The Game Changer

"How you been doing," Jessica asked as she walked into the examining room.

"Hangin' in there," I said; loaded response, wouldn't you say?

"Have you started back to school yet?"

"No, I've not been able to make that happen yet," I said earnestly.

"So tell me, why just hangin' in there" She asked, notably alarmed by my response.

I thought of doing as I have always done with medical providers, and as I found myself doing moderately with my neurologist a few weeks prior... and gave bare minimum.... but this time around I did it all...  I opened up about what was really happening. The good, the bad and the ugly. Without playing it off like I was okay. Because ... I'm not!

As I spoke to my PA, Jessica, at Dr. Aurora's office, I was moved to see glistening tears in her eyes as I told her about my struggles, not just the medical, but the mental and financial. I dived deepest into the incidents of the most recent past- and how Id not been taking the Topamax and was still experiencing the memory issues, the aphasia, and dyslexia. In short, I told her everything I needed to tell her as my medical provider.

She told me before when she first brought up my depression in February (before I had mentioned it to her) that is was clear I was the masking type- and something in our conversations, however brief and professional, led me to trust and confide in her completely.

I told her things I hadn't told even my closest family members or friends about how I was struggling so badly that I haven't been able to afford my medications, even after insurance, they range up to 200 a month for everything. On top of a new car payment and insurance premium, this was too much and to eat and have gas money for work as well.

I let her know how I was struggling with getting out of bed in the mornings and how short lived the relief of the first tap had been, and how less lively the relief from tap number two was.

I told her how I was struggling so badly that I was about to give up my apartment, and in my own mind, my independence and move in with my brother Chuck and his family for a few months to get myself back on track, and take some pressure off, helping them in the process. (thankful to Chuck, Amy and Seth for allowing me to do this!!- but upset, angry and disappointed in myself that I need to do this. "my fault" or not, dammit NO! Just f'n NO! I've busted my ass to get where I am, and I haven't done anything wrong to jack things up like this- so why am I being "punished"- not punished living with my brother and his family, per say, but I prefer to live alone and don't ever want to be intrusive or burdensome on anyone- why now?)

I told her how humiliating it is to have these episodes of memory loss so acute that each and every day I am triple and quadruple checking my every step to a point I sit still unable to function at times; totally overwhelmed. Sometimes a full day will go by and I won't know what I did aside from the positive interaction with the visitors and the calls and immediate needs that would come up. As long as it doesn't require any problem solving, or in depth memory tasks, I do okay- anything beyond that, even things that were once second nature to me - gone.

I told her lots of things as she asked questions leading to more struggles and more issues that were building up- most of which the root cause being my disease.

She used some of the greater active listening skills I had seen in a medical professional, and she didn't blow smoke up my ass, or try to sugar coat anything. She did however still maintain that there could be a ray of hope for recovery, but noted that this was not going to be an overnight process.

Jessica doubled my antidepressant, researched every medication to find the cheapest place for each and then came the game changer.

Again, here paraphrasing:

I would say its time to talk to your employer about short term disability. I really think its vital for you to step back and focus on your recovery. The stress it puts on you to continue to try to make things work that are beyond your control is counterproductive.

Short Term Disability.
Short Term Disability.
Short Term.
Disability.

The words reverberate in my mind and made me both relieved and upset.
Relief that what I had going on was legit and serious enough for a medically excused absence... and upset because damn it, I'm a strong independent woman who has never not worked. Im the person with two jobs, a fulltime course load, and doing freelance photography jobs as well until all of this came along and threw me a curveball and kept knocking me back down as things got worse in ways I never dreamed.

My initial response to the disease was FEAR that I would go blind, and not be able to see to read, write do my photography and photo edits I so love. I prayed to God to keep my vision, and he did. My eyes are perfectly wonderfully healthy.

The problem is the flip side to that- with the severity of my disease, is I am losing cognitive function. I have good days and bad days. I have memory loss, and my ability to problem solve is at times remiss completely.

