Category Archives: venting

Happy Birthday Grandpa

This time of year throws me off a bit. There are a number of things I am very grateful for and there are a number that seem quite somber.

Back in 2008 I had my last Christmas with my Grandpa. It was a great Christmas. It was still at the point where everyone felt there was a chance his chemo treatment had been successful. Some thought it was inevitable it was his last Christmas with us. I wanted there to be more Christmases. His birthday was/is December 11th. That year I went up to where he and my Grandma lived at the time and we helped them set up for Christmas. I helped him set up their Christmas tree, the very same tree that is currently in my parent’s living room. My grandfather made Christmas so fun…well interesting I guess is the better word. He was the father of three sons and only had granddaughters. Each year he would pick out something just for each of his granddaughters, usually a piece of jewelry or clothing…something feminine. When he opened his presents he would start to zone out and even leave the room some years to go fiddle with his favorite presents.

We always celebrated with my grandparents on Christmas Eve, the Christmas Eves following his last have left me feeling a bit lost. In 2009 I refused to deal with it and spent the day playing Scrabble with a friend, went to Outback Steakhouse with my parents and then to a bar with a friend. In 2010 I’m not sure what I did…I know I played Scrabble with the same friend, after that I can’t recall. I am incredibly grateful to have a Christmas oriented Christmas Eve this year. Hopefully it will help me feel not AS mopey this year.

On the flip side, I am happy to remember that Christmas Eve. I am happy I was able to have a childhood with him as my grandfather. Happy is one word, but honored probably fits best.

This Sunday is the 11th. I’m not really sure what I’ll be doing aside from going to church. But wow, I’m not sure I’m prepared for it. I am not a terribly emotional person and my Grandpa shared his even less…yet when it comes to his birthday, Christmas, my birthday and his and my Grandma’s anniversary I turn into a big ball of tears, resulting in my feeling like I’m a huge ball of ridiculousness.

I love Christmas and the cold and the decorations and festivities…but when I slow down and think about past years I get all sorts of distracted and emotional…and then frustrated with myself for allowing it to happen. haha.

This has all been written during a plummeting blood sugar…which is one of the only other times I display emotions/cry/etc…I’m not mopey about it all and really didn’t intend to write something so negative. It sounds sort of negative, right? I think I’m just emptying my head…with lowbrain.


Diabetes is a big fat liar

After you’re diagnosed with type 1 diabetes, medication has a whole new definition in your life.

Insulin is not an optional medication. It’s optional if you consider death an option, and I don’t.

As a kid our doctor (on the rare event we went to one) would write scripts, my mother would tell the doctor she’d fill them, never fill them and not return to the doctor until the law required it. Type 1 isn’t that lenient.

I see my doctors as often as they’d like to see me, or as close as possible. And I diligently take my medications as directed. I think at last count I was on 11 or 12 meds. When you’re on that many drugs your options are limited for additions, there’s a likelihood some meds will counteract others.

I haven’t had a paycheck since the end of October. The government is paying my tuition. My family is helping me with the rest. Diabetes and Crohn’s are expensive and require constant attention. Knowing money was tight for my parents I opted to take two of my medications twice a day instead of the prescribed 4 times.

My thought process was that I can cut those, at least I’m still getting some of the medication. Insulin is not an option. Metformin I have some backstock. Welbutrin, I’m not messing w/ my antidepressant usage. Imuran, it’s been the most helpful and I only take it once a day. Entocort EC…I’m almost out of that too. Nortriptyline, I’ve had BAD experiences weaning on and off my nerve meds so I didn’t want to do that & there’s no way to take a half dose. I can’t think of the rest but Pentasa and Dicyclomine got the cut. I am supposed to take 2 pills four times a day of Pentasa and one four times a day of Dicyclomine. I can live without that, right?

Well, I’m alive. But between my mouth, clusterfuck of sugars right now and the reemergence of severe cramps and nausea I’m not alive very happily.

And I know it’s not their fault for the timing, but with the stupid CWD forum from yesterday (and today? I’m not sure) I feel inadequate. It’s me, it’s not them. I’m allowing myself to feel this way. But, I feel like I’m saying “poor me” and I really don’t mean to. Everyone’s life is different and everyone has different shit they have to deal with. I don’t have a great family network to be able to vent and express, so here it is. It may not be the smartest idea to divulge so much information of how I “feel”…in person that’s the last thing I talk about. I prefer fact.

