Simple Exhaustion

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I am exhausted. Simply exhausted. So that infection in my head, apparently isn’t an infection. The kicker? No one really seems to know what it is. Basically I’ve had a headache since early December, varying from moderate to severe, but it’s always there. I had finally caved and stopped at an immediate care, which is where I was told it was an infection. They gave me steroids to reduce the inflammation and some medicine to help with the side effects of “vertigo”.

Well, last Thursday (today is Monday), I went back to the immediate care because for the few days prior, my headache was staying purely in the severe pain range. The doctor I saw there, referred me to the ER for a ct scan because she didn’t think it was an infection. So I gladly went to the ER, because by that point I was in enough pain to be consistently crying. Once I got to the ER, they didn’t want to do any more imaging since I had seen a neurologist back in 2015 for a couple of migraines (which cleared up – and completely different kind of headache) and my scans were clear. They treated me for a migraine and for pain and sent me on my way with a script for Imitrex (injectable).

My pharmacy didn’t carry the imitrex so I relied on my existing script for tramadol to try and manage the pain until I could get it. I essentially spent Thursday night to Sunday afternoon crying in my bed. Finally Sunday I cracked and headed back to the ER where they treated my pain again, and gave me a small pain med script for Norcos. They still didn’t want to do any imaging, and referred me back to my neurologist.

So, I went home crying, doped up on pain medicine that only took my pain down to a 5 out of 10. I came to work this morning, one, because I need the money, and two because of the headache and general “not right” feeling, I don’t want to be alone. I called my neurologist (as well as two others) and the earliest appointment I can get is Feb. 20th. To say that I’m stressed out and in pain, is putting it really mildly.

I am grateful though. Jon has basically been taking care of me and the house for the past few days, as well as sitting with me in the hospital trying to comfort me. Not only that, but a lot of my friends have been rallying around me, helping with anything from meds to childcare expenses and childcare itself. I don’t know what I would do without everyone, because frankly this is a bit much for me to take. I can deal with my tachycardia and my Crohns, but this pain is unbelievable, and to be honest, I’m scared.

The headaches I got before were two migraines with some low level headaches in between. They eventually just went away. Beyond the two migraines, I could function as long as I had some excedrin. Beyond that experience, I’ve never really had headaches. So this is completely new to me, and after a month of them going on, a week of them being severe, I’m worn down and really starting to doubt myself as well as my doctors.

I don’t know what I’m going to do. What if the headaches don’t subside before my appointment on Feb 20th? My painkiller script is only for 15 pills, I’ve taken 3 today to just get through and that’s barely keeping my pain at a tolerable level. I’ve already racked up $1,300 in copays for the Immediate Care and ER since Thursday, that’s not really a viable option, and neither is using up my remaining 4 days of sick time for the year.. or missing work beyond that. So I just don’t know.

I guess just cross your fingers for me. I am at a loss.

 

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Once Upon a Time..

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Once upon a time, I felt healthy. Once upon a time, I felt like I could conquer the world. Once upon a time, I felt like I could do anything.

At one time, a compliment was just that. Now, “You look good today” just makes me wince. I just want to say: “Well, I don’t feel good.” or “I guess I did a good job hiding behind my makeup.” At one time, a compliment was just nice, now I wonder if people won’t take me seriously when I say I’m not feeling well because I look “fine” or I “don’t look sick”.

In the past, I would look forward to each day. I would wake up early, stay up late. I could go all day and do whatever I wanted. In the past, I ran my own life, now I “count my spoons” and hope I can make it through the day without becoming exhausted to the point of tears. Now, I look forward to when my daughter goes to bed, so I can finally stop.

When I was healthy, I didn’t have to have blood draws on a regular basis. I went to the doctor only when the flu got me down. When I was healthy, I never had surgeries, and only stayed over night in a hospital when my daughter was born. Now I’m a regular on almost every floor and I can tell you what vein and what angle.

Now that things have changed, I’ve learned how much stronger I a.m than I was before. I can face life with a different outlook than most people I know. I know the fear of dying, I know the feeling of constant pain. I’ve faced my disease head on and while I’ll never win, I learned to keep fighting. Now that things have changed, I know that the lessons I’ve learned, help me to appreciate life all the more. I know I’m a strong role model for my daughter. I know that if I’ve made it this far, I can do anything.

Strength, Determination, and a Little Bit of Tears.

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When I go to the hospital lately, one of the first things I catch myself saying to the nurse or doctor is: I might just be being a wuss.  Then I go on to explain the reasons I’m there and watch the nurses eyes widen.

