Category Archives: gastro

Wow

My life has changed a lot since mid-May.

June 5th I got my new dog, Moyer. I love him to death. He’s adorable…and huge. Think Clifford the Big Red Dog, but black and an actual life size. Standing on his back two legs he’s taller than my 5’7″ sister.

I go to church again and am loving it. It was time, and I am grateful for grace.

I no longer have three jobs. I have one, full-time job. Moyer gets to come with me to work every day and it’s relatively close to home.

It’s been since late May since I was in the hospital.

I’ve now been diagnosed with Crohn’s for a year. It was a rough, rough year. Adding school, work, church & a social life into my routine hasn’t been easy. Almost two weeks ago now I saw my GI…I cried after. He put me back on flagyl, cipro & entocort. I felt like I was taking so many steps forward, only to take three steps back.  It didn’t help you could see the terror in his eyes when he found out I lose my insurance in March.

With the new meds and the Crohn’s acting up, my sugars have been all sorts of everywhere. It’s really quite annoying.

Toward the end of September I cut all my hair off. Not a buzz cut or anything, but my mother called it “butch”. Then toward the end of October I dyed it brown. I love it. It’s liberating.

Navigating a social life shouldn’t be such a challenge for a 25 y/o. But, between feeling completely un-cool and terribly socially awkward I don’t feel terribly comfortable socially. I love people…which is why I work with them, but at the end of the day I like my peace and quiet. Humans are social by nature though, so I feel it’s best to maintain some form of a social life…well first I need to start one. I’m not great at it, and usually feel quite weird and out of place, but I am trying. That sounds potentially very lame, I think I’m okay with that though. Between diabetes, Crohn’s, work, family, church, school and my own sanity, being social unfortunately doesn’t always rank high on my priority list after a long day or week.

Aside from hoping to become more comfortable socially, I’d really like to be able to eat again soon. By that I mean eat an entire meal and not feel like digging a 10ft hole to bury myself in within the hour. Currently, I can handle, barely, half a meal MAYBE twice a day. I eat so I can take my meds, otherwise I get even MORE sick. :( It’s really very annoying.

Also, I’d like to take a class on social implications, expectations and perceptions…apparently I’m not great at them.

That’s kind of a 6month wrap up. It’s more a “late on a Saturday night and my head has a million things going on and something needed to be spit out” wrap up. Let’s pretend I was trying to be more diligent with my blog and give an update though :)


Piercing Has, Tubing Death

Two of my top searches here. Rather odd if you ask me, but whatever floats your boat.

I have been wanting to blog for a while now, but I just haven’t created the time for it. I’m not entirely sure what I’d like to say. Over the last few weeks I’ve been contemplating what this blog is…it’s not a health blog, it’s not a sports blog, it’s a me blog…not that I know exactly what that means.

I guess on the topic of piercings, I’ll go with my year in retrospect and hopes for the next.

I turned 25 on March 12th, officially definitely mid-twenties, officially uncareered, unindependantly housed, uneducated…all those good things lol.

24th Year

March – I think I had my last three wisdom teeth out in March. Did I have my nose pierced at 23 or 24? Went to Southern CA. Met George (yay DOC meetups). Hung out with Liz…haven’t seen her since. :( Hospital visit #1 of the year. Embarrassing birthday celebration. Discovered the world’s best medication…Ondansetron ODT – AMAZING anti-nausea med.

April – Visited my grandma in AZ, hadn’t seen her in nearly a year. Finally got my side tattoo, it’s a pine tree. It took about four hours…SO painful, my others were not…ribs hurt! Moved to Idaho. Hospital visit #2, after my first day on the job, walked 3mi (I think) to the hospital at 1-2A and stayed two full days.

May – Played with axes and crosscut saws. Got my WFR certification. Played in the snow. Started working toward the end of the month. Started my, I think, third round of antibiotics since April.

June – Worked in the forest!!!! First anesthesia experience, first surgery, lost my tonsils. Also lost my nipple piercings – I had to take out all my piercings for the surgery and was too sore and distracted to put my nipple piercings back in. My dad visited me in Idaho to drive me to and from the hospital and a couple days of recovery. I think I watched/bought more movies, watched more TV series during recovery than I had in a year! I called my mother in tears more than once in pain.

