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.

 

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.

Moving on up!

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After the craziness of the last few months, life is starting to take on a bit more normalcy. It’s been one hell of a ride, that’s for sure! For once though, I feel like I am coming out a better, happier more knowledgeable person.  

So my heart (be still my beating heart haha) is doing better. I haven’t had any more major issues beyond a couple shot lived episode a few weeks ago. I also prepared myself and learned how to cope if they do happen, and I have a prescription if things get worse again. So far no worries. Back to basic life for me. (Hopefully my EP was right and it was a short lived thing!)

I however did get quite a bit of anxiety from the whole ordeal. I think having your heart stopped and restarted in the ER will do that for anyone. So I took a first step and found myself a really sweet therapist. It’s nice to be able to really tell someone everything… something I haven’t been able to do in about 5 years. She’s helping me learn how to cope with my illnesses as well as being a single mom (again). I’m glad I took that step, as it seems to be really helping me straighten myself and my life out. She’s given me great advice from how to deal with doctors, (she even found me one when I didn’t like the new one I had) to how to take steps to stop being a doormat for people, to great budgeting ideas and resources for writing and art.

Beyond that, I’ve also been making it a point to write and read daily again. Just to get the creativity flowing. I started feeling more confident with myself just doing that.

Oh! Even managed to go a few miles at the forest preserve already. It was so nice out, and felt good to get active again. Noodle and I are just starting to work on the yard for spring (I’ve got a feeling it won’t be as easy as taking it all down for winter). We’re both excited for the garden this year, as well as planting our flowers! She’s really involved with it too!

Nood has been doing great! Grades are steady in school with good behavior. She really has stepped it up with helping at home with chores. I’m proud of my little munchkin.

I’ve also been able to start reconnecting with friends I haven’t seen in forever! I forgot what having a social life is like! What I’m working on now is finding a club I want to join. I’ve been looking for quite sometime, just can’t decide.

All in all, things are going well. I hope the trend continues! It feels so great to finally feel happy again after all those years filled with doubt and anxiety! Looking forward to Spring!

Have a nice night everyone!

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Stress: It’ll Make or Break You. (Hint: Make isn’t fun either.)

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There’s always another curve-ball it seems like. It’s always one thing after another, or at least that’s what it seems like this week. Sometimes, it’s hard to keep a brave face on, to keep the smile going. ¬†It feels like I’ve been asking for a break from the Universe for years now, but that’s how it goes.

After my surgery, I was positive that things would get a bit easier. ¬†I mean, hell, I wouldn’t be admitted for sleepovers at my favorite hospital every month.. so that would be a bonus? While that’s absolutely true, I haven’t had more than a couple bad days with my Crohn’s Disease since, life just throws one more thing at me after another.

So surgery happened, and then the headaches/migraines started. MRIs (and the different variations of that I had done) showed nothing. The doctor ran all the neurological tests, and nothing. Tried some pills, and after a month and change, I occasionally get a day where I only get a headache for part of it.

I finally start getting used to the headaches, and learn how to “head them off” when they start, and start altering my lifestyle to maybe get rid of them all together. Stress makes everything worse, so why not lower stress in addition to exercise (hello weight gain from new headache medicine) and eating better. Things are looking up!

Until my car takes a big giant shit on that plan. My transmission hates me, so after it started slipping gears, I took it to my mechanic, who despite my insistence that I just had one done, blew $150 and gave my transmission a flush. That didn’t work, so I took it to a well-known transmission joint. They kept it for a week, changed out the valve body and a couple of other things.. and nada. So I took it back again, and for the tune of $1500 to $1800, they are fixing it. They said it would be a week… that was more than two weeks ago.

We rented a car for the first week and a half, but after running dangerously short on money (and hello beginning of the month, also known as *ding* your mortgage is due) we returned it.. after being told, oh, it’ll be done by Monday at the latest. Well, that was this past Monday.

