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!

Saturday, July 18, 2015

You know what they say when...

You know what they say when a POTSY goes off the radar right? Most likely in the hospital. That was the case for me. After some med changes and many testing I'm at least glad to be back home in my bed.

I am very amazed that even though typical test used to show dehydration failed to show it. An echo showed the structure of my heart was off during its beat and it indicated dehydration. Considering I had just had 3 full bags of fluids before the test was even done. So of course I was given more IV fluids, meds to help my body to retain the fluid and last but not least more med changes to what I already have.

I think this brings up an important fact. When on heart meds, typical bp methods used to determine dehydration are not a valid form. Nor do I think any POTS person can really be tested this way due to our body's inability to really know how to control our blood flow. I know there are probably no doctors following me or reading this post but there is hope that this could help a POTSy person by knowing this as an issue for me. Remember we all must be our own patient advocate.

I do want to say Ohio State University Medical Center's Ross team was amazing. Although they wanted to keep me long they still understood that I couldn't get better being somewhere I couldn't get proper rest and made sure I had followup test and IV fluid appts for this coming week. The whole hospital was wonderful. I'm glad they were knowledgeable and close by since driving up to Toledo wasn't an option. Dr. Grubb is a great doctor just a very long drive in a situation that wasn't idea to be traveling under.

If anybody has any questions in which I can help, please ask. I'm more than willing to share my experience because so little doctors know about this and so little is taught to them if they do know it.

Wednesday, July 15, 2015

Wednesday infusion day.

Oh Wednesday, how I hate you. Every week a nurse comes and hooks up my port and I'm bound to a pole for 4 to 5 hrs. The annoying IV plays the song I love to hate most. And today will be extra special because noise hurts. Every little sound from the buzz of the fan to the ding of my husband messaging me on Facebook is killing my ears today. This is all part of my POTS. Somedays I love the world and on other days the world just hurts.

I was actually just thinking that if I didn't have young children that I'd probably drive off somewhere and take a pill that would make me sleep forever. Forever sounds good when there is no more pain, iv needles, medication bottles, no need for energy and the many other issues that comes with POTS.

Before you freak out and think wow she's going to kill herself or she's suicidal and you feel the urge to call 911; Stop right there. I'm not. I'm just extremely frustrated with how I'm living this life. How little I have control of it. How I had all of these plans like a college degree, a few mission trips and to never miss my son's ball games. It really hurts when reality hits you in the face.

So today excuse me while I hate everything, including myself.


Tuesday, July 14, 2015

The pain... Oh the pain!

With POTS comes an uncanny amount of pains. Neck pains, headaches, back pain, joint pain.... you see where I'm going with this right? So what do we do about it? We should probably tell our doctors and they in turn should take us serious but for the most part many doctors don't. I've been lucky to have a doctor who is now helping me with some medication help. But what if your doctor isn't one of those or you just don't want to be on anymore dang meds...sorta like me!
I've come up with a list of some helpful things that might help with the pain:
-Soak in a bath or pool. If using a bath tub try adding some epson salt.
-You've got to move it move it. Yes, movement hurts but it also helps keep the muscles and ligaments stay loose.
-Massage. Oh it's a magical word. If you manage to find a good massage therapist you should be able to pick out what kind works for you. Ask them to switch it up a bit and you might find your release.
-A new bed. Sometimes your sleep position can make all the difference. I recently purchased a new bed and it has made a huge difference.

I hope these tips can help you. Just remember the most important thing is to communicate with your doctors.

Monday, July 13, 2015

The return of the broken, fallen and abused.

I took a break from writing about my disability. I focused mainly on communities focused about the illness/syndrome. It felt good to answer questions and I still plan on doing that there and both here. If you have a question, ask away. There was one thing missing. My journey wasn't being wrong out. Like, did you know I now have a power port for infusions?

That bad boy is a pain in the butt but it's also a God send because instead of 5 pokes to get my weekly IV infusions I only get one. Here's the thing. It's not really helping. I feel hopeless. I've been on the floor more times in the past week (blacked out) than I have in a year. Something is going wrong and the thing that hurts the worst is the feeling of helplessness. I feel helpless. If I call my doctors that are local they will tell me to call Toledo. Well if I call Toledo then I'm stuck on at least a wait list as to when Dr Grubb is in town and able to help me.

I never hold that against him. Let me just say Dr. Grubb is the hardest working doctor I have ever met. He honestly has done more than enough work on this Earth. He'll always be an angel in my health care. But these constant walls are depressing. If I didn't have children, I'd push for the right to move where I can decide if this life is a life worth suffering through. My husband has seen me fall and not be able to get back up and to see the hurt in his eyes is more than enough. I truly admire the man because not a damn soul has stepped in to help. Not one.

Yes, I have good days and times and as a matter of fact I had one last month where I was able to take not just one but two summer trips. It's like my body knew what was coming. It knew this brick wall was coming.
Where here I stand at the brick wall asking for someone to break it down. Someone to give me a break and say heres a hand let me help you over. The tears are almost dried up. I have a lot of alone time to cry them. I hide them from my husband and kids because this isn't their battle to live. All I ever wanted was a life where my kids could have a normal life and not have a sick mother.

Maybe today I'm just low on spoons but I do promise I will start using this blog more. I also promise that if the day comes and I'm feeling better I'll even use my craft blog again.