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.

 

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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?

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.

 

Summer Time and the Living’s Easy

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I am so incredibly thrilled that it’s warming up outside! It seemed like Winter was lasting forever and Spring would never come. Just to give an example of how wonky the weather has been, we had a freeze warning on Mother’s Day, which is usually the day we can start planting.

Either way, now it’s almost June and it’s finally not so damn cold. The garden is growing, the yard looks good. I still need to add some flowers, but it’s getting there. We’ve been using the new grill too, and with the deck umbrella out, all I need is an extra large glass of iced coffee.

School is out already too, the short one’s district let out early so they could start on construction in the school, so she’s thrilled and bouncing off of the walls. Summer camp starts soon, and she’s been outside with the neighbor boy almost every day lately. I could definitely tell that she was getting tired of being cooped up in the house with all of the rain and gloom outside.

Speaking of school being out, I can’t believe my short one is going into the 4th grade this fall. Time really does fly, and she did so well this past year too. Now if I could just get her to do regular chores, life would be golden. Ha.

So beyond all that, and a Crohns flare, things are actually going really good. Steve’s been helping out a ton, and work is going good. We’re going up to the lake house I think this weekend, and I can’t wait. It’s so nice to go up now since we can bring Thumbs with. When I was still taking care of my ex’s dog, I had to find a dog sitter since she had so many problems.  Potty-ing in the house, howling, chewing, food aggression.. you name it. Thumbs? Well my family can’t get enough of her. She’s so well behaved now, she doesn’t even need a leash up there. Getting out and up north is now stress free.

Oh and for you nosy girls that I call family, yes. I started a new relationship. Started dating Steve, a guy from my shop. It wasn’t intentional, as I wasn’t looking for a new relationship,  but it fell together with the prompting of friends/his family.   I’m a happy girl to say the least, it’s like I found an old soul, with old school manners.. and those of you who know me personally know that’s right up my alley. He makes me smile, and now a days? That’s important.

Honestly, if you had asked me a year ago if I’d be this happy with life, I would have laughed at you. Things aren’t perfect, they never are (mainly my health, but meh, you can’t win them all) but I’m definitely content. I feel like I’m finally finding interest in things again, doing what makes me happy. I spent far too much time living under someone else’s thumb, basically being miserable, it feels so good to finally be me.

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As for this summer, I’m just winging it. Definitely spending more time up north, and with family. It’s been nice reconnecting with friends too, and I do want to take a long weekend out to visit a few friends on my list. The biggest thing on my to-do list is continuing to do things that make me happy. Whether it be reading my books, writing more, or getting myself lost in the forest preserves. A bicycle is in my cards for this summer, now I can finally get one (and seeing as how Noodle’s birthday present this year from Steve and I is a new bike … and roller skates from me.. I’ll need something to keep up with her!) and take the short kid to the trails. Oh and can’t forget the concerts on my list. It’s going to be a great summer!

.. 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.

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!

 

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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