Saturday, November 28, 2015

I'm so EXCITED!!

I recently purchased the domain: As you will notice that will become the header. I'm going to combine two separate blogs into one. My love of educating the world about Dysautonomia and other invisible illness. Plus my love affair with art. So please stay and enjoy the ride. I promise my POTS post aren't always sad and depressing. This blog is really just about loving me and who I am. These are just 2 things that make me... me

Monday, October 26, 2015

There is enough for everything to get clean.

As I sat watching "Eat, Pray, Love" there comes a part where the main character is complaining that there isn't enough water for the bath tub to get everything clean. A wise ol' Italian lady replies "There is enough for everything important to get clean.". Or I guess something along that line. Sorry excuse me for not double checking. My brain seems to get stuck and keeps going and going.

So that line got me thinking about how so many of us. Not just us POTSY types but everybody on this Earth wants so much to make us happy. We adapt to one type of life and if an upgrade of some sorts comes. We forget how thankful we were to have what we just had. Just think at one point we were lucky just to have the air in our lungs and a mother to cradle us in her arms.

Well right now I'm in a sort of a remission of my POTS. I've been able to keep up with every soccer game and band event my oldest son has needed to be at. Heck I've even been at the events I need to be at. From psych appts to gym workouts. It's almost like life is absolutely perfect. But you know what? I'm not happy at this state. I want to be able to go back to college and own my own company and just do everything that is to my hearts desire. Then I watch this movie and I slow down. I realize all I need is the air in my lungs and somebody special to hold me.

So take a deep breathe in and remember there is enough to get all the important parts clean.

Monday, August 24, 2015

Tore up from the floor up.

Warning this post is a bit on the venting side. I am also very sure many of us feel the same way about what I'm about to talk about. When I first became sick I was diagnosed and tested by Cleveland Clinic in Ohio. I went that route because the University of Toledo, where Dr. Grubb practices, has a very long wait time for your first appointment. I believe my wait time was quoted as being a year. It dropped down to 6 months once I had the testing done that gave me the diagnosis of POTS.

As you may or may not remember, last month I was in the hospital at Ohio State University. I never that knew anybody else knew anything about POTS within a 2 hr driving period of my home until that episode. Toledo is 5 hours from my house. I know you are thinking, "Where is she going with this?" Well OSU decided not only do I need my current doctor but also a neurologist. I went to the neuro they suggested and was so annoyed. All he did is want to run test on me. As a matter of fact most of them are test that I had done at C.C. And no matter how many times I told him this he insisted I needed them repeated.

Tomorrow I am scheduled to have an EMG test. I'm actually in the process of rescheduling that test. Why? I already know I'm tore up from the floor up. I've had these test. Do the other test that you think I need to do, Mr. Doctor. So now I'm going to be the responsible patient and get Cleveland Clinic to send me all of my test results that I've had. This way I can sit down with this doctor and say look this is what we know.... you can now do everything else.

We as patients know we are broken. We are trying to find the answers too. We want to know the answers so badly it really hurts. What we don't want is to physically hurt more. So if you're a doctor or a patient reading this please do me this one thing. DON'T PUT US IN ANYMORE PAIN THAN WE ARE ALREADY IN.

And on that note I will end this blog post and say that I hope you're feeling well. I hope you're having a much better and a painless day. Thanks. :)

Thursday, August 20, 2015

Not so comfy with my blanket.

Hey guys! Sorry I've not had a chance to catch up with everyone but I promise I'll make it more of a priority. I currently have a high school teenager that is involved in every activity under the son. I also have a son on the autism spectrum so they both keep me very busy. While driving home today I decided I wanted to talk about the comfort blanket.

What is the comfort blanket you ask? Keep in mind this is just my answer and term but it is anybody we cling to when we aren't feeling well. That one person who just seems to make the world a better place. My husband is my comfort blanket. Probably because for the most part, when I'm down he's the person who is there for me. If I'm stuck in bed all day, he is mom and dad to the whole house. I realize I'm very lucky to have this but there is a downside.

My comfort blanket needs to be appreciated. I suck at showing that but I am very thankful for him and all that he does. Another thing is we have arguments a lot. To give an example of how bad they can be; this past week I jumped out of the car and decided that I was going to walk home. Right smack dab in the middle of the highway and twenty minutes from home. So after that whole thing I now feel I have no comfort blanket.

For me that is okay. I've always been very independent but what happens when I have my next big flare (which seems to be happening every other week)? I'm probably going to feel very lonely. And possibly a little scare.

So as I end this blog post think about who may be your comfort blanket. Is it your parents? maybe your spouse or gf/bf... It can even be an online support group. Whomever that person is please remember to thank them. Remember they feel our ups and downs so many times. They don't have to. I've seen people walk away because they just can't deal. If you're lucky enough to have that comfort blanket, tell them Thank you.

Sunday, July 26, 2015

It's the end of the world as we know it and I feel...

very sad. Or I imagine that's what you were thinking I'd type since that is the next line in the song. Thing is I haven't posted very much because mentally I'm trying to keep my head straight. I walk a thin line between depression, okay and suicide. I wouldn't even really call it suicide. I don't want to die nor do I plan on offing myself for a lack of a better word. More like, I wish a rock would land on me and take care of the job for me. Some days the only thing that keeps me going is my amazing family. They give me all the love in the world. For them I fake the smile and pretend that everything is fine.

I've had my official POTS diagnosis for around 6 years but I've had it much longer. About 30ish years. It doesn't change a thing. I've dealt with this pretty much non-stop w/o a remission stage for the past 6 years. I'd like a break from fighting just to pretend that things are normal. My depression medication isn't working any longer. I am meeting with someone to get that settled but in the mean time hearing the doctors talk about referrals to other specialist just breaks my heart. Thing is I put most of my appointments off because I'd rather take my kids to their events because that's at least somewhat normal for the other women who I see living a happy life. They may be faking it but I'm willing to believe them and follow along.

I'm also very sorry for the constant down/depressed post lately but this is a blog about me and how I'm dealing. So I'm planning on merging it with my craft blog so it will be truly a love affair based upon my life. I promise if you stay around you'll see that I'm not always sad and depressed and who knows maybe we'll all crack the code to this POTS/Dysautonomia thing sooner or later. I also promise to include some of the amazing adventures that do happen from day to day. Like did you know that there are tarantulas roaming state route 348 in Southern Ohio? Probably not because I'm pretty sure I'm the first person to discover this. ;)

Hang in there peeps. It's a bumpy road but we'll get there.

If you are feeling like you may be on the verge of suicide or need someone to talk to please pick up the phone and call:
1 (800) 273-8255
National Suicide Prevention Lifeline

Tuesday, July 21, 2015

Do you remember where I left my brain at?

I had every intention of getting on here and blogging about something important that I had learned and then it struck. I took a nap and woke up and couldn't remember a thing I had planned on posting about. So I will try to do that tomorrow. In the meantime, this gives me a chance to bring up brain fog.

What's brain fog you ask? It's that inability to remember things or where it's hard to concentrate. Many POTS/Zebras have it but it's a great term that describes it. Thing is there is really no way to make it better. My doctor currently gives me Adderall to help with it and to help with the fatigue. Unlike millions of college students that abuse it, I hate the medication. The jitters and anxiety it causes me when I first start taking it again (I'm bad about taking it daily) drives me insane.

So when I get a chance to post tomorrow I'll try to remember what I was going to post. What's really annoying about brain fog is I'm also trying to write a short story book for teenagers and it gets going really well then I forget where I was going with it. Oy!