Thinking Out Loud

So here I am, upright and alert at 1 am. The upright part is a constant struggle, but the alert part, happens a lot. I told myself I was taking a hiatus from blogging, and I certainly have kept true to that. The problem is, the mind didn’t stop writing. For me, I find myself composing a million entries in my mind, but not having the willpower to physically bother to just type it out. It’s like that is one step too much a lot of the time the past few months. So I lay there and think about things. Religion, politics, the state of my health, family drama, sometimes zombies after watching too much of The Walking Dead. I craft it all out in my head, what I would say, IF I was writing. Telling myself that the therapeutic value of writing is something that I have found helpful in the past, but still, not actually getting up and doing anything about it. So, still in the fashion of not making promises to myself I don’t know if I’ll keep, I sit once more trying to jumpstart the disconnect between my brain and putting it down on paper (or blog as the case may be)

I have been though a lot since I was doing this as a regular thing. My health has been a roller coaster of coming to terms with the way things are and trying to manage life as things get thrown at me. I spent three months recently not eating enough to sustain energy to function, because Gastroparesis decided to take over my body on top of the Rhuematoid Arthritis becoming increasingly hard to manage. Spending days on end fearing and steering away from food, having my joints uncontrollably ache to the point of needing extra assistance walking and surviving in general just sum up a pretty miserable winter by most counts. We have been adjusting to Ken working nights, sleeping days and not quite knowing where I fit into all that. Digging out of financial issues, trying to retain a tether to friendships I haven’t been able to keep up with, and going into a pretty deep depression have dominated all in the past few months. At one point, I just wanted to curl up in the most remote corner of my house, with a blanket and just not think anymore. The freedom of stretching out in bed seemed even too overwhelming some nights. I went off pretty much all my medications and am currently struggling to get back into a regimen that keeps me as functional as possible. I had plenty to be thankful for, yet bringing myself out of the pit was something I just could not seem to undertake. Sometimes its hard to think about the reality that it probably WON’T be the last time I go through this sort of thing. That I just have to keep moving on and letting myself take the time to rest and reorient as needed. Lather, rinse, repeat.

At the moment, we are dealing with the logistics of having our car damaged in a car accident, dealing with insurance and the waiting game of getting our car back. Ken is on his way out the door for two weeks military assignment in Hawaii, which doesn’t include me, and I’m jealous about that. He better look sufficiently sad in every picture he takes, the nerve. I have to mentally and physically prepare to drive up to DC for a few days, mostly to help out my grandmother with some stuff, maybe feel good enough to enjoy a few things while I am there. It certainly helps that the rental SUV we have at the moment, I thoroughly enjoy and I might have to give it back with great sadness when all things car are completed.

In other news I have been craving eggs on my burgers lately, and its kinda been non stop on that end…I want one right now actually. Which reminds me, our oven is broke and I need to call that in.

Brought by the Letter M.

Sooooo, a murder victim was found behind my house a couple of days ago. Like directly behind my house they dumped the body. Thankfully I don’t go into my backyard area much or my therapist would have a whole new set of issues to deal with.

As the story officially goes now, a guy killed his girlfriend in a fight and then tried to dump the body behind my house. And someone came across it. When the police went the the woman’s apartment her baby was still inside. And they arrested the guy. I appreciate how everyone in our neighborhood was also notified of the situation via letter in our doors, like when you get a Chinese menu in your door. Only this one was like “FYI, there was a murder today….”

I would also care to mention that this happened when I arrived home from my appointment with psych where I was told officially I had General Anxiety Disorder, PTSD, and Bi Polar disorder. It was a LOVELY day. But there we have it folks. The official reports are in on what I have been going through the past few years that have exploded the past few months. I took the weekend off to process the information, even though I’m not surprised and I was prepared for what much of the personality assessment had to say. It’s just so, sobering, to see yourself, what makes you tick on the paper. The good, the bad and the ugly, and agree with it because you do know its true. There were things I was proud of on that paper, traits I wouldn’t give up, but also things on there I would trade in a heartbeat not to have to ever feel again. If only letting go were just that easy now that I know about it. If just seeing it could cure me and free me of this mess. It’s just not like that.

