Hello Darkness, my old friend

Currently I am  experiencing a lot of visual disturbance (and periods of intermittent blindness) in my right eye, mostly. I cannot verbalize the anxiety that comes with these “visual events”. It’s pretty daunting to be facing blindness. What I;m proud of is this:

As a means of immunosuppression, my doctor placed me on steroids prior to starting chemo that has me unable to sleep for more than 2 hours at a time. As well as this and not being able to sit still, I’ve been pacing on a hardwood floor. Im experiencing something like painsomnia.

Instead of losing myself in worry, I’m watching Planet Earth on Netflix so that this eyeball can serve out an “I got to see that”/vision loss bucket list of sorts and I feel pretty damn proud of myself for being able to just sit here and be still in this.

Down the rabbit hole …

Had a complete meltdown in my doctors office this morning and in an instant, I had a plan to die and knew I’d never make it home if I left. Sitting in that room, sifting through the past month’s tests and prescriptions, hearing that staying the course is the only way through. I told her that I felt overwhelmed emotionally and was physically immobilized. I can’t be poked anymore, tested, gnaw at my nails awaiting test results while my vision sporadically leaves.

There’s just no words to describe how weary I’ve grown. Yes, I’m a strong woman, but this appears to be my tapping out for the time being.

Now, I sit in an emergency room a few floors down from my doctor’s office with a 1on1 nurse. I’m still in pain. My circumstances have only gotten worse by choosing this path to take care of myself.

Fuckin A.

I feel complete hopelessness. Everything feels nihilistic.

As Rafiki said: It Is Time

Sometimes, maybe destiny just slaps you right in the face.

I’ve been up all night with painsomnia and stomach junk. I was feeling depleted enough at sunrise to doze off. Then my alarm woke me up (1hr and 23mins of sleep according to my FitBit. This little electronic, sin against fashion that I wear in a rose gold color upon my wrist.) I awake to not being able to see out of my right eye. This is a fun, new-ish symptom from pseudo tumor cerebri. That’s right, folks. It is literally, all in my head. My body and brain believe that there is a tumor in my body (my cerebral area; see also spinal cord) that isn’t there. This means that I have all the symptoms of a brain or spinal cord tumor however, I do not. It is as much fun as it sounds to be. To be clear that would be none for anyone who might have missed it. And also; excruciating abdominal pain that left me in the fetal position. Clearly, an awesome way to start the day.

Luckily, my trusty productively distracting iPhone was within reach and I was able to silence the alarm and also message Ms. Teenager Diva to get up for school to no avail. I call out for Tessa to go audibly, or physically, wake her up. I text my Momma and ask if she can transport today. Normally, Tessa would be the one I would ask for this, but yesterday her truck broke down in process and it was a WHOLE thing. Momma stepped in this morning.

Continuing the juggle flow I have going, I dial my psychiatrist, Dr. Loris, to painstakingly explain the current predicament which will require me to cancel, last minute, an appointment I requested ASAP less than a week ago. Frankly everything I just said is self-explanatory. There are way too many things being juggled and I cannot keep up. If my medical history has taught me anything it is: the one thing I can consistently expect is that my physical body will break down under tremendous mental stress. I obviously am a glutton for punishment because I decided to soothe my soul by self-talking shit to myself.

Loser. Burden. Shameful. Worthless.

Again, the smartphone saves me. I open the Instagram application to access a folder of saved affirmations. Before I can even get to it, one of my favorite authors has sent this brief message out to our souls:

There it was again. Another tickle in my brain making my hair stand on end. It rings the bell of one of my first and purest passions: writing. The signs point and illuminate this path again; and I cannot resist the luster.

I shall start with editing current website content. After that I will finish the drafts I have. There may be an influx of notifications, all apologies; and also it is time.

Onward.

I’m not going to “get better” and it’s ok.

If you had asked me four years ago, when my failing health finally pushed me out of the workforce, what the hardest part about “being sick” was, I likely would’ve talked about the physical pain or mental anguish of facing my own mortality. Recently though, it’s been others’ response and receiving “feel better” sentiments. It’s not that I don’t appreciate them because I most certainly do appreciate anybody’s care and concern for me. It’s a cold world and any notion of warm in welcomed.

Maybe it was just easier to take ten years ago when I was hospitalized with “the unknown virus” and sky high fever for a week. Then the initial fibromyalgia diagnosis. Likely because that’s when I still believed I could get better. But when my miscarriage finally pushed my immune system out of whack and the vision loss pushed me over the mental edge, I was down for the count. It took another year before they found the antibodies and scleroderma attacking the tissue throughout my body, destroying my gastrointestinal tract and causing gastroparesis.

Now, the thing is … I’m not going to get better.

I realize people don’t want to hear this. I get that we wish things were different. People may even think I’m giving up, when in fact I’m simply giving in to the reality of my new life. This is something, through cycles of hoping and feeling disappointed, deciding to give up hope in order to avoid the pain of disappointment and the sadness and then the relief of surrender, that I’ve accepted in the years since my diagnosis.