…which pisses me off more, I don’t like all this feeling crap. Feeling sick, feeling damaged, feeling useless, feeling behind, feel, feel, feel. I’d prefer to not feel, thank you very much. It’d be really nice to NOT feel like I’m a failure at trying to figure out my dumbass digestive system, how and when it digests and metabolizes what and knowing what my sugars do and are supposed to do. Why can other people figure it out and I can’t?

Off the feelings topic and now to why diabetes is a liar:

Diabetes tells you it’s the most important, it’s first. You MUST take your diabetes meds over any others.

Crohn’s meds are just as important. If your digestive system decides not to work your insulin regime is going to be all over the place. Sometimes the carbs peak at a “normal” time, some postponed…without any real regularity…unless you count a different story at every meal as regular.

Diabetes may be a big pain in the ass, but don’t let it fool you into thinking it’s more of a pain in the ass than certain other diseases, in my case Crohn’s.

Sometimes Crohn’s has to win…ex: my pain med options
Diabetes gets to win other times…ex: eliminating some pain med options b/c I NEED to use my dexcom and refusing to add ANOTHER steroid to the regime. There’s no way in hell I’m taking two steroids at once again…all the help the steroids do goes to shit if I can’t keep my sugars fairly moderated b/c it makes my stomach cramp with EVERY damn food.

Diabetes, you’re a big pain and I hate you. I hate you for the kids with T1, for the people trying to be a responsible and “normal” adult, for the parents who have the kids with T1.

Despite diabetes being an attention whore, I’m kind of scared to go to my GI on the 15th. It’s an earlier than originally planned appointment and I can’t see my regular PA. She said I need to meet with the doctor because she honestly doesn’t know what to do anymore. So, awesome, that’s encouraging. What the hell am I supposed to do with that? ..aside from being scared.

And I’ll shut up right now, or I’ll just add more profanities.

You Can’t Escape Reality For Too Long

It seems there’s always something to say with diabetes and Crohn’s. So, no hair talk today. Just plain and simple health jabber. Though, I wouldn’t say it’s simple at all, when it comes to me…my health is rarely simple. Diabetes and Crohn’s make that a near impossibility.

My root canal is complete. They’re not sure if it’s successful. They won’t be able to determine its success until they try to put a crown over it. If it’s failed, the tooth will ooze some kind of substance. If it fails, I need it removed. They’re hoping a couple more days will eliminate the infection on the side of my gum. I have my doubts, it’s been there for 3 years and I’ve been on numerous rounds of antibiotics. The crown is going to cost $831. I have NO idea how I’m going to come up with that.

I called my GI office Tuesday and they’d like me to come in because of the bleeding. I go tomorrow, Thursday. Not really sure what they want to do, I was there last week.

Thursday was supposed to be my endo appointment. Since I don’t really have a dire need of going, in the grand scheme of things, I moved it to February 7th. Hopefully by then I’ll have a paycheck so I can afford my $40 copay.

Financial/family stress is a bit high. They are burdened, as I have no means to paying for my health needs. They did say they’d help me, when I came back, but it’s still been a burden. Their apparent burden burdens me. I know I’m getting help my sister isn’t getting. I know they have their own financial needs to meet. I know they don’t appreciate western medicine the same way I need it. I know they don’t approve of my medical choices. It makes me appreciate their help more, but it makes me feel even worse for accepting it.

Breathe in, breathe out. One day at a time, things will change…they sure as hell better improve when they do too. Or at least I really, really hope they do 🙂

My Heart Told My Head: This Time No

Don’t you just LOVE Mumford & Sons? I fell in love with their music a while back.

I’ve loved this song (Winter Winds) since first listening. “My head told my heart ‘let love grow’ – But my heart told my head ‘this time no, this time no’. How many times to our head and heart contradict themselves? I feel like it’s a constant battle. Sometimes it’s best to listen to your heart and others your head – and a lot of the time you can’t tell which.

Anyway, I’m listening to them right now, thus the inspiration.

