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.