Thursday, June 21, 2012

As Blogging Goes With Good Intentions When You Don't Feel Good......

My whole intent of starting this blog was to help educate myself, my family and my friends and maybe even some healthcare professionals about Ehlers Danlos syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS) and several other things that I deal with as a result of Ehlers Danlos. If you don't already know, EDS causes lots and lots of pain 24/7. You can never escape the pain and many times I have major brain fog and I just can't think well and words seem to be missing from inside my head. EDS is something that is life altering because of the pain, for starters, but frankly I am used to a certain level of pain and daily that pain level goes up with dislocations and subluxating of my joints, but POTS is what I believe is causing my life to be basically unlivable in any way that I have lived life in the past. Below is a video explaining what POTS is and what it does to your body. 

Well, I don't know where good intentions really get you but anyway, I haven't really felt well enough to write lately. So, even though I don't feel great today, I sure feel better than I have in a long time and that is because I have been getting IV saline fluids twice a week now for a few weeks to help with the dehydration that POTS causes.

Most people's bodies are made up of about 70% water but people with POTS are usually anywhere from 30-35% dehydrated in their bodies. In this case, you can never drink enough water to make up for that difference so sometimes, especially if you live in a hot place like I do in Texas, you need some extra help with hydration. I go to a local hospital to their infusion room, where people get chemo treatments, blood transfusion and all other kinds of meds, to get my fluids. I get two bags twice a week and because my veins are small and not so sturdy, it takes a long time to get the fluids in. Usually, it takes about 4.5 hours to get the whole two bags in. That seems like a long time but I must confess that the infusion thing is not a bad gig.... I get to sit in a really comfy recliner with a warm blanket and each chair has its own personal TV. So I just push back, get warm and watch TV or read or listen to my IPod or my favorite thing, I sleep! The only part that I don't really like is getting stuck for the IV.

The pain of the stick is usually brief at first unless there is digging involved, but I think the stick activates my nerve endings or something so I kinda get achy for the rest of the day, that would be achy on top of my normal achy. It usually takes about three sticks but on occasion, I get by with just one stick. The other day on a Friday I had infusion done and that was 3 sticks and the next morning I had to get a blood test done and that was 5 sticks with no blood, in the end, so they told me to come back on the following Monday and that was 5 more sticks and yes..... blood... but they took 16 vials...wheeeewww... I didn't think I was going to have any blood left.... and then the next day was infusion again and that was 3 more sticks because the blood test stickers had used and messed up all the veins for sticking I had in my

Anyway, that was 20 sticks in four days! All I have to say is Thank Goodness I don't have to get blood tests done that often!!! A funny thing that also happened on that Monday was that I went to the eye doctor and of course they dilated my eyes without telling me beforehand that they were going to do that so I didn't take anyone along to help drive me home. I had only had this done one other time and it was the worst experience I have ever had with my eyes, ever... it was a year ago and of course, I was not told this would happen, and I can remember not being able to see even to the front end of my car. It was only by God's Mercy that I made it home without running over 6 people. Anyway, I was really concerned about this because I was worried that I would be driving like a drunk person and if I were to have gotten pulled over and the police officer would have seen my arms with all the sticks, which look like drug tracks, then I knew that I would not be able to convince them that I was not high on drugs but rather I had just been to the eye doctor. I call a friend who I thought had the most money to get me out of jail and told her just in case......Again, God was smiling on me that day because not only did I not get pulled over, but the dilation was not nearly as bad as the first experience. I was able to tell the doctor that last time was awful and he used a milder form of drops this time. What I learned? Just speak up and let the doctor know when things aren't going well for you and most times they can help you out and confirm dilation!

Onward I go.....I wanted to post a link to a video on YouTube that I found that explains what living with EDS is like. There are lots of videos like this and I am glad that people have posted their stories because it helps me understand myself better and it helps in explaining to others that one, I am not alone nor am I making this up, and two, it gives others an idea about what my life is like.

This is The Spoon Theory! This is a great way to explain way living with a chronic illness is like. 

Here is the link to the video on EDS


And here is a link to explain a little bit of what POTS is and how it can affect the body.

Come Back again to learn more about EDS and POTS and the rest of the problems that EDS offers.

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