Category Archives: friends

No D Day

No D Day…being that I rarely blog specifically about D, I thought this would be easy. Then I realized it’s always brought up some way, because it’s a huge part of my life. So here’s my attempt of a no D day post…

Consequences are a you know what. I don’t believe in karma, but I fully believe in consequences and fully support them. Coming from that perspective, consequences are really frustrating. I made a poor choice, which led me to more poor decisions, and things progressed from there. I am dealing with the consequences. It’s unbelievably frustrating to know it’s completely your own doing that puts you in a crumby place.

It’s fairly common for people to think I’m a cold person. I don’t get emotional about things, I can be rational to a fault. Seriously, I get myself in trouble way too often. Yet, I made irrational decisions; I knew better. Not that there’s anything I can do about it at this point, but I’m disappointed in myself. All I can do is pray for grace.

I have a friend whom I admire greatly. When I was in high school he told me whenever asked how he’s doing he’ll always respond “better than I deserve”. I understand not everyone can identify with that statement, but to me, it’s an incredibly humbling perspective. Because, honestly, I am always doing better than I deserve to be. Yes, the world is full of injustice, and life is cruelly unfair; but it’s still better than what I deserve. By this I mean, I don’t deserve to be with God in my life. None of us do; it’s really only by His grace I have the choice to have a relationship with Him. (I know you may disagree, and I’m not trying to argue, I promise)

The last few months have been incredibly emotionally draining. But it’s a position I put myself in, by choice. It’s been so hard, so much harder than I expected. And I’ve spent a lot of time asking “why?” And, yes, someone else’s choices and behaviors could have made this less draining; but people are free to make their own choices. When you involve yourself with others, you put yourself at their mercy.

When you tell a friend a secret, you’re trusting them to be kind with it. When someone chooses to open up to you, they are being vulnerable. My past has made me very weary of allowing myself to be vulnerable…and I’m clearly not great at identifying the right people with whom to share. But, you live and learn.

I guess that’s why I’ve been able to remain joyful, despite the challengingness of this Summer; perspective. I’m still alive, still learning and have a life so much better than what’s deserved.


Thank you…Really

It’s funny here in the DOC.

Granted, I haven’t been as active as I once was. But I always know we’re all here and I can always come back. I wish I came back more often…that I could take part in FFL and the Roche summit so I could actually meet so many of you.

Recently, I was inspired by some “real life” experiences to, once again, re-up my membership to the DOC. All the FFL pictures and posts have also contributed. But, really, my actual experiences are the ones that have made me so grateful for what we have.

My work situation right now is not ideal (but we can discuss that some other time). Due to this less than ideal situation, I am working in a lot of different locations and with a lot of different people. Thankfully, I love people so it’s actually good in that regard. I met a guy not too long ago in one of our stores; someone told me he had T1 too when they’d seen me injecting. I found it to be an interesting fact, but didn’t rush to go tell him I was T1 as well. A week or so later he saw me inhaling some Skittles and I said what a pain it was to be low at work. He did a double-take and asked if I’d just said “glucose” (apparently I said glucose in whatever I actually said…I was low, I can’t quite remember). I said yes, and then he was SO excited and asked a million questions and we talked about diet, low correctors, insulins…all the diabetes-lingo. Turns out I was the first person he’s met with T1. He has been T1 since he was 8 or 12 years old and I think he’s 21 or 22 now. I was shocked.

I first stepped into the online world of diabetes with Diabetic Rockstar, in January 2008. I double checked my dates, so I know I became a member of the DOC only 3.5 years after my diagnosis. I was so shocked by this whole new world that knew what I was experiencing and was SO grateful. This guy I met, he’s gone about 10 years without really knowing anyone with T1. TEN YEARS!!

Hands down, there’s no way I’d be even half as functional without the support I’ve gained from all of you.NO WAY. NONE.