I did it last night, talking to my step ma. Didn’t even think about it, was just telling her that I’m sick again.  You know, just in case I get hospitalized.  That way they’re already aware when they get that phone call.

When I log into my support groups online, I’m almost immediately amazed with what my fellow Crohnies live with.  Amazed with what they endure each day.  I think “Wow, I wish that I was as strong as they are”, or “I don’t think I could handle that!”

What I fail to realize is that no one thinks they can handle some aspects of this disease.  We all cry, we all hope or pray that we will get better soon.  We all wonder at some point if we’re just being wussy.  None of us are given a choice on whether or not we can handle it, we are forced to.  We live every day with strength we didn’t even know we had, even if we want to give up, we make our way through the pain, the debilitating symptoms.  We don’t have a choice but to fight.  We.  All of us. Even me. Fight.

As I hobbled to the bathroom this morning, for the fourth time, I started getting upset.  My insides were trying to come out both ways but the pain forced me to walk slow. I started getting upset knowing that I could take some pain medicine, but then I’d be nauseous 24 hours instead of in waves.  That and still trying to run to the bathroom.  After I was done, I stood in front of the mirror and kind of beat myself up.  “I did this for a year before, now I can’t even handle a week?” “You’ve been through way worse than this, why can’t you handle this now?”

I had to remind myself that Crohns Disease sucks.  It sucks regardless of your symptoms, how long you’ve had them, or regardless of who you are.  I didn’t choose to be sick for a year, there wasn’t choice involved in that period of hell.  I just got through it, because what other choice do we have?  I’m not less of a person because right now sucks, not because of anything.

Those of us with Chronic Illnesses seem to beat up on ourselves because we feel we should be able too handle our diseases better.  When sometimes we just need a reminder that we’re strong no matter what. 

Christmas with a Flare

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Yup, I predicted it.  My Crohns Disease is fully flaring.  What is it with the holidays and this disease kicking my ass (pun intended)!?  I had started feeling better, then on Christmas eve, I started with some severe cramping.  It had been happening on and off for weeks, so I didn’t think a whole lot about it.  I just made sure that I ate really soft foods, and took it easy.

Christmas day was really rough.  I had to have gone to the bathroom upwards of 20 times.  Anything I ate or drank went straight through me, but the pain was manageable and my parents are familiar with this mess, so I wasn’t bothered by using their bathroom.  On the way home from their house, the pain ramped up again, but I was determined to not end up in the hospital on freaking Christmas.

Got everything in the house, the kiddo in bed, and laid down for some sleep myself.  I actually managed to get some zzz’s, but at some point my daughter woke me up (she woke up at 12pm thinking it was morning).  When I got up to get her back tucked in, my bowels started moving and the pain was unbearable.  I laid in bed for a couple of hours, trying not to cry nor wake up the boyfriend when I clenched up due to the pain.  Eventually I gave up and moved to the couch.

It was horrible.  I had been so determined to have a normal set of holidays, and it all spiraled out of control.  I sent the boyfriend to work, but seeing as how the pain was bad enough that I couldn’t walk, I called off of my work.  I tried to call my GI doctor’s office for the better part of 4 hours, turns out my GI wasn’t in, neither was my normal nurse.  I ended up playing phone tag with her until the evening, where she finally told me to go in for pain management.

So the day after Christmas, I ended up going into the ER and got some fluids (I hadn’t been able to drink since the day before) and some IV pain medication.  They let me sleep for a little while, and gave me a small script for pain meds for at home.

To be completely honest, I’m pretty scared and emotional about this whole ordeal.  Sure, I’ve had obstructions over the years, and that pesky fistula, but this level of pain and diarrhea?  Not since I first got sick 7 years ago.  The pain meds help take the edge off, but they make me incredibly nauseous.  I mean, if I move I have to fight back the gagging.  So I have two choices… extreme debilitating pain, nausea, or diarrhea or extreme nausea.  Peachy.

I just hate this.  I’ve been useless since Thursday night.  Despite the IV yesterday, I’m dehydrated again, so I barely even get up to go to the bathroom.  Either it’s too painful to walk, or I’m too dizzy and nauseated.  I don’t know how to make it through work like this, which panics me too.  I lost a good handful of days to Noodle’s back to back ear infections, and I don’t want to get in trouble for missing more days… even though I can’t help it.  I don’t know.

