Monthly Archives: November 2010

Not Sure This Should Be Posted, But Whatever – I Need to Vent

It’s almost funny to think about all the “you”s in your life.

As a kid you had (or I’m assuming it’s normal for everyone) dreams of who you’d BE when you grew up. In history class in 7th grade we had to create life timelines – what we wanted to do, who we wanted to be and when. I think is some ways assignments like that are detrimental to children. I can’t even tell you how many “timelines” I’ve given myself. When things don’t work out in your projected timeline, it’s easy to see it as a failure.

There are also the “you”s you give off when meeting someone new. Name. Job title. Age. Background. A variety of adjectives. Or in job interviews, you list three words to describe yourself or your positives or shortfalls. And these aren’t anywhere close to giving an accurate picture of you. Friendly, funny and kind can look like millions of other people.

Then, the really frustrating “you”s: the ones people see. I firmly believe you have less to do with how others see you than society says. There have been people in my life who have thought many things about me which are far from truth.

Even more ridiculous…it’s not even possible to give yourself a one word title. “I am a teacher.” Every teacher is different – different backgrounds, families, personalities, educations, etc.

It’s sad how important titles and definitions of people are in our society. Maybe it’s just because I haven’t liked a lot of definitions/titles people have given me. Or maybe it’s because I can readily see how each person with diabetes or even crohn’s differs. Not a one of us is the same, yet we have the same disease. Our illnesses affect each one of us differently, just as kids growing up in the same neighborhood differ…and siblings in the same house.

I guess I’ve had a lot of time to think about this kind of stuff. I currently have not much going on in my life. It’s not really a true statement, because I guess handling new medications and feeling crappy a lot of the time is a challenge. But, my school has kindly dropped me from all of my classes this semester as they were too much for me and I had missed too much. I am grateful they have willingly dropped me with no Ws. Mostly, it’s due to my registration with DSPS at my school. I forget what the acronym stands for, but it’s the disabled students department. I still have no job. I have an interview on Wednesday. Honestly, I never feel too up to anything though. If I need to have a busy and full day, I can manage, but it wears me out. Not just like, oh I need a coffee. But more like, I helped with Thanksgiving preparations on Wednesday and Thursday and have been in either pajamas or loungewear since. It’s not a huge deal, in that I don’t have anywhere too pressing to go…aside from my need to go to the pharmacy today because I’m officially out of one rx and nearly out of numerous others. And if I ever do need to be busy or stressed or whatever, I’ve gotten pretty good at scheduling enough rest before and after.

As far as titles, I don’t even want one right now. I know who I am, which is incapable of being explained in a sentence or paragraph. But, if you were to give a label, I’m not sure any would fit. Or if it does right now, it doesn’t fit completely.

It’s hard to accept the current state of things in the Realm of Ashley. When I lost my, what most would consider corporate, job in September 2008 it was rough. I took my first retail job…and then took another part-time customer service job. Up until 2008 I always prided myself in having a “professional” job. It was all supposed to be temporary. It’s now nearly December 2010. In the last two years I think I’ve done a decent job accepting a “job” doesn’t define you. But, I have a hard time accepting what other people give as definitions. And an even harder time not believing the validity of said definitions.

But why the hell do I even care? I don’t believe in assigning titles or labels. Why would I care about the ones people give?

I know the answer, it’s human nature to care about what others think. It certainly doesn’t mean I like it though. Or that I won’t try to not care.

This surprisingly, or not so surprisingly, spawned from a recent discussion with my mother and sister. I am incredibly grateful my parents have willingly accepted my numerous returns to their home. It’s not looking like I’m leaving any time soon, so I’ve been working on rearranging and cleaning out my room, making it look like I could actually live in it. In other words, not looking like I’m living in someone else’s room. It’s not my house though, so I have asked about various changes I’d like to make. My most recent request is that of pictures. The most recent picture with people in my room is from my 8th grade graduation from Middle School. The overall most recent picture is from April 2005, a picture from the place I stayed in Hawaii overlooking the ocean. I’d like to be able to put up more recent pictures…one’s with people I still talk to and remember their names. The response to my request was not at all expected, though I shouldn’t have been too surprised. It’s gotten me thinking about labels and titles.