July – Tonsil wound got infected…more antibiotics, more pain medication. Worked in the sun daily…in a chair. Worked on environmental non-profit stuff (a ton of fun). After the pain subsided a bit, I started taking forest/river walks in hopes of re-joining the field. Had a brief Grave’s disease scare. Congratulated on my diabetes management (I miss my MT endo)…(actually I miss most of this stuff, not glad it happened, but I miss it anyway…making me tear up…stupid emotions lol) Brief scare about blood in my urine. Tonsils were cleared. By this point I was WAY out of shape…being sick sucks.

August – Almost ready to join the field…only to get sick. Final trip to the hospital…as an admitted patient. Surprise problem, that would require specialists. Could go to Hamilton, MT for at least one of the specialists…3.5hours away. None of the tests for “wilderness” illnesses came back positive, so their best guesses were Crohn’s (winner, winner lobster dinner…if I liked lobster). UC, or maybe celiac. Realized it was time to call it a day…boss & I decided it was best I go back to CA; I wasn’t working and was going to need to be running more tests and seeing more doctors…it just made sense to be in CA. Parents drove up with my dog to help move me back. Visited Janelle (!!!!) and my aunt and uncle in Ogden, UT. Was heartbroken.

September – Doctor visits, feeling and being sick, trying to go to school, occasionally working for my dad’s work, sleeping, sweatpant wearing…overall not handling everything very well.

October – Official Crohn’s diagnosis (yay?), was happy to have answers. Start the adventure of finding the right medication regime. Got a CGM…LOVE my Dexom! Finish working for my dad, his company merged at the end of the month. More feeling crappy. Sleeping, trying to work, trying to go to school, etc.

November – Drop out of school (medical reasons). Attempt at the SCD diet…didn’t go well…used too much almond flour. More feeling sick, sleeping, etc. Looking for a job. Highlighted my hair. Thanksgiving meal planning…was awkward.

December – 2weeks after I highlighted my hair I dyed it dark, dark brown with some red highlights. Christmas. My mother started paying me to leave the house. She also had a stroke. Family paid me to stay home from vacation…sounds worse than it was: I wasn’t going to go so they paid me to watch the dogs. To be honest, I don’t really know what else happened.

January – Thought about returning to beauty school, but that didn’t work out (like so much else over the last year it seems lol). Started school again. Kind of got the medication regime figured out. Had an at least 5 trip root canal/tooth pulling, I don’t recommend that either. Felt really good about things getting better…and me getting better.

February – Made it just over 6months without a trip to the hospital…turns out I had kidney stones. Surgery #2 for the year…and for my life. Peed blood, peed blue and finally peed normal again. Had a stint put in (while under anesthesia) and pulled out (while awake)…I don’t recommend getting one of those. Recovery sucked. It hurt to move, pee, walk…anything. Got a job!!!! The surgery happened my second week of work and I had to take a whole week off. Thankfully they were really nice about it. Fell behind in school. My sister got a dog…a 10month old Husky, Kaya…I’m now her nanny.

March – My mother and sister threw me a surprise party, that I demanded not be a surprise. It takes a lot of planning to prevent me from getting sick. School graciously allowed me to drop my classes without Ws again, due to the surgery. (WAY annoying…it could be a whole post all on its own)

So, not many tattoos or piercings. I’d like to get my nipples re-pierced, but when I have more money and can come up with a good time to have them pierced. I’d like another tattoo or two, but I can’t exactly figure out what I want…and I also need more money before that becomes a good idea.

I was really hoping 2011 would be hospital visit free. Maybe I can just hope for a hospital visit free 25th year.

I’d like to be able to stay in school long enough to actually finish something. I’d like to move out…I have doubts that’ll happen by the time I’m 26 (a little sad :-/), but I’d like to be kind of close to that happening. I’d like to feel normal more days than I feel sick. I’d like to be productive, I’d like to feel like I’m getting somewhere.

I don’t know, I don’t think I want anything too complicated. If I could have my health and life back, I’d be okay with the rest of the shit life throws my way. Maybe I wouldn’t be okay immediately, but I’d get there.

Not having my health at 25 makes me feel all sorts of ways. Angry, sad, hurt, disappointed…maybe I’ll post about it soon.

