Archive for May, 2013

Coping with Chronic Illness

May 14th, 2013 by Carrie, the Just Mildly Medicated gal

I remember the day I was officially diagnosed with a Chronic Illness, Dysautonomia. My husband and I were overwhelmed with questions, information, and emotions. I was scribbling down notes and trying to remember everything.

That was a much anticipated appointment. The specialist was about a 15 hour drive from home and a bit of a celebrity in the Dysautonomia world. We knew we had limited time to get the answers to questions we had been asking for over a year.I found the notes from that appointment today. While flipping through them I remembered all the mixed emotions from that day. I was part worried he would say that I did in fact have Dysautonomia and part worried he’d say that I didn’t.

Let me clarify, in no part did I want to have any type of illness, but it was inevitable that something was wrong and I figured it would be easier to have what this doctor in front of me specialized in than to have to start over somewhere else. After some time looking back at the notes from that day I started to remember more specific feelings and thoughts during that conversation, mostly about a small part of the three hour appointment when he spoke about some things I might feel after everything sunk in.

My notes read:

*Denial and Grief – Done. Felt that when the very first doc said “You should see a cardiologist as soon as possible.”

* Relief of a Diagnosis – Done. Hell I was down-right excited to have words for how I felt other than “I don’t feel good.”

* Empowered – Done. I was learning what exactly what was happening to me and that was empowering.

* Depression – Skip. No need for that one, I have an awesome husband who is supportive and wonderful family and friends.

* Acceptance – Awesome. I am already becoming empowered; acceptance should be what, maybe a few weeks away.

Clearly I saw these things that I might feel as a check list that I could run through.

 

What I clearly had was no idea how coping with a chronic illness worked.

Just Mildly Medicated

I would say most people assume that because I am open about having a chronic illness and do my best to bring awareness to Dysautonomia that I am empowered and accept it. I have actually had someone say “You seem to embrace it”. It felt like the time to shed light on what coping with chronic illness has been like for me thus far.

Denial

I was not as safe from it as I had previously thought. Apparently even when you know the information and have had almost all the tests done (still waiting on those cool Mayo Clinic Tests) denial can work its way in.  I am in the process of three things that will hopefully improve my quality of life; a trip to the Mayo Clinic, a power wheelchair, and regular IV therapy.

I cannot convey how many times I have doubted myself while moving towards these things. Negative thoughts have caused me to put off moving forward with treatment options because I would think to myself that I can’t really need it that badly. Why in the world would someone second guess something to improve their quality of life, things their doctor has suggested? …because you’re in denial.

Relief of a Diagnosis

 That part was very true. I was actually happy for weeks after that appointment. Not only was it not just in my head but I wasn’t lazy or over dramatic. I had an answer, actual words I could say. “I am sorry guys, I can’t make the festival this year. It is too much walking around with Dysautonomia.” Instead of saying yes and worrying if I would get dizzy or feel sick and seem distant or annoyed.Then all of a sudden the back lash hit. Now that I have a diagnosis I actually have something, and the something has no return policy. I was overwhelmed with the concept of being sick for real. Laziness is mind over matter… your Autonomic Nervous System is matter over mind. Even Bruce Banner couldn’t control his heart rate. In all seriousness this realization was the beginning of the next stage.

 Grief 

 I became sick slowly over a span of a few years. I felt like I had time to adjust to my new normal instead of a sudden onset. For the most part that was true. I was prepared, if at all, to grieve about what I used to be able to do.  All of a sudden one day I realized I wouldn’t go back to work the way I had assumed I would.That isn’t to say I am not a functioning productive citizen because I am, but it wasn’t going to be in the way I had assumed. I spent time grieving an idea, and that did lead to a bit of depression.

 Depression 

 Depression for me wasn’t what I expected. It reared in an angrier version of sad, or a bitter unexpected manifesto of the two. I second guessed my life, my very happy life as a wife and mother of four. If I had made other choices maybe I wouldn’t have triggered this slow progression that has now consumed so much.

Empowerment

Empowerment did come through researching, writing, and connecting. Blogging as well as reading other blogs and getting to know others who have medical issues, those have been outlets to express and learn. It has given a value to going through all of this. I still don’t feel so warm and fuzzy about Dysautonomia.