While certain missed or delayed step stones have bothered me at times, I really am grateful and mostly happy things didn’t turn out how I planned. I wouldn’t be who I am, and I like who I am…even if other people don’t.


Kiss My Country A$$

There’s really no point to this title, other than I really like the song.

I’ve been sitting at my computer for a good 2-3 hours trying to figure out what to type. Since my last post I’ve had a lot happen that I’ve wanted to post. Sadly I should have written when it was on my mind, as I’ve now forgotten.

Thankfully I’ve got something… Continue reading

The Great Divide

I have a cold. My first of the season. It’s taken three days to fully arrive and is still probably going to worsen a bit before it even thinks about getting better. I’d love to be all better in a couple of days, knowing me and my body though…I very little faith in that happening.

Because I had a blonde moment and drove out to my favorite pharmacy on Saturday night after it had closed, I thought I may as well pick up a few things at CVS while I was there. (You know, try to convince myself the trip wasn’t a whole waste of my time). So I picked up some water (the meds I’m on cause the WORST dry mouth ever…it’s gross AND annoying), travel sized tissues, some sour apple glucose tabs (they’ve been given raving reviews, I finally broke down & bought some in case I dropped after) and a box of tissues.

Do you have a tissue or toilet paper preference? I certainly do! And it’s not just a well I’d really like this, but I guess that’s okay too. Especially with tissues. One brand is a gazillion times better than the other. I wish I could feel adamant about toilet paper, but I’m too cheap to buy the kind I like.

Kleenex tissues SUCK. They’re sorta soft if you get the kind with lotion & aloe. BUT they have SPARKLES in the tissues. I HATE glitter. It looks cute, but I don’t like it anywhere near me. It always gets all over and refuses to get off. You find it everywhere for days. Granted the sparkles in Kleenex are not glitter and the sparkles don’t stay forever…but you have a sparkly nose, cheek & upper lip til you wash your face! Really? Even if you liked sparkles, who puts them in those locations?!?!

Puff Plus with Lotion and Puffs Ultra Soft & Strong are the BEST tissues. The best!! I’m not a fan of the Vicks version…it leaves too much residue on your face. But my nose never chaps and the lack any and all sparkles. They don’t hurt…no matter how often you use them. They are the one and only tissue I like to buy.

CVS only had Puffs Plus with the Scent of Vicks!!! I was horrified and debated going to a different store in the area to get the right ones. I opted for Kleenex with Lotion & Aloe. BAD move. Being that this was my first tissue purchase of the season I had forgotten about Kleenex’s stupid sparkles. And, because I’m me & waited until the tiny remaining bit of my Puff Plus with Lotion from last year was gone! So I really needed them that night and I was on a time schedule. I’ve used several of the Kleenex sparkly yuck since…my nose and lips are raw. The top priority item on my next shopping trip is Puffs Plus with Lotion.

I mean it’s not like people don’t know you’ve been blowing your nose…it naturally gets a little red, why put sparkles there too?!

Maybe I’m weird. I know I have an abnormal passionate opinion on tissues, I’m willing to accept that. BUT I think it’s valid…I catch at least 4 colds between now and February and go through a LOT of tissues. …Maybe they should hire me as a tissue tester… Anyhow, if you don’t already have a tissue favorite, go with Puffs Plus Lotion, it’ll never let you down.

Also colds suck. If anyone has any throat drop, cough drop and/or cold med that has no Tylenol or Advil in it, PLEASE let me know. 🙂

Pumpkin Muffins!

I’m sorry, I’m a mongo liar and didn’t post this on Saturday, as promised. 😦 But look you get a double-day Monday. (It’s an automatic boost to the sadness of Mondays) These are super delicious muffins. I froze mine and pulled a couple out in the morning, popped them in the microwave for 30 seconds and I had breakfast!

2 eggs
1/2c pumpkin puree
1/3c honey
4TB melted butter
1tsp baking soda
1/2tsp salt
1 1/2tsp cinnamon
1/2tsp nutmeg
1/4tsp ground cloves
1/4tsp ground ginger (I didn’t have ginger, so I just doubled the cloves)
2 1/2c almond flour

Preheat oven to 325F
Line muffin tin
Mix all ingredients except almond flour.
Stir in almond flour.
Spoon into tins.
Press down w/ wet fingers.
Bake 25-30mins

I made about 14 muffins, so 9 carbs and 183 calories per muffin.

