Tacos Are Now On The Naughty List

Standard

Wednesday started out innocent enough. ¬†I dragged my lazy butt to work, worked the morning away, and then went out to a great Mexican joint down the street with two of my managers. ¬†I’ve been there a few times, and every dish I had was fantastic. ¬†I went low key, tacos (real tacos) with beans and rice. ¬†All foods I’ve never had a problem with, and let me tell you, they were delicious.

Back to work I went, and in a couple of hours, my stomach started bothering me. ¬†With having Crohns Disease, that’s not completely out of the norm, but I hadn’t eaten anything I couldn’t tolerate. ¬†Whatever.

Once I got home, I decided to skip right over dinner and go lay down. ¬†I was feeling pretty nauseated, but again, that’s not out of the norm lately. ¬†I figured I’d go sleep it off. ¬†Well, I slept… for an hour. ¬†That oh-my-god-I-have-3-seconds-until-I-hurl feeling woke me up and I stumbled straight for the toilet.

I have never puked that hard in my entire life. ¬†Not even that one night in my early twenties where I didn’t have to pay for patron shots and consumed enough to cost one of my paychecks if I did. ¬†Never. ¬†Puked. ¬†That. ¬†Hard. ¬†The only time I had thrown up that hard was back in my teen years when I got myself a good ole case of food poisoning from an under-cooked burger. ¬†Remembering how long that lasted, and the relief I got in the ER, I figured oh well. ¬†I had the boyfriend call my GI (with Crohns, you can never be too careful, I figured worst case scenario, he couldn’t say I didn’t tell him I went to the ER) and then promptly drive my puking self all the way to the hospital. ¬†I spent the ride in the backseat going “oh my god, where are we??! ¬†Why are we not there yet?!!?”

The ER I frequent is staffed with some very wonderful doctors and some sweet nurses. ¬†They’ve never questioned me when I have shown up… for any reason. ¬†I’m pretty knowledgeable about my body and have a pretty extensive chart. ¬†So I explain that I think I have food poisoning, and yes, I have Crohns. ¬†Mr. ER doc doses me up with some Zofran so I can stop puking, and orders an x-ray to be safe. ¬†I curl up in my ER bed watching the kid and boyfriend play Minecraft on the tablet. ¬†Half an hour later the doc comes back.

“The X-ray showed a loop of intestine that may be blocked, I hate to do this, but I want you to have a catscan to make sure you don’t have an obstruction. ¬†Especially with your history.” ¬†I agreed but had to fight off the urge to roll my eyes. ¬†I’ve had so many obstructions, I’ve lost count… this couldn’t possibly be one. ¬†I was absolutely *fine* this morning, no pain, and plus, I usually don’t puke until the later stages… and I couldn’t have crossed my obstruction timeline in a third of the time. ¬†:::Pukes::: More Zofran please!!! ¬†Oh god, I have to drink contrast??!

Insert catscan here, insert horrible joke about glowing with radiation.  Insert nurses prediction on where said contrast was going to end up.

When I got back from the catscan, I sent the boyfriend and kid to sleep out on the couch in the waiting room (way better than the chairs they had in my little hole). ¬†I figured I had food poisoning. ¬†In another hour the Zofran would kick the crap out of whatever pukey little bug I had, and I’d be off to sleep at home.

No sooner than I settled back in my little bed, I had to grab the puke bag. ¬†The nurse called it… all that contrast came right back up. ¬†As I’m sitting there puking, the nurse runs in with the doctor. ¬†Apparently I somehow do have an obstruction, and now they want to put in an NG tube. ¬†I had already maxed out my Zofran, and seeing how I’d rather sit on the toilet for hours, rather than puke, I agreed.

The tube helped, and I was able to get some pain medication and sleep. ¬†(Bonus: I accidentally pulled it out later… and I got to keep it out! Hell to the yeah!) ¬†I stayed in the ER until morning since the hospital was full, but they finally got me a room… which is where I am now. ¬†It’s Friday.

After speaking with the surgeon/a radiologist/my GI, I basically came out with one hodge-podge of a story. ¬†Surgeon and radiologist see a stricture, a bad one at that… with little to no inflammation. ¬†That explains my lack of symptoms… and skipping from cramping straight to puking my brains out. ¬†GI doctor was angry I didn’t want to take one kind of my medication anymore, and we had to have the “quality of life” argument again.

