Chronic Illness: Battling Feeling like a Burden

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It’s a lovely summer afternoon, even if it is a bit humid outside. I’m sitting out on my back deck, with a cold Porter, my journal and my chromebook. My dog is sitting on one of the cushions on the deck, and I’m watching the not-so-little-anymore-squirrel babies climb all over the wooden fence.

It’s a nice afternoon, enjoyable, and I am most certainly grateful for it.

I haven’t been feeling good these past couple of weeks. It started off innocent enough, a bit of cramping, a few extra trips to the bathroom, lack of energy. All of which happen, even during “remission” from Crohn’s Disease. Admittedly though, with my past experiences with Crohns (the first 10 years out of the 12 I’ve had it) it did strike a bit of fear into my heart. I never want to be that sick again.

Anyway, I carried on as I normally do. Upped my water intake (as even a mini-flare will dehydrate me and set my IST & POTS off), at a little bit less, and generally took it easy. Of course, sometimes life just doesn’t work out the way you want it to.

Late last week the symptoms rocked their way up the scale of severity. Joint pain, near constant nausea, between 10-20 bathroom trips during the day (I don’t count at night as I’m too busy being an emotional wreck) and of course a headache and/or migraine and constant tachycardia.

I knew a full out flare was happening, but there was a problem. I had bought tickets for us adults and our kids to go see Reverend Horton Heat at Milwaukee’s Summer Fest. It was also super humid, and pretty hot out, which could put anyone on their ass, sick or not. However, one of my biggest takeaways from being chronically ill for more than a decade now is to never let your illness steal everything from you.

So we went, we made it there just in time, and 2 out of 3 of the girls enjoyed themselves (we brought the neighbor’s daughter with us) and it was fun. I had a super hard time regulating my temperature (Thanks Autonomic Dysfunction) which was pretty miserable and embarrassing as I was sitting there drenched in sweat and shivering. It was honestly worth it to see my kid trying to get video of it and grinning. The kids were all super tolerant of my extra bathroom breaks, as well as being generally exhausted afterwards.

However, as the spoon theory goes, I used more than my fair share of spoons that day, and was negative spoons the next couple. The night before last I was fucking done. I was in and out of the bathroom, and in immense pain. I couldn’t keep food down or even bother digesting it, and was so exhausted I would burst into tears at random.

I condemned myself to bed for the day yesterday because I just couldn’t function anymore. Beyond bathroom trips and needing more water, I just laid in bed. The nausea was completely over powering in the morning, and I spent more time running to and from the bathroom then I did laying around. I knew I had overdone it, and had overdone it for something fun, needless to say I beat myself up for having a day in bed.

Instead of laying there, sleeping, or just letting my body rest, I worked myself up about the things I should have been doing. It was absolutely ridiculous. However, when you’re chronically ill, in chronic pain, or disabled it’s a constant worry.

I’m not pulling my weight.
Everyone has to take care of me.
I should be doing more.
I’m not as sick as [insert time in the past].
The kids are going to hate me for not being fun.
I have so much to do.
Laying in bed just makes everyone else pick up the slack.
I’m a burden.

It’s absolute trash, not to mention bullshit.

It’s just hard to realize that sometimes you need a little rest. Sometimes, you have to take a day off.. just like any able-bodied person. It’s also important to say that anyone you’re with, whether a significant other or family, should love you enough to understand this.

Some days we just have to put our to-do lists aside, and take a day or however long to recover from pushing ourselves further than our bodies allow. There’s no sense in running ourselves on negative spoons, making our bodies worse for the wear, unless there’s no other choice. When that happens, we can only do our best and rest when we can.

It’s super important to remember that no one asks to be chronically ill, and almost all of us would rather be living normal lives. It’s important to give people the finger if they give us any shit for resting, healing or being sick. That includes ourselves.

Take a break. Get those spoons back.

 

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That Familiar Pain & Immediate Fear

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As anyone with a Chronic Illness can attest, when you’re lucky enough to go into remission, the first twinge of pain or hint of symptoms can send you into a straight panic. Once you’ve had a taste of living normally again, it’s hard to face the (often times) inevitable downward spiral into all of the stuff you’d managed to put out of your mind for a while.

I’ve been pretty lucky with my Crohn’s Disease. After surgery some odd years ago, minus some smaller flares here and there, I’ve remained in remission. I am especially thankful for that since I don’t think I couldn’t done with a full blown Crohn’s flare when my heart issues first popped up. Anyway. It’s been really nice. Usually being able to eat what I wanted, live pretty much pain free (from that anyway) and just function like a normal adult. Whatever little flares I had, pretty much vanished when I left my previous job. Less stress and all.

