Showing posts with label Crohns disease. Show all posts
Showing posts with label Crohns disease. Show all posts

Wednesday, February 8, 2012

Doppleganger Days

My doppleganger returned. I don't even know who she is, but she looks just like me, sounds just like me and she gets inside my head. However, she is the furthest from the "real me" than I can ever imagine.

She is sick. Not just with a cold or a stomach ache or something that can be worked around - she is bedridden. She is imprisoned by pain and her only journeys from the bed are to the bathroom.

She doesn't eat. She can not write or read or watch TV or even participate in normal conversations. Every time she arrives I am caught completely off guard.

I fight her, but she has allies within. She has somehow won my body over and I must lay in defeat as my system turns against itself. I wonder if she has never left and I only dreamed of moments of humanity, of personal connections, of health, of anything that could be perceived as progress. I wait and cry and pray that she'll leave, but have no idea how to show her the exit.

I hate her. But I can't. She is me. I am sick. I have two chronic diseases, one of them is a rare disease, and this is what life is like. Like everyone, I have good days and bad days. The only difference is that my good days are not as fantastic as a healthy person's and my bad days are so much more extreme.

My doppleganger threatens to stay for a while on this trip (this is day 3 where I find myself typing my story on the notepad in my iPhone while still laying in bed) and thoughts of hospitals have danced in my head since her arrival. But what will the professionals say? "It must be a flare up," or when I remind them of my rare condition, they'll all freeze, "Perhaps you should see your specialist."

Perhaps, if I could get out of bed I would see someone, but what can be done once a diagnosis has been made? "Yes, Nicole, you are sick. We actually told you that already. That's why you see us so frequently."

Alas, I will find my way back. I will find pseudo-healthy me again, I hope. I will be pain free for hours on end! I will be confident enough to take a shower while home alone! I will make dinner for my husband and feed the dogs! The world will stop spinning. The intestines will stop twisting. And my brain will become uncrushed.

But most of all, the doppleganger will leave my eyes alone. She can hurt me and torture me on these visits she makes, but if she dares to threaten my vision again a war will be waged at the conclusion of which I know only one of us shall remain standing.

Tuesday, September 20, 2011

Hey Chronic Diseases: ENOUGH!

I have come to accept a way of life that is simply unacceptable.

I am angry right now as I am coming to understand that I gave up on a piece of me.

Chronic disease. Damn that term. I was diagnosed with a chronic condition long before I decided to leave my job, but when I was diagnosed with two it seemed as though the weight was simply too heavy for me to bear.

Understandable. I can forgive myself for caving under that burden. What I can't forgive, or understand, is why I am still laying down on this ground.

I have glimmers of hope within almost every week now. I have nearly complete days where I am feeling close to normal in the health range. I've been able to do laundry, keep up on house chores and cook again. I left the house on my own twice this past weekend. I walked places. I have read three printed books (NOT DIGITAL) with minimal difficulty. I am tapering off of my medication with all of this still a reality.

And yet, somehow, it is not enough.

This morning I got sick again. Not from my brain condition, but from my old-standby - the digestive issues. Before 9:30am I have already been to battle with my insides more times than I can count. So, as I prayed for the pain to stop and for my second attempt at breakfast to stay with me I thought, "Why is this still happening?"

When I asked my doctor this same question after he told me that my colonoscopy revealed I am "in remission', his response was a simple, "Oh, then I guess you have microscopic colitis. You should keep taking your medicine." OK. I'm doing that. However, does having a name to what is wrong with me suddenly make it OK? I felt that way when diagnosed with IIH, but that's because I knew the name could finally guide me toward treatment, this time the name feels like an afterthought, not a tool.

I don't eat gluten. I don't eat dairy. I just found out I still have high cholesterol - WHAT ELSE SHOULD I STOP EATING? And, honestly, what difference does it make if none of the food stays with me anyway? I've lost 40 pounds, should I be happy or scared?

I am not only not working now, I am not living. Based on the way this morning went, I will, most likely be in bed (and the bathroom) most of today. Forget my muscles, now my SOUL is starting to atrophy!

This is just dumb.

Getting so sick caused me to do something that I decided in high school I didn't want to do anymore: QUIT. I hate it.

I am exhausted. I am in pain. But, today, I am finally angry and maybe that's enough to wake the warrior within. 

I don't think any of my doctors have a full grasp of how I have altered my life to garner the "improvements" in each of my conditions they see. It is time they realize that I have had no intention of living like this permanently. It is time that I inform them that I would like to bring my life back up to human speed and, for that, I need them to work with me. It is time for me to speak up.

Tuesday, August 2, 2011

What if there's NOTHING?

This post is written as part of the What IF? Project hosted right here on the Rivera Runs Through It Blog. Each week a new "What if?" question is presented, and, if we so choose, we respond to the query. Below, you shall find my response to the first "What if?" question proposed. (If you have a What IF? question you would like to submit as a possible future prompt, please do so in the Rivera Runs Through It Community What If discussion.)

What if there's nothing?

Imagine...