[Something I’ve learned along this journey, is that quality of life is really, really important. ¬†I would much rather have a couple of bad days here and there and *not* take a medication than take a medication that makes me lose my hair, lose my appetite and gives me the worst fatigue I’ve ever felt (and coming from someone who deals with fatigue on a daily basis, that is saying something). ¬†I’d much rather spend time with my family than all my time sleeping.]

So long story short, barring some horrible incident when I’m finally allowed to eat again, I’ll be allowed to go home “sometime this weekend”. ¬†I’m just hoping for before the massive snow storm that’s supposed to hit Saturday night.

I really wish I was home right now, I’m pretty home sick after only a few days. ¬†It has nothing to do with the care I get here, I drive 40 minutes past 4 other hospitals for a reason, I just miss my family and hate being reminded that I am indeed mortal. ¬†I know that my little one is having a sleep over with one of her favorite people ever tonight (thanks Jess!) and is having a blast… but I still miss her. ¬†After losing so much time being sick, I hate losing any time at all.

I’ll be finally switching to the new medication I’ve been rambling about (the name escapes me at the moment) and I did agree to go on the shall-not-be-named medication I hate, but at a low low LOW dose (I was on such a high dose last time, it was beyond what “high dose” is considered normal- hence the horrible symptoms.) ¬†I’ll also be stuck weaning off of the prednisone again too.. because yup… during a morphine nap, a good ole bag of prednisone got hooked up to my IV. ¬†Sneaky Sneaky. ¬†Maybe they’ve caught on that I’ll try to refuse if I’m awake. ¬†To think, I *just* got rid of the moon face too. ¬†That’s a whole different blog though… one I don’t feel like mentally visiting right this second.

All I know is that I really, truly hate NG tubes, seeping IVs (my hand doubled in size overnight) and now apparently tacos.  Oh tacos.. you will be missed.

Advertisements

Vanity, Disease and Pushing Through.

Standard

No matter how hard I try, vanity breaks through each barrier I build. 

People with Crohns Disease, or other “invisible diseases” may not always look¬†sick.¬† Sometimes we do, but sometimes we look “normal”. ¬†Normal to other people anyways, I know I look pretty healthy to the outside world. ¬†People who have known me for years might be able to see a difference, but to strangers? ¬†To acquaintances? ¬†Normal. ¬†

To myself? ¬†Even when I’ve been preparing for the effects of the disease, of the medications, eventually when I look in the mirror I’m shocked. ¬†Over the past 7 years, I’ve been through 18 sizes and then back again. ¬†Since my weight has fluctuated so much, I’ve also changed my style several times to accentuate what I did like about my body. ¬†I’ve changed my hair, I’ve changed my clothes, I’ve changed everything… all in the quest to feel comfortable in my skin. ¬†Regardless of what I do, how much I get my head in order, that moment still comes. ¬†That moment where I look in the mirror and think “What. The. Fuck.” and have to fight the tears. ¬†

Without fail, when I’m super sick, when I’m flaring, I tell myself that I won’t care about the effects of my medications, of prednisone, of 6mp, as long as I start to feel better. ¬†I shake my fist at the social brainwashing and promise that I’ll love my body regardless of how it looks. ¬†I tell myself that I won’t care as long as I’m not living in the bathroom or in too much pain to go to the park. ¬†

Each and every time, with out fail, no matter how hard I shake my fist, I fail.  

Back in May I was hospitalized when my Crohns spread to a new part of my intestines. ¬†I thought it was just another obstruction, when I learned that despite my infusions that my disease spread… I was devastated. ¬†I had been so close to “remission” for more than a year. ¬†I had a taste of normalcy. ¬†Usually I refuse Prednisone at any cost, I hate the side effects, physical and otherwise. ¬†However, knowing that my disease had kept on trucking through my innards, I said fuck it. ¬†Prednisone it was. ¬†Every Crohnie knows, prednisone will give you a hell of a fighting chance to get out of the hospital. ¬†

Fast forward 3 months. ¬†No more hospital for me but I still feel like crap. ¬†Now I feel like crap and loathe what my body has done. ¬†I’ve gained 30 lbs (which is about right for me on prednisone), I have “moon face”, ¬†I have excessive body hair, I have thinning hair ( I think that’s more from the high levels of 6mp I’m on than Prednisone ) and the latest development? ¬†I have a bald spot. ¬†Yes. ¬†I’m 28 years old and have thinning hair and a bald spot. ¬†Granted, the bald spot is the size of a quarter, and trust me when I say that you wouldn’t notice it unless I pointed it out. ¬†The point is is that *I* know it’s there. ¬†Just like all the other changes my body has gone through in 3 months. ¬†

