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?




14 thoughts on “Tired.

  1. Sarah, you write so beautifully even about the most troubling issues. I can so relate to everything you say because I felt like that for about 10 years. But I have some bad news: you can’t have your old life back, that life is gone. Ours is a life of uillness, surgery and drugs; the trick is to not let those three issues dominate our new lives.
    Stay strong and keep writing – you have a gift

  2. I know life has changed, I do, and I’m just bitter about it tonight I guess. I’m just so tired of it all. Besides the internet, I really don’t have anyone who understands. Tonight is one of the nights where I feel completely and utterly alone. I can honestly say I don’t want to do this anymore. I will anyway because what other choice do I have? I’m just so tired of hurting, I’m tired of doctors, I’m tired of meds. I’m tired.

  3. It’s inevitable we have these moments where the illness and its issues knock us down – not been a great day for me either as it happens – but we keep plodding on because, as you say, we don’t have a choice. I never thought I would feel well again but I do a lot these days; the same will happen to you.

  4. I absolutely hate not being able to do a single thing here. I hate it. HATE. I just don’t get it, really. We can cure cancer, cut out lungs and put in new ones, stick pig parts and machines in hearts…. but all we can do here is pump people full of chemicals? I hate it.

    And then I hate being so far away. If I wasn’t I’d be bringing you your damn nasty coffee, playing with the kid, bringing you slim fast shakes in bed (no clue that’s what they make me have when I can’t eat, lmao)… doing something. You know, beyond leaving cheeto finger prints on your windows.

    Point being don’t give up because it’s not an option, keep going because you want to. There’s a difference there I swear. We’re all praying, chanting, having bonfires and dancing around naked for you.

    Lubs ya.

    • Well, Eyes are Bleeding, I do complain, it happens when you’re suffering a Chonic Illness. However I’d rather suffer from an illness that will debilitate me for the rest of my life than suffer from a lack of sympathy or as it seems with you, a good ole case of having you head too far up your ass. And for the record? I’m not single. :)

  5. Amanda Winski

    Wow. Seems our Crohn’s symptoms are running pretty parallel. Although, I’ve been on everything in the book. I couldn’t tolerate 6 mp/methotrexate/azathioprine…they’re all the same-ish. I loved Remicade, but then after a few times, I reacted, couldn’t breathe, turned purple, so no more of that. Then humira, stopped working and I had surgery–no meds for a year after surgery!! It was awesome (but bad idea, I was too hopeful that I’d stay in medically induced remission, don’t do that). Then developed a fistula in March 2009. It still hasn’t gone away even though I’ve been on Cimzia since Sept 09. Then I needed more and am also on Entocort now. But now I have a stricture and am severely anemic. Getting a blood transfusion tomorrow. Optimistic tho bc at least I know now that it’s not that my physical body is too weak bc of Crohn’s, it’s a blood level, ya know? But in the next month I’ll either be getting a strictureplasty or another resection. I’m 5’5 and down to 88 pounds. I understand how tired you are. I really do. I’m 26 and I’ve had this disease for 17 years. For the record: I used to be a hardcore coffee addict. Like, minifridge by my bed with creamer, a pink coffeemaker on top of it, set to automatically brew 5 minutes before I woke up. I HAD to have it before I even got out of bed. I gave it up. Cold turkey. Coffee REALLY messes with you. I drink it mayyybe once a month now. I know that probably seems completely out of the question for you based on your posts, but it helps. A LOT. Keep the hope alive. The mind-body connection is a strong one.

  6. Hey Amanda, I don’t know how you do it! You must be a really strong woman to deal with all of that! Now with a strictureplasty is that just where they removes the stricture? My last hospitalization they had thought I had a stricture but it was thankfully just infection and extreme swelling.

    And yeah, coffee is out of the question, all though I actually don’t drink it as much as it seems lol. I do have my coffee in the am, and one or two in the am, but I guess I make it seems like I have an IV running the caffeine. Haha :) I am smart enough to either do decaf or half and half at night. I don’t know if I’ll ever be able to give it up in the morning though. You quit it cold turkey? Do you still drink any other forms of caffeine? I’m just curious, please don’t mind me if I’m being nosy. I don’t have too many Crohnie friends.

    Thanks for checking in on me again, I appreciate it. I was taking it super hard last night, and I guess it’s just wearing down on me. It’s good to know that there are others out there who understand what it feels like. *hug*

  7. JenN-Moo

    Sarah, some people really have no clue what real suffering is. And you handle it all so well, I don’t know how you do it. Don’t let an asshat steal your safe place from you!

