W.Y.S.I.W.Y.G. - What You See Is What You Get
Once upon a time this is what I used to describe myself with one word. I do remember a time when it held true. What you saw on my outside was exactly what you got! But times have changed. The last several years to be exact. I remember the day when I first felt really strange. I had a heaviness in my chest and felt absolutely horrible! It was during February of 2004 and I was pregnant with my first child. Up until this day everything had been going great with my pregnancy. I felt fine except for horrible morning sickness, or as I called it all day and night sickness! I'd gotten up and gotten dressed for work just like every other day but on this day I didn't feel well. I felt so bad that I thought maybe I have a really bad cold or the flu. I went to work but my headache got worse, the heaviness in my chest got worse, and so I called my doctor and told them my symptoms and the nurse said to come in immediately. I told my boss and left work headed to see my OB. Once I was seen by the nurse she had a look of concern and asked if I had a heart problem. I told them no. Apparently my heart rate was very high, even for during a pregnancy. What I had been thinking was related to pregnancy was most assuredly not! I had never been pregnant before, so how was I to know that any moment you stood your chest wasn't supposed to feel all a-flutter inside and heavy? My blood pressure was also very high so I was put on immediate bedrest and as my heart rate remained high, I was given a medication to help.
I remained on bedrest until April 1, 2004 on the day that I had an emergency c-section due to my elevated heart rate and blood pressure. I followed up with my family doctor a few weeks after having my beautiful little girl and after a routine EKG and thyroid test she sent me on my way with lose a few pounds to help your blood pressure and have a nice day. It never even crossed my mind that I should probably get a second oppinion since after all I was still young and had very little experience in going to the doctor on my own. I lost some weight but still had trouble with my heart rate, although eventually my blood pressure came down enough that I could come off the medication I had been put back on after the pregnancy.
I continued to have trouble with my heart rate staying elevated, but since I was told that I was fine, I chose to ignore it. I would tell myself, "You are just tired because you have a new baby!" This turned into you are tired because you have a toddler. When my first child, Serena, was 3 and 1/2 we had our second child. This pregnancy was the same as before. I was find and suddenly my blood pressure would spike close to the end of the pregnancy. Although this time I had blackouts as well. And once again I told myself that it was due to the weather as it was very hot that summer. And once again, the doctors didn't seem alarmed by them. I had Aleah by emergency c-section on September 21, 2007. And just like the first pregnancy, instead of delivering helping my blood pressure to drop, it remained up for several months and I was once again placed on medication to help lower it. I also had problems with dehydration during my first pregnancy, so this time around I drank so much water I thought I would float away. I literally carried 2 bottles with me everywhere I went and just kept refilling them. Yet still I had ended up dehydrated.
I got home with my new baby and my toddler and realized that this time around it was much more difficult! I would simply say to myself that I had a baby and a toddler and that was reason enough to be tired all the time. But as I look back I see that I was more tired than I honestly should have been both times! I know other moms who have small children, and are able to continue everyday normal life things. But I was becoming tired just taking a shower! As I look back now, I honestly should have made a follow-up and gotten checked, but like they say; "Hindsight is 20/20". During the following summer of 2008 it was much more difficult to tolerate the heat. I would tire much more quickly than normal and also had a blackout or two.
It is now September 18, 2009. It has been 5 years and 7 months since my high heart rate first became noticible. I was diagnosed with dysautonomia in June of this year. Looking back now, my husband and I have noticed where over the last 5+ years I have slowly began to slow down. I have slowly and unknowingly stopped doing many things I love to do. And I know that many will say that once you have kids, this happens! But it hasn't been the case for me. The things I love doing aren't things you can't do with children! But I'm going to go more into that in the next blog. I just wanted to give a short history in this one.
But before I go, if you are interested here are some websites that are great for those of us with Dysautonomia and even those who are related to or friends with someone who also has Dys. I've had the most luck finding great information just with Google. Others recommend using About.com. But there are some websites and groups where you can read personal journeys and ask questions to those who deal with Dys. I'll post a few today and if I stumble across any more I'll post them as I continue this blog. Until then, have an awesome day!
www.12morepages.com Great blog written by a young man who has Dysautonomia.
www.facebook.com (in the search box in the upper right hand of the screen type "Dysautonomia Awareness" and it's a great group that I belong to.
www.dynakids.org This is a great site to get basic information on Dysautonomia. There are also answers to questions about kids who suffer from Dysautonomia.