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 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.

<3

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.

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.

Sometimes...

Sometimes the hardest things to get out of your head should be the easiest. A life full of laughter and love should be enough to sustain a life that suffered a moment of heartache that should have been expected because it was wrong. Yet the one thing that goes through my head and my heart is the word forever. Not in the way that one thinks it would but just that mine still screams it and can't take back that promise.

Give me strength!

God give me strength. I sometimes don't know how I deal with the daily things that live brings with it. Having POTs sometimes feels like a life sentence. I miss being able to do the normal everyday things that is I once could. Please remember today is a gift. I'm thankful for my children and my life but I do wish it could be a little bit more normal like everyone else.

My heart hurts today because its a self pity day.. again.

Long time no.. Yeah I'm a slacker!

I just realized how long it has been since I've posted in this blog. Mainly because I've been so focused on my other blog at http://iamnomartha.blogspot.com/ . Its my crafty blog. I wasn't always into crafts but as POTS took over and took pretty much all of my freedoms away, I found that I do have a somewhat crafty side.

Ok so it is now 2011. For some odd reason I keep typing 2001 instead. *shakes her head*. Not sure what to say other than I don't think the pacemaker is helping. As usual with POTS, I have a constant roller coaster of good and bad days. Except they tend to be weeks not days. My brain fog is really bad right now. Cognition is not my strong suite at the moment. I have an appt with Dr. Grubb in a few weeks.

I have to say I like the man but I don't like how often my visits are spaced. My PCP knows very little about POTS so seeing the one person who knows tons about it so few is a pain in my booty. I do know that I will have a long talk to him about what needs to be done. There has to be changes.

Still fighting for disability. The lovely state of Ohio was ever so nice as to reject my last appeal before they could even get the information about me having a pacemaker and why. So now we are fighting to get it put back in appeal status rather than hearing status. I'd love to kick Ohio really hard between the nuts (buckeye nuts?).


Ok something not POTS related. The kids are doing really good. Growing like crazy. Ian was diagnosed with an autism spectrum disorder but is doing amazing considering everything that should be delaying him. He's right on and above where he needs to be. Both boys got straight A's on their report card. So happy and proud of them.

I also do have to say as long as I ignore the issues associated with POTs, I'm very happy. Also if I ignore another issue. I've found a renewed since of enjoyment and happiness. Its very close to cloud 9. <3

I promise to try to update this a bit more. Also feel free to check out my other blog. I do tend to update it more often. :)