However, these past couple of weeks, I’ve been having some of the old symptoms pop up. Urgency, cramps, joint pain, dehydration headaches, you name it. Two days ago, when I felt the ever familiar waves of stomach pain, my heart sank. That’s when I knew it wasn’t just a “mini-flare” that would go away in a few days.

As I was sitting outside yesterday, my mind was just scrambling for comfort and reassurance. When you’re chronically ill, a support net is a necessity, and a lot of us don’t have much of one to begin with. Once you are lucky enough to go into remission, whatever support net you had managed to cobble together, essentially vanishes. To the rest of the world, you’re healed! It’s over!

Then it comes back.

So I sat there, really feeling the need to talk to someone but unsure of who to reach out to. I was just scared to be honest, I still am. It’s hard to figure out who to chat with about how I’m feeling about being sick again.. when so many people had to deal with me being sick for the better part of a decade? There’s massive guilt and shame involved when someone who is chronically ill needs help or someone to talk to. The longer it goes on, then more we feel like a burden to those we love.

Hell, it’s even hard to write about it. I’ve literally been blogging about my Crohn’s Disease on here for a decade. There’s that voice in my head saying: don’t you think people have read about this enough yet? It’s just difficult. It really is.

I guess I’m just writing to get this off of my chest. This sucks.

 

Winter – Depression & Crohns rear their Collective Heads

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Winter has always been rough for me. My depression and anxiety tend to get worse, usually from late December until spring. Usually my Crohns Disease acts up (my anxiety levels up my symptoms) as well. However, I tend to look at it like this: There’s no better time to be sick and depressed than winter. Why? Because fuck the cold and snow, that’s why.

It’s not big deal though, although I hope my (few) friends understand why I’ve been so distant lately. Sometimes it is just hard to push through the brain fog. So for now, I’ll remain cuddled up on my couch with my books and Reddit.

Life other than all of that is alright.

The kid is doing fantastic, she’s not the biggest fan of school this year, but she’s doing great. She’s got one hell of a personality now, she’s like my little punk rocker. She’s super open minded and accepting of others, and thanks to the current political climate has a firm dislike of racists and nazi-scum. She asked me to give her an undercut the other day, so now she has the underside of her ponytail buzzed and the bottom 4″ of her hair is sea green/blue. She is definitely something else, and despite the daily video calls with her other little gremlin friends, I am indefinitely proud of her.

The boyfriend has been job hopping. Trying to find one that is a good fit for him, might as well take advantage of the interviews and look for a great position and company to work for. Things are going great with us, so nothing new there.

Our Animal House has been good too. Vader (our neighbor’s old cat) has settled into the house fantastically. Smudge is still not too fond of him, but they get along. I do have to say that I love Vader dearly. He is such a sweetheart, I couldn’t ever imagine losing him even though he hasn’t been here nearly as long as Smudge or Thumbs.

Things calmed down with Jon’s ex. That’s something I’m glad is basically over. She had denied him visitation over the summer (I guess she got angry that we questioned her parenting choices and called her bluff on abandoning her daughter at our house). So we took her to court, and her lawyers basically told her to go kick rocks and give us our visitation, do half the driving and let Jon in on all decisions. Unfortunately Jon is still stuck paying for the son that is not biologically his (Ex cheated on him, got pregnant, tried to pin it on Jon) as Pennsylvania will not cancel child support, despite paternity unless another man takes his place. Unfortunately they do not require her to work, so she’s still living off of CS & Welfare. Alas. Just like with my daughters dad NOT paying child support, EVER.. we are completely okay with the kids knowing who does what for them, and seeing us as examples. Neither of us will bad mouth our exes in front of our children, but we also don’t lie.

As for me? I’m still on hiatus from work. I’ve interviewed with a few places over the phone, and turned down several in person interviews. I’m not sure what my plan is for right now, but our situation works for us and I’m enjoying finally being able to spend (forced) time with the kiddo even if she’s at the age where she’s not so keen on it. Ha.

As the months drag on, I still do not regret quitting my last job. I’m reminded almost daily by Timehop showing me the posts about how miserable I was from the last 8 years. I may have my normal depression and anxiety, but I am no longer having daily anxiety attacks about going into that toxic environment. I hear from old coworkers and work contacts every once in a while, and it seems like it hasn’t gotten much better beyond a crackdown. All I can say there folks is I learned a life lesson, one that I’ve drilled into Jon (as he walked from one recently in order to take another higher position) and one that I’m teaching my daughter. Work is work, don’t let them destroy you and your health, because at the end of the day, you are expendable. No job is worth being miserable. Not even one you devoted the better part of your 20’s and early 30’s to it.

