyone there probably thought I was actually his ride. There were a few shocked faces when the nurse called my name and I went through the door to The Land of The Ass Man (G.I. procedure room). This is where the whole situation starts to get a little hazy. I basically got hopped up (anesthesia), shit went down, and then I woke up hoping to never see any of those individuals again…..Basically, exactly like my college years.

After the colonoscopy they sent out a biopsy, which came back negative for cancer and a few other things. I can’t remember exactly what all it was sent out to test for. At that time they had diagnosed me with Diverticulosis. My non medical way of describing Diverticulosis, is this: Pockets begin to develop in the intestines, where food can get caught, which can result in infections in these pockets (Diverticulitis), and be very painful. To address this, they put me on a high fiber diet: red meat, nuts, oats, and wheat’s, all of the types of foods that are hard to digest but help push everything through the colon. This seemed pretty simple and easy to do. While I am not crazy about meat…let me be more specific…while I am not crazy about eating “animal meat”, I am a big fan of nuts, oats, and of course wheat.

Little did I know, this diet would be the trigger of many many many pregnancy tests…..

It All Started With A Rectal Exam...

Many people have asked me when I was diagnosed with POTS, started feeling sick, or realized something wasn't quite right with my health.  I don't know that there is a simple direct answer to that question, but I'm going to do my best to answer it throughout this blog entry...

So one September day, about 11 months ago, I was attempting to shovel down a sandwich in between groups sessions.  At the time I was a drug and alcohol counselor, and as anyone in that field of work knows, it is usually a hectic environment and you often eat in between appointments instead of breaks.  Anyway, halfway through my sandwich I realized it just kind of got stuck...literally....like a rock in my upper abdomen.  I thought this seemed really weird, but figured maybe it was because I ate too fast.  So I finished work and headed home.  About two days later I remember walking my dog late one night after I had gotten home from work, after we finished our walk and made it to the bottom of the stairs and I remember looking at the stair case thinking, "There is no possible way my body is going to make it up these stairs.  What the heck is going on?"  Well, I did make it up the stairs that night and into bed.  However, this feeling of exhaustion stuck with me the rest of the week.  It seemed like everyday I was able to do less and less.

...Don't worry, I'm getting to the good part...

That was the beginning of the week, by now it is Friday and I'm thinking I need to go to the doctor.  My skin was as white as a sheet, I was exhausted, I had headaches throughout the week, my stomach was still getting hard when I ate, and I was always cold.  So I ran to the doctor Friday morning before I commuted to work.  At that time I'm thinking it will be a throat swab to test for strep throat or finger prick to test for Mononucleosis, you know, the usual stuff we have all had done before.  Hah!!  Boy was I ever wrong!  Sure they checked that stuff out, but apparently there were some red flags in the family history that mixed with the stomach issues.  Next thing I know they told me to lay in the fetal position on my side.

Now ladies, you know how when you go in for your yearly pap smear and you have to mentally prepare yourself?  I mean, you know what is about to come and how the drill goes, but there is just something about having a non routine member in the area.  And men, I'm not sure how it goes for you, but I'm guessing when the doctor asks you to turn your head and cough, there's a little mental preparation that goes into it AT LEAST an hour or two before the appointment.

Well let me tell you - There was no opportunity for the mental preparation for the doctor to do the anal exam that I received that day in the doctor office.  Which by the way was completely normal...as I knew it would be since I kept insisting the problem was in my STOMACH.  I left the doctors office that day with several emotions...and as I write this...I'm still not sure what they are.  Aside from the emotions, I also left that day with an appointment scheduled for a Colonoscopy with a Gastroenterologist, suspected GERD (Gastroesophageal Reflux Disease) and recommended to take Prilosec, and a negative Mononucleosis test.

My shit starts where other peoples ends...



Blue Ribbon At The Fair???

I'm not sure if I mentioned this earlier, but there seems to be a serious lack of knowledge about POTS.  It's largely unknown to many people in the community, but also to many medical professionals.  How unknown, you ask?

Well, just a moment ago I decided I would Google Image 'POTS Awareness Blue Ribbon' so that I could put a picture of the blue ribbon on my page.  And this is one of the most simple tasks a person can complete.  You can Google Image anything and find just what you are looking for.  I would know, I'm a real sucker for this type of thing.  You wouldn't believe the types of emails my friends and coworkers have receive only to find disturbing half naked people or things.  For example: all I have to do is type 'Bunny Man' into the search engine and the picture below pops right up.  Super easy!

Anyways, back to my point...So when I type in 'POTS Awareness Blue Ribbon', one of the first pictures to pop up is this one...

Seriously???  A first prize, blue ribbon, PIG???  Nothing like a little self esteem booster with that one!  I mean sure the pigs eye lashes appear to be curled and he/she appears to have eye shadow on AND after all it did get first place...

I did find a blue ribbon, which is posted just below this comment.  The point is - There clearly needs to be a LOT more awareness raised about this disease.  If Google doesn't pull much up on the topic then there isn't enough information out there.  After all, Google has all the answers.  : )

What This Shenanigan Is All About...

Before I actually start blogging about the fun stuff, or medical mystery stories (I totally should have been on the show 'Mystery Diagnosis' by the way), I will briefly explain what POTS is.  POTS is an acronym for the disease Postural Orthostatic Tachycardia Syndrome.  You might also hear this condition referred to as Autonomic Neuropathy with Orthostatic Hypotension or Dysautonomia.  The name they stamped me with is Autonomic Neuropathy with Orthostatic Intolerance and are calling it POTS for short.

Autonomic Neuropothay is a nerve disorder that affects the involuntary body functions such as blood pressure, heart rate, digestion, and perspiration (that's why I glisten instead of sweat buckets).  The Orthostatic Intolerance part means that if I stand up too fast or for too long, I am liable to pass out just after I start getting dizzy and my vision goes black.

Below are two videos that explain POTS (I will be calling it that in the rest of my entries) much better than I am able to.  I will warn you - The first video is about 35 minutes long, however, it is very educational for those that are seeking something like that.  The second video is only about 5 minutes long and more of a humorous cartoon.  Enjoy whichever floats your boat!

POTS Documentary

What The Hell Is POTS??