Some days, I surprise myself and feel almost totally normal until I try to focus and then I fall flat on my face with disappointment that I cannot seem to pull it together no matter how hard I try.

I'd thought of that In reality as I was dropping out of classes in January, I was also considering how foolish I had been in the fall not to have taken that add on during open enrollment.

I realize I cannot continue on the path I am in my job and do any good for my position- but what could I do short of resigning. But what would I do about insurance and medical care then? What would I do about another job, what job could I do? I can still do my home health care. But the pay is crap in comparison. The benefits, essential. And then the photography- I am effortless with this.. its one of the easiest things for me- photography- it seems (thank GOD) to be untouched.

The next logical step is FMLA

The problem is I have used over 150 hours of sick and vacation time this year alone in dealing with this disease and am out. OUT. down to a few hours at best, between the two.

She told me of another option, still with FMLA, but wherein there was the ability to use it intermittently as needed rather than for a set, extended period of time. Those days will come without pay in the absence of leave time, but will medically excuse me, preserve my position and give me the opportunity to take off as needed.

I left her office both broken hearted and feeling a sense of acceptance. I have shard my struggles little by little at work, and my supervisor and management have been very kind and understanding. My partner has listened as I've cried talking about how pissed off, and hurt I am that I just can't seem to "get it together" but at last, I have in my opinion some kind of evidence that I'm not just exaggerating the situation. I had started to wonder if psychologically I had been for some reason.

The conversation I had with G not too long ago, G being my partner at work- and longtime dear friend... is that I felt like I have repeatedly been on positive paths and am consistently given roadblocks to which I have in my opinion, gracefully and sometimes clumsily found a new path and carried on, despite those setbacks.

I told G that I felt like I was where I was supposed to be though and as right as it all felt and seemed for me, God didn't want the path I was on and I had been too stubborn to have listened when he had tried to lead me elsewhere so he sent me this lightning bolt... and with this, he said it is time to sit down somewhere and be vigilant.

Like it or not I have a brain disease and it is stopping me from doing what I need to do-
But I am (despite the bad days) keeping a positive attitude, and going to do the best I can with what I have- and try to take it just as it comes- One day at a time.
Truth be told, with this disease it is often more like hour by hour... but Ill take it as it comes- either way.

Like my wonderful supervisor 'The Bristoll" had shared with me in a quote she gifted me a few years ago... (quoted in an earlier blog, I think) "Things generally work out best for those who make the most of the way things work out."
She was wonderful by the way, when I came in and told her about Jessica's advisement and the intermittent fmla. I knew she would be. I also knew she understood my struggles- but it had never prevented me from feeling like I was letting her down when I couldn't "get it together".

Truth be told, I am not the same person I was for the first two and a half years of my employment there.. and I don't like the person I've become. No excuse makes the shell of a person I've become acceptable to me, even a medical one.

I'm so fucking frustrated! (sorry for the cursing, Ill try to limit it- but if we are being real at all in this blog- the good the bad and the ugly will be revealed!) And once in a while- ever so often The F bomb is the only appropriate response I can come up with to convey my emotions!

So... I gave my notice to my landlord, and shared the reasons why and a copy of my dr excuse- just so he knows. He has told me he gives me an A+ rating and welcomes me to use him as a reference when I'm ready to get myself back in to my own place! Stellar! I love my apartment though and as much as I know I need to move- I DONT WANT TO!

Trying to find the silver lining here- and coming up with only gratitude that my brothers family is able to open their home to me, and glad to get to spend more time with them! That's a pretty silver lining, even if the flipside is so ugly to me.

Snapchat after my last spinal tap... you can see the pain in my eyes and forehead...

I know I've blogged this 3 times in one day, but I wanted to get everything up to date so I can start my regular posts as they come. I hope to do daily, but if you've followed my blogs at all or get the jist of this disease, please just know I will do the best I can.

Painscale 1-10... Currently an 8.
I realize that it may seem I am doing a good job (despite poor grammar and typos) to relay the events and situation here... But it is not without severe pain to do so.

Time for some more medicine... and then hopefully soon- sleep.