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?

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Normalcy.

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I was going to start off this blog in a general, all encompassing way. I was going to include everyone with a chronic illness in this post. However, I don’t know what’s in everyone’s head. Frankly, after trying to start writing the first few sentences, and deleting them about 5 times, I give up.

This entry is my thoughts. Purely me.

As some of you know, I’ve been having some problems lately. My heart isn’t acting up nearly as much as it had been, but when it does, it’s traumatic. My Crohn’s has been active too, with all the normal symptoms. From urgency, to extreme joint pain, and with today’s newest symptom, mouth ulcers.

It’s been a rough couple of weeks, which of course has been effecting my mood. It’s been hard to keep myself out of a rut. With the debilitating fatigue, it makes it all the more easy to just stay in bed.. why fight my body and depression. Of course, my anxiety is high as well. With missing the odd day almost 4 times a month, my bank account is hurting.. and with Christmas coming up, that’s scary.

To top that off, I found out my FMLA expired, and having never been on FMLA before, I didn’t know I was responsible for keeping track of when it expires. I figured that my company would notify me. Unfortunately that was not the case, and I randomly followed up on it and found it was expired. So there’s nothing better for anxiety than being in immense pain, living in the bathroom, and stressing about money.. than also having to worry about missing a day and losing your job because of it. Thankfully I was able to get an appointment with my chronic illness manager to renew my paperwork at the end of this next week. Still, it’s just one more thing I didn’t want to deal with.. talk about trying to choke back tears at work.

Anyways, what I’m getting at is, I’m at my.. wits end? It’s been very stressful, and I’ve been stuffing it in the back of my head, hoping for a better day, but I think it’s appropriate that I put this on paper/or in this case my blog, since it is Crohns and Colitis Awareness Week. This is one of the many facets of living with Crohns.. so why not share it?

So without giving away too much information about someone… well that’s not me.. a guy I know has a throat condition. He has a procedure scheduled coming up that will relieve some of the symptoms. Essentially a chance at pseudo-normalcy. Which is great, by all means, all of us with any kind of chronic condition deserve a break. It got me thinking though. Thoughts started tumbling through my head rather quickly. Admittedly I lost a lot of them because I didn’t think to write them down right away, but such is life.

I really don’t remember what “normal” is like anymore. I’ve been sick now, for almost 10 years. For a long time I struggled with the fact that the life I knew was gone. It took a long time to come to terms with it, honestly, it was mostly because as time went on, I started to forget what it was like.

In the years I’ve been sick, I’ve never achieved remission. Sure, I’ve had a group of months here or there that were “good” [Sidenote: not to be an ass, but “good” for most people with a chronic condition would send a healthy person running for the ER.] but I haven’t had a pain-free day, or a day without any symptoms.. period.

Thinking about normalcy almost.. almost upset me. It dug up some old feelings I’ve been avoiding for a while. Yet, I can thankfully remind myself of what I’ve gained from Crohns Disease as well as Inappropriate Sinus Tachycardia. I may have lost my old life, and I may not have much of a chance at normalcy any time soon, but I wouldn’t be me. I wouldn’t be who I am today, if I hadn’t been through what I have.

Through the last decade, I’ve learned to appreciate the “good” days, as well as the little things. I don’t know if I’d have appreciated a good cup of tea or a surprise phone call from a friend if I hadn’t been in a place where I felt like I had no one, and couldn’t even stomach water. I really doubt I’d appreciate the first warm spring day as much as if I hadn’t watched one from the other side of sealed hospital window.

Like tonight, I wouldn’t appreciate sitting on the couch with my boyfriend, watching stupid scifi shows.. if I hadn’t been completely alone and scared before.

So I guess the point of all of my rambling tonight, is that we, or I may not have “normal”. Even without normal though, there are good things. Good moments, good people, and memories to be made. Life isn’t over, life is just different. It may not be all fun and happiness, I’ll have bad days, but it’s important to remember that that’s not all there is.