But, really, Year 25, please grant me a year of health.


S-A-T-U-R-U-R-DAY NIGHT

Except it’s Sunday night. Mike Myers was on SNL this week (on Saturday night – see it’s sorta relevant). My favorite Mike Myers movie is So I Married An Axe Murderer, which has this song. So, it’s not entirely random.

It’s become apparent to me how much I’m stressing over this coming week and month. If I take every appointment as it comes and each day it comes, I’m fine. Seeing doctor appointments set Monday, Tuesday, next Tuesday and the Tuesday following AND the dentist this Monday too.

The dentist I’m not too stressed about.

My endo – I’m terrified. I know I have an endo complex, but I haven’t been this worked up for a while. My first and second endos were intimidating, one made me cry and the other told me they wouldn’t help me if I didn’t log my sugars. I should have logged my sugars, but I’m stubborn…and I’ve never been good at it. My endo in Montana was wonderful, I loved him. He was respectful and willing to help, but didn’t force things on me. I got a new endo when I moved back to California. He has been good. My first appointment he gave me Symlin and a Dexcom for a week. My second appointment he told me I was the most compliant patient he had and did amazing on prednisone. The day before that appointment was an amazing day, had one low and didn’t go any higher than 160 or something. Today, the day before this appointment, I’ve been 42, 140, 70, 160, 55, 275, 48, 300, 220, 270, 240 and now holding steady around 310. I have no way to explain it. It was just an off day of extreme zigzags. Until late in the evening it was just a lot of over-corrections in both directions. Now, I KNOW I’ve over-corrected, but I’m not budging. I have 15U in my system and I’m still not dropping. I swear, once I’m out of range it’s hell getting back. If I’m too low I really can’t function, if I’m too high I’m a big grumpyface prone to bitchiness. I feel like I need to be able to explain myself. I just don’t know how or why it really happens. It would make sense that this stupid ibuprofen is wreaking havoc on things, so maybe that’s it. Who knows if he’ll believe it though, he won’t believe me that Entocort EC is a steroid.

Tuesday I’m seeing my PCP. I’m happy to go there…except that it’s at 9:15a, but still happy to go. I can get my bloodwork done there. Also, I need to ask her about my shaking hands. It’s been really odd, I get really shaky hands. Not when I’m low, not when I’m high, just during the day. It’s slightly concerning. I really like my doctor. She’s nice to talk to about not just diabetes, not just Crohn’s, not just neuropathy…just about me.

I also have my second interview at the dog daycare/boarding facility on Tuesday. If I am hired I will most likely start this week. It’ll be nice to have a purpose for getting out and nice to be around dogs all days. Dogs are easier to be around than people…or at least they are for me. I’m a little nervous of handling school and 20hrs of work a week. It sounds lame, I know…but I really am so limited in what I can do. I get worn out SO easily. I hate being so limited, but it’s reality for me right now. Hopefully it’ll be great, not too much stress, fun and a good fit.

Next Tuesday I see my gastroenterologist. I already wrote about that appointment. I think they’ll be calling me tomorrow. We played phone tag about my dentist’s desire to put me on an anti-inflammatory medication. If they pull my tooth tomorrow, we’ll probably have to talk about what I can take for that too. It’s not worth it and probably not justified, but I feel like it’s my fault things aren’t going better with Crohn’s stuff. Or maybe that I’m not feeling what I’m feeling. Weird, I know…it’s just WHY can’t I get it together?!

The following Tuesday is my neurologist appointment. We need to talk about my muscle spasms and my shaky hands. He and I have only seen each other once and it wasn’t for very long. He doesn’t seem too interested in figuring out why I have neuropathy, but he seems to think I do in both hands and feet.

Eventually I need to see the eye doctor. But, I want to wait until I have a job so I can pay for at least something.

The one positive and even a little bittersweet part about all these appointments is that I can transfer over to my insurance’s mail order pharmacy. It just saves so much money. I LOVE my CVS in Castro Valley. I really don’t want to leave. But when you have meds that are $10, $25 and $40 every month and the mail order pharmacy charges the same for a three month prescription, you just can’t justify it. To make myself feel a little better I tell myself that I can still fill my temporary prescriptions at MY CVS…I’ve been on four or five already this year. I might have withdrawals if I don’t get to see them.