I know I don’t look bad, I know I look alright, but I don’t look how I want to look. ¬†My neighbor’s grandma thought my weight gain was because I was pregnant (hahahahahaha), my friends love my short hair. ¬†I got lots of compliments on the new summer style. ¬†My boyfriend isn’t even remotely phased… in fact, I think he’s enjoying a couple of areas that have accumulated some of the extra weight. ¬†(insert eyeroll here)¬†

I don’t see a little extra weight… I see where the weight is sitting. ¬†I see puffy arms, ankles and a new belly. ¬†I see fat cheeks. I don’t see an awesome new hairstyle, I see thin hair and a bald spot… oh wait! ¬†There’s the hair… on my face and my arms. ¬†I definitely have a new appreciation for Nair. ¬†I don’t see a new summer style, I see hiding behind my clothing. ¬†I see loathing and tears. ¬†I see the love lost for my body. ¬†

Ugh. ¬†That actually burns my brains to type out that I’m not happy with my body. ¬†I don’t like admitting that. ¬†I know that it’s temporary. ¬†I know it is, I’ve gone through this cycle more times than I’d like to remember. ¬†I know that just as soon as I get used to this slightly heavier body, my weight will stop dropping. ¬†I know that my hair will come back, I know that the extra hair will go away. ¬†I know my body will change… again. ¬†

I don’t know. ¬†I guess this time around I’m having a particularly hard time with the changes my body is driving through. ¬†I know it’ll get better, or at least change again, but it’s tough. ¬†I’ve decided to treat myself a bit these next couple of weeks. ¬†Instead of my usual bout of refusing to acknowledge that my body has changed, even temporarily, I’m going to just embrace it.¬†Maybe pick up a few new clothes, new shoes (yes, my feet have swollen a bit) and tomorrow I’m going to go get my haircut by a friend, something a little shorter to hide the spot and thinning. ¬†I think that maybe instead of ignoring my body changing, I’m going to accept it, even if I don’t like it. ¬†

Regardless, writing this all down, admitting it to the internet and my friends has made me feel a little bit better. ¬†Being honest with people and letting my fingers do the talking has helped. ¬†I’m having a hard time, I’m feeling like crap, and I am self conscious. ¬†I’m not happy with how I’ve ended up looking, and that’s okay, and I’m telling people instead of hiding it. ¬†

 

Depression: This and That

Standard

It’s been a long couple of weeks, it really has been. ¬†It seems like it’s all come crashing down on my shoulders today, I’m not sure why today, but here I am. ¬†I am in a deep funk. ¬†I’ve been telling myself for the past few days that I just need to make it to Friday. ¬†Friday, the beginning of the weekend… I was sure that when I walked out of work tonight, I’d feel much better (at least mood wise anyway). ¬†Well, that was a lie. ¬†Maybe it has to do with all the stress from work over the past couple of (hell) weeks, maybe it was the crushing realization that I’m going to have to work tomorrow morning anyway. ¬†Either way, getting in my car after work and heading to pick up the short one from camp, I had the sudden urge just to bawl.

I’m not talking about a couple of cute, mascara streaked tears running down my face. ¬†I felt like I wanted to scream and rail against the world, like if I went all crazy girl in my car, I’d feel all better and the world would keep turning. ¬†Well, unfortunately for my head, I didn’t. ¬†I drove to pick up the short one, no tears in sight, and diligently turned in the check for her childcare. ¬†I packed her up in the car and stopped for a quick treat at the 7-eleven (Friday tradition anyone?) and headed home. ¬†I sat out in the backyard writing, watching my child run around with her “peg leg” (a walking stick the boyfriend made her, which magically morphs into whatever play thing she wants at the moment. ¬†Thank god for imagination!), smacking random things that she deemed a monster. ¬†I sat there and smiled. ¬†The boyfriend came home, we talked about our days while I drank my iced coffee. ¬†You know what? ¬†I still want to bawl.