As I wrote in the prompt for this "What if?" I have heard John Lennon's "Imagine" song an innumerable amount of times. I have sung along, I have indeed imagined that there was no heaven, no hell and that people were living for today. I understood the premise behind the song (and still do), and can validate the argument put forth within it. Our world needs to come together for the here and the now while we share this space. It is a message to us all, not necessarily, something for my solitary consideration.

A New Perspective...

It follows, then, that it is not the nature of the idea of nothing after death that was new to me when I saw that episode of Torchwood that triggered all of this, it was, instead, my perception of the idea.When presented with a resurrected dead man saying that there's "nothing" after death  in the midst of a sci-fi television show, my mind went in a completely different direction than it had once gone with John Lennon's melody. This had nothing to do with war, or peace, or hunger or greed - this was a single human being expressing his fear that what he saw when he died was nothing, just darkness. It was a personal, not global, realization and I think that made all of the difference to me. While John Lennon asked the masses to ponder the idea of nothing after death, this television show presented it to me, alone, not to save the world, but instead to think about.

The Question Haunts...

I didn't say anything. I didn't act on it. I didn't even write about it. The word "nothing" just swirled in my head. I figured I was merely obsessing over the long-term storyline of the Torchwood series.

Until two days later.

We were off to Manhattan to take my mother-in-law for some medical tests. I agreed to go with my husband because he would otherwise be waiting alone for three or more hours. As we were in the car my friend texted me . She had an extra (free) ticket to see that night's show of Book of Mormon, would I like to go? It was about 10 or 11am, the show wasn't until that night. The answer should be so simple, I was headed into NYC, anyway, right?

Wrong.

I have two chronic diseases that can't handle long days of "outside" food and city walking. At 34 I have taken on the persona of a timid 82 year old that must think thoroughly of the mundane challenges each activity lays out before me - will there be bathrooms (anyone else out there with Crohn's disease?), what will I be able to eat (thank you gluten and dairy allergies), and what the heck am I going to do if my Intracranial Hypertension acts up (blinding headaches, vision problems, dizziness and light-headedness). So, in all honesty, there is has been an easy answer for me, for fear of being hospitalized on someone else's watch; it's a very unfortunate, "No thank you."

However, before I could even read the text aloud to my husband, I almost got knocked over by ONE THOUGHT: "Nicole, what if there's nothing?" I don't know who said it, because it didn't even sound like my internal voice, but it changed everything. My internal response, "Then this is it. Then now is what matters." I then read the text to my husband and followed it up with, "It would be ridiculous to say 'No', wouldn't it?" I think he was overjoyed and almost crashed the car that I presented it in such a way!

Needless to say, I went (would I be writing about it if I had not?). I survived. It was awesome. I then continued to do things I normally wouldn't for about three more days. It was all perfect and then I completely crashed, got sick, and needed a couple of days to recover, but - guess what? - that usually happens when I am playing it safe and staying home anyway! Thinking about the possiblity of nothing later, helped me make something of now.

So... what if there really is nothing??

Finally, My Answer to the What IF?

To be honest, if there is nothing, it will break my heart more than death itself. I've got a lot of people (and pets) I've been planning to see. Plus, God and I have an appointment (He is well aware and has penciled me in somewhere in His eternal calendar...) He and I are going to talk - the topic: Why?

Beyond the heart-breaking actuality of nothingness, the possibility of it has reawakened a piece of me that diagnoses, hospitalizations, surgeries and life-altering choices based on medical abilities and inabilities had tucked away into the dark recesses of my soul. I am realistic about what I can and can not do, but I can't forget that living is on my "can do" list! And that is super-duper important just in case there's nothing after this whole game ends!

"Do not let what you cannot do interfere with what you can do."
~John Wooden
 
Only thing left to do now is finally make my bucket list (since I have no excuse not to anymore)!

Thursday, June 16, 2011

Sick Days

I had different plans for what I would post today, but fate did not swing my way. Today is a sick day. In fact, as I am on medical leave from my job, I guess it would be more appropriate to call today a sicker day, since I am pretty much always somewhere on the spectrum of sick.

Today I've traded pajamas for sweatpants, the bed for the couch and sleeping with an uncomfortable relaxed looking pose that is filled with dread. It sucks here and I wish my body would just tell me what the heck it wanted, what it needed to feel, finally at ease. This hasn't been the greatest week, health-wise for me and I'm starting to feel a bit beat up about it, so it is time that I recall what strength can be drawn from the fight through this poem from Douglas Mallock:
Bold Tree
Bold Tree by zachstern
The tree that never had to fight,
For sun and sky and air and light,
But stood out on the open plain,
And always got it’s share of rain,
Never became a forest king,
But lives and dies a scrawny thing.

The man who never had to toil,
To gain and farm his patch of soil,
Who never had to win his share,
Of sun and sky and light and air,
Never became a manly man,
But lived and died as he began.

Good timber does not grow in ease,
The stronger the wind, the stronger trees
The farther sky, the greater the length
The more the storm, the more the strength,
By sun and cold, by rain and snow,
In tree and men good timbers grow.

Where thickest lies the forest growth
We find the patriarchs of both.
And they hold counsel with the stars
Whose broken branches show the scars
This is the common law of life.

                     Douglas Mallock
So, here's to the wonder of my good timber growth and to the days in my someday futur where I can hang a swing from them and just be!