Shortly after I met this guy, I met this girl. She too has T1. She’s on a Medtronic pump. We were at In-N-Out together, in the same group of people, but didn’t know each other very well, I took out my pen (we can also discuss my pump vacation later) and she was shocked too! We don’t talk much about T1, but being in the same general circle of friends, we had an instant connection. It’s odd, we’re not as close as I immediately became to all of you, but we definitely did have a sudden quasi-closeness.

I’ve always been grateful for everyone I’ve met through diabetes, especially those online. Crystal, Ashley and Sarah are some of my closest friends now…as well as so many others. It wasn’t until the last month or so that I’ve been able to see exactly how grateful I am.

You’ve been with me through figuring out diabetes. Dating with diabetes. Moving to a forest. My health falling apart in the forest. Moving back in with my parents because of my health falling apart. Becoming not just a diabetic, but having Crohn’s too. Family craziness. New dogs. New jobs. Everything. I could never have asked for better friends or a more accepting surrogate family.

I love all of you, you’re all amazing and matter so much to me!

…Sorry for being a giant sap.


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.


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.


MIA…again

Feel like there has been so much going on the last couple months. I am working in less than 9 hours, so instead of write it all out I thought I’d post some pictures :) Who doesn’t like pictures!?

She's so lovely after we finish at work, also...she looks like a squirrel.

Whoops! The torn out site debacle from the D-Meetup w Jess & A (talk about an embarrassing time to happen!)

She's my favorite when she sleeps...so peaceful...and not eating things.

It's usually best to take walks in the rain with rain gear on, maybe I'll remember next time

First regular season Sharks game in a LOOONG time...at least five years.

Got decent discounted seats...AND they won...in a shootout, but a win's a win!

Took my sister with me :) Dinner and a Sharks game...can't get much better than that.

How adorable is she?!?! Her name is Tori, she was boarding at work...love her!

Rocky and Rocky...also from work.

Another Sharks game! Same ticket price...WAY better seats :)

Such good seats! AND I had decent seat neighbors, they knew about the sport! (not too typical here in SJ, sorry if that's offensive)

We won again :) 3-2 Started a bit slow & couple rough PPs...but we fought hard & came away with it.

Ignore the mess and lack of makeup...but my hair has faded SO much! (have been noticing the last few days lol)

And that’s the recap. Could say more…and I will eventually when I can, I have my yearly bday update to post!


A Good Day

Been feeling like they’re few and far between these days.

Oddly, Tuesday was a good day. Nothing spectacular happened, I didn’t do anything particularly exciting or important.

I got lost in Danville, not really I just forgot where I was going so I guessed and guessed wrong. Then I placed something in my head, only to see my head was wrong and reality was a bit different. However, the actual intended destination was near where I thought it had been.

My oral surgeon had to pull out a stitch that wasn’t healing…hurt like a…I don’t know what, but it hurt.

Stent is still annoying the crap out of me. ALWAYS feel like I have to pee! And there started to be more blood today:( Today I get it out though! Can I tell you how NOT excited I am about the procedure?!?! It’s big and goes from my kidney, through my ureter to my bladder. I will be AWAKE while he puts the hook in to pull it out! But I am glad it’ll be gone.

Had class, am WAY behind and it’s going to take a lot of work to catch up with all my classwork.

At work we mop up the dog pee, if they’re inside. It’s Pine-Sol and water. After my shift I have to clean the pee bucket and refill it for the next shift. I splashed it all over my arm, hair, shirt and jeans. DOG PEE! ON my face!!! I was able to change the shirt after work, but didn’t have time to shower or find another pair of jeans and I’m 99.99999% certain I smelled a lot like a dog in class. After class, around 10:30 I was finally able to get in the shower.

Dogs are dirty, I know…and frankly really don’t care. We only wear work/casual clothes…jeans & old t-shirts/sweatshirts. But I can, without a doubt in my mind, tell you getting pee/pine-sol/water/dog hair splashed all over myself is not terribly enjoyable…funny, yes…gross, definitely. I think I may have wigged out if it got in my mouth, but so long as it stays out of me I’m good.

