Hey Mister Therapy Man.

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Melancholy.

It’s that time of year again.  Normally I’d say it’s the season of mourning and the season of change, but this year?  This entire year has been full of nothing but change. Change for the better.  Change (my health) for the worse.
The entire year.  This fall, I’m not really mourning too much, even though it’s approaching the anniversary of the passing of two of my friends.  I suppose all three will hit me in January when my ma’s anniversary rolls around.  Meh.

This year, this season has me in a mellow mood.  I’m remembering a lot of the people I’m missing through my senses.  The smell of burning leaves reminds me Adam.  The chill mixed with the smell of my leather reminds me of Mike.  Fall reminds me of all the bonfires of the past.  All the coffees on the pier.  All the people I miss desperately at this time of the year.  The man who helped pull me out of the gutter takes up most of my spare thoughts around now.

Regardless, I love Autumn.  It’s the ultimate season of fires and beers.  Cuddling and coffee.  It’s the season of pumpkin picking and decorations.  Some of my fondest memories are from Autumn, obviously.  Something about the smells of the season make it that much easier to attach people to.

So tomorrow is my first appointment to get my Remicade Infusion.  I decided this evening, while curled over my stomach, that I’m all for this med.  I also decided I’m buying a robotic body as soon as the technology is available.   Come on now, who can honestly say that having a robot body isn’t the coolest idea ever… only if it comes equipped with laser eyes.  Oh.  And no Crohns.

So yeah, I’m still slightly nervous about the side effects of the drugs, but at this rate, I just want to feel normal again.  That 3 week stint of “remission” from Humira was like dangling the proverbial carrot (or in my case cheap beer) in front of my face.  It gave me a taste of near-normalcy and now I’m extra eager to feel that again.

I don’t feel horrible, don’t get me wrong, I’ve felt much worse.  Much much much worse before, but I’d like to enjoy a tiny bitty bit of Autumn healthy before it snows.

“Stay low in Mexico, and they go, Stay in Mexico… it never snows in Mexico!”
-Justin Nozuka

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Friday. Totally not the same as Monday.

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What a week.  What a fucking week.  Mine isn’t technically over yet, I still have my last DUI class tomorrow, but then the relaxation starts.  After this week though?  If I wasn’t completely comfy in my kitchen with my tomato soup, grilled swiss cheese sandwich (yes seester dearest, it’s delish!) and the kids in the front room watching a movie I’m pretty sure I’d have killed someone by now.

It’s just been one of those weeks, nothing horrible happened, it was just long and tedious.  Frustrating issues at work, lack of sleep, Crohns still acting up, you know, the little shit that just annoys the crap out of you until you want to throat punch your own grandma.  That aside, I got a lot done this week.  Court, Doctor crap (next week’s going to BLOW), work stuffs, house stuffs, and hashing out some crap in my own head.  Plus I got to spend plenty of time with the boy.  (whom by the way earned himself many a points by cooking me dinner (again) and helping me with odd jobs around the house)

So I think I’ve come to terms with going on Remicade.  My first infusion is scheduled for this coming Wednesday.  I’m still nervous, but I’m okay with it now.  Obviously this is the logical next step.  Pentasa, Entocort, Prednisone, Humira, among others have long stopped controlling my Crohn’s Disease or my fistula.  Diet, Exercise, and lifestyle changes (no, I haven’t managed to quit smoking yet… that’s on the menu as soon as I get my driving privileges back- the week of Sept 24th) do help the Crohn’s disease symptoms, but nothing seems to be healing this fistula.  I’m trying to avoid surgery at all costs, so this is next.  So wish me luck boys and girls!

I’ve also managed to completely get over the whole Tracy and Jason thing.  Sure, I still wish I could get the money they owe me back, it would really help out now, but being angry isn’t going to do anything but waste my time.  I’ve left it up to Karma, I’m a firm believer in it, hence why I spend so much time trying to put good energy out there and not dwell on/or involve myself in the bad.  If you wrong someone or act negatively, it’ll come back to bite you.  It may take a while, but it will.  Hopefully when they have to deal with it they’ll learn a lesson, all I want from them is a tiny ounce of remorse.  Other than that I hope they both get to where they want to be in life.

Other than all of that nonsense I’ve just been living.  Doing my best to plow through this DUI stuff and focus on my life.  Staying in (mostly) has done wonders.  I’ve definitely learned who my real friends are and reinforced those friendships and have gotten a lot of work done on my house.  It’s definitely a bonus that I’ve got to spend plenty of time with Ryan, who I’m sure is getting sick of me, but either way that makes me smile.