 

In honor of Crohns and Colitis Week, today, I am going to embrace the good I do have. Things may not be normal, I may not have the life I used to have, but I do have life.

 

Fear and Loathing – IBD/IST and New Friends/Relationships

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Hi. My name is Sarah. I like animals, crafts, and the outdoors. I like to read and write, and oh yeah! Before I forget! I also have a couple random chronic conditions that unfortunately occasionally put my butt in the hospital, and require paramedics. Don’t worry about that though! You can save up all of your bitterness for years down the road and throw it in my face when we argue! It’s all good.

Yeah, I’m not very good at meeting new people. Friends, Lovers, or otherwise. I’ve had the same group of friends (most of whom I consider my family) throughout the majority of my illnesses. It took me a long time to cultivate those friendships from hospital beds, and ambulance bays. I learned who my real friends were, and I also learned that my being ill, can destroy relationships quicker than a bullet to the gut.

I’ve learned that even the most caring people can’t take loving a friend with a chronic illness. Romantic relationships seem to take the hardest hit. Eventually there is just this large amount of bitterness, resentment almost, because I intentionally or unintentionally change plans and lifestyles. Over the last decade, I’ve watched relationships crumble, friends fade away, and family get frustrated. It’s not for everyone, and it takes an extremely strong person to stand by someone with a chronic disease.

Naturally, after all this time, I’ve become almost.. paranoid about telling people about my illnesses. I try to take care of it right up front, just to get it out of the way. That way some people just back out right then. Either way, it’s out in the open. However, if I’m actually sick, like most other people with chronic illnesses, I tend to hide it. I walk through the pain, I make excuses for when I cancel plans, I pay extra care to my make up and clothes. We are experts at hiding what’s going on inside of ourselves.

Of course, I meet someone when I’m sick. I meet someone when I’m headed down a rough road. So of course, I try to hide it, “I’m fine” and “I’m okay, I’m sure”. However, sometimes you just can’t hide it, no matter how hard you try. The truth is right out there, in their face. Right out in the open, obvious. You. Are. Sick.

Well, here I go, I guess it’s just another risk I have to.. no, want to take. I just have to learn to be honest, and up front. Hiding it from someone I care about isn’t fair, they won’t know what’s real, and what’s fake.

So, hello. My name is Sarah. I have a chronic illness called Crohns Disease, as well as Inappropriate Sinus Tachycardia. My life isn’t simple, but it’s one hell of a ride, welcome to it!

 

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.

 

It’s been a long month.

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It’s been a busy, busy month. As most of you know, I have some health problems. Apparently, in addition to Crohns, my heart apparently has some quirks too.

My heart itself is fine, it just decides to beat excessively fast than it should at inappropriate times. It’s called Inappropriate Sinus Tachycardia (which is part of SVT). It’s practically harmless, but insanely terrifying, especially if you don’t know what’s going on.. which I didn’t for the first few weeks it was happening. I’d be sitting down relaxing, or in the shower, and my heart rate would shoot towards 200.

So this month has been filled with appointments with cardiologists, kidney specialists, and an electrophysioligist. I had an heart study last week, with the hope to pinpoint and maybe to do an ablation if possible (before they thought it was IST).

For now I’m just going without medication. I had tried one, but it dropped my heart rate too low and I need to think on it. I have another appointment with my EP in 2 weeks to discuss. I guess I’m just happy knowing what’s going on, not as scary otherwise.

Beyond that, things have been pretty good. With all the crap going on, I was able to realize what was really important and what I actually wanted out of life. I’ve been spending a lot of time hanging out with Noodle as well as working on projects at home. Now that I have the heart stuff starting to get figured out, I’m going to focus on extra curricular stuff for Noodle and new social ground for myself. I do have to say, thinking you’re having a heart attack a few times, really helps you get over a break up. Haha.

Now it’s just time to weasel out some good swimming classes for the kid, and I’d like to find one of those beer & book clubs for myself. Wish me luck!