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.

 

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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?

Going Down, Down, Down..

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Now where did your minds go when you read that title? Unfortunately this blog isn’t about that. It’s more or less about dealing with anxiety and depression. Yes. I have both, and yes, I see a therapist as well as take medication to try and stabilize myself. However, it’s not a perfect fix, it never is. I still have down days, things get rough for me, and all I want to do is crawl into bed and hide under my blanket until I feel a bit more “normal”.

Normal. That’s funny isn’t it?

I’ve always been a fairly anxious person, pretty much as far back as I can remember anyway. I remember hiding my bed as a child and worrying about something I said months prior. Nowadays, I tend to get stressed out pretty quickly, and when I do, my mind finds things to worry about.. almost obsessively. Finances, my daughter’s sports/camp, work, friends, my chores. You name it, and I’m dwelling on it. This is the main reason I started talk therapy, which really seems to help.

However, I also deal with depression. Most days I function completely normally, hell, sometimes I don’t even notice it. Then other days (usually after having a string of anxiety-filled-days) it’s like I’m in a deep hole. Honestly, that’s the best way to describe it. It’s like being stuck in a deep, dark hole, and in my case, I know it’s depression, I realize my life isn’t horrible, and I realize whatever I’m throwing around inside of my head isn’t really a life-ending-you can’t do anything right-kind of thing, but I still can’t climb out of that damn hole. It’s so hard to explain it to people. Sometimes it changes too. Sometimes it’s a pity party for one, where I’m just feeling helpless after what I’ve been through (Crohns, Abuse, Divorce, Single Parenting). Sometimes it’s a creeping helpless feeling about things I’m worried about in the future… because my brain thinks that obviously I can’t do it/take care of it.

It’s infuriating. Having both anxiety and depression feels like your brain is trying to tear you in half. “If you don’t get out of bed and start working on this, we’ll fall behind, and then we won’t make the deadline” “Wait! Why even try? You know it’ll just get screwed some how and you’ll get your hopes up for nothing.” So you lay in bed berating yourself to get up, yet telling yourself to not bother. I want to tear my hair out just thinking about it.

I guess what really matters to me, is that I get through it no matter what. I have my good days and my bad days, but I always come out standing, and I make sure that everything is good in my daughter’s little world. I know I’ll make it through, and I know I can do it. It’s just the actually process of fighting through it that gets me.

So here I am, having a rough couple of days. I know it’ll pass eventually, and my outlook will be better. For the meantime, I just wanted to post something, just in case someone else reads it and finds that they can relate.. so maybe someone else doesn’t feel quite so alone.

.. because I’m still here.

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I planted my garden today with a little help from Stevie. Apparently, I’m still not strong enough to drive those metal poles (for my cucumbers and green beans) into the ground far enough to be stable. I planted two different kinds of tomatoes, some bell peppers, of course my green beans and cucumbers (cucumber salad here I come!), radishes, lettuce and carrots. I’m excited that it’s finally warming up enough to plant, although we had a frost advisory last night.

I didn’t plant any flowers yet, that’ll be next paycheck as I tend to go a little overboard with them. Definitely looking forward to picking them out. I know I’m going to get Margarite Daisies, Snapdragons, and some double impatiens if I can find them. I have so many pots to fill, and a flower bed (any shadow loving flower suggestions anyone?). My short kid is in charge of her flower bed, so I’m assuming she’ll pick out the brightest colors she can find.

Haven’t been feeling my best lately, my Crohns is acting up just in time for World IBD Day. It’s really doing a number on my outlook/mood though. I guess I’m just frustrated that it’s limiting what I can do again, and I’ve been missing a bit of work. That, and of course, I’m worried that I’m going to make those around me upset. I’m sure my co-workers are getting tired of me being always sick, and I don’t want to worry my family. My daughter doesn’t seem too phased by it though, and Stevie is really understanding, which helps a lot.

I’m glad I was able to work through getting sick while weeding the garden earlier. I’m really proud of the fact that I was able to continue working through the pain (with the exception of a bathroom break) and get everything done. It really bothers me when I am not able to do what I used to, but I’m slowly learning how to pace myself and how to work around limitations. Although I’m pretty sure that I got a little snappy when I was offered help, but whatev.

Now? Time for some grilled pork chops (that I’m not grilling.. yay!), artichokes and baked beans. Then I shall be curling up to finish my book. Good weekend.

Chronic Illness Can Go Kick Rocks

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Today was a rough day, as they all have been for a couple of weeks now. My Crohns Disease seems to have left the Remission parking space it had occupied for almost a year.

Don’t get me wrong, I had a few “mini-flares” but nothing longer than just a couple of days. This weekend though, it progressively got worse and today I called one of my doctors. I was lucky to get in to get some IV fluids, potassium and steroids, and I’m hoping that will kick me back into remission. We shall see I guess.

It’s like my body just wanted to remind me that my Crohns is still around, I’ve been dealing primarily with my heart crap, I almost forgot about IBD. So there I was, getting back to normal life, and my intestines nope-ed right the hell out of normalcy.