You know, I honestly thought I’d *hate* staying in so much and not being able to drive, but quite honestly?  The only thing that I dislike about it is, or rather was, having to worry about my rides to work, but even that has worked out in my favor and I got a friend out of the deal.  I actually look forward to spending my weekends relaxing at home with my kiddo, and have only gone stir crazy once.  If I want out, I can find a ride, in the mean time, I cherishing spending time at home.  I honestly think that once I start driving again in a couple of weeks this trend will continue.  Especially once I go back to school to finish my degree.  I guess in a way this DUI has kind of set me straight.  Or rather made me grateful for the things I do have like my kiddo, good coffee, and a cozy home to come home to (among many other things).  Plus this time at home has been letting me sort through some issues in my own head and decide what paths I want to jog down in life, as in school/career choices, relationships (love and otherwise), and hobbies.  Plus, in another way it’s given me a break from the hustle of my life.  Don’t get me wrong, life is still hectic as all get out, but in a different way.

I don’t know.  I think I sound like a prozac commercial, but in the last few months I’ve been waking up smiling and going to bed smiling.  I’ve got great direction, great people and happiness in my life.  Finally, after all these years, despite things not being perfect, I am at peace.

Tired.

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When you’re young, when you’re a little child, the idea of hope is a lot different from an adult’s.  Hope means so much more, or less depending on the way you look at it when you’re grown.  As a child, hope is simplistic.  Hope is basic wants, needs and emotion.  You hope you don’t get a mean teacher.  You hope you get to play in the first snow of the season.  You hope you can go see a movie.  Even in the tougher situations, you hope your parent heals, you hope you get fed, you hope it stops hurting.  Hope is what keeps us alive, it’s what keeps us going when we don’t think we can.  Hope is what drives us.

Hope irritates me.  As we grow, as we age, hope becomes a lot more complex.  Of course we still have the basics, but it goes much farther than that now.  Instead of hoping I’ll get better, I hope that I’ll get better with out surgery.  I hope that my medications won’t harm my body.  I hope that my hair won’t fall out.  I hope that 10 years from now I’ll be happy and healthy.  Hope isn’t a one sentenced thought.  Hope becomes a tunnel dream.  Hope eats up your heart and raises you expectations, and as an adult a lot of the time it lets you down.

I had such high hopes for my health.  Most of you know how long I put off starting the Humira Injections.  I really didn’t want to subject my body to those chemicals.  I finally agreed.  My hopes soared when I had 3 good weeks of feeling relatively normal.  I agreed to that drug with the hope that my quality of life would improve.

Well.  Humira isn’t working.  I was hospitalized anyway.  Fistula.  Obstruction.  Infection.  I came out and doubled my injections.  I started Prednisone.  I hate steroids and stuck to a milder one called Entocort for the past few years.  It stopped working, so I went on Prednisone with the hope to yet again, improve my quality of life.  Instead I’m feeling every side effect in the book, from moon-face, joint inflammation, to nerve issues and swelling.  My hair is falling out.  Hopes dashed.

So my specialist started suggesting another drug I had turned down.  6mp, it’s a low dose chemo drug used in leukemia patients.  The side effects can be pretty bad, but chances are I’d be able to function better.  I just needed to continue taking my antibiotics to try and close this fistula.  A month and a half after my hospitalization.  MONTHS after my fistula started, there is no improvement.  None.  Just constant UTIs, pain and other not so pleasant things.

My doctor called today.  No 6mp for me.  He gave me my options.  Remicade.  Remicade.  Remicade.  More anti-biotics.  With the hopes of getting me off the steroids because he’s “concerned about the advancing effects”.  “It’s Remicade or Surgery Sarah, obviously Humira isn’t working.”

I have been avoiding Remicade since I was diagnosed.  I don’t like the risks.  I don’t like the idea of infusions.  I do not like it sam I am.  At this point though?  I’m agreeing.  Except for wait.  What was that?  Remicade costs out of the pocket in the THOUSANDS of dollars?  I don’t have health insurance.  I can’t get accepted because of a pre-existing condition.  Medicaid through the state fights me on my medications, for example, I’ve been on Humira since March.  They finally agreed to cover the costs LAST WEEK, and only after my nurse appealed 3 times.  Remicade is almost triple the cost out of pocket.  I explained this to my doctor.  He’s going to have my nurse look into something.  Anything.