I know a big portion of it is just the prednisone prescription. ¬†I have mild depression and anxiety normally, but for some reason the prednisone really brings it out. ¬†It’s pretty common from what I understand if you’re on it long term, and I dealt with it before so I knew it was coming. ¬†A big portion of this funk is because I feel like crap. ¬†My Crohns is far from controlled right now, and the physical side effects from prednisone are popping up. ¬†Along with the stomach cramping and my “normal” fatigue, I have joint pain, what I call “skin pain” and I feel like I haven’t slept. ¬†I’m not even going to talk about the “moon face” I’m rocking now. ¬†It was confirmed by a coworker yesterday. ¬†As anyone with a chronic illness knows, (especially someone in a flare or with consistently active disease) after a while, the pain and discomfort just wear you down.

For whatever reason, work has just been hell lately. ¬†I mean, it’s enough to wear my healthy counter parts down, and dealing with it on top of pain and fatigue is just ruining whatever small happy moods I do have with a quickness. ¬†Usually I can deal with work stress pretty well, but with already being at the mental-crying-like-a-grounded-teenager point due to pain… it takes very little to set me over the edge. ¬†Thankfully my co-workers are understanding (to a point), but shit man, I’d rather not have to run outside to get my emotions under control. ¬†Crying at work is not fun for anyone, and when I cry, I make it all awkward for all who witness it.

There’s a lot going on in my personal life. ¬†Some financial stuff, ranging from the new hospital bills, to the increased summer tuition for childcare (no child support here remember), to trying to stay afloat with no extra income coming in to make up for the gap. ¬†Along with finances comes the regular stuff. ¬†I have to turn in supplies for summer camp and register the kid for 2nd grade (I already missed the deadline… thank god pretty much everyone does.) and the boyfriends kids money stuffs too. ¬†It’s just a lot, and while doable, is very overwhelming when I’m already not at the top of my game. ¬†Then of course just every day stuff, you know, keeping up with chores (thank god for the helpful boyfriend) and the garden and getting repairs on my car completed. ¬†I about cried when I realized I have to do laundry this weekend. ¬†That’s how stressed out I am.

I know a lot of it is prednisone related because I *know* that most of this stuff doesn’t bother me on a normal day. ¬†Which having that thought just irritates me even more! ¬†I am so incredibly overwhelmed I want to just make some coffee and pour my head out to someone, but I’m feeling quite alone at the moment. ¬†The boyfriend has to listen to me rant and rave everyday, so I don’t want to unload on him anymore than I already do. ¬†My parents have a lot to deal with the other children, so I don’t want to unload on them either. ¬†They are super stressed out, why add to it and then add guilt to my list of woe-is-me’s. ¬†I don’t have a whole lot of friends who do the coffee date anymore, and the ones who do (which I love dearly) are too far to do in-person-coffee dates. ¬†(Luckily I have one via phone tomorrow). ¬†Regardless, between putting on the happy-fun-lets-do-a-bunch-of-fun-stuff mom face and the lack of people to talk to… it’s hard to get my brain out of this funk.

 

I don’t know. ¬†I have to work tomorrow, then the kid and I are out to roam around for some one on one time. ¬†I’m hoping that that and the good weather will cheer me up. ¬†In the mean time? ¬†Whiskey and cokes on my porch after the kiddo falls asleep. ¬†I’ll count not having to watch frozen again as a victory and count my blessings.

 

Happy night all.  Hope your moods are better than mine.

Grown Up Stuff: Because I have nothing else to do.

Standard

Another dreary day here in the hospital. ¬†Looks like it’s pretty damn depressing outside too, which frankly makes me feel a little bit better. ¬†I always hate being locked away here when it’s gorgeous and sunny outside. ¬†Here in the Midwest it sure seems like Spring/Summer are never going to arrive. ¬†It’s the middle of may and we’ve only broke 70 degrees a handful of days, it’s not snowing which is a definite bonus, but not quite nice out either. ¬†I’m pretty sure that it’s going to be a very mild summer.

Anyway, I am feeling quite a bit better. ¬†I’m still moving a bit slow and am severely fatigued, but I’m willing to bet that that’s more due to the lack of food… the last solid food I ate was 6 days ago. ¬†I’ve been able to have some liquids for the past two days, but the nurses are still working on getting a “general/soft diet” approved for me. ¬†Wish me luck, my appetite is coming back and I’m starving!! ¬†I certainly don’t feel like roadkill like I did earlier this week though, and I reluctantly have to give credit to the drug cocktail they have me on (no pain killers for more than a day!!) as much as I don’t like it.

