I forgot my meds…

September 24th, 2014 by Carrie, the Just Mildly Medicated gal

I forgot my meds, a lot of days in a row… okay, a lot of weeks in a row…

I think most people on a long term prescription routine fall off the wagon, be it a Just Mildly Medicated gal juggling many prescriptions or someone who has one steady nagging medication to take daily forevermore.  This is about the summer when I was a Medical Radical and Pharmaceutical Nonconformist, okay so really it was more that I was just a pissy slacker.

radical

Many people make this choice; they get tired of paying for the medications, taking the medications, feeling the side effects of the medications, and not so much the original alleviation the medication was supposed to provide. They decide it isn’t working for them and discuss it with their doctor or decide to consult Google on if it is a medication that can just be stopped. (Come on, we’ve all consulted Google)

That is not this story…

To tell the story we must go back, way back… okay, it wasn’t that far back. Just take my word that I am super organized and took my meds exactly as I was supposed to, I handled my IV therapy like a pro and was hooked up (or flushed my port) at the same every day. I was also following a gastroparesis friendly diet (which I loathed), salt loading, and drinking plenty of fluids. I still didn’t feel “well” and I was a bit bitter about that, I mean who wouldn’t be?

When I spent a week at Mayo in Rochester, MN I was off meds and IV fluids for the duration. (I did stay on a few that the doctors at Mayo thought would not be good to just stop, but they were few). I actually didn’t feel all that much different. I kept waiting to come crashing down, but I felt my normal episodes and tested just about the same as before I started taking all of my medications.

It was talked about again that because of the gastroparesis (partial paralysis of the stomach linked with autonomic dysfunction) some of my meds may not be absorbing properly and I may not be receiving the benefit of them. My immediate thought was, “Then why in the hell am I taking them?!”

I tuned out on the last five minutes of the Mayo Clinic doctor speaking to me as Phil Collins came to me and sang I Don’t Care Anymore, and when Phil Collins comes to sing to you, well, you listen.

Phil also came to me and sang Sussudeo at the Cardiologist once… he and I have a connection… but I digress.

I wouldn’t say I was in a depression over the topic of being Just Mildly Medicated but apparently a seed of doubt and stubborn rebellion was planted. I think of it as a period of time that I tried to give my illness the middle finger as a treatment plan to see how that worked out.

When I came home I continuously “forgot” certain meds and became very lackadaisy with my IV treatments (lackadaisy means lazy and uncaring for any non-southern folk).  A routine that I once took very serious shifted and became a series of forgetting and not being very concerned about it. It wasn’t until months ater that a real decline in my health was undeniable.

My flares were lasting longer and happening more frequently, I still didn’t attribute it to the fact I hadn’t been taking half of the medications I was supposed to. I honestly didn’t even consider it. I can’t believe that it didn’t put a spark under me to get focused on my treatment plan, but I really didn’t admit to myself how off track I was.

It wasn’t until an episode that caught the attention of both my nurse and my husband.  In two separate conversations my husband pointed out that I’ve not been doing well and something needed to be done about it. My nurse knew my blood pressure readings had been odd and my weight changing. They both could track it to the last month and a half. That would be a month after my new routine of forgetting my meds.

I had to acknowledge to them, and myself, that I hadn’t been taking my medications as prescribed and I hadn’t stayed on top of my IV therapy; that this decline was likely of my own doing. Not a conscious choice to abandon my plan, just a gradual shift off the beaten treatment path.

meds

Dysautonomia is a chronic and progressive illness. This means it is forever and is likely to become worse over time. When taking all of my meds and IV therapy options as prescribed I still have episodes and I don’t feel “well”. However my treatment plan is important. It is designed to give me the most personal freedom over my illness that currently is offered.

I am back on track now and hope to be feeling an improvement very soon.

Love,

The reformed Medical Radical and Pharmaceutical Nonconformist Just Mildly Medicated gal <3

Keep Calm and Take your Meds

 

Want to check out when I took a tour of Canine Partners for Life for the service dog I am on a wait list for?

How about when Phil was buzzing Sussudio in my ear?

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7 Responses

  1. Rach says:

    Aw, Carrie, I have been in that exact place. My rebellion came about when a doctor said he thought perhaps my problem wasn’t dysautonomia, but my medications. So I threw a silent tantrum and stopped taking them. But I was the only one who paid. I think the problem is that they don’t help ENOUGH to compensate for the stress of taking them and the awful side effects. But not taking them is worse.
    PS. Phil has a thing with me too. ;-)

  2. Thanks for sharing with such honesty, Carrie. I think we’ve all been there at some point to some degree when you are sick forever (okay so it’s not forever, but i’m feeling very melodramatic this morning.) I usually get a slap from my body pretty quick and in truth my logical mind is like, “what the hell crazy lady?”, but a part of me just gets meh about it all. Or I start thinking that I’m sick anyway what can they really be doing. Or maybe that’s why my gastric system has given me the middle finger. Or, ….
    Hugs Carrie xx

    PS I may be the owner of a Phil Collins cassette or 3 ;)

  3. “Heroes are forged on anvils hot with pain,
    Splendid courage comes but with the test.
    Some natures ripen and some natures bloom
    Only on blood-wet soil, some souls prove great
    Only in moments dark with fear and doom.”

    “God gets his best soldiers out of the highlands of affliction.”

    (Streams in the Desert Daily Devotional)

    Carrie, “You are more than a conqueror.” Keep fighting!

  4. Jamie Clark says:

    Wow, I thought I was the only one that “forgot” to take their meds…I don’t know really why I go through bouts of rebelling against my meds, okay well it isn’t so much of a rebellion as pure laziness at times. But hey, I am only human. I have no explanation as to why I would not take meds that keep me from deep depression. I guess I must just get that 20 seconds of insane courage and think “Hell I, don’t need them”, only to crash and burn in a few days. Such is life I guess LOL Maybe deep down I, too, want to be a Medical Radical and Pharmaceutical Nonconformist lol Kinda fits me ;)

  5. Sammy Ann says:

    Been there. Done that. At the time it turned out I was right (I had a rather elderly doctor whose methods were more medieval than helpful) but learned the hard way that just because I was right once it didn’t mean I should then leave my old doctor without finding a new one. Not the best time of my life. Right now I’m being tossed around between specialists and nobody is quite sure what is wrong with me yet but the word of Dysautonomia was thrown out the other day. Absolutely love your blog.

  6. Thank you for a very honest and brave post on a subject that I think a lot of people are familiar with but few want to admit.

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