So, yet again, for the hundreth time, I’m hoping.  I’m trying not to hope to hard though because quite frankly, I’m tired of the let down…

.. but god fucking damnit.  I’m tired of being sick.  I’m tired of constantly hurting.  We’re on year 4 people.  I’m tired.  I’m so fucking tired.  I can deal with it, as I have been, but, I’m tired.  I want to not hurt.  I want to feel healthy.  I want my life back.

I don’t want to live like this anymore.  I hope something works because I sure as shit can’t do this forever.  Every other aspect of my life is on the up and up, why can’t my body cooperate?

 

 

I’m whining. Choke on it.

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“Who’s gunna come around when you break?”

This weekend has been really relaxing, minus my short-lived bad mood on Friday.  I’m definitely paying for it this evening though.  I’m curled up in my big blanket trying to convince my body that I’m not actually on fire, just going through Prednisone withdrawl.  I forgot to take my morning dose today and after being outside all weekend, my body is revolting.

My body is a cage.

Some times, especially at the end of the day, I feel trapped in this body of mine.  Like it’s keeping me from doing what I want to do. What I need to do.  Granted my I’m more digestive sick in the mornings, but lately, I’ve been feeling more pain at night.  I feel like I’m on fire.

Each keystroke is sending pain up through my upper arms.  Fracturing my wrists and those broken knuckles aint got shit on this…

I tried to stretch out my muscles in my back earlier and felt like someone was getting mighty creative with hot pokers.  Forget raising my arms above my head, my head is basically stationary at the moment, my neck is so stiff and my shoulders so bunched.

Surprisingly I’m not in a horrible mood because of it, I’m just.. hurting.  I get tired of pain some days, it’s hard not to wonder if this is what I have to look forward to in the future.

Chronic Illness.  Such a rip off.  I didn’t even get a cool one, I would’ve totally dug that tree disease, you know, where you look like you have bark for skin.  Or even better yet… dude, how cool would it have been to have a siamese twin.  Okay.  Not so much.  My bad, and with my luck one of my followers has one growing out of his head.  Just watch.

One thing that ways on my mind is, who would want to deal with this in a significant other?  My ex-husband was extremely resentful, and in all due reality, I can’t say that I wouldn’t be if my love had a long-term life-long dirty-whore of an illness.  I often think : Jeez, this shit sucks now, and I’m only 25, what’s the rest of my life going to look like?  Who wants to stand by that?

I don’t know, after seeing my ex-husbands reactions to it, I’m wary.

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So I’m hiding behind my music tonight, huddled up in my kitchen.  Dog on lap.  Feeling pretty damn old.

“Go to bed, everything’s alright.  Don’t know the whole world is changing as you sleep through the night.”

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Have you ever felt your eyes so heavy, so.. almost swollen, like you’re exhausted, or you’ve been crying, but.. you haven’t?  I feel like I’m wearing a mask, a clay mask, the swelling is getting worse.  Welcome to moon face.  Thank-fuck-you-very-much steroids.  This is more aggravating than my rings not fitting anymore.

This body that is riddled with these side-effects, it’s not mine.  It’s not.  It doesn’t behave in the way that mine does.  Why is my hair thinning?  Water weight?  Oh and my uterus has decided to not work anymore, but that one I’m okay with.  This body is not mine though, I want my old one back.  The one that didn’t have an over-active immune system.  Hell, even post that.  The one with out arthritis and sunken eyes.  The one that didn’t bruise after a brisk hug or being tickled on the rib cage.

(I’m sitting here listening to a violin wail.  This is what I imagine the end of the world sounds like.  Sorrowful yet angry underneath it all.)

How is it that I got stuck here?  I feel like I got switched into someone else’s body. At least in the last one I could close both of my hands at the end of the day.

I can’t wait until I can get off of these steroids, but at the same time I’m scared about the next round of drugs.  My blood work is apparently still pending, I should get a call tomorrow to get the go-ahead to pick up the script, but I’m scared.

The next one isn’t much better, just less… vain side effects.  I guess.  Only a couple more months of prednisone though if this drug comes through.

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I know I’m stronger than all of this, and I will get through this.  I know I’ll go into remission.  I’m way too stubborn, but this is my admission blog, my confessional.  Sometimes, I just get tired.  I get tired of this.  Tomorrow is another day, but tonight?  I’m tired.

I can’t wait until remission.  Until my life returns to normal and I can pretend to forget how bad this disease can get when it’s “active”.