Acceptance 

This one seems a foggy illusion. It’s like the way you prep for a conversation and run it through your head only when the time comes no one says what you thought they would and you’d like to hit some kind of rewind to keep things on track better. I think acceptance can be a particularly hard one for me because others assume I am there. I mean how could I write about this nonstop if I don’t accept it? I think the answer is because I am in the hopes it helps me get there.

The biggest thing I’d want to share is that my original view, the check list version of the stages, it just isn’t how it works. Acceptance isn’t a location you arrive at and think ‘wow that was a long drive’.  It is normal to transition back and forth through these stages, sometimes quickly. I’ve had denial, acceptance, and more denial all over one specific thing in one day. You can assume you will be impacted in one way, like I did with grieving, and it actually happens in a way you never considered. It is a roller coaster.

How has your journey been different than you expected?

*These stages are from a conversation with one specialist where many other medical issues were covered. This is in no way meant to be the psychological guideline of dealing with an illness but more of a personal evaluation of my own experience.

** If you feel you have been in any stage for a period of time that is causing a negative impact on yourself or those around you seek out you physicians help.

Funny Friday: My Facebook friends are asses.

May 3rd, 2013 by Carrie, the Just Mildly Medicated gal

My Facebook friends are asses, kind of awesome asses but yep, asses.

I came out of a chronic illness fog and took a shower, added some fake tanning lotion so I could look a bit more like part of the living world, and actually did my hair. I admit I lost the energy for the effort and threw on a T-shirt and pajama pants and and didn’t even consider make up, but the point is I was more together than normal. Now as my chronic illness peeps know this is a feat for celebration. I needed photographic evidence that I was out of a zombie-like trance.

My photographer is four years old so most of the pics were of my leg or had such a blurry artistic edge I was unidentifiable. So like any 16 year old (or mom with no one around to take a picture) I selfied.

Selfie – A picture taken of yourself that is planned to be uploaded to Facebook, Myspace or any other sort of social networking website. You can usually see the person’s arm holding out the camera in which case you can clearly tell that this person does not have any friends to take pictures of them so they resort to Myspace to find internet friends and post pictures of themselves, taken by themselves.
Urbandictionary.com
 
Ouch Urban Dictionary, I can’t help it that I am home alone geesh!

So on to how my Facebook friends are asses. I mean they are actually awesome but for the record in this post they are asses. I trusted them, I really trusted them. I cannot believe they have put me in this position.

What position you ask…

The position of looking like the crazy lady that brings her dog to Walmart for a photo session. Okay dog lovers, I don’t mean PetSmart photos with Santa or even family photo with your dog included, I am all about that. I mean blue back drop with a “photographer” telling you to look off in the distance (that would be the dog) creating a cheap kind of creepy image.

I am not fishing for compliments, I think its kind of cute… dog looks a tad stoned after looking at it too much during this middle of the night review. For all intent and purposes it is a fine photo and once almost 40 of the Facebook asses liked or commented on it I thought to myslef “self, lets make it a profile pic.”

Well as you know profile pics are tiny, and it looked even more portrait studio crazy.

So I updated my status “I just noticed my profile pic looks like a goofy walmart photo backdrop… it’s a denim couch. You would have told me if I look like walmart photo girl right? Hmm can I really trust you? “
 
So as of now you are thinking holy narcissism woman, who cares about your selfie Facebook picture. I promise it is worth it.

My Facebook friends (who are asses because they didn’t mention this BEFORE) pretty much confirmed my suspicions.  I continued it further by really deciding if it was bad 80’s creepy photo or more of a school picture.

That is when the awesomeness ensued…

I kid you not, this is where the asses became the awesome.

I was sent this…

 

Oh yes and this…

Then this…

If you were wondering I am leaving the original as a profile picture for awhile. Mostly because I don’t feel like showering and doing my hair in the same day but also because it reminds me that my friends are asses, but awesome asses!

HOUR LATER UPDATE: My amazing blogging buddy pal saw this and said “I did tell you that. I made a Walmart comment.” Sure enough on the original pic in with the comments was “Vicky the awesome chick from The Pursuit of Normal “Wow! Walmart had some creative backgrounds. Just kidding;)”