This much I can tell you: Nonacceptance just increases suffering and I think the one thing we can all agree on, universally, is that we don’t wish to suffer. Acceptance doesn’t mean that I’m rolling over and taking it either.

It’s just that I have finally arrived at a point in my life that is all about accommodating to realities,  living a life worth living despite my limitations and appreciating so many ways in which I’ve “grown” only because of this illness. If it weren’t being trapped in my house and bound to my bed, I wouldn’t have realized how many of the little things I miss on a daily basis. Perhaps these are things that other people can appreciate without being sick and having so much time on their hands to roll things around in their brain, but for me, that’s what it took. For that, I’m actually very grateful.

Maybe at this point you are asking yourself what you should say or do if you have someone in your life with a chronic illness. The one thing I want you to take away from this is that we don’t need you to make it better.  We need your time, compassion and most importantly, your love. Only love can make it rain the way we need it to. Only love can quench the thirst we have for life that we may be having a hard time experiencing for ourselves. Texts and emails are great, but phone calls and visits are more sincere. Your time is such a precious gift of investment in our knowing our worth hasn’t diminished because of our illness.

Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it.”—THE BUDDHA

Chris’ Healthy Heart Fund

Guys, this is my beloved cousin, Chris.

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On Sunday, February 8th Chris went to the ER with severe abdominal pain. The doctors at UNMH determined that he had a blood clot that was preventing blood flow to his kidneys.

Chris did not realize it at the time, but he was experiencing Heart-Failure.

Chris’ Heart-Failure is a side-effect from his pre-existing diagnosis of Atrial Fibrillation or “A-FIB.” If not treated properly, A-FIB causes blood clots that can result in stroke, heart-attack and other dangerous outcomes.

Chris’ heart has been determined to be at a 20% ejection fraction measurement, where a “normal” heart should be between 50-70%. (This is a measurement of how much blood the left ventricle pumps out with each contraction.)

…After 10 days of being closely monitored, Chris was released on Tuesday when medication began to stabilize his condition.

We hope to get Chris’ numbers up over time. His condition is not curable but it is manageable with medications and serious lifestyle changes.

Chris needs rest. He will rely on a number of medications for a while; some of them he will be taking for the rest of his life.

Chris still has a clot near his heart that is preventing him from getting a shock-treatment that would likely improve his situation.

Chris’ existing health insurance expires in March! His doctors have advised him not to go back to work until his overall health has improved considerably.

This fund will help assist Chris with medical bills and will help support a program of healthier eating.

Chris needs all the help he can get as he is transitioning to Medicaid (and whatever else he can apply for), during this financially stressful time.

http://www.youcaring.com/medical-fundraiser/chris-nelson-woods-healthy-heart-fund/308050#.VOoKe414m7s.facebook

Random Ramblings

– I finally finished reading ‘Daring Greatly by Brene Brown today. The book should be required reading in the class of “LIFE”. Its been life altering for me. I highly recommend it. For everyone. You should also check out Brene’s TED Talk videos. Absolutely amaze balls stuff can come of this.

– I spent my evening in the ER at Metropolitan Veterinary Hospital. Apparently my littlest, but oldest furbaby, PNut, like PDiddy but smaller and way weirder, because he thinks he’s a big dog but also a cat, simultaneously, ingested something square shaped. $250 later, we are taking him home to watch for vomiting and bloody stool. We live large! Saturday night’s are lively around here!

– I am nearly finish with importing and editing my posts from across the interwebs to their final destination here in Stephieopolis. I gave myself until the end of February to complete this task and the closer I get the more I find myself procrastinating. It’s not just this. I seem to like to see how close to the edge of things I can get without plummeting to failure. Except I dont enjoy it but continue to do it so then it begs the question: Why? I have no fucking clue. Maybe it’s a part of my mental illness. Maybe I find it somewhat exhilarating to push myself. Honestly, I dont know. Am I the only one who does this?

– My stomach is still causing a raucous. As I type this Im forcing myself to drink a milkshake. A milkshake may not seem like something that would truly need to be forced, however, when everything you ingest causes pain, it’s tough. I guess you could think of it like sex without lubrication. Sex is great but if it’s going to leave you uncomfortably raw, you might feel differently about it. Just sayin. Now, lets take some drugs!
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– I am 463% done with winter. Old man winter has been a merciless, mean bastard. He must be stopped!

Through the fog: An Elegy

Lightning strikes
The drug seeps in my veins
Teardrop on a fire
That smolders the pain.
Watch as I descend
into an abyss of fog
My defenses down
I begin to shadowbox the devil’s dog.
That bitch always rears her ugly head
to let me know
How weak I am and out of control
Just as fate’s hand is finally shown.
I’m lost for words
It’s too much for one soul to bear
I search for anyone or anything
That might still be out there.
I need that healing fountain
To overflow
To soak my feet
And through the fog, begin to glow
The light of hope
Or at least respite,
For some salvation
I am desperate.
I settle in
In this fog
And pray for endurance
To continue this jog.
Through the diagnosis
Prognosis and wait
It matters not how strait the gate
I will be master of my own fate.