I can’t wait until this goes away:  Prednisone withdrawl – the first symptom I get, with in 18 hours of missing a dose.. any touch on any part of my body hurts, like it’s bruised.  I itched my cheekbone and it feels like I just punched myself in the face.  Totally gay.  On the lighter side I’m pretty sure the look on my face was priceless.

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Pity Party for One. Thankyouverymuch.

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There is something about my entire body hurting that just puts a damper on coherent thought.  I swear.  I turn into a space cadet and relapse into the good ole’ stutter.  I just can’t seem to think straight anymore (thanks Prednisone) and throw in body aches (again, thanks Prednisone) and I’m damn near crazy.

So I’m sitting here with my Ramen Noodles because dammit on a day like today if I want to be freaking lazy I will, trying to sort out my thoughts.  Which is a task all in itself especially after the last three days.  It feels like there is a little demon, drunk on Cherry UV (if you knew my hatred of flavored liquor you’d understand the analysis here), flailing around like a Tasmanian devil inside my brain.  You know.  Much like the drunk 21 year old you get stuck driving home after their first night out.

Like I said.  Pretty damn near incoherent.  You should see the troubles I’m having with spellcheck.  — Okay.  Apparently it’s *Spell* *Space* *Check*.  Asshole.

So on Wednesday I had an appointment with my G.I. Specialist.  Dr. C.  The most tolerant doctor I’ve dealt with yet.  There is something about him that makes me comfortable, and he’s one of few people I can actually explain my symptoms too with out feeling like I’m whining.

I get in there, and he starts in on the lecture on why I hadn’t checked in since my most recent hospitalization last month.  I make my excuses and he destroys them.  I make more excuses, he destroys them while smiling at me.  I give up.

He asks me how I’m feeling.  I look him in the eyes, prepare to tell him “better” and get my diseased self out of there.  Instead I just open my mouth and start rattling off the symptoms.  Tears start to form but I choked them back.  I tell him how I’m always exhausted but have problems sleeping.  I tell him about how my joints are always on fire.  I tell him how my brain is foggy now since the Prednisone has built up in my system.  I tell him about the gut pain and the fistula symptoms.  I tell him my body is swelling up.  I tell him about my migraines.  I tell him how I feel like I’m 80 and I’d do damn near anything to feel normal again.

Since the hospitalization, I’ve been injecting Humira once a week instead of once every other week, and have been popping Prednisone and Anti-biotics like there is no tomorrow.  The side effects are horrendous and despite all of it, I still have symptoms of Crohns disease.  Which makes me furious.

We discuss my options and my prognosis.  I cringe.  He suggests starting another med.  I cringe.  He lets me know the side effects : hair loss, bone loss, bone marrow issues, to name a few of the pleasant ones.  I cringe.  I choke back tears.  We talk about quality of life.  I agree.

So I got my blood work done to make sure that it’s okay for me to take this new drug.  I should have the results back on Monday.  Then we’ll begin.  The goal is to get me off of the Prednisone since it effects me so badly.  Only a couple more months.

As we all know, I hate going to the doctors.  Mostly because it reminds me that I’m sick.  I can deal with the symptoms of Crohns Disease and get through the day (the side effects of Prednisone, not so much) and pretend that I’m fine.  Just walking through those doors to discuss the next course of treatment makes me break out in a sweat.  It’s like facing my mortality.  During the rest of my life, I can ignore it.  I can go dancing and forget.  I can color a coloring book with the Short One and forget.  I can work in my garden and pretend.  I can cuddle up with the boy and pretend.  In that office, getting stuck with Needles and discussing life altering side effects, I have to face it.  I hate doing that.  Because damnit, if I believe I’m just fine, I’ll never feel so alive.

So I don’t know.  There’s that.  I don’t even want to add the happier aspects of my life into this entry.  Simply because it’ll be down played by all the nonsense above.  I’m going to part on this thought…

 

I may have Crohns.  Crohns does not have me.  Regardless of what medications I have to eat, inject, or endure.  I am still me.  I still refuse to let this stupid disease control my life.

 

Ramen Noodles are gone.  Time to make some more.

Humira makes me a bitch.

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I am so super sick of Humira.  I really am.  The side effects are driving me insane.  Like at the current moment, my chest is on fire, if I wasn’t sure I have another Upper Respiratory Infection, I’d go to the hospital worried about my heart.  Since 25 year olds totally have Heart Attacks that could totally turn into something crazy.  Dr. House.  Thank you for the paranoia.  I appreciate it.  Now turn on that accent and.. ahem.  Excuse me.  My bad.