Another, oddly entertaining and somewhat pathetic event happened this weekend. My mother told me it’s been heavy on her heart I need a social life. Yes, a social life…as in getting out of the house. So she intends on occasionally donating $10 to my social life fund. Having no job and no money does play a part in my staying home so often…why leave to pay for gas, pay for wherever I’m going and whatever I’m doing? I can use the internet at home. While doing homework and studying outside the house would be nice…it’s cheaper to stay home. But, getting out will allow me to have some space from our already strained balance in the house. …Plus, I wore a short sleeve shirt today and I seriously need to get some sun!

Well, I started this on Sunday night, it’s now close to 1A on Monday…whoops.

I’ve added another reading assignment to myself…Last Child in the Woods. My roommate in ID had the book and I’d meant to read it but never got around to it. He told me about it and it sounded incredible. THEN my sister had to read the book for one of her classes in the Fall. She gave it to me tonight. Yay :)

One last thing…I’ve added another shower injury to last week. I bruised my toe REALLY badly, it’s black & blue and hard to walk, as I was getting out of the shower. I hit it on the door track. I’ve used this shower off and on since 1998…you’d think I could manage to use it and not injure myself.


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.


San Jose Sharks

I would say 95% of the people who read this didn’t know me in high school. Had you, you would have known I was a huge fan of hockey and the SJ Sharks aka my potentially unhealthy obsession. I mean, I don’t think it was THAT bad…but my mother definitely did.

Most junior high and high school girls had posters of NSYNC, 98 Degrees (that was the Nick Lachey band, right?) or Backstreet Boys…I had one poster I bought with some friends at the mall of Backstreet Boys. I didn’t purchase it because I liked them; I purchased it because as far as I could tell most of my friends were Backstreet fans over NSYNC. In addition to my one Backstreet Boys poster, I had a wall and a half (if I remember correctly) covered, no white wall showing through kind of covered, in hockey pictures.

My high school English speeches were almost always hockey or Sharks related. I studied the game: its history, rules, changes, expansions, player contracts, player association-league relationships. In my planner I had every game color coordinated (I’m still a girl lol) schedule written in, at the completion of the game I’d fill in the new team standings as well as scores, basic player stats, hits, shots on goal, etc. On game days I made sure to wear Sharks memorabilia and usually donned something Sharks related on other days. I begged my parents to let me go to as many practices as possible, they’d let me around 2 times a month. I have ALBUMS of player pictures. Albums wouldn’t be such a big deal if I had enough other pictures to create albums of those too…but I don’t. The ONLY full albums I have are filled with Sharks pictures.

In high school I was not at all in the “cool” group of kids. I wasn’t really in a group. Kind of a loner I guess. I had a couple close friends the first two years, a semester in a different school and acquaintances the remaining year and a half. My parents were also pretty strict so I didn’t have a lot of opportunity to enjoy extracurriculars…outside of school sponsored extracurriculars. Now that we have a basic understanding of my “fanship” and lack of a social status in high school…I would regularly be stopped by jocks to discuss Sharks news/scores/standings. Yep, that was how people kind of related to me…well the jocks, not so much other people lol. People really didn’t know much about me, which was sort of my fault I suppose, I was pretty quiet…aside from my teal clothing.

THEN…I moved out. And then moved back in. It’s a whole long story that really shouldn’t be blogged about. But when I moved out I left with a hockey room, when I moved back in I had yellow walls, porcelain dolls displayed daintily and a floral bedspread. Upon my return it was loudly expressed that hockey was too much of an obsession. I watched games, but I wasn’t allowed to yell/cheer/talk at the TV or at the games. AND, I wasn’t allowed to hang out with my hockey friend anymore. That was during the 02-03 & 03-04 seasons.

The strike…it was horrible. I was diagnosed with Type1 diabetes in August 2004. The lockout began Sept 2004. Then came the onslaught of medical confusion. And in May 2005 I moved to AZ. I didn’t have a tv for most of the 05-06 season. For the remainder of the 05-06 and all of the 06-07 season I didn’t have cable.