So instead, I’ll be meeting with a doctor to work out a plan to stabilize my moods and control my anxiety, and I’ll work on learning how to cope and process information in a healthier way with my therapist. I think the next question down the road is, will knowing all this be a opportunity at a last attempt at communication with my parents, or will it be the last break for me before I have to say enough for my own health and really move on in a more drastic measure?

I’m My Own Spy, How Cool!

I was not able to meet with my neurologist this past appointment but rather the Nurse Practitioner in the practice who was probably about 60% annoying and about 40% just ok at her job. I really love it when medical professional tells you “This is totally manageable” and then proceeds to strip away every last piece of your life you had, to manage it and say “but your issues are just so complex you see.” Shut. Up. Now.

So one of the conclusions of my neurology appointment is this:
I’m left with the forced choice of getting off the pain meds in favor of seeing if the migraine days can be lessened due to a narcotic induced backlash. Not no migraines, just a couple less migraines. So….bring on the full body pain apparently. While starting the full body PT for the arthritis and fibromyalgia to test my mobility and fatigue limits and other thresholds. More ammo for the old medical record there to prove I’m trying everything to be compliant here in my own treatment.

(Sidenote: Also if one more new doc asks me if I’ve “tried lyrica, cymbalta, savella” after seeing I’ve had fibromyalgia for 10 years I’m going to do something very inappropriate. It’s like asking me if I’ve ever “tried toilet paper” after taking a dump because I’m having trouble with cleaning my butt. WE HAVE ALL TRIED LYRICA, WE ALL KNOW ABOUT IT.)

The exhausting notion of writing down everything in my life from what I drink, eat, smell, think too hard about. To weather conditions three times, every day. Almost to the point of when and how much I shit per day. All in the name of migraines. So I can look back at some point, and have that “ah ha!” moment, and realize that eating fava beans, a steak and jelly on the same day where there is in a cloud in the sky will surely set off a migraine 24 hours later so I need to be sure to AVOID THAT SITUATION AT ALL COSTS. Just one of many potential variables I could discover.

I mean I have no concerns of government monitoring at this point. I AM THE NSA, recording the every whim of my own body and thought.

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My sweet chronic pain app.

Now let me clarify, logging my headaches and tracking my pain logs are not new concepts to me. I have a wonderful app on my phone and I have done it for months. This app is SO extensive, it’s overwhelming. It’s such a joy to do in the throes of excruciating pain of a migraine or the mind numbing fatigue of fibromyalgia too, I’m here to testify. But having explained to me like it’s this new full-time job is just reiterating the fact that I really have no life outside of monitoring what goes in and out of my body, paying our bills, dealing with family, military, getting Ken through school, my other medical appointments, and trying to get up every day and breathe.

And still facing this large faction of my family that feels as if I’m using my health as a crutch that I refuse to “just get better” or I’m “avoiding actually getting a job” makes me want to burst into tears constantly.
I swear amongst my coping issues, a huge weight off my anxiety levels (which were also brought into question here, as if I might not be aware or unwilling to do something *silently screams* about it) would be some actual acceptance, so I don’t have these voices in my head that I know I’m going to have to contend with in person next time I make a phone call or a trip home.
Hence why when Ken and I discuss these things we totally reach the conclusion sometimes that we are totally fine in our little bubble because Ken lives with me and never ever has expectations of me that are unrealistic. He’s united in the same hate for the way I’m treated. I’m so lucky for having that, he deserves a parade every weekend. If I only wasn’t too sick to do it. I have some groupons saved up my sleeve though for some kick ass dinners though, that I’m hoping we will be able to enjoy. When we have more time and money this guy is getting something totally indulgent and D&Dish.