Ah well, everything else in my life is going pretty nicely. If anything, I’ll just use this as an opportunity to appreciate what and who I do have in my little world. Nothing like a shot of reality to help out with that.

Here’s to another 30 years pushing forward! Happy Birthday to me! Last day of 29 will be spent reflecting. :)

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Caffeine Fueled Honesty

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Rebuilding self-esteem. It’s like running up hill, underwater, drunk, and if you’re unlucky, naked and with a target painted on your back. Once someone tears you down, it’s ever so hard to get back on the same playing field.. or anywhere even remotely near it. It’s like trying to quit smoking by snapping a rubber band on your wrist.

Before you realize what happened, you’re hiding bits and pieces of yourself that you’ve been taught are damaged, or annoying even. You’ll apologize for things that don’t need apologizing for. You’ll keep thoughts to yourself, because you’re so scared, almost terrified in fact, that if you let those thoughts out, you’ll scare people away.

All that’s left is this shell of a person, feeling frustrated, down, depressed, and hurt. It’s just this shell that dislikes so, so many things about itself, that it desperately wishes it could change. It wishes it could change it’s hair, it’s weight, it’s health, it’s mannerisms. It wishes it were different. Just a shell.

 

 

 

Over the last handful of years, I’ve had a hard time with myself. I “learned” that things that people once loved, were actually obnoxious, annoying and embarrassing. I had been told that I was too loud, that I should stop debating, stop arguing, and “not get so riled up about political issues”. I had it forced in my brain, that taking a down day (during a flare, or even an every day cold) was selfish. That laying on the couch was lazy, even as my insides spilled onto the floor. After a while, my brain believed it.

I embarrassed my friends and family when I became passionate about something. I picked on people too much, it was okay for people to pick on me, but fighting back was wrong. No one likes a girl who stands up for herself. That when I was sick, I inconvenienced others. That I shouldn’t complain, I should just deal with it, because it wasn’t as bad as I made it out to be. I learned that I made people miserable, especially on days when I couldn’t drag myself off of the couch. That I ruined my friends and family’s weekends when I didn’t want to something my body wouldn’t tolerate.

 

Time went on. I started to keep quiet. I stopped debating, I stopped arguing, I stopped discussing world events. I kept my opinions about my books, and the world around me inside my head, more and more. I withdrew. Things that I was once known for, quirks, even character flaws if you will, I started to apologize for. If I got sick, I was sorry. I was sorry for everyone who had to deal with me. If I got loud about something I cared about, I apologized and immediately felt embarrassment flush across my cheeks. I stopped teasing the people I cared about, I stopped showing my personality at home and out with friends. Oddly enough, the only people who really saw the real me, was my co-workers. I hid from everyone else. I even started hiding from myself, picking myself apart. Disliking who I had always been. I looked in the mirror and felt ashamed at not only my changed body from all of the medicines and years of disease, but I didn’t like myself anymore.

Complete honesty here folks, which I’ll admit I haven’t let on my blog for a long time. Just remembering how I used to feel.. I’m sitting here with tears streaming down my face.

I felt like a shell of a human being.

 

 

Then all of a sudden, I was alone. It was just me and my beautiful daughter. My daughter who looked up to me, my daughter who has the same mannerisms, and one hell of a similar personality. If I disliked myself, did I dislike her? What was I teaching her.

One day I was out with my friends, and I made some horrible joke and someone I didn’t even know laughed. I opened up a little bit more. I started to meet people for coffee and drinks, people I’ve known for years and years, and new people. People who liked my quirks, as well as my friends in the chronic illness community. I started to realize that maybe, just maybe, the old me is in there somewhere. Maybe, she’s not that bad?

 

Over the last handful of months, through the holidays and then through my heart-scare, I started focusing on myself. I started to try and re-learn to be.. well.. me. I’m not perfect, in fact, I have enough flaws to cover my entire county. However, what I’m slowly learning is that the most beautiful things are flawed. Eternally so, and that family and friends will love you despite those flaws. I’ve been working on my self-esteem, and my self-worth a lot, and in the process have been learning a lot about myself.

I’m not there yet. I’m not back, I’m still a few blocks away from the old me. I realized this, again, last night when I started apologizing for crap that had no need for a “I’m sorry”, much less an explanation. I’m still guilty of shutting my opinions up in my head. Most importantly, I’m still working on being open about being ill. I get scared that my friends will leave when I get sick again (although in reality, no one left who was worth spit in the first place). I get scared that new friends, will not understand, that they’ll bail when I come clean. For months now, I’ve been forcing myself to be open with everyone I meet, that I potentially could see a friendship with, about being sick. I’m learning to tell my family when I need help, or when I’m having a hard time. It’s a learning curve, all of it, but I’ll get there because it’s worth it. No one should have to feel like a shell of themselves, no one should doubt themselves that much, and no one should have to feel the kind of emptiness. Cheesy as it may be, but everyone is different, we all have different battles we’re fighting, and we all have different quirks and personalities. What I wished I had learned a long time ago is..

.. if someone doesn’t like who you are, if a person doesn’t support you, from family to friends and everything else.. kick their asses out on the curb.

 

‘Cause nobody got time for that shit.

 

Haha.