While all of this is going on, Ryan’s job runs out of work. So when we need the money the most, we’re relying on my income and side jobs. It kind of works out, I was able to drive his truck to work this week a bit, but of course the side jobs come out of the woodwork on days I have to work.. so I was out of luck. Thankfully Ryan’s brother lent me his car, which was a life saver. Lets just say I was having an anxiety attack before he offered.

It doesn’t help that the guy snaps on me whenever I call for an update (because they have YET to call me to let me know what’s going on). So after a long day at work, where my office is SEVERELY understaffed temporarily (of course, while all of this is going on.. seriously, I must have some bad karma or something) and I’m running at stressed-the-fuck-out, I get to call this guy, and get snapped on, when I’m just looking for an update on when my life might get easier.

Then add into that, my daughter’s school is nothing but a pain. School starts on Tuesday, and of course, they have yet to send out ANYTHING about transportation or, I don’t know, school supplies or even her teacher. I’ve been trying to arrange a bus to pick her up from daycare, and it’s a major pain in the ass. Meet and Greet is on Monday (and I have no idea who her teacher is) and I promise this right now, if I go in, and they don’t have transportation set up, I will have a melt down.

All of this is going on, and it takes a toll on you. Ryan and I have been fighting like cats and dogs over the stupidest shit, just because we’re both so stressed out. It’s hard to remember that the other person didn’t cause this. Then, I find myself snapping on Noodle over stuff I normally let slide.. and then apologizing to her and beating myself up over it for days. It’s not easy, and I’m just waiting for a call that something else has gone wrong.

I’m trying to focus on the good things. ¬†Like we both *do* have incomes, and mine is stable. Noodle got to go to the summer camp at her daycare, so instead of dealing with me being stressed out, she got to go mini golfing, to the water park and beach and to a festival. While I beat myself up about this being a stressful summer, I have to remind myself, Noodle’s had a pretty good one! I have to remember, I have my house, which thankfully didn’t incur any damage in that tornado that plowed through town last week. As of now, my car is being fixed, even if it’s a major inconvenience at the moment, in the years past, we didn’t have cars, or relied on one. Of course, even though my body isn’t completely okay, my Crohn’s is damn near in remission for the first time in just under a decade.

I’ve got to remind myself, while things are stressful right now, I’m damned lucky to be sitting at home, writing, with a cup of tea, a sleeping child, and my dogs (and asshole cat) lounging on the couch. They could be a lot worse, they have been a lot worse. We are lucky.

Infusions and Awareness Week

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Mouse Juice Time

                       Mouse Juice Time

December 1-7th is Crohn’s and Colitis Awareness week.¬† It’s only fitting, I suppose, that I am in the hospital for a few hours to get my Remicade Infusion.¬† As you can see from my expression up there, I’m not having a good morning.¬† I’ve had a headache (no fever so the infusion will go on!) for 3 days, and I can tell it’s infusion time since my Crohns Disease is acting up.¬† It was a hot rush this morning to get out of the house, between getting the kid ready, and getting myself out of the bathroom, I was damn near in tears.¬† I barely managed to get the short kid off to school on time and then had to rush back to the house to use the bathroom.

I had already called in my height and weight for my infusion bag to get sent to pharmacy, but pulling into my driveway, I realized I asked them to mix it early.  I had thought my appointment was at 9am, however it was set for 10am.  All the rushing around, and getting anxious being stuck in the bathroom for nothing.  Sitting in traffic I about lost it.  I did lose it after having to stop at a gas station on my way in to use the restroom.

So here I am.¬† After 3 tries, my infusion nurse realized that my hands/crooks of my arms were not working for IV lines, so I now have a line in my inside forearm.¬† Whatever works I guess.¬† He noted that over the past few infusions, it’s harder and harder to get a line (regardless of how much I drink or eat before hand).¬† At least he’s willing to get creative.¬† However, being stabbed repeatedly isn’t my cup of tea after a rough morning.¬† ::Sigh::

I’ve been doing alright lately.¬† I took myself off of the 6mp a couple of months ago, I had noticed no difference in my symptoms, and the side effects were obnoxious.¬† Most notably was a loss of appetite (I like my food dammit) and hair-loss.¬† The hair-loss was one of the bigger reasons why I chopped my shoulder length hair off, that and my innate ability to not to do my hair (also known as lazy-ass syndrome). ¬† I figured screw it.