So normally I refuse Prednisone as long as I can. ¬†I hate that damned drugs and pretty much anyone with an autoimmune disease does. ¬†It’s just a horrible, horrible drug… but it works. ¬†It’s the quickest way to get out of a flare (which is perfect for me right now since it seems like it’s the new section of inflammation that’s actually causing me so many issues) and I need to be back at a functioning level as quickly as possible. ¬†So back when I was still in the ER, they started the IV bag before I even had a chance to ask what it was, so back on Prednisone I go. ¬†I’m looking forward to getting better… but adding moon-face, skin problems, skin pain and joint pain/swelling to the mix? ¬†Oh, and I can’t forget my favorite side effect… Mood Swings! ¬†Booyah. ¬†In people who already have “mental issues” (I have an anxiety disorder) it brings it out a bit more. ¬†*Sighs* ¬†Oh well, I’ll just count down the days until I can get off of it.

Besides Prednisone, it looks like we’re almost 100% sure that I’m going to stop taking Remicade. ¬†My GIs want to switch me to Cimzia, I’m not looking forward to having to fight tooth and nail to get my insurance to cover that, but like I said before, my doctors have already started that fight for me. ¬†From what I understand, I’ll also be upping the dose for my 6mp as well and most likely be coming home with every Crohnie’s favorite antibiotics (just guess). ¬†(Side-note: since Remicade/6mp are both classified as Chemotherapy Drugs now, I have to have a special nurse come and give me my meds… pretty freaking weird if you ask me.) ¬†So hopefully with all of that (and I’m assuming I can discontinue the Entocort, since that was just us trying to avoid Prednisone) I can start getting back on track.

Whatever. ¬†All I know is that I’m super antsy and the longer I stay here, the lower my mood slumps. ¬†I’m missing my kiddo pretty bad too (even though it’s only been a day and a half since I last saw her), she’ll be coming up here for dinner tonight after school, so I’m excited for that. ¬†Hopefully I can go home soon, I miss the boyfriend and the animals too. ¬†*Sighs* ¬†Back to surfing the internet, it’s almost time for me to harass the nurses for food again. ¬†I already balanced my checkbook and paid all my bills… I ran out of stuff to do so I did the adult stuff that was on my list. ¬†Blah.

Crohns Disease: what I’ve learned from it

Standard

<3

<3

Crohn’s and Colitis Awareness Week
December 1-7th

I’ve been sick since June of 2007. ¬†I was diagnosed with Crohn’s Disease (after several misdiagnoses and the almost dead-part) in April of 2008. ¬†It’s been 4, almost 5 years now living with Crohn’s. ¬†It’s been years of grieving what Crohn’s has taken from me, what it’s put my family and myself through.

The drugs are almost the worst part. ¬†6mp and Prednisone have been the worst for me, although the multiple allergic¬†reactions¬†to Humira come close. ¬†6mp and Pred alone caused moonface, hair-loss, weight gain/loss, joint pain and inflammation, migraines, nose bleeds, paranoia and mood swings, and PAIN. ¬†(I’m currently only on Remicade, I am now refusing Prednisone, PERIOD)

I looked at it like this:  So I have this life long disease, that makes me feel like someone is chewing their way out of my stomach, from the inside, with a pack of rabid dogs.  So while my weight yo-yos 40-60lbs I have to take these drugs that make me even MORE miserable in an attempt to go into remission? Greeeat.

The only other thing that really got to me, is when I would have really bad days, days where getting out of bed was a challenge, it really hurt me inside to know that I could be in the forest preserve with my daughter, or working on my house, or hell, anything. ¬†The¬†bad¬†days were brutal. ¬†They would get me in such a funk, I’d think about how if I didn’t have Crohn’s I could be such a better mother, girlfriend, employee.

I focused so long on the things I had “lost”, the things I was “missing out on”, the pain I was in, that I missed the things that living with Crohn’s Disease has¬†given¬†me. ¬†Sure, I have to deal with being sick and the drugs and doctors, but you know what, it’s given me a different perspective.

It took me a few years, but you know what? ¬†I finally realized that I’m a better person because of my battle with Crohns. ¬†I’ve learned that I can still be a great mother even if we don’t play outside EVERY day, I’ve learned that my daughter is very understanding and bright, and her experience with me getting sick (and the hospital stays), has helped her understand another sick little girl and befriend her.

My being sick has forced me to rely on my family and friends, even though it’s against my nature, and in return I learned how much the people I care about, care about me, and how lucky I am to have the people I surround myself with.

