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.

 

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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.

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.

 

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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Once Upon a Time..

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Once upon a time, I felt healthy. Once upon a time, I felt like I could conquer the world. Once upon a time, I felt like I could do anything.

At one time, a compliment was just that. Now, “You look good today” just makes me wince. I just want to say: “Well, I don’t feel good.” or “I guess I did a good job hiding behind my makeup.” At one time, a compliment was just nice, now I wonder if people won’t take me seriously when I say I’m not feeling well because I look “fine” or I “don’t look sick”.

In the past, I would look forward to each day. I would wake up early, stay up late. I could go all day and do whatever I wanted. In the past, I ran my own life, now I “count my spoons” and hope I can make it through the day without becoming exhausted to the point of tears. Now, I look forward to when my daughter goes to bed, so I can finally stop.

When I was healthy, I didn’t have to have blood draws on a regular basis. I went to the doctor only when the flu got me down. When I was healthy, I never had surgeries, and only stayed over night in a hospital when my daughter was born. Now I’m a regular on almost every floor and I can tell you what vein and what angle.

Now that things have changed, I’ve learned how much stronger I a.m than I was before. I can face life with a different outlook than most people I know. I know the fear of dying, I know the feeling of constant pain. I’ve faced my disease head on and while I’ll never win, I learned to keep fighting. Now that things have changed, I know that the lessons I’ve learned, help me to appreciate life all the more. I know I’m a strong role model for my daughter. I know that if I’ve made it this far, I can do anything.

Giving up, or living with…?

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When you have a chronic illness, there are many stages you go through leading to acceptance. I know when I was first diagnosed, I was almost insane with happiness because I finally had an answer. There was finally a reason for all the sickness, all the weight loss, all the pain! I took my first type of medication with glee at the thought of getting better. From there, as I cycled through “remission” and “flares”, my attitude towards Crohns Disease changed many times.

A lot of the time, I took on a headstrong approach. I knew Crohns could very well put my butt in the hospital, but I was going to do what I wanted anyway. It was a take-charge-attitude. Nothing was going to get me down.

The other end of that spectrum, is more of a… careful approach. It took me years to get into this little “phase”. I spent so much time feeling almost invincible, pushing myself farther and farther, when in reality what my body needed was rest. These last few years I developed a stricture around my terminal ileum, which led to bowel obstruction after bowel obstruction. At first it was once a year, then twice a year, then all of a sudden, I was being admitted every other month. Which of course is what led to my surgery.

In the months leading up to my surgery, I started realizing that pushing my body so hard the previous years definitely took a toll. Now I’m not saying that you shouldn’t do what you want to do in life, just because of a chronic illness. However, you have to listen to your body and rest when you need to. There were many, many a time where I went with little sleep, or didn’t take a day to myself after a big event or trip. I didn’t pay as close attention to what I was eating as I should have, and I didn’t take care of myself.

The downfall of getting so sick, and thinking about all of the ways I hadn’t taken care of myself, is that I’ve more or less become a homebody. Don’t get me wrong, I’ve always enjoyed the quiet of my home, but I’ve retreated more of the last couple of years. I’m more often than not going to avoid places without easy bathroom access (which is pretty par for the course with anyone with active IBD), and after 2 years shy of a decade, the fatigue is so overwhelming that I get anxious about going to anything resembling an all day festival. By all means, I still *want* to go to festivals, markets, concerts and such.. but it’s almost like after years of “conditioning” it’s all to easy to just say no. It’s easy to just stay at home, where I can hurt in the comfort of my own bed, use my own bathroom, and have easy access to my medications.

Someone told me recently, that I had lost that “fight” I used to have, that it seemed like I had given up. When I heard that, to be completely honest, it broke my heart. I’ve been through a lot this past decade, not even just health related. The last thing I think when I look in the mirror at the bags under my eyes, the scars on my tummy, is that I’m looking at someone who has quit. When I look at myself in the mirror, I see someone who has fought the mother of all battles. I see someone who has been through hell and back, and has still managed to stand up every morning and face the day. I don’t think I’ve given up, I think I’ve just acclimated.

Sure, I need to work at my confidence, to get myself back out there. This time however, I will be taking care of myself, taking the down time I need, taking time for myself. I do want to get back out and “live life” instead of letting life pass me by, but I will do it on my own terms. I haven’t lost the fight, that fight that was so very much directed at not losing the life that healthy people lead, damn near destroyed the life I already had. The fight that I supposedly lost, isn’t missing, it’s just been redirected into getting well.  It’s been redirected into saving myself. Now I just need to learn to shift some of it back to other aspects of my life.

By no means though, have I given up. I just learned to live how I needed to, to get by, not just keeping myself out of the hospital, but keeping myself sane. Unfortunately, it’ll take a little while to learn how to shift from this stage to something more in the middle. It’s going to take time to learn how to live fully, while protecting what health I have.

I have not given up, I’ve just learned to fight in every way imaginable.

Strawberry Ale

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Saturday night, day one of a much needed three day weekend.  Monday, I am off work… initially it was out of necessity.  It’s Columbus Day (aka: lets-celebrate-genocide-day), so the kid doesn’t have school… and on the major school holidays, daycare is closed.  So I requested the day off, because being myself, I don’t have many other options for childcare.

Either way, as the days counted down to this weekend, work got more and more stressful.  Each day that inched by, the more depressed I got.  The more anxious, the more upset.  It’s just been… hellish, especially after working late nights for god knows how long.  Friday, I lost it.  I finally found out what burnt out feels like, I thought I had experienced it before, but quite honestly I hadn’t.  Every little thing was setting me off into tears, I felt like I was on the borderline of an anxiety attack all day.  (Hello, new prescription.)  It was one of those days where I had to go outside, and solidly convince myself that deep down I *do* like my job, and that while my paycheck is no longer 100% needed, I like having that income.

It was bound to happen.  I knew it was coming, and quite frankly, I’m surprised it came with tears instead of screaming and storming out.  Friday straight up blew.  However though, when I’m stressed I tend to say what I mean, instead of sugar coating it, so I got some of my thoughts off my chest.  Despite the tears, at the end of the day, I actually felt better.  On the drive home, I thought about what I wanted out of life, out of work and out of my home.  I put some priorities in order, and let me just tell you this: my family comes first.  Hearing my boyfriends views on it, and knowing I have his support regardless of what I do with work helps.

Cue: Weight off my shoulders.

So, this weekend, I’m taking for my family.  This Monday is a Noodle+Me day.  I’m enjoying every minute of it.  I know that I have some work I really should get to, especially with corporate coming in next week.  This weekend though?  I’m not doing it.  I’m not checking emails, faxes, lates or anything.  I need this, and I need time.

Today wasn’t quite fun filled with the morning dentist appointment, but watching scary movies with the short one this afternoon was nice.  Right now, I’m relaxing with a Strawberry Ale (mighty tasty I might add) and writing.. while fending off complaints from the child that she lost her charger for her tablet.  Tomorrow?  I don’t know what’s going on, but I know I’m spending my morning in bed until I feel ready to get up… and the day?  Relaxing.  Monday?  I think a bike ride with the kid, and lunch out.

Moral of the last week (year)… family and self comes first.