Oh and the finger length bruise from the injection yesterday?  It’s the perfect fashion accessory for those going for the strung out on heroin look.  I swear, it’s classy.  I just need dark(er) circles under my eyes and some dreads and I’d be set.  I don’t know why that last injection hurt so much, I must have hit a vein in my leg or something.  Either way.  Lame.

I guess lately I’m just re-entering the “angry-at-something-I-can’t-change” phase.  My health is still on the up and up but I’m just getting annoyed with being sick.  Seriously fucking annoyed.  If my Crohns isn’t acting up (which lately has been non-stop) my immune system is so battered from the Prednisone and the Humira that I’m constantly sniffling, coughing or in a general achy-state.

Lets not even talk about my joints.

I’m still highly grateful for the health that I do have, as well as my other extreme good fortunes as of late, but this shit is just irritating me.  I had one normal month after starting Humira in April.  ONE.  ONE.  I swear it’s like the proverbial carrot.  God is all smiting me and shit.

“Look Sarah.  This is health.  Noooope.  Nevermind.  Save up your money and get that flat screen installed in the bathroom.” 

“Gee God, thanks.  You wonder why I don’t go to church.  Oh and that one time with the hot pink combat boots?  That was payback in advance for this.  Prick.”

“Proverbial Carrot Sarah.  Carrrot.  You want to see it again?  Well nope.  Nope Nope Nope.  Take solace in this, you and Robert were right.  I’m the vengeful Old Testament God.  Not the I-love-everyone-lets-sing-around-the-camp-fire-god.  *Smite*.” 

“I knew it.  Fucking knew it!”

(Side notes: I’m sure I just pissed off a few Christians.  Bite me.  It’s a joke.  Oh.  And The Old Testament God was way more bad ass than the New Testament God.  Again.  Bite me.)

Alrighty then.  I feel a tad bit better now.  Plus I’m tired and almost done with my tea.  This blog can choke on it tonight.

 

Thunderstorms.

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The storms are rolling in and of course my fingers start itching, I don’t know what it is about rain but I always want to write.  There is something so soothing about the sound of rain, even if it’s punctuated by the squeals of small children rolling in the mud in my yard.

Life is good.  I am content.  Getting out and about last night with Ry to see everyone was nice, even though we didn’t do too much.  It was nice to just escape for a little bit.  I guess this weekend is the last pseudo carefree weekend, seeing as how I lose my license next Sunday… after this it’ll be relying on public transit for a little while until my suspension is lifted, but hey, at least it’ll be suspended for the nice months of fall, when I don’t mind being outdoors.

I am still trying to find some one to help out with rides to and from work, that is proving to be difficult, even with the offer of cash as well as a tank of gas.  If anyone knows of any one looking to make an extra hundo and gas in exchange for rides, let me know.  I would much rather pay people I know vs taxis.

In other news, my health seems to finally improving.  The extra doses of Humira and the Prednisone seem to be really doing their job.  I’m finishing up my anti-biotics today, so hopefully this fistula closes.  I am really getting tired of feeling sick.  It just honestly wears me out, I am so tired at the end of the day that I am surprised I am still standing.  But improvements are improvements regardless of how small.  I will not let this disease rule my life, no matter what.

Ah so it’s the weekend finally.  This week was just long.  All of that drama with Kelly really irritated me, more than I’d like to admit.  It really did make me realize a lot of different things though, the first and foremost being how much support I really have and how many great people have my back and care for my little Noodle.  The outrage at the comment aimed at my child melted my heart, myself I’m not so worried about, but the support and fury people showed while defending my child and there fore me really made me appreciate people.  So thank you everyone!  You made our day and we’re lucky to have all of you in our lives.

I’m glad that whole mess is over, even though apparently she’s still reeling over on her facebook, blocking every aspect of her from my life made my stress levels drop tenfold.  The negativity that came from that friendship went unnoticed on my part, only to have me realize it after it’s over.  I’m glad I was able to improve my life in the positive in the end, it was worth the fight.

Plus, I met someone by proxy through this whole mess, and I’m very grateful.  I don’t know what’ll come from it, but I always love new friends I get along with, if it wasn’t for their falling out, I wouldn’t have gained this.  You know the saying, when one door closes, another one opens.

Well I guess that’s enough monotonous rambling for now, the storm is clearing up and Noodle and I have things to do.