Sunday, April 20, 2014

Lessons Learned...

Yesterday's Health Activist Writer's Month Challenge post got away from me as I had a very sleepy day yesterday, but I'm gonna do yesterday and today's both today. So yesterday's post was called Lessons Learned and the prompt said this: What’s a lesson you learned the hard way? Tell us a time
when you made a mistake and promised never to make that same mistake again.

I think the lesson I learned the hard way about my health journey is one that I'm always learning, molding, and improving upon even daily. And that would be how to be my own best advocate.

Advocating for yourself is number one on your to-do list if you come down with a chronic illness.

Only you know how you truly feel each and every day, hour, minute, and second. Only you can explain the things going on in your head. Only you can verbalize why that won't work for you, or why you want to try this or that.

The lesson that I'm in the midst of learning right this very moment of my life is that there is a fine line to practitioners between you being an advocate and you being a psych case.

Unfortunately, there have been people in the past (and not a lot of people either the actual statistics for Munchhausen's syndrome are somewhere around only 4% of people) that demand this test or that test or this drug or that drug and the doctors end up finding out that there is nothing wrong with them they are just trying to seek attention by making up sicknesses that sometimes when we begin to advocate for ourselves we get psychiatrists called in on us.

We have to remember to be strong and keep pressing on and keep advocating for what we need.

I have now had psych called on me twice in 6 months. Just because I was advocating for myself.

The first time I was inpatient at a hospital for 9 days. I was not getting my meds on time ever, I was repeatedly being told different stories by every doctor that walked in, my procedures kept getting pushed back keeping me (someone who is never supposed to fast because of mitochondrial disease) for 6 days straight, being lied to by doctors about my lab values, and being treated rudely by the hospitalist. So I was upset, overwhelmed, and vulnerable, and I cried, a lot. But to me this seems to be a natural human response. I couldn't control anything, nothing was being solved, and I was literally sitting there wasting away. But because I kept crying whenever someone came in the room, psych was called in. Luckily for me, the psych also thought I was having a natural human response to what was going on but we did start me on a VERY mild anti-anxiety med to help me be a little more calm while I was inpatient. But my point is the only reason I got psych called on me is because I was asking for answers, updates, my medication. These are simple requests. I was advocating for my self and my health. I needed to know what was going on. Because of my advocating I was immediately a psych case.

The second time I had psych called on me was about 1 month ago. I have to have a sleep study (this week...ahhh) and they were explaining to me everything that will be hooked up to me and I became very anxious. I will openly admit that I AM anxious about things touching my face and there is a whole lot of stuff attached to your face for a sleep study. I told them I didn't think I would make it through without something to help me sleep. So I was sent to a psych for my extreme anxiety of "tests that shouldn't be anxiety causing" and to get one dose of a stronger anti-anxiety med just for the night of the sleep study. Well, I went to the psychiatrist. She spent 20 minutes with me. Asked me 3 questions and diagnosed me with severe clinical anxiety and depression and said she would start me on a very strong anxiety med 3 times a day from now on and in about a month start me on an anti-depressant too. And I'm to see her every 2 weeks. I was so mentally exhausted that day that I did not have the energy to advocate for myself. Now I am on this anti-anxiety med that is making me so un-anxious that I am barely getting anything productive done and it's making me depressed because I've lost my drive for everything. Because I didn't advocate for myself and wasn't assertive about saying I'm just here for one dose for my sleep study I am now suffering more than ever. Luckily, I found out the drug I'm on is mito toxic and my insurance came back and said they gave me a 30 day supply, but the med is not on their formulary so I have to find a different one to take in the future, so I will be off of it probably tomorrow which is when I go back to see her. But if I had advocated for myself then maybe I wouldn't have been on it at all. This is why advocating for yourself is so important. Even if your nervous, you need to stick up for what you think is right for you no matter what.

Another way we can advocate for ourselves is at doctors appointments. Don't be afraid to say I've heard about so and so treatment here's some articles I brought about it, could we consider this for me. Or ask if the doctor has any more suggestions that they aren't using at this point. Or things like that. But you have to be careful here because some doctors are open to suggestions and some doctors DO NOT like when patients bring in information because they think that they are just diagnosing themselves on Google or Facebook groups and making themselves sicker this way. This is a thin line, but most of my doctors are receptive to it.

Finally, the last way we can advocate for ourselves is with our friends and family. It is SO important for our friends and family to understand us. Make it clear from day one that you are an open book and that you will answer any questions as long as they are appropriate. Educate your friends and family about what you are going through. Make sure that they know if you have to cancel plans or not come to a gathering it's not about you not liking them, it's about you not being able to do things that day. Advocating to friends and family is probably the most important, because if friends and family know where you are coming from, then they can help advocate for you too if they are out with you and someone says something, or they are not with you and hear someone talking about you. Having friends and family in your corner is a blessing.

I hope I gave you some insight into what I believe is the most important lesson you can learn while being chronically ill, advocacy!

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