After I took myself off of 6mp, the frequency of my Crohns symptoms actually decreased, and my hair stopped thinning so rapidly.¬† Finding out that my disease had spread to another part of my intestines prompted the idea that the Remicade wasn’t working anymore… which led to the super high dose of 6mp.¬† Welp, here I am.. still kicking on Remicade.¬† Hanging in the balance to see if it continues to work, or puts the new area in check without the 6mp.¬† I’ll argue my case later with my GI.¬† If Remicade ultimately fails, I’m still up for trying that new medication, but whatever.¬† Take it as it comes.

One of the things that really, really gets to me, is the fatigue.¬† I am constantly tired, getting off of the 6mp seemed to help that a bit, but I’m still exhausted by mid-day.¬† Hell, over the holiday weekend, I was exhausted a couple of hours after I woke up.¬† I think that’s the most frustrating part of it.¬† Even if I’m virtually symptom free for a couple of days, my joints hurt like a … well you know.. and I’m tired.¬† I can deal with pain and diets, but being tired for what seems like no reason just pisses me off.

This disease sucks, for a lot of reasons, but it’s tough to deal with because it’s a so-called invisible disease.¬† I don’t look quite so bad on the outside… hell, when I was at my sickest I kept getting compliments about how great I looked with the weight I had lost.¬† All other people know is that I’m always tired (some think I’m just too lazy to do things or just want to blow off plans) and that I use the bathroom a bit more.¬† It’s hard explaining to people that it’s more than a tummy ache… over and over again.

No matter what you explain, or how many times you explain it, the social effects are… depressing.¬† I’ve had family get upset because I didn’t want to continue at the pumpkin patch (after having an accident).¬† I’ve had coworkers/bosses not realize that I am serious about going home after using up all of my extra undies and Imodium.¬† I’ve had friends get mad when I don’t want to go out, or cancel plans because they don’t *see* my sickness, or “come out, you’ll feel better once you get moving”.¬† The fact that I use up my spoons some days before I even make it into my clothes just pisses people off.¬† (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

It could be worse though, and has been worse.¬† Most days I’ve been managing to keep a positive outlook, some days though it just sucks.¬† Over the past handful of years Crohns and UC have gotten a lot more attention than before, and awareness is spreading.¬† Some days I’m thrilled that people are learning about IBD, some days I could give a fuck less.¬† Some days, even my online support network can’t even get me out of a funk.¬† Either way, the best thing to remember is that those of us with IBD are not alone.¬† It’s okay to feel crappy, it’s okay to say NO when you don’t feel up to something, and it’s okay to feel upset.

Days like today?¬† Where I used up all my spoons before I put my shoes on?¬† I’ll make it, you’ll make it, and things will get better.

Chai tea and Frustration

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It’s been an oddly relaxing few days, even despite a sick kid and lingering stress.  Snuggling on the couch and time with my family has really brought forward what I really want out of my life.  More or less, it drove home what really is important, and what’s a bigger priority. 

Sometimes you just need life to smack you in the face for you to get your head on straight.  I learned not to let others take advantage of my skill and of my time.  I learned that spending time with my family is important, and that my family is just important as everyone else’s family. The idea that I should schedule one day a week to spend with my family is absurd.  I learned that if I’m not careful, I’m going to miss my daughter’s childhood… and damage my relationship with my boyfriend.

It felt good to have some time to get my brain back on track and to discuss my options with the boyfriend.  I set new rules for my life and things are going to change, one way or another.

Here’s my overly cheesy end note: you make your life, only you can change it.