I have learned that my self worth is not based on how many days I feel like utter crap, but how many days I don’t let it get me down. ¬†How many good days I have, and how many days I go out and do what I do regardless because FUCK CROHNS.

Because of this disease, I learned that I can have a relationship with a very understanding man who will stand by me and support me through every step I have to deal with, a forced step or not. ¬†Because of this disease, I’ve learned that it’s okay to lean on people and let them know I hurt. ¬†It’s okay not to be super woman all the time.

Most importantly, with this disease, I’ve learned how strong I really am. ¬†There have been some moments where I have been terrified, where I didn’t want to face it, where I wanted to trade in my body on the black market. ¬†Lets face it, I’m going to have more of those days, it’s inevitable. ¬†I’ve learned that I’m strong enough to get through it, make it. ¬†There is a difference between Living Life and Just Living, and I refuse to miss out. ¬†This disease has taught me that I can make it through and enjoy life regardless.

I’ve come a long way with this disease, as many of my “Crohnies” have. ¬†I’m proud of us, I’m happy to see awareness of both Crohns and UC spreading. ¬†Now maybe one day we can find a cure. ¬†In the meantime, I’ll be right here. ¬†:)

If it ain’t broke, don’t fix it, surgically remove it.

Standard

Crohn’s is a dirty, dirty, low-blow throwing bitch. ¬†Even worse, my mind is my own worst enemy sometimes when it comes to my treatment. ¬†I have such a hard time accepting the different stages of treatment. ¬†Hell, just page back through the entries, you’ll see the mental¬†dilemmas I went through when I was considering going onto Humira. ¬†(Like that even worked, totally lame!)

Now look at me! ¬†I’ve been getting infusions of Remicade since last year, been on (and took myself off of) 6MP, and am still living on Prednisone. ¬†Add in dozens of antibiotics, muscle relaxers,¬†corticosteroids, and assorted other crap, and I’m pretty sure if my genes didn’t dictate that I am to have cancer, ONE of these meds will have caused it.

Next up on the Crohns To Do List? ¬†Surgery. ¬†I’ve narrowed down S-Day to the first week of December, if my surgeon’s schedule allows (I’ll find out tomorrow, unless my subconscious¬†sabotages¬†me again). ¬†¬†Like I said, I’m still on Prednisone, I’m on my last week of¬†tiering¬†off. ¬†So only a couple of weeks of hell left. ¬†My current mental problem? ¬†Now that I’m starting to feel normal again (starting¬†being the keyword, minus the steroid side effects of course) it’s harder and harder to accept that I need surgery. ¬†When my days are damn near normal, it’s hard to think that I’ll be going under the knife in about a month.

Now now, I realize that I have to be remotely healthy to have surgery, (since it’s not an emergency situation and to get the best possible chance at a quick recovery) but damn, the better I feel, the harder it is to convince myself I need to have part of my intestines removed. ¬†I’ve been putting off surgery for a long time now, feeling somewhat human makes that easier.

On the flipside of that note, I also realize that this fistula isn’t going to heal on it’s own. ¬†Obviously. ¬†I am coming to terms with the fact that I NEED surgery. ¬†That I need to get this taken care of, and once I do that, I’ll actually have a true chance at remission. ¬†I know that if I put this off, eventually I’ll end up with an obstruction that puts me in the hospital for a much more complicated surgery.

 

So time to buck up and deal.

 

And take my stupid pills.

 

Stupid Prednisone.

The things I hate about you… and by you I mean Crohns.

Standard

I feel a bit blah today.  I know why too, and I hate it.  Just like I did last time.  Prednisone.  The oh so wonderful steroid that helps so many of us Crohnies, kicks my ass.  Yes, it helps with the fistula and it helps push my disease closer to remission, but good god do the side effects suck.

I’m not sure what it is about this time, but the side effects have popped up in half the amount of time. ¬†I’ve only been on a heavy dose of steroids for just over a week and I feel like I did three weeks into steroids last time. ¬†My body aches, my joints sting, and my skin hurts, especially around my face and shoulders. ¬†My brain is foggy too, which was a huge complaint of mine last time around.

The point of taking steroids this time is to get my body healthy enough for surgery, which I’m willing to do, but that doesn’t mean I’m not going to complain about it. ¬†I feel hung over, even if I haven’t had a drink in longer than I can remember. ¬†I feel blah.