In May 2007 I moved back to California. By the time hockey season started the Sharks were almost an entirely new team-the albums of photos I had hardly resembled the team…AND I was working CRAZY hours. I was working on the campaign, there was no time to watch. There were the late night highlights and newspapers, but that was it. January 2008 I was out of the campaign and I no longer got Fox SportsNet. Thankfully the guy I was dating at the time was a sportsfan too and I could watch with him.

Between the end of 07-08 and the start of 08-09 I kind of took a break from sports in general. I guess I was worn out. As avid of a fan I had once been before, I guess I was worn out from paying attention to so many and scheduling around it. It was kind of nice not to care about every college football team…it helped that my Michigan Wolverines were PAINFUL to watch. By last Spring I was ready to end my break. It’s weird, I know, I don’t really know a better way to explain it. I think I just needed a break from NEEDing to know what was happening in the sports world. It was nice to just not know for a while, but because I really do love sports, I didn’t need too long of a break. In early 10 I wanted to know what was going on again, I missed sports. So lame…I don’t think any guy sportsfan would really think that way or have that issue, but whatever. I don’t think I’ve ever claimed to be exactly “normal”.

April 10 sent me to Idaho. I kept a few tabs on baseball over the summer and followed the NHL playoffs as best as possible. This past August I came back to California: sick and unemployed. Just in time for hockey. :) The NHL didn’t fail me this time. So, despite my lack of ability to watch my (VERY different) team on TV, I’m glad to listen. I’m happy to have the opportunity to follow them, just because they’re the team I’ve loved for nearly 15 years.

So it’s taken me a couple hours to type this, not because it took a lot of thought, I get distracted easily. But I can promise you I didn’t really mean for this to sound as sappy as it has come out. lol, oops. I’ve mentioned sports movies are the only ones that can make me cry, right?

Anyway, the real point to all this: it’s SO easy for people who regularly identify with being a “patient” to get caught up in just that, being a patient. We go on and on about how there’s so much more to us, but it’s taken a lot of effort lately for me to think of myself as anything but a patient. I see friends a couple times a month, usually hiding how crappy I feel; see doctors regularly; talk to the state and schools about disability related stuff – SO much of me is about being a patient.

Last Saturday (the day the Sharks broke the losing streak!! & my first full game all season-watching) was one of those days where I bucked up and saw a friend. I saw a friend I hadn’t seen since high school – before I was a T1, before I had Crohn’s…or a stupid root canal that won’t heal. Halfway through watching the games (both football and then the Sharks) I realized how much had changed, but sports hadn’t. There was still that. It seems a little silly and more sappy than I like to admit, but it was nice. If you’re a sportsfan, it doesn’t matter if you’re a diabetic, accountant or bodybuilder.

We, in the DOC, always talk about meeting so many people we wouldn’t have otherwise. We come from different places, do different things, are different ages, have different family’s and a lot of different interests. It’s something I think about all the time. But the Sharks or Wolverines or whatever team fans have that in common. You can be SO different, but it brings you together.

Going to practices so long ago, you met SO many different people. Old, young, in between. I went to a Sharks practice with a friend and my sister where the team was away traveling but the injured players were still skating; they invited the three of us and the couple others there to skate on the ice with them. I mean, it’s cool. You can go to a different state and meet a fellow fan and suddenly have a great conversation.

Maybe it’s me and I’m blind and just completely missed the similarity. I think the difference with the DOC and Crohn’s patients (I swear I need to come up with a word b/c it sounds stupid and cold…the other option is I could just move on…) is that we initially connect because of our disease and become friends; and then mention their disease casually as you discuss life. Reality is, our lives are filled with our disease. Not that it’s who we are, but that it’s something always on our mind. That’s not to say it’s always on the forefront of our minds, but it’s there. Knitters, sportsfans, gamers, athletes, car people (can you tell I’m not one? lol), whatever you’re into: most of the time you connect to “do” whatever it is you’re interested.

Does that make any sense? Maybe, hopefully, it at least does to people with chronic diseases.