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What happened was …

Last June (2013)  I became very ill.

Between June to September I was sick on my stomach EVERYDAY. Nothing I ate stated down or in for very long and I was constantly nauseous. CONSTANTLY. Let’s stop to think back on the worst stomach flu or maybe food poisoning you’d ever experienced. Now try to appreciate what it would feel like to be that sick Every. Single. Day.

I was exhausted all the time, even when sleeping upwards of 16 hours a day. My hair started to break off near the root, leaving me with very itchy patches of stubble here and there on my scalp. Oh, and I also started dropping weight like crazy.

Being a female, I’ve been dieting since I was ten years old. I’ve done fad diets like Atkins, South Beach, 30/15, cabbage soup, I’ve done the calories in vs. calories out, I’ve lost 80pounds and gained it back. I beat my head into the wall trying to figure out why no matter how much I worked out and how little I ate or carbs v. protein, after having kids, the weight just wouldn’t go away. I figured out through testing that it was due to polycystic ovary syndrome and I guess that made it ok in my mind that the struggle existed, well at least it made sense. I promised to keep up the exercise in order to be healthy. I stopped being worried about the number on the scale. So, go figure that once I arrived at that point, my health went in the shitter.

For the first time in my life I was dropping weight without trying. People started to notice and tell me how awesome it was but I couldn’t agree. Having put health over scale, I knew there was nothing awesome going on. It was bad and I was scared. This tells you how absolutely shallow people can be. I am embarrassed that I had ever fallen into the thought pattern myself. Seriously, people, there are WAY bigger things going on in life and world than our weight. It’s superficial.

Anyway, I ended up having to go see a gastrointestinal specialist. I found out that I had this disorder called gastroparesis which is quite literally what it sounds like paralysis of the GI tract. The doctor said that he had additional concerns (because already losing most of your vision and having a stomach that doesn’t work wasn’t enough) because he believed that it may be autoimmune in nature.

Then I was sent to see a rheumatologist at the Cleveland Clinic. The way she reviewed my paperwork and gave me the once over made me uneasy. It was like a stereotypical therapist on TV who says “mmhmm” and makes notes after everything you say and you’re sure something you’ve said has revealed some deep down personality you know nothing about. I felt very vulnerable. The hospital gown didn’t help.
She runs blood work and says she will call me with the results.

Turns out…I have an autoimmune disease called scleroderma. I won’t go into the details because frankly they tend to send me into some sort of post traumatic stress. Basically it means that your body attacks the tissue in your body, producing too much collagen causing the tissue to harden. Not just your skin, but any tissue, like the tissue that is a part of your vital organs. Since It seems that I already have internal involvement….well, it is likely I will develop “complications”.

And that’s the explanation for my hiatus here. Now that it’s all out on of the table I will try to carry on.

Cursed

Aside from the abdominal pain, well, more accurately, pelvic pain from whatever is going on in my special lady area, I also managed to hurt my back.

I got the general achyness/pain after attempting to go all gung-ho on cleaning out our rooms and organizing to boot. Then, I almost fell down the bottom flight of stairs, but was able to teeter and balance myself out all ninja like and hang onto the door handle.

I beginning to feel like I’m apart of that ‘Final Destination’ movie. Ill-fated … plagued … cursed.

Before I start to worry about being paranoid and my mental illness doing me in, I mean, don’t you sorta have to believe that when bad things continually happen, if you believe in being blessed when continued good things happen? Seems practical to me. Is that the voices talking? lol

Anyways, later in the day, Cleveland Clinic calls with my test results and they’re positive for anti-retinal antibodies and apparently what that means is I either have AR (autoimmune retinopathy) OR CAR (CANCER retinopathy)

Let us stop for a moment and appreciate this. Not only can I go blind and lose my mind, but I may have cancer as well? Hahahahaha. I couldn’t make this stuff up.

More bloodwork and testing …

 

Diagnosis

After almost 8 months of eye pain, vision loss and test after test that led us nowhere, I got an answer today and Im still not sure if it really is one or a definite answer. I still don’t know if can move forward with it or get proactive about it. I guess it’s an answer. A diagnosis, but the PROGNOSIS is questionable. I thought I would have more relief, but I just feel … numb.

I feel confused now thinking back on it. I have questions. Why didn’t I ask them?

The answer was central vision loss. That wold explain why my eye is missing details, i.e. can’t read small print, can’t focus, miss details in faces.

But what caused it? Is that why bloodwork is needed? Will the bloodwork only support the diagnosis or provide a prognosis as well? And what exactly should I be doing in the meantime? Is there anything that I can do? Should I be learning fucking braille? Why wasn’t it found by Batesy? (different neuro-opthamologist) Different equipment? Different test? Does it mean its gotten worse?

Im just fucking confused.

I need to make some phone calls.