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.