My journey so far...

So I figured that in order to be able to write about what is going on in my life, especially in regards to my diagnosis and the treatments that have been tried so far, I need to give some background. I hesitated to write this as I was afraid that it would be boring. However, I realized that if I start talking about things that I am trying or doing without the previous explanation, it would get confusing. So please bear with me here.
Although I wrote a little about my plans for this blog (almost 2 years ago, oopps), I did not fully explain my journey so far between symptoms, diagnosis, treatments or how it has affected my life. So let me begin with diagnosis and treatments, today.
As a child, I was sick often. Little things, minor things mostly, except I constantly had strep throat causing me to have my tonsils removed at 10 years old. I was an active child, participating in a baton corps that also did some dance. I was in parades and competitions for 3 or 4 years. After moving away, in the summer before 8th grade, I did not join another baton group but instead went to cheerleading. I cheered for 3 years, and when I didn't make the squad my junior year, I switched to track. In baton, I occasionally had issues with being light headed, but it was usually attributed to dehydration (I was terrible at drinking, especially water). Then in High School, my light-headedness turned into syncopal episodes. Of course, when it happened during school, the nurse automatically thought low blood sugar and gave me cheese and orange juice. I continued to have issues, sometimes often, other times it would be months with no issues. This continued all through High School and into college. When I was told my job and my degree was at stake while in college, I started going to more specialists. I took off a quarter in college and changed my position at work. I went to several doctors and none of them could actually find a cause. The cardiologist said it was neurological and the neurologist said he thinks it's something like neuro-cardiagenic syncope, that the problem starts with the cardio system. He however, was willing to try to treat me, unlike the cardiologist. So my journey of medicine trials began. I can't even come close to remembering what all was tried, but I do remember that Depakote was helping more than anything. However, about a year after I was prescribed it, we moved to another state and I was no longer able to see the prescribing doctor. Then I got pregnant 2 weeks after the move! I was labeled high risk because I had been diagnosed and treated for Lyme's Disease right before I moved, and I had syncopal episodes. I am still known as "the girl who passed out while pregnant" at my church, even though I am on the praise team and went to the church in my teens. I delivered a healthy baby boy and about 6 months later my depression got so bad that I was hospitalized. The psychologist that was on call quickly figured out that the depression and the syncope had to be related and called in a neurologist. He did test after test for 5 months and when I mentioned my aunt, who is a nurse, knew a coworker that was diagnosed with POTS, he told me that it was something that he thought of before and was willing to test me if I wanted. July 2010, at least 10 years after my first syncope episode, I was diagnosed with POTS!!!!!! It should have been so freeing to have an answer after all those years. And at first, it was. Then I realized that this answer was only another mystery. I have tried at least a dozen medicines that are typical POTS treatments, including beta blockers. I have to admit when he mentioned that the first protocol is to increase the salt intake, I laughed. I eat so much salt, that most doctors would yell at anyone else! When I mentioned that I salt everything, including my pizza, he prescribed my salt tablet to supplement. So far every medicine given to me either had worse side effects, like one made me lethargic, or didn't help my symptoms at all. I mentioned Depakote to this new neurologist, but when he explained how bad it could be long term, I agreed not to use it. Finally in 2015, he admitted that we were past his expertise. I was very saddened, and still am, to lose his as a doctor, but thankful that he was willing to admit his limits. So I went to a larger hospital, where there is supposed to be awesome POTS specialists. The doctor I was originally scheduled to see had an emergency that she had to take a leave for an undetermined amount of time. So I was transferred to another doctor who had the tilt table test reordered and a couple others ordered. After those tests confirmed that I have POTS, the cardiologist and neurologists acted like it was no big deal and my only option was to go there 3 times a week for a minimum of 3 months for cardiac rehab. While I don't have anything against that method, I don't have the means to go there that often for that long while homeschooling my child and living over 90 mins away with one vehicle that my husband takes to work. No one was willing to work with me on finding another location. I even had one doctor tell me that since I am "young, thin and pretty" that I should be fine and will grow out of it because he doesn't have any patients over 40! UGH! Yep, I stopped wasting my time and money trying to see them for no help.
A year later, I found a new primary doctor, needed one closer to my home that wouldn't send me to a specialist for everything, like my previous one did I have POTS and he didn't understand it. This doctor so far is trying hard! As of now, only 4 months in, she has tried changing my diet to see if it could be that simple, it wasn't. She has added some supplements and vitamins because several of my levels are low. Now she is trying some new supplements and researching to have me tested for the possibility that the tick that gave me Lyme's could have given me other parasites that weren't caught. I will write another post soon explaining better what she has tried and it's results so far, but this one is getting long enough!
As I have said, I can't guarantee when I will post, but I do hope it will be better than the previous 20 month delay... Until then, feel free to tell me your story or ask for a particular topic to be covered. I'll do my best!