So beyond all that rambling, hey. At least I’m writing again. I have been slowly working myself into writing again. Even if it’s just free writing a few sentences a day. I’ve just got to get into the habit. Writing is the easiest way to clear my mind and lift my mood.

On that note. I’m off to eat some chocolate and cuddle with the pupper.

Crohns & Colitis Awareness Week (December 1-7th)

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More than a decade ago I was diagnosed with Crohns Disease. I had first gotten sick almost a year earlier, unfortunately my early doctors did not think to check for Crohns. It wasn’t until I had lost just under 100lbs and my life consisted of ERs, Fevers, Pain and my bed that I just happened to be in the right place at the right time.

I happened to go to a specific ER, where a group of GIs, one of which has devoted a significant portion of his life to studying IBD. It took one look at my chart and medical history for him to look at me and say “I think you have Crohns Disease”.

When I first became sick, I had only heard “Crohns Disease” once as a good friend of mine’s mother had it. I didn’t know that there were multiple options for treatment, I didn’t know the complications, I didn’t know anything. The following years were lonely. I found out another friend of mine had Ulcerative Colitis (same family of IBD) (who ended up helping me with my daughter way more than she had to prior to my diagnosis) and met another friend with Crohns. It was still odd talking about it.

There wasn’t medication commercials on the TV, Facebook wasn’t public yet (or popular until later) so instant support groups were out, I had no idea that so many people had the disease and were suffering right along side of me. To make it worse, my then husband and my family didn’t quite understand that there was so much more to it than a “bathroom disease”. No one around me understood the pain, urgency, fatigue, nor the side effects from my medications. I looked healthy enough, and at size 0, my friends were envious.

Check out Noodles face! Note: this is after I got sick, and before my diagnosis.

The first few years that I was diagnosed were the most lonely I had ever experienced. I had so much shame about a disease a couldn’t control. I just dealt with it as my disease stabilized. Having a bowel disease wasn’t something you talked about at parties, and I even tried to hide it from my close friends (online).

A couple of years later I had developed severe inflammation again, it started turning into scar tissue in my small intestine and colon. I learned what a bowel obstruction was, and after the first few, it became near constant. I was in and out of the hospital monthly.

It seemed like all there was to my life was Crohns. That was it. Now that Facebook was more popular I leaned heavily on my online friends and found some support groups. Furthermore I said “Fuck it” and started being vocal about what I was going through.


Everyone online was bombarded with what I was going through. I started TELLING people I couldn’t deal with the symptoms, I started EXPLAINING what Crohns Disease really was. I’d post pictures from the hospital or from my infusions. Showing people what Crohns Disease was.

Then I started hearing from people. I found out my then boyfriend’s niece has IBD. I had people acknowledging that even though people with IBD didn’t look sick, they were.

I had support and I tried to share it with whomever needed it.

I eventually had a bowel resection a few years ago after so many bowel obstructions I lost count. Even after being in the first 50 in IL to try Entyvio. Luckily, I have only had minor problems since then.

I am technically in remission. My last blood draw showed elevated levels of inflammation, so we’re just watching and waiting. So unfortunately I’ve become complacent with this disease (and also focused on dealing with some other issues, IST & POTs) as well as quiet.

However, I’ve learned that being open with the world about my Crohns served a purpose. People remembered. I have talked to just under 60 people in the last two years because of Crohns. People who have the same symptoms, were being diagnosed or just diagnosed, people in the hospital, family members of Crohns patients. People who just needed questions answered, who needed to vent, who needed someone to understand. I’ve talked with friends, their family members, friend’s friends, and strangers who found me through my social media platforms. I will never ever mind, I remember how hard it was in the beginning, I remember how horrifying and lonely it can be. Worst of all, I remember not knowing anything or what was going to happen. So I will always be up to talk.

It occurred to me last night, that THAT is a benefit of the awareness week. The more people know, the more people available to talk.. the more people who might recognize the symptoms in themselves and loved ones and get a diagnosis. The more people might not feel alone or overwhelmed with what they’re facing. The more people talking about it, the further we get.

So Happy Crohns & Colitis Awareness Week and remember to keep talking! It’s more than a bathroom disease!

Fatigue & Stfu

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I am exhausted, I feel like I haven’t slept in days. It’s reminiscent of my rambunctious teenage years, where I’d go out drinking cheap beer and staying up all night, but still some how make it to work the next morning and survive.  That’s what it feels like anyway, even though I slept almost 24 hours since Saturday Night.

My eyes burn, my head is woozy, my muscles feel like I just got done running a marathon (add in that my fatass doesn’t run). I’m so tired, so out of it, than when I went to stand up earlier at work, I almost blacked out. (BP dropped too fast) Almost everyone I have seen or talked to today, in and out of work, asked me if I was okay. Apparently I look like death despite my jet black winged eyeliner.