It definitely doesn’t help that this week was very busy, especially the last half of the week. ¬†We had two girls out, and I have been playing catch up on top of it after missing days for my hospital stay last week. ¬†Combined with the extra hours I picked up to help out and these stupid drugs I’m on, I’m exhausted.

I got a lot done this week. ¬†I feel like I’m caught up at work for the most part, and the house doesn’t look too shabby. ¬†Bills are paid and errands have been run. ¬†This week was hell, just like last week was, but at least it was productive. ¬†This weekend looks much better though. ¬†Ryan is going to be working a short day tomorrow, so that means lounging around the house until he gets off of work and then relaxing for the rest of the weekend, until my drive to clean and organize steps in anyway.

As always though, I’ve been doing a lot of thinking, as I always do when I get sick. ¬†It seems like when you’re down and out with your health, your true support network shows through. ¬†As always, I am reminded how lucky I am to have such wonderful people in my life, and how happy they make me.

I’m lucky to have a job that I love and that¬†accommodates¬†me with my odd health schedule. ¬†I may want to torch the place half the time, and bury my coworkers in the back building, but hey, who doesn’t? ¬†I’m lucky to have coworkers who give a shit about how I feel and my overall health… even people I don’t work closely with every day have shown concern. ¬†From truck drivers to stores, every day someone new pops up and asks how I’m feeling and how I’m doing back at work.

Of course I’m extremely lucky to have my parents. ¬†My dad took Noodle for a couple of nights while I was in the hospital last week and spoiled her. ¬†My sister apparently took her to the zoo, but I wouldn’t know first hand, I heard from my Dad. ¬†I’m glad that I have such a lovely family who looks out for my kiddo and takes care of her so I can rest and heal. ¬†My friends have played a huge role, from my “cafe-mom” friends to Katie and Ingrid (Girls I grew up with). ¬†My neighbors even brought over a meal when I got home and have cut me some slack for my crap-mood. ¬†Yet again, I’m reminded that family is not just blood. ¬†Some times people who aren’t even related to you, step up more than blood does.

I am more than grateful for Ryan too. ¬†When we first got together, I was concerned about how he’d react to my Crohns Disease. ¬†I mean it sucks, some days I hurt too much to eat, or am feeling run down enough to just want to lay in bed. ¬†(Granted, I’m still more active than half the people I know haha). ¬†I worried what he’d think about my having to get Remicade Infusions, or when I’d end up in the hospital again (we actually started dating right after my last obstruction ~ cute note ~ he had offered to bring me a bag of books while I was in the hospital, it’s what peaked my interest to begin with. :)). ¬†I was concerned that he wouldn’t be happy with a girl who was sick, and who will be sick until there is a cure found.

At this point though, I’m extremely glad I met him. ¬†He has been by my side every step of the way. ¬† He comes to damn near every doctor’s appointment, and has only missed one infusion (due to work). ¬†He spoils me when I feel sick, and picks up the slack when I’m down. ¬†When I realized it was time to go to the hospital, he came with, helped me with Noodle (ie: getting my Dad to come get her, packed up her and my stuff, and took care of her for the first 8 hours we were there.) ¬†He listened to me bawl because of the pain, then again because of the heavy drugs (I don’t know, I’m a crier on pain meds). ¬†He listened to the pros and cons brought to us by the surgeons, and he met my doctors.

Most importantly, he sat there and held my hand, only leaving when I made him. ¬†I don’t know what I was so worried about. ¬†Crohns Disease hasn’t made me a worse girlfriend, just like with being a mother, it just made me a little more unique. ¬†Luckily for me, I found a man who loves me for who I am, even if my body is a bit off. ¬†It’s nice to know that I am not going through this alone, that Noodle is not going through this alone. ¬†Not only do we have the support of our family and friends but Ryan. ¬†We’re very lucky.

So worn down I feel today, but all in all I’m not in a horrible mood. ¬†I’m am looking forward to spending time with my kid and the boyfriend this weekend, and just enjoying snuggling in in the morning. ¬†My Crohns may be kicking my ass right now, but that’s not going to stop me from baking cookies with the kid, having a sci-fi marathon with the boyfriend, and enjoying my weekend. ¬†So for now, I’m going to drink this last bit of coffee and wait for dinner to finish. ¬†It smells awesome, and I’m sure since Noodle and Ryan cooked it, I’ll eat every bite.

I hope everyone has a great weekend and enjoys this first couple of days with the Autumn chill and rain.  Happy Friday.