DISCLAIMER:

This blog does include some educational information about POTS (Postural Orthostatic Tachycardia Syndrome). However, it primarily consists of my thoughts, opinions, and personal experiences with this chronic disease. As someone who struggles with this disease daily, I am in no way attempting to minimize the seriousness of this chronic illness. With that being said, I would like to forewarn all readers that this blog does focus on the humorous stories that have occurred during all of the medical testing leading up to the diagnosis of POTS. I would also like to point out that I am in no way attempting to discredit any of the medical professionals I have worked with. They have all been wonderful and very helpful. I am simply pointing out just how difficult it is to diagnose POTS and the numerous ways it can be mis-diagnosed. If you do not find this site to be helpful, humorous, or hilarious, then please seek one of the other sites that is more fitting for you. I've personally never been a big fan of hate mail. Thanks and enjoy!

Wednesday, September 12, 2012

***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 14th 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. 




***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.***

Monday, September 3, 2012

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…