Sorry, no picture this time. But I promise they’re delicious! (I’m not being a mongo liar about that) 🙂

Go Away

Thursday was a weird day. I got up and Crohn’s wasn’t being a jerk and diabetes wasn’t misbehaving much either. But the biggest accomplishment of my day was putting away a few groceries, only the ones that needed to be refrigerated.

One might assume my lack of actually doing anything was due to depression. (The third D in my life) And I wouldn’t say you are completely off base. I’m also fairly certain I’m catching a cold, I have all the signs: sugars running low, stuffy on one side of my face, HORRIBLY itchy throat (wasn’t my tonsil removal surgery this Summer supposed to take care of that?), constant need to sneeze, major headaches and more I can’t quite remember right now. I can’t say I feel sad about anything…I’m a little angry that my body hates me so much it wants to give me a cold. It’s not like I don’t feel crappy every day, getting sick just makes things worse and more complicated.

I skipped an interview. It’s not as bad as it seems, I promise. I got a call Wednesday from the gym I used to work at, but a different location. They called to tell me they were having open interviews Thursday from 12-5p. I looked at the clock a bit before 12 and didn’t want to go right away, then when I thought about it again it was 4:45p. Maybe I got so excited about the idea of a “real” job that I didn’t want to go back. But at this point, a job is a job which gives me a paycheck. I also think that feeling off from this impending cold has made me a little apathetic.

Apathy is a big pain in the ass. I guess part of it is apathy, but I think I have a lot of, maybe, anger? A friend told me last week I deserved a break, for something to go right. And, I don’t know, I don’t feel like anything is going right. I’m overwhelmed. Most days I need a nap my 1p. Most days I’m in too much pain to want to do anything else. Or I’m up all night in the bathroom (or afternoon or morning, but mostly night). I almost feel bullied. Not by anyone else, but by my own body. And being bullied by your body is constant. It’s not like when you’re a kid in grade school where another teases you at recess. It’s all day, day in and day out. And it’s exhausting. It makes me feel like I can’t do anything. School is falling apart because I’m not going, because I feel to sick to go. I don’t have time to deal with my jerk of a body and life. Pharmacy, appointments, meds 4x/day, sickness…it’s a full-time job. My doctor told me my fatigue was normal with the amount of “things going on” in my body and life. But how am I supposed to handle the fatigue AND be able to do everything a productive quasi-adult is supposed to do? There’s too much on my plate and I don’t even have anything on it.

This post kind of sucks. But it’s November and it’s Diabetes, IBD and Manatee Awareness month, so I figured I should probably write something. If you made it this far in the post, thanks..and sorry, haha.

My PCP called…they actually want to re-check my urine before the 3 months is up and it has to be first thing in the morning urine. I told them I’ll pick it up today. I don’t know if I should be worried or not. I think I probably am worried, but not actively. Just in the back of my mind, like the tethering concern. I’m pretty sure that’s due to my plate being to full too. There’s no room for more worry.

I’d really like to just have the time and ability to have a life. I don’t need a full social calendar, just the ability to have a social calendar. I just want a break. I know diabetes and Crohn’s are here for the long haul, but they need to stop being so rowdy and bothersome. And my immune system needs to get its head on straight and stop attacking itself and attack the stupid cold germs I have contracted.

Hopefully tomorrow I’ll have something more positive to say…or at least less cloudy, perhaps even sunny. Oh crap, it’s supposed to be recipe day. Guess you’ll get one on Saturday instead. And hey, there’s nothing negative about yummy food. 🙂

Sympathy: What Do You Think?

How many of you received sympathy cards after your diagnosis?

When I received one in the mail last week I thought it was kind of odd. Then I thought back to my diagnosis with T1 and I received sympathy cards then too.

