Finally; A Light at the End of the Tunnel!

Oh my gosh. So I've been waiting a very long time to be able to write about this and I can't believe that the day has finally arrived. I think we're making progress into my treatment plan for my POTS! It was very touch and go since I was diagnosed in April of 2014 but now that seems like it may very well become nothing more than a typo in the dramatic saga that is my life.

So where do I even begin? This is going to be long and a lot of me babbling so if you want to take part in the Too Long; Didn't Read competition you may skip down to the bolded paragraph at the bottom.

Well, first I saw my psychiatrist and was diagnosed with Binge Eating Disorder. You'd think you would be unhappy to receive a diagnosis of an Eating Disorder but I couldn't be happier. It feels like such a relief to know that what you're experiencing is real and that there's a way to treat it. That treatment in my case is the stimulant known as Vyvanse.

Now, I was very hesitant to try this beautifully miraculous drug because my psychiatrist (well versed in POTS himself, as he's the one who suggested the diagnosis to me!) mentioned that a side effect is tachycardia. No POTSy wants to hear that, of course, but I decided to try it out. The idea is that this medication will suppress your appetite to help combat the binges while you're in therapy working through the psychological tethers helping to cause this disorder.

So I took it. I was terrified and nervous because I worried it would make my POTS even worse.

Well, it worked beautifully. My appetite was gone and I was finally able to be free of binging for the first week in about five or so years plus there was no racing heartbeat! Unfortunately this didn't last but we've now got me on a lower dose and so far it's beautiful!

This diagnosis, however, brought upon a beautifully wonderful epiphany that I just have to share with the world because I think it can genuinely help others.

POTS is irritated by eating large meals. This is because your body has to work harder to help digest the food and as a result your heart starts pumping harder to assist in this mission. With POTS, it can cause a lot of icky feelings such as the all-too-fun fluttering in the chest that feels like you're going to become one of those cartoons whose heart bursts through their chest like a cuckoo clock.

Thinking about this, I realized... "Big meals... Binging... Big meals... I've been really sick... Binging... Binging... OH MY GOODNESS".

It hit me like a ton of bricks.... My POTS was so bad because I was suffering from Binge Eating. I ate so much food that it would make my heart go crazy and I felt like a miserable mess.

With this medication I don't experience as many symptoms anymore. I'm actually getting better.

I'm getting carried away again with this post, as I usually do with the others. I'll cut straight to the moral of the story right now:

If you feel like you suffer from compulsive eating, over eating, not eating enough, or anything that doesn't seem right regarding your food intake - Please seek help. Treatment can and does work but it may also help treat other problems you are dealing with. If you are also sufferer of POTS and you're experiencing these other symptoms; I strongly implore you to speak to your medical team because treating that may help treat your POTS too. I know it's scary to talk to someone about this and sometimes it can feel embarrassing too. Trust me, I really do understand. I am dealing with a lot of anxiety right now because my hunger is suppressed which means I don't know how to eat like a regular human being. It terrifies me that I don't have a basic skill that most people do. I know, however, that I have a very strong support system both in real life and on the interwebz who will help me through this. Things are changing for the better and YOU CAN GET BETTER TOO. Sometimes it takes awhile to find the right path and may seem like you're walking blindly in the dark - I was there recently too - but there is ALWAYS a silver lining. Even though I don't know you I genuinely care about you and your well-being. I support you and I know that you're strong enough to handle whatever comes your way. 

 I know this is pretty senseless babbling about my personal life and experiences, as are the rest of these blog posts but the reason for this is because I really want others to know that they are not alone. I share my personal experiences, my struggles and my successes because I don't have anyone who knows what I'm going through. While this acts as a journal/diary of sorts for me, if someone else does read it my hope is that they'll find solace with the fact that someone else is struggling or is happy in the same way they are. I want to help with the amazing sense of unity that is found in the Spoonie Community. It may not be the most exceptional way to do so but I feel like it could help at least one person.

Thank you for taking the time to read this and I wish you all the best~

Happy planting, POTSies (Oh, I love bad puns too much),

xoxo ~ Rosie

It's Just So Frustrating

Hey guys. I guess I'm not going to be reliable with trying to post weekly. Maybe now that it's the summer I can find the time to do it, but I won't make any promises. I just had to write something right now because I needed to get it off my chest.

I keep pushing myself too hard with my POTS but I can't help it. I don't have the financial support I need to be able to relax and not do anything on the days I need to. I took tomorrow off of work because I have to go back home for a bit but also because I've spread myself way, way, way too thin. I think I used up the spoons I had for this entire week by Monday evening and today's only Wednesday.

All I did was go back to work for a few hours and start volunteering at a nursing home that I had to walk to. All things that would make someone tired, yes, but not to the extent it does for someone with POTS. It doesn't help that, and TMI here, it's that time of the month. I'm sure any woman with POTS can relate to how nasty symptoms can get when you're dealing with your natural cycle.

I'm just so frustrated because I need to be able to afford living on my own, but I don't have the capability of working as much as I need to. No one really understands just how hard this is, but my DVR counselor (someone who is from the state and working with me to help me become employable with a disability) gave me something that should help start an open communication with my doctor about my conditions and limitations.

I've never been the type to listen when someone tells me to take it easy. I just get this undeniable need to keep going and going and going.

I think I might have learned my lesson fully tonight because I spent yesterday working and going home with my mom to pick up the car then came home to do laundry all night before sleeping. Had to wake up at 9:20 am which for me with POTS, is the equivalent of waking up at five in the morning in terms of how I feel. Then I was out and about doing a lot of running around until 4 PM tonight. I also had to get my blood drawn and forgot to eat which only made it worse. Came home for a small break and then went off to volunteer for a few hours.

I know it sounds like the typical day for someone but this just drains me. As I'm typing this my eyes are blurry and unfocused, my head is pounding and my neck is aching. I feel nauseous and exhausted so I'm going to be heading to bed.

I'm just mad at myself for not listening to my body and giving it the rest that it needs. I'm frustrated with my support system (who is AMAZING. Don't get me wrong! Mom and dad just bought me an entirely new bed!) for not understanding something that they couldn't possibly know unless they experienced it themselves.

I may have found a doctor, though, who knows about POTS and can help me. We'll see, though!

In happier news: Despite all of my problems and struggles I had this semester.... I passed all of my classes with B's!!!! I'd say that's a pretty great accomplishment, all things considered. I'm going to be working on myself this summer (and losing weight hopefully, because of doctor's orders) so here's to the start of a hopefully wonderful summer break!

To everyone, good night and farewell until next time~ Hang in there!

- Rosie xoxo