I’m glad I made it through Christmas, and what a good Christmas it was.  My daughter told me “Mom, this was the best Christmas ever.” and that made it worth it.  However, I would have much rather gone to work yesterday with my new pens and post-its, and counted down the minutes to get out of there instead of being stuck immobile on my couch, fighting tears from the pain.

This disease genuinely sucks sometimes

Vanity, Disease and Pushing Through.

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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.  

 

“You’d rather whine and cry about your Crohns…”

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As pretty much anyone who reads this blog knows, I have Crohns Disease. I have been diagnosed for 6 years, sick for 7 (got sick the day after my daughter was born). There is a brief description of it, but if you do a quick google search for “Crohns Disease Forums” or “Crohns Disease Blogs”, you’ll find some more. Crohns Disease is one of many considered an “Invisible Illness”, part of the IBD family along side Ulcerative Colitis. A lot of the time, someone with Crohns looks pretty healthy, accompanied by “you’re so thin, you look great”! That’s because Crohns Disease is internal, you won’t see any gaping flesh wounds or casts around an apendage. It’s all our insides trying beat us up.

It’s thought to be an auto-immune disease. Frankly, our immune system decides that it hates our literal guts and starts attacking. The outcome is severe inflammation which leads to ulcers, fistulas, bleeding, malnutrition, severe pain and a host of numerous other symptoms, some are life threatening. There is no cure as of now, so those of us with IBD are stuck on long term medications, most of which have some very un-friendly side effects. The problem is, is that because there is no cure, the best we can hope for is “remission”. Remission doesn’t mean that the disease has gone away, but that there are no current symptoms. Some people are lucky and find a drug that works for decades, many of us aren’t so much. So that leaves us with chronic pain and symptoms that aren’t so easy to talk about.

I use my writing as a way to vent about what I have to deal with, it’s one of the only ways I can think of. I figure, if I open my mouth and tell people what I (and other people) deal with living with a life long disease, it’ll give someone who needs someone to relate to a hand. Maybe if I open my mouth and share my story, or tell people when I’m having a bad day, maybe it will give someone else the courage to stand up and say “Hey! I feel really sick! I need support!”.

It really is hard though, for many reasons. I know one of the biggest reasons is that I don’t want to sound like a complainer. 90% of the time, I’m in pain, and in the bare minimum, I’m uncomfortable, yet to most who ask me I’ll tell you I’m fine. If you feel like crap every day, and say so, who is really going to believe you? Who is going to want to listen to you complain day in and day out, regardless of whether or not that’s your daily life? So I shut my mouth. It took *years* for me to start telling people that I don’t feel good. Even now, 7 years after getting sick, I still only tell people I’m having a rough day if I’m feeling *really* bad. Even then it’s confined to the internet or to a close few friends or my coworkers. When you’re sick a lot of the time, your worst fear is becoming a burden on your family or stressing them out. I used to be terrified of that, I did. I still don’t tell my own Dad when I’m feeling really sick or yucky, just because I don’t want to worry him. I don’t want to inconvenience my family, so I keep my mouth shut and deal with it. The only times I’ve asked for help is with the handful of hospitalizations, where I had my Dad watch my daughter, so she wouldn’t have to stay with me. Even then I felt horrible, even though I know I shouldn’t and that my family (at least my parents anyway) will always be there for me.

The downfall? If we don’t open up to each other, to our friends and family, we isolate ourselves. We end up suffering in silence and alone. If we don’t say something, anything about how we’re feeling, no one will know what we’re going through. How can one gain support if we keep our mouths shut? It’s the most horrible thing to be in pain and feel like your left all alone to deal with it, day in and day out. No one should have to deal with it, regardless of the condition.

However, as I learned today during a fight with a family member, it really does backfire. Sometimes, even when you just tell your family, and only when you need to, when you post online, just to get some kind of feeling that someone cares… it still will bite you in the ass. (haha, pun intended)

So today, while fighting about something completely unrelated, my own family member told me all about “what I’m putting my family through” because of my Crohns. Mostly because I opted out of a major life changing surgery (on the advice of a surgeon I’ve seen). “You’d rather whine about your Crohns, about how hard your life is…. (insert insults about me never finishing college – accounting is not my thing – and working in the stone industry) … Stop whining about how hard your Crohns is when you don’t have the nerve to get the surgery that you need (or don’t need, but she never asked about that). You’d rather put your family through the stress of scrambling to take care of your daughter.”
So let me go on the defense here. While we’re fighting about life choices she *MADE*, I get shit thrown in my face about a disease I have no choice about? I get shit because I made an educated decision with the help of my SURGEON to not have surgery yet? Put my family through the stress of scrambling to take care of my daughter? Excuse me? I’ve been hospitalized 5 times in 7 years, not too bad. Once when I first got diagnosed, and the last time being for the new inflammation… which has absolutely nothing to do with the surgery I had discussed 2 years ago with my surgeon (again, she would know if she asked). Yes, I most likely inconvenienced my family, but you know what? That’s what family is there for. To take care of each other, especially when one is sick. This family member wouldn’t know about that, since she stepped in for a sleep over 3 times since I’ve been sick. That’s besides the point though.