You send sympathy cards typically when you lose someone, a pet or maybe even a job. But does a Crohn’s or T1 diagnosis constitute a loss? What are you losing? Freedom: your ability to do whatever you want whenever you want without thinking ahead or carrying supplies/meds with you. Spontaneity: you can’t just pick up and leave, you need to make sure you have enough supplies for enough days and plan where the closest medical facility may be, etc. Normality: like it or not you now have a constant companion, you carry juice boxes or glucose tabs, you take a bag/purse wherever you go, you know the location of ALL the available restrooms, there are times when you just can’t, you’re not less of a person but you are different. Money: your bank account will have new constant withdrawals, it’s no longer housing, food, and cars, it also includes medication/supplies. Regardless of the amount in your account before chronic illness, it will be less afterwards. Normal vocabulary: words have a whole new meaning – pen, high, low, steroids, etc. These words can cause you to get lost in conversation because you’re not hearing it right.

So, I suppose chronic illness can be sympathy card worthy. It’s nice to know people care. But it also makes you realize you’ve lost something and that people could really feel badly for you. Some of the people I lived with in Idaho have mentioned how bad they feel or how they don’t know how I do it. A lot of people say sorry. It’s not their fault I have the health problems I do. But I can’t really give a better answer option either. When people say it sucks, I agree with them.

Sometimes I do feel the losses that come with chronic illness. Sometimes I feel the burden.

The last several months have been tough for me. And I’ve been feeling these and other losses much more than the gains.

And while most of my posts have been about these losses, I know there are gains and gifts that come with chronic illness. I believe we are much more passionate, have a tenacity that can’t be matched, are more willing to embrace life’s little moments and gifts, can celebrate the little victories, firmly believe in the idea of community and show a strength and perseverance that is well beyond the norm. It’s not to say that “normal” or “healthy” people don’t have these traits. I know passionate, strong, tenacious, life loving and community focused people who don’t have a chronic illness. But I feel like most people who deal with a disease or condition day in and day out have no choice but to develop these characteristics.

I can’t really say I disapprove or approve of giving a sympathy card to someone. I’m a card/stationary addict, so I appreciate any letter or card. Sympathy cards seem more fitting than a get well card. It’s not like I have the flu or am going to get better anytime soon. The only way I’ll be “healthy” is if I no longer have my bowels and I’m dead. Diabetes is cureless as is Crohn’s. I know a woman who had a pancreas transplant and no longer has T1, but those are pretty rare. So I guess if I got sick enough and they removed my small bowel I could be disease free.

What do you think about sympathy cards? Would you send one to a newbie?

Really Rambly

Here’s the predicament. I’ve been thinking about writing a post about this specific problem, but I always back out of it. Either too scared, too tired, or too aware of what other people think. I text and call some friends about these problems…but I’m not sure I’d want everyone knowing about it. AND I’m pretty sure those select friends aren’t big fans of hearing it either, but because they love me they put up with it…or at least pretend it doesn’t really bother them.

Since I’m up right now partially because of said problem, I guess I’ll go for it.

Diabetes has this stigma of shame. We’re irritated with other people’s “should” comments on what we eat, do and want. Can’t eat this, that or the other thing. It’s my opinion that since insulin started with this feeling of shame (the first patient on insulin’s children didn’t even know she was diabetic!!), we’re still trying to break free from the past. However, I believe that the exhaustion and patience it requires answering or responding to the ignorant questions or comments has a lot to do with not talking about diabetes in public.

Crohn’s disease I don’t feel really has a feeling of shame. Most people don’t really know what it is, they’ve heard of it, but have no knowledge. But, in order to really talk about it, you have to talk about abdominal cramping, diarrhea, fatigue and bowels. Cramping CAN come up in conversation…usually between women; even then it’s not 100% socially appropriate. Fatigue is commonplace I suppose, there’s no strings attached really. Though, I’m fairly certain that people who have never suffered from fatigue can only just begin to understand the exhaustion experienced. Now we’re left with the topics of diarrhea and bowels. Maybe it’s just me, since I’m a newbie, but I’m not 100% comfortable writing about or conversing about either. My family doesn’t really like to hear about it, I’m fairly certain if they don’t others probably don’t either. If I don’t talk about it with my doctor then I can’t really tell them what’s going on with my body. And if I don’t talk about it then I can’t change anything.
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