Thursday, August 25, 2016

TOUGH and Smart? Or The One Where She Finally Gets a Clue!

You know you haven't written in a long time when you can't remember what your login in is, sheesh. I just put up a post in my support group asking them why I can't remember to take my meds on time. Well, maybe I should give you more of the backstory first.

I was a real trooper a couple of years ago, like a machine I went through every procedure, doctor visit, name it, I came out of it assuring my loved ones that I was fine and that they needn't worry. I even remember once when I was laying on the floor because my stomach hurt so badly and reassuring my mom I would be fine, I was TOUGH! My mom calls me brave...

Then I had a shoulder surgery that went well but the care after it didn't go as planned. I finally know 2 years later that instead of the Adrenal Crisis I thought I was having, I was actually having a Postural Orthostatic Tachycardia episode. It scared me so badly that I honestly believed that I might die. The attack was bad, what made it worse was that I was in the hospital and no one would listen to me about what I needed. It was the first time I felt more safe outside the hospital than in. At that point I thought steroids would help (and they did), now I know a simple bag of fluids would have made all the difference...

A huge chunk of my life changed that day. I could no longer trust my doctor or my hospital but what I didn't realize was I could no longer trust myself for putting myself there to begin with. Everything I thought I knew (and believe me that was a lot) I questioned. If I could put myself in that situation what else could I do that might turn out that wrong? I went from a TOUGH person to a passive /scared person in those 5 hours I laid in that bed worrying if I would make it. I hate it...

I hate what I have let that surgery take away from me. I know that I needed to cope and in order to do that I had to change, simply to get used to the thoughts in my head. Obviously I wasn't ready to die but I never realized that my situation was serious until that point. I think part of my TOUGH was a lot of "nothing bad is ever going to happen to me". Shocking, considering I have enough illnesses there usually aren't enough lines on the new patient forms to get them all on there. I think TOUGH meant kidding myself into believing nothing could knock me down. Wow, how those 5 hours knocked me down.

Since then I've become this person who isn't sure of anything, even after 2 years. I take more time off between doctor appointments, I put off procedures and surgeries and I continue to try to drop meds (making myself sicker, btw). It's almost as if I don't think about my health, it won't be there. Believe me, it's a difficult way to doctor and I don't recommend it.

Tonight I found myself asking my own support group why I can't seem to get on track with my meds and I thought about all of the times I preached about taking meds regularly and what a hypocrite I was. I'm feeling so worried and lost with my health that I'm stuck. I'm not helping myself and I'm definitely hurting myself by not keeping all my doctors in the loop (I was called on the carpet by my PCP a few weeks ago, yes I did get in trouble and a lecture).

I need to recommit to myself to my health. I need to take a genuine interest in my health again, I need to study my new diagnoses (this is why I hate going to doctors) and get to know them as well as I know RA and general things about it. I need to rely on other patients to help me with that "been there, done that" and "me too". I need to trust myself that even though I made a bad choice on that surgery I can still make good choices, I had been making them up until then. And I need to start making choices and getting educated.

I need to build my trust in other doctors and remember that just because they are new to me doesn't mean they aren't capable. I need to remember that I've had a surgery since then and have done well (and my foot fused and is doing well, yippee) and that since we know about POTs we can plan even better for the next time.

I also need to remember that I need to be a better role model for my daughter, she will most likely be doctoring for the rest of her life (my neuro EP thinks she may already have POTS, I guess its genetic/hereditary). I need to teach her that being tough is just one part of being ill and that she has to not rush into everything a doctor might say she needs but sit back for a minute and make an educated decision.

Maybe that's the answer, maybe there is room enough for the TOUGH person I was and the more concerned I am now. Maybe I can be both, maybe I should be both, maybe that is the lesson I've been looking for all this time. Yup, I'm a slow learner but I finally think I've learned everything I can from that time and its time to let it go. It's hard to believe that I finally got my answer 2 years later with a new diagnosis (some never get answers). It's time to recommit and find some of that person I used to be, I know shes still in there, I see glimpses of her now and if I can get her to make decisions that are thought through we'll be golden.

Welcome back, I'll be making some big changes in the next week or two. I hope you'll hang around to see what's going on!


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