That attempt to shame me for something I have no choice over is why we keep our mouths shut. I don’t say a whole lot about how I’m feeling, I’m most active online for awareness, and yet I’m still “whining” about how hard my Crohns is? I’m (not) sorry that I told someone about the multiple obstructions I’ve had, or the fistula I had, maybe I shouldn’t have (definitely should have) told someone that I’m in a lot of pain and not in the mood to go out the bar. I certainly should never (most definitely) have said “Hey family, I’m hospitalized because my disease has stopped responding to medication and I have to try a new drug.” I should have never said “Dad, I’m scared..” because obviously said family member thinks that’s whining.

THAT is exactly why I open my mouth. Why I post on my blog about my IBD, why I spread awareness in anyway I can! The shame that she attempted to pin on me for something completely out of my control and most definitely not my choice. No one with a Chronic Illness, whether it be IBD, Lupus, MS, Fibro or anything should have to feel alone, none of us should have to feel like we have to suffer in silence.

So you know what my fellow IBDers, my spoonies, and my friends. I’m going to go all high school on you for a second. FUCK the HATERS. Tell someone, tell someone you’re sick. Tell someone you hurt! Tell someone if you need support! You need it! You most definitely DESERVE IT. Anyone who ever tries to tell you that you complain too much, or whine, or are inconveniencing them, don’t deserve your time much less your love. No one has the right to shame you for how you feel or any medical decision you make regarding *your* disease. Stand up! SAY SOMETHING! No one will know unless we open our mouths.

We don’t have to suffer alone, and those who think we should, aren’t worth the breath they use to speak.  Like my 7 year old says “Mama, I love you no matter what, even if your sick or if your grumpy.”

 

Sidenote:  I wasn’t originally going to post direct quotes from the fight I had, but the more and more I thought about it, the more and more I wanted to write this blog.  What my family member said to me is the very embodiment of why many of us don’t complain when we feel bad or sick.  I want people out there to know that yes some people are shitty, but not everyone, and we all deserve support.  So please pass around, and more importantly, be there for each other.  We’ve got to be honest about our lives, and our pain, and in the meantime, in the face of people like I had to deal with earlier, we’ve got to be here to support each other.

Antibodies are Assholes

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I am exhausted, I just started feeling a little teensy weensy bit like a human being again this evening.  I didn’t get any sleep last night, I spent the majority of the night up with the nurses trying to get blood drawn and IVs started.  I was so dehydrated (and my veins suck anyway) that as soon as the poor nurse would get a line in, my vein would blow.  They did start me on morphine, a small dose, and it didn’t even begin to cover some of the pain I was in.  I finally got my normal painkiller and now, almost 24 hour later, my brain can process thoughts correctly.  I was a hot mess this morning, it was obnoxious.

Obviously not a happy camper

Obviously not a happy camper

So, everyone and their mom has now looked at my cat scan.  It looks like we’re all on the same page now.  Looks like I have a partial obstruction, which is no surprise to anyone, but what has everyone’s eye is a very large stretch of *new* inflammation in my small intestine.  It’s drastically different then the scan I had in March if I understand correctly.  Anyway, so back in March, we had already had the idea that my Remicade Infusions might not be working anymore.  To try and prevent my body from creating antibodies to fight off the medicine, we had upped the dose and stuck me back on 6mp.  Looking at last night’s catscan, it doesn’t look like it did any good.  So this morning we sent off a blood test to see if my body had indeed made antibodies.  While waiting for that test to come back (couple days) we’re just going to go ahead and start looking into other meds.  I’m on high doses of antibiotics and steroids trying to get the inflammation down so I at least have a chance at a new med.

I’m definitely trying to do my best to hang in here and just have patience.  I was having a really hard time this morning, the pain was so immense and layering that on top of sleep deprivation, I was nothing but tears.  Now that I have pain relief, things should get a little better.  I’m looking forward to getting some (patchy – damn vital checks) sleep tonight.  We’ll see what these next few days hold.  Hopefully I won’t be here too long.