    And please don’t give up. You are beautiful inside and out and I, like Emily, wish I was closer to help you. I’d bring you coffee on the days she can’t, and I’d play with Noodle with her. We could hold you up on the days you can’t do it for yourself. <3 you!

  8. @studiosanctuary

    Follow you on Twitter, and would love to have a dialogue because your story is so similar to mine. Remicade, Humira, 6MP, but can’t do steroids. Major flare in Feb. that I continue to struggle with. Before Twitter, I literally knew no one with Crohn’s – only people who would tell me that they knew of others. It has been so good for me to know that I am not alone in my struggles. I think that the emotional toll of our illness is oft times worse than the physical symptoms. Would be honored to talk if you’d like, but can’t DM you on Twitter. Don’t let the negative comment upset you either – strength in numbers.

  9. Sarah, I agree with John, you have such a gift for writing. When you are in the midst of feeling really bad, it can be tough to believe there can be anything else, like freedom from pain, feeling good and not having to deal with all of the doctors, the poking and embarrassing tests. As you can see there are others out there just like you. You are never alone.
    One of the best inventions was Twitter and Facebook to bring those who need support together. You have support from all over the world! You may not know your neighbours but you know you’ve got a virtual friend.
    You may feel like the end of the rope is just over the cliff, but hang on to the thoughts of when you felt good, happy, safe and secure… those are the memories you want to play over-and-over so that you can tell your body that you can feel that good again.

    Your crohn’s is your body telling you that she gives you permission to explore you, to get to know you and think about you and put yourself first. It is an invitation to learn everything you can about you so that your mind, body and soul can become integrated once more.
    One of the best ways to engage the heart is through writing, which is why your arm attaches to your heart. It is your true self coming froth from the heart to the pen. It is healing and quite magical.
    It is hard to think positive but one positive thought a day can lead to day full of positive thoughts-you have that power!
    Your first step has already happened-you are sick and tired of being tired! go with that, explore, write, read and don’t give up.
    Your silver lining is right there in the cloud above your head! Reach for it!

  10. Amanda

    I actually used to hate tea, but in summer 09 I forced myself to drink it bc I got an insanely painful sore throat, so I transitioned to drinking black tea w sugar and some milk when I quit cold turkey. The problem w coffee is it has a natural pesticide in it that screws with your body, its not necessarily the caffeine. Later, I transitioned to green tea w sugar, then green tea w half honey, half sugar :) I drink it ALL the time and I love it. On the occasion that I need extra caffeine in the morning, I’ll drink black tea and it always makes me laugh how sensitive I am to caffeine now. Anywho, luckily my family and fiance provide an amazing support system. My fiance is about to give me my cimzia shots, my sister is going with me to my blood transfusion tomorrow and my mom is flying with me to Pittsburgh Sunday so I can have a consultation w my surgeon. And my dad has a different autoimmune disease, so he understands many of my symptoms. Also, ignore that jackass from earlier. What a waste of space. *return hug* :)

  11. In the same boat with Crohn’s, but was able to do 6-MP and it helped a lot for several years (had to go off of it for awhile this year, though, and regretting it a lot), but I’ve never had a visit from the remission fairy. Still holding out hope that she’s real. I’ve been on TPN (i.v. nutrition) for almost 9 years and that was my miracle for functioning, but had to have my port pulled in March for heart complications from the port. Now back to Crohn’s hell again. I’ve done Remicade for years and it was the only thing that helped the fistulas. It’s an amazing drug. It’s terrifying to read the warning label (so for this one time in life, just don’t – it’s not like we have any other options left by that point – die later from what might happen or die now from what you know is happening & will happen if you don’t treat it and get better). I started having less and less of a response to it after 9 years (it used to, seriously, make me feel human for about 4 weeks out of every 8 weeks between treatments!), so I had switched to Humira for awhile and had no response to it at all. Going back to the Remicade, but also don’t have health insurance because I was just laid off during massive budget cuts at my job (gotta love having no seniority somewhere). My physician has said that Remicade has a program for providing the med free to patients without insurance. Even though it costs over $9,000 per infusion, it may end up being the cheapest treatment you have… we’ll see if that’s the case for either of us. Hang in there… steroids suck, treatments suck, and Crohn’s sucks even more. Here’s to hope. Hang on to it with all you’ve got.

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