Well that went well

Hello again!
I can't believe that I let this blog sit for 2.5 years! OOPPS! I did not mean to do that in any way... hmmmm.... Well I am sitting here after midnight, when I should be in bed, trying to figure out how and if I should start this blog again. We see how well it went before and I wasn't e-schooling my son just yet... Now, he is in 1st grade through a virtual school using K-12 curriculum (no kick-back here). I am going to try to restart this, some days I may not have anything to say, other days I may get too busy, but we will see what happens. Hopefully, prayerfully, it will go better than the first attempt!
With that being said... The first thing that I am going to do is share my first planner printable that I created for Dysautonomia Awareness Month (October). I recently bought a Happy Planner and love it! I am slowly getting into decorating the planner and decided that I wanted to have Dysautonomia Awareness stickers for my planner. Since I didn't figure it would be easy to find with how rarely known it is, I figured I should create my own. I didn't have a clue what I was doing when I started, but who knows I may have created a template to make more printables ;)
So here is my first printable for a Happy Planner. 
Dysautonomia Awareness Stickers for Happy Planner



Free for Personal Use Only. I hope you like (some can be used without it being for Dysautonomia Awareness). Lots of turquoise as that is the awareness color.Well it is time for me to call it a night. That little boy of mine gets up early enough ;)
Thanks for checking out my new endeavor

Hello

First I want to give a little background to explain the reason for this blog. That has to start with "What is P.O.T.S.?" It also needs to explain what it has to do with me and what I plan to do. And I will apologize in advance if I seem all over the place, I'm trying to keep it "linear".

Simply put, P.O.T.S. is a autonomic dysfunction. This means that the autonomic system (your unconscious but necessary functions, such as breathing, heart beating and such) is not working properly. In my case it is my blood pressure that doesn't work correctly. Unfortunately this does not mean that the problem stops there. I will pass out because my blood pressure will drop too low, and due to these episodes my brain function is starting to diminish. I don't have the cognitive thinking that I am supposed to have anymore, and since I am only 27 I can't blame it on age. I also get very short of breath easily. I'm exhausted, depressed, anxious and physically sick in many other ways that don't seem to relate to each other, but they are common for P.O.T.S.

I have been told for a very long time that there is a reason that God has allowed me to continue to have P.O.T.S. Yes, I've gone through the "ignore-it" stage, the angry stage, the defeated stage and I am finally getting into the acceptance stage. For those that personally know me, you will see that this is NOT an easy stage for me. I am stubborn, bull-headed and a perfectionist. You may wonder what these qualities have to do with making this stage difficult for me, so let me explain. I am stubborn and bull-headed so I want things my way and my way only! If it does not fit into my plan or ideal situation I will find a way to change it! There is no changing this, no matter how much I dislike it. This is a subconscious problem, therefore I can't will it to be any different. Perfectionism is affected because it is very tough to be the "image of perfect" when you pass out while standing in front of the congregation singing in church (I've done it more times than I care to count). Perfectionism doesn't allow for forgetting that the item you are holding in your hand is called a pen (also done this, and similar, more times than I care to count). Perfection also doesn't include the inability to take care of your child for one reason or another, this was truly the hardest for me.

Shortly before being diagnosed, after dealing with the unknown for 8 years, I became pregnant with my son. I was not planning to have children, but he was still a welcome surprise for my husband and I. I ended up in the hospital for extreme depression when he was only 6 months old. The doctor couldn't believe that it was simply post-partum, or simple depression (not that any depression is simple). He really felt that it was caused by something. So he had some tests done and brought in a neurologist who had many more tests done. Four months later, we discovered that I have P.O.T.S. This is now 10 years after I first started dealing with passing out while in High School!

Now that I know that I can't work again, hard pill to swallow when I paid over $75K to earn a BFA in Interior Design and never got a chance to do anything in my field, I have more time on my hands. So I took up crocheting, and have had a blast learning from books. I have even started dabbling in pattern writing, which has been an interesting process as well (I'll get into that another time). I have just started teaching myself knitting, YouTube has been my friend on that. But the most important thing that I do with my time is raising my son. I hope and plan to homeschool him, despite my disability. I am going to use K-12 so that it will be a little easier for me, but I want to be a very large part of his schooling. He will still be involved in church and sports and other ways of socializing, but it will be a little more controlled and his curriculum will be a lot more personalized.

So I am asking you to join me on this journey. I will write about my struggles, my triumphs and other various happenings. I ask that you share your struggles, triumphs and other happenings as well. If you have something that you would like me to address, let me know and I will see what I can do.
I will try to blog often, but due to the cognitive issue, it may take me longer to address a particular topic.