Before I got on the second mushy-yay-DOC topic, I meant to say: I hope I start writing about more than my health. It doesn’t look like that’s getting any better ANY time soon (or in the long run), I should expand my horizons. I mean it kind of (actually REALLY does) sucks right now. Doctor told me on Friday that “we’re not actively controlling” my disease. She also said I should probably see the actual doctor in a couple weeks; I typically see the PA. Also my mouth is still swollen, still hurts and is still infected, I’m on a new, stronger, antibiotic. I guess for a while the Sharks had a bit too much attention and now I feel like my stupid health has too much attention. It isn’t going anywhere, so I’m just going to have to expand my attention giving capacity.


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 :)


Do You Paint Your Toes ‘Cause You Bite Your Nails?

I love this song. I loved it more when I paid attention to the lyrics; b/c I totally do that. I also paint my toes because I feel like I have perpetually wet nails when I have my fingernails painted.

On to slightly more interesting topics…

I’m in my last 24 hours of a three-part root canal. Two Thursdays ago I went to my new dentist. This is gross, sorry: in late 2007 I developed a nasty puss filled blister on my upper gum. I was told pulling my wisdom teeth would resolve the problem, so I started the process of getting those out. Then I changed insurance. In August/September 2009 I was in so much pain I needed my upper wisdom tooth removed immediately. They started me on antibiotics and pulled the tooth. All was supposed to be well. March 2010 I had another tooth infection and needed another wisdom tooth pulled; I opted to pull the remaining three. My dentist thought I may (keyword: MAY) need a root canal in the tooth in front of my initially removed wisdom tooth eventually (another keyword: EVENTUALLY). In the mean time, I needed a deep root cleaning. So, I used the remainder of my dental insurance and had the deep root cleaning done. April-August 2010 I was in Idaho. When I came back and had seen my GI, Endo & PCP I looked into getting my tooth fixed. November 2010: hello change of insurance, followed by holiday madness. January 2011, here we are. My new insurance approved dentist referred me to an endontist and I got an appointment for the next day, two Fridays ago. They take pictures of my teeth and tell me they can’t start the root canal yet, I have to be on penicillin first. She could start the procedure Monday. So, Friday I started the antibiotic and came in Monday morning. It took at least an hour to numb the correct area of my mouth and they started drilling. My doctor then told me I have an “interesting” tooth. JUST what I wanted to hear. She told me my tooth was black inside, they needed to TRY and save the tooth, they’ll pack it with antibiotics and give me a temporary filling. If they cannot save the tooth I will fall into one of two categories: the tooth will need to be removed or I will need oral surgery of some sort. The waiting time for the antibiotics is a week, so tomorrow, the hope is, I will complete the root canal from hell. Continue reading


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.
Continue reading


Happy November!

Happy Diabetes and Inflammatory Bowel Disease Awareness Month! Or as I like to call it, Happy Ashley’s Awesome Body Likes Chronic Diseases Month.

Not much to say, but I feel I should kick off the month with SOMETHING to say.

This weekend was BAD: bad food, bad choices, bad sugars, bad pain and bad exhaustion.

Friday started it. I was really sticking to the SCD eating regimen and loving it. I wasn’t feeling like I was missing out on a thing. Well, Peet’s sugar cookies maybe, but it really didn’t bug me. My dad has been telling me all week he’s a stress eater so he was constantly hungry (as of today his company no longer exists). I’ve been helping out in the office through the transition, since I moved from Idaho. We took an afternoon walk. And that’s when he bought me the damn cookie (the cookie mentioned in my last post). THEN we had burgers and fries for dinner before our movie, It’s Kind of A Funny Story – it was pretty good.

Saturday…it started pretty well. But then came the deli sandwich…in reality I had known I’d fold and get the sandwich at some point because I had a coupon for a free one, so I figured I’d just keep on eating SCD illegal foods while I was having an off day to begin with. We bought our Halloween candy at Target that afternoon…and THAT was tough. I’ve eaten WAY more than I should have, both Saturday and Sunday. AND I also managed to lose my pump clip somewhere between Whole Foods, lunch and Lucky (grocery store for tooth floss). Which is really annoying when I’m not wearing jeans.

We ran errands all day Saturday and I guess it wore me out! I slept nearly 14 hours!!! I went to bed pretty late…but getting up at 2:30P is WAY late. So, I wasn’t terribly productive. I started with SCD pumpkin pancakes. Then I made some SCD cashew bread…I think I’ll try almond next time…cashews are too fatty.