It’s pretty fitting too. I feel like I’m always contradicting myself. Listen to this or to that. Do this or do that. Try this or try that. But, life is not lived well when you try, listen and do this and that. If you do, you spend your life in a constant race. Don’t get me wrong, I am opposed to complacency. There is a time and a place for change. It doesn’t need to be constant, especially when it’s your only consistency.

It’s been a LONG time, long enough for me not to remember anymore, since I’ve finished something. I’ve finished books, blogs, movies (sometimes), makeup, showers, days, etc. What I mean is that I haven’t made a decision and STUCK with it. Relationships – I get bored or I am so closed off for too long for it to turn into anything before it’s over. School – it’s an embarrassment to even try to divulge the whole story there. The longest I’ve stayed at a job is 14 months. The longest I’ve lived in one residence continuously is six and a half years, from my birth until December 1992. I’ve taken lessons in six different instruments, but am great at none of them. I’ve taken classes in German, ASL, Latin and Spanish and am fluent in not a one. I change my hair color all the time, I’m going to try keeping it this color for a while, I like it and hopefully will not get bored. You could say I have commitment issues. It wouldn’t be a far off assessment.

People are usually awed by my “life story” that’s far from over (as far as I can tell). They usually make the observation that I’ve lived a lot of life in not so much time. It’s true. I have many many stories and experiences, none of which I would trade. Some of it has been hell. And some make up my fondest memories. Because I’ve lived a lot of life over a short period of time it means I’ve lived a lot but lack a great deal of experience. It’s pretty ironic that I have two incurable diseases – those aren’t going anywhere any time soon.

I’m going to try my hand at being a “good” patient and call the neurologist. If we’re able to come up with a remedy to my hand issues, I may consider finishing my esthetics program. I have just under half my hours. I’m not ready to commit to the idea, especially since I don’t know if it’s possible yet. It’s about time I finish something. And, really it’s something I enjoy. Maybe there’s some type of therapy I can do to keep the pain away? Who knows. It would be really nice to accomplish something.

Perhaps it’s my now nearly six month long slump that has inspired this thought. Maybe it’s the guy who told me something I don’t know how to hear. Maybe it’s my mom’s stroke and feeling like I’m behind where I should and want to be in life. Maybe it has to do with seeing friends and where they are professionally and relationally. Honestly, I think it’s a combination of all of it.

In August my uncle told me I have a world of opportunity, I am young – that I have more opportunity than he did at my age, because of some of the choices he made. I didn’t really believe him when he said it. I’ve felt like I am so limited in my opportunity, that everyone around me is progressing and I am falling behind.

Three years ago I visited the Cal Poly Republican club and ran into a guy who had been a year ahead of me at the same high school. He made the comment that I was so far ahead of where he was and a year younger. My being ahead was very short lived. I have enough sense to know everyone is on their own schedule and it frankly doesn’t matter who has what when. Life is an individual adventure.

Really, I’m just behind where I want to be. It’s not that I feel my friends are ahead, it’s a self assessment. Honesty is a jerk. But, it’s good to know. And it’s probably good that I have set a high bar for myself. I don’t think I have too many unreasonable expectations of myself. It’s time I stop digging a hole in the dirt to put my head in…that only works for so long.

In all honesty, I like change. I like the adventure of change. But I also desire security. Adventure and security are not mutually exclusive. Though, that’s been my mindset for far too long. I think I might have a new year’s resolution this year, even though I think they’re silly. For me, I like to evaluate myself every so often and give myself something I’d like to improve. There’s so much unknown in the world anyway, why not try to know what you are able?

Sorry, late night/early morning blogs never make much sense. They’re usually the result of my brain reeling for too long.

Draw Me A Map

Literally, that would be nice. But it’s my new song title titled post. Dierks Bentley…you can’t help but love his music.

Unless you’re my grandmother and uncle. My uncle just doesn’t like country…ask my grandmother if she likes it and she’ll lecture you on how it’s not even music, except the guitars. The guitar playing is music. I learned all this on Thanksgiving.

Wouldn’t it be great if life would give you a map for what you’re supposed to do and when and where you’re headed? I guess that’s the beauty of life though. If we knew what was happening when our brains would go to slush. Every once in a while I’d like a little enlightenment on where I’m headed though.

