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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Crohns & Colitis Awareness Week (December 1-7th)

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More than a decade ago I was diagnosed with Crohns Disease. I had first gotten sick almost a year earlier, unfortunately my early doctors did not think to check for Crohns. It wasn’t until I had lost just under 100lbs and my life consisted of ERs, Fevers, Pain and my bed that I just happened to be in the right place at the right time.

I happened to go to a specific ER, where a group of GIs, one of which has devoted a significant portion of his life to studying IBD. It took one look at my chart and medical history for him to look at me and say “I think you have Crohns Disease”.

When I first became sick, I had only heard “Crohns Disease” once as a good friend of mine’s mother had it. I didn’t know that there were multiple options for treatment, I didn’t know the complications, I didn’t know anything. The following years were lonely. I found out another friend of mine had Ulcerative Colitis (same family of IBD) (who ended up helping me with my daughter way more than she had to prior to my diagnosis) and met another friend with Crohns. It was still odd talking about it.

There wasn’t medication commercials on the TV, Facebook wasn’t public yet (or popular until later) so instant support groups were out, I had no idea that so many people had the disease and were suffering right along side of me. To make it worse, my then husband and my family didn’t quite understand that there was so much more to it than a “bathroom disease”. No one around me understood the pain, urgency, fatigue, nor the side effects from my medications. I looked healthy enough, and at size 0, my friends were envious.

Check out Noodles face! Note: this is after I got sick, and before my diagnosis.

The first few years that I was diagnosed were the most lonely I had ever experienced. I had so much shame about a disease a couldn’t control. I just dealt with it as my disease stabilized. Having a bowel disease wasn’t something you talked about at parties, and I even tried to hide it from my close friends (online).

A couple of years later I had developed severe inflammation again, it started turning into scar tissue in my small intestine and colon. I learned what a bowel obstruction was, and after the first few, it became near constant. I was in and out of the hospital monthly.

It seemed like all there was to my life was Crohns. That was it. Now that Facebook was more popular I leaned heavily on my online friends and found some support groups. Furthermore I said “Fuck it” and started being vocal about what I was going through.


Everyone online was bombarded with what I was going through. I started TELLING people I couldn’t deal with the symptoms, I started EXPLAINING what Crohns Disease really was. I’d post pictures from the hospital or from my infusions. Showing people what Crohns Disease was.

Then I started hearing from people. I found out my then boyfriend’s niece has IBD. I had people acknowledging that even though people with IBD didn’t look sick, they were.

I had support and I tried to share it with whomever needed it.

I eventually had a bowel resection a few years ago after so many bowel obstructions I lost count. Even after being in the first 50 in IL to try Entyvio. Luckily, I have only had minor problems since then.

I am technically in remission. My last blood draw showed elevated levels of inflammation, so we’re just watching and waiting. So unfortunately I’ve become complacent with this disease (and also focused on dealing with some other issues, IST & POTs) as well as quiet.

However, I’ve learned that being open with the world about my Crohns served a purpose. People remembered. I have talked to just under 60 people in the last two years because of Crohns. People who have the same symptoms, were being diagnosed or just diagnosed, people in the hospital, family members of Crohns patients. People who just needed questions answered, who needed to vent, who needed someone to understand. I’ve talked with friends, their family members, friend’s friends, and strangers who found me through my social media platforms. I will never ever mind, I remember how hard it was in the beginning, I remember how horrifying and lonely it can be. Worst of all, I remember not knowing anything or what was going to happen. So I will always be up to talk.

It occurred to me last night, that THAT is a benefit of the awareness week. The more people know, the more people available to talk.. the more people who might recognize the symptoms in themselves and loved ones and get a diagnosis. The more people might not feel alone or overwhelmed with what they’re facing. The more people talking about it, the further we get.

So Happy Crohns & Colitis Awareness Week and remember to keep talking! It’s more than a bathroom disease!

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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