Monday night I was talking with Jess about forgetting diabetes stuff, I KNEW I would need to refill my pump at work Tuesday morning. I TOTALLY forgot my insulin! Thankfully it ran out towards the end of my shift and was able to go straight home, but waking to 312, dropping to around 90 at work and then popping right up to 344 was a bit exhausting.

Perhaps it was a good day because I was productive and actually tired. It’s a great feeling to be not only mentally in need of refreshment but physical too. There are so few opportunities for our society to be active in the workplace. Yeah, I hang out with dirty, slobbery, LOUD dogs all day…but I’m moving around, playing, cleaning. It’s not like I’m making a major (or any) contribution to society, but I’m making the dogs have a better day. Dogs are rarely as rude as people can be, they’re always grateful of your attention, they’re forgiving…and they take your mind off all the shit going on in the “real” world.

It’s hard to imagine anyone wanting to be a friend: I’m flaky and have to cancel last minute more times than I’d like, there’s CONSTANTLY something not right, hospital staff and pharmacies know me, I take meds that can mess with my ability to be completely with it, exhausted should be my middle name, eating out is beyond difficult, there’s always some conflict with my health and my family…I am starting to be more okay with this reality.
It’s my life, I can deal with it (most days)…but it’s really hard to “deal” with anybody else’s stuff too. I don’t say it to be selfish, honestly, just as a friend I’d like to be there for a friend as much as they are for me. Some days, that’s not a possibility. On the other side is that my life comes with a bunch of crap, most people have enough to deal with without me contributing anymore. I don’t mean petty drama or anything, but as a friend you care for your friends…when they’re having a hard time you want to be able to listen. A few friends understand and I love them for it. But there are others who get mad when I have to cancel, get pushed out of shape when I don’t respond quick enough, treat me like porcelain or think my limitations are just made up. If only they knew how much my limitations piss me off, I LOVE having a million things going on, tight schedules daily, etc but it’s just not me anymore. It’s okay I’m not, but it’d be nice to have other people on board, not to mention the poor responses make me feel worse about not being as capable.

Well that was a long rant in attempt to say, dogs don’t care what crap you have going on, they always like you. At one point on Tuesday I had 2 dogs on my lap, one between my feet, and two on each side trying to beat out the other for my attention. I definitely get tired of cleaning up poop and pee, breaking up rowdy dogs and hearing the deafening barking of some dogs…however, it can be incredibly therapeutic. It’s almost always chaotic, but a soothing chaos. Crazyness.

I’d love to have more good days, less sick ones. I think I cherish my good days more than I used to, it’s nice to feel like not such a disaster.


Take What You Can Get

I started a post on Feb 11th and never finished. It had a great title and everything: “The Dog Days are Over”. It was wrong, I think they’d only just begun.

February 11th I had two new pieces of information: (1) I was surprised with a new dog for my sister. A 10 month old Husky. Her name is Kaya and she’s every bit a puppy. (2) I FINALLY got a job! I was hired the same day we got the dog…and my new job is working with dogs. My official title is “Dog Handler” – I play with dogs, keep them well-behaved and end any fights. With the little dogs I end up cleaning poop, mopping pee my whole shift and with whatever time is left, I pet them. With the large dogs, I keep them from killing each other…not really, they just rile each other up and it’s my job to keep them settled…somewhat. They’re allowed to play, however, a lot of the dogs are right around Kaya’s age and get too excited. By the end of the three hours all the dogs are exhausted and most are stretched out on the floor.

So, there was going to be a whole blog about that…but now there’s more…

Did I mention my root canal finished? It failed. The tooth was pulled. I now have a lopsided mouth. It still bleeds from time to time, but the surgeon thinks it looks good so it’s not a problem.

Last Friday I made my first visit of the year to the ER. Thursday night around 9pm I started feeling pain in my right abdomen. By 11p I thought I was