Going into today I had two legitimate job prospects. I now have one. I am really hoping I don’t bank on this one position and then lose the little bit of hope and motivation I still harbor if it doesn’t come to fruition. Which means, I need to obtain more job prospects.

If someone would like to assure me that I’m not the only one like this, it would be great: I am fantastic at looking for positions and creating a list of where I’d like to apply. However, I am not so great at actually applying.

I have issues counting on other people to help me out with everything going on over the last few months…more like over half a year. Mainly, my parents. I don’t like having to depend on them for pretty much everything. It’s the situation right now though, so I’m sucking it up and appreciating their assistance.

I guess I could use that as a motivator?

Anyhow, I’ve been pretty poor at posting anything lately. I’m tired of talking about the medical crap, health nonsense and overall rather challenging state my life seems to be experiencing. But, to be honest I really have nothing else going on. No money to do anything or go anywhere. I’m cleaning out stuff. My parents purchased a Wii for Thanksgiving. Apparently we do Thanksgiving gifts now. 🙂 I’ve watched a lot of NCIS on USA and of course Law & Order SVU.

My blood sugars hate me and have taken the new pattern of going completely apeshit at random times of day and never two days in a row. I’m not really appreciating it. On Wednesday I had an interview and then went to Ikea for a bookcase, in between I ate lunch. On the way to Ikea, right after lunch, for which I took TWO units for a large deli sandwich on a dutch crunch roll, I dropped below 40. I started lunch at 150-160. I ate some Peanut M&Ms, because that was all I had in the car (I wasn’t driving, I promise). That didn’t help. Finally I stopped my pump. So for the first 30mins or so I had a pump beeping every 25mins reminding me that I had suspended the basal. THEN I had all sorts of double arrow up reminders. The one consistent issue with my blood sugars is that it takes forever to come up and forever to come down. If I can manage to stay below 150 and above 90 it’s a good day. Most days there’s at least one low or one high, all of which can take up to 3 hours to return to range. Three hours is a really long time to have a low…and a really long time to stay high. …I’d like a map for that too.

Aside from needing WAY more sleep than I’d like, Crohn’s stuff has sort of settled. Granted, I have only been eating once, MAYBE twice a day. Fruit and yogurt do NOT turn out well. It’s rather unfortunate, because that’s really what I’d like to eat. Instead it’s usually a bowl of healthy cereal with milk. Tonight was NOT good. My mom and sister wanted to go out…to Red Robin. I’d already had my cereal hours beforehand, but I figured I go anyway. Red Robin’s meal probably totaled more calories than I’ve consumed on Monday, Tuesday and Thursday combined and probably all day on Wednesday. It also contained much more grease than I’ve consumed in I don’t know how long. Needless to say, my body did not appreciate the indulgence. It was a bad choice because of all the fried food and because it was so much more than I’ve been consuming. If I have too big of a meal it makes me nauseous. So, I guess it’s not great, but it’s also pretty consistent, which I appreciate.

I would like some consistency in my life. I need to get myself on some form of a schedule. There is too much randomness for me to handle right now. It gets my head spinning…and then I get WAY too far ahead of myself, get stressed out and eventually I just shut off all forms of thinking.

When I have a built bookshelf, I will share. I am excited to have it up and books on it 🙂 I have too many books and not nearly enough space. They currently stay in boxes, on a high shelf close to my ceiling, above my dresser and span across two shelves that spread the width of my closet. The bookcase has 6 or 7 shelves and will hopefully support my book addiction. …surprisingly I’ve been slacking in the reading area. I finished the last half of a book on Monday. I’ve yet to start another. It would be nice to finish Water For Elephants.

In spirit of the title I’ve given this incredibly random post, perhaps I’ll try to sort some things out and create a bit more structure and “map” out some kind of a daily schedule. Reading, Knitting, Cleaning, Job Looking, Being a Responsible Patient Who Takes Her Meds On Schedule, Waking Up, Hiking/Walking. You know, so I actually accomplish something in my 24 hours each day. Yay for working on a map. 🙂 …or attempting it.

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.

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. 🙂