This is the worst my fatigue has been in a decade, since I was first sick with (undiagnosed) Crohn’s Disease. I’m usually a trooper when it comes to toughing it out, coping, and getting through work, but it was enough that I called off work yesterday. It’s just rough. I’m trying to cover everything, you know, up my teas, oils, supplements, and eating, all the way to getting enough sunlight. It’s a task just to get out of bed these past few days, not because of the pain, but because my lack of energy. I can deal with the pain, just not having the energy to sit up in bed is what’s kicking my ass. I’ll either figure it out, or it’ll eventually pass, but… I’m having a hard time.

I don’t particularly like bringing attention to myself at work when I’m sick either. It’s really nice when people ask how I am, but I get really aggravated when it’s followed up with a typical “I know how you feel, I had…” statement. One girl at work really is bad at it, and I’ve been trying for years at this point to not snap at her. This morning it went like this:

Her: “How are you feeling?” Me: Not great.. Her: “Oh, I know how you feel! I’ve been tired lately and this weather has been giving me a headache!!”.

I smile, and go back to work, but in my head I just scream “a booze headache and lack of sleep isn’t the same as being sick for a decade!” The worst is when the other girl at the office says “Well, if you feel that bad, just go home!” I’m sorry, I can’t. If I went home every time I felt like shit, I’d maybe make it to the office once a week, I have to support myself, I don’t have any other choice.

Yes, it’s a bit of a pity party, but I’m tired of it. I’m not going to say anything nasty, but you bet that I’m strangling them in my head when I’m smiling on the outside.

I’m just frustrated.

 

I hope I start feeling more like myself soon.

 

Headaches and Headache Balm

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Most of you know I’m pretty science based. Hell, when you have a chronic illness, you kind of have to be with all of the treatments you have to endure. I’m the first one to throat punch a person who tells me to stop my meds and eat some raw foods to cure my Crohns, or take a walk instead of take my antidepressants. I don’t particularly believe in god, though I tend to swing more towards agnostic rather than militant atheist these days. (Fuck organized religion though!)

However, over the last year or so, I’ve surprised myself by being a bit.. holistic? I’m not even sure that’s the right word I’m looking for. I started using essential oils to treat my anxiety and headaches among other things.

It all started back when my heart started acting up. (Inappropriate Sinus Tachycardia, although as time goes by, it seems closer to POTS, but I don’t have the funds to see a different EP for a second opinion.) I had always been a very anxiety-ridden person, and having a racing heart that occasionally needed to be medically stopped, shot my anxiety through the roof. So a friend of mine gave me some essential oils to try for my new-much-more-hard-core panic attacks. They seemed to work.

So I started investigating different kinds of oils and what people use them for. Now, I’m not one to say “Oh, try ingesting 3 drops of this oil, twice a day and you’ll be cured of this ailment!!”, because that’s crap, and we all know it, but I do think that certain scents are calming, and certain herbs have been proven to work as anti-inflammatory (and disproved – I’m looking at you Turmeric.) Over the past year, I started diffusing certain scents that help me calm myself down when I’m overly stressed or anxious, or help me (or my daughter) sleep when a bout of insomnia strikes.

I’ve also started using Headache Balm (which is essentially peppermint and beeswax) which delivers a cooling sensation when applied to the neck and temples. Combine that with breathing and some Excedrin, I can battle my way through a tension headache or migraine without having to use my injections or head into the ER for IV medication.

Last night/today was a prime example. I went out to have drinks with a friend of mine, but a couple hours after leaving the house, I got that twinge in my head that signaled a migraine coming on. I borrowed some of her headache balm and called my boyfriend for a ride. I came home and was able to get some sleep with more balm and a lot of Tylenol.

Woke up this morning, and it was still there. It was miserable. Jon massaged my head with balm and I took a Zofran to battle the nausea that came with it. I also used some oils to keep my anxiety down (which I always get once I get nauseated or am faced with using my very expensive medicine that I can’t afford). By mid-day, it was finally subsiding, with no real damage beyond time lost, so I came home to nap.

Now, I’m enjoying my Saturday night, curled up in my bed (with a a bit of a Crohns flare, been bothering me for a few weeks) and my diffuser going to help me stay relaxed.

The way I figure it, is if the balm and oils has a placebo effect, than great! I’m all for placebo effects! If they don’t work! Then my house smells great and I’m moisturized! I’m not delusional enough to think that some ginger oil is going to cure my crohns, but I do think that some lavender oil helps me sleep, and some lime and geranium picks me up. No matter what, patchouli has always helped me stay grounded. So why not give it a try?