My stomach bugged me off and on all day on Sunday. But hopefully, and really I do hope and plan to, stick with the SCD legal foods all day Monday. When I stick with it my sugars are level and my tummy doesn’t feel quite so terrible. I’d really like to not feel sick at all, but that seems to be asking a bit much. PLUS, I need to know what to report back to my doctor on Tuesday…it would help if I were eating “normally”.

Also, my neck is KILLING me. It hurts to move. You know when your muscles hurt as you’re getting sick or if you have a bad cold or the flu? Yes, it’s THAT feeling.

Even more ridiculous than sleeping 14 hours…I was actually tired on Sunday night! By 11:30 I was half asleep. If you do the math I was awake for 9 hours. There has to be something off about that! I mean, really? I think you’re supposed to sleep MAYBE 9 hours and be awake the rest, not the other way around! Because I’d like to be “healthy” and feel at least a little bit normal, I’m trying to listen to my body. Sleep when it says sleep, eat when it wants to eat, etc. But, I don’t know how much I’ll be able to do being awake for that amount of time and tired for most of that!

I hope my eating will maybe help that too?


My Little Blue Pill

I now take 3 little blue pills…4 times a day. Two of the 3 are Pentasa which are the size of horse pills. The other is new, the little blue pill, otherwise known as dicyclomine.

On Friday night my dad and I went out to dinner. (BAD decision, I know) But we were sitting at the table getting ready to eat and I told my dad I needed to take my little blue pill. We immediately both laughed. Thankfully I’ll never be on THE little blue pill, since I’m not a man. But we had a good laugh anyhow.

Thus far it seems to be helping. But I’ve only been on it since Friday evening.

I called my GI’s office on Friday to inform them about my insurance change coming up the first of November to and HMO. And while I was on the phone I figured I should ask the questions I’d been wanting to know answers to for the last couple weeks. (I’m still working on the whole not feeling bad about calling my doctor and feeling like I’m bugging them) While I’m mostly okay with having conversations about my poop and gut with friends or maybe even on the phone in public as I was walking somewhere…I am NOT okay with having the conversation with the staff of my father’s newly merged company around. So I closed my father’s office door, most of the way and asked. My motivation was also driven by the whole wheat flour raspberry linzer cookie I ate an hour before…I was in a great deal of pain. The doctor called back within an hour and she told me the doctor on-call this weekend and that she was going to prescribe a new medicine and I have to take a fiber supplement at night. She also wants to talk to me again on Monday or Tuesday to touch base. AND the best news…she’s willing to work with me over the phone until the insurance issues/referrals get worked out! I’m really thankful for that since I feel like I still very much need her help and things are so NOT settled down.

My father is a bad influence. Not about all things, but about food. I have done very well sticking with my diet, unless it’s just him and me together. He was the one who got me the cookie on Friday. On Saturday we went to the farmer’s market, he bought a cheesecake brownie and offered to get me one as well, I refrained. Then we went to the meat market, who make the BEST fresh made sausages. I got a broccoli and cheddar sausage figuring it wouldn’t be too spicy. Then the post office, Target and Whole Foods. THEN we went to lunch. I had a free sandwich coupon from a really great deli. The sandwich was a pretty bad idea too…but it was really tasty. I ate the sausage for dinner…I was wrong about not being spicy. I like spicy foods, just right now my body does not. I can honestly say, they do NOT taste anywhere close to good on their second visit to my mouth. I was in pain all night Saturday and my sugars shot up close to 300…I ate 2 sausages and zucchini…I have NO idea why that happened. And, I don’t really blame my dad, it’s just harder to make the right decisions when he’s SO bread oriented…he had a box of mac & cheese for dinner with garlic bread and a steak. It’s not him, it’s me, I need better self-control.

I’ll be making some SCD friendly bread today. And hopefully that’ll make it a bit easier. Maybe I’ll make another cheesecake too, it’s pretty low in fat and decent on carbs…and SO SO good. When I make enough food it’s so easy to avoid feeling limited. I feel like I’m eating whatever I want to eat. But then I run out of food, don’t want to make more & when I’m offered something delicious…I fold and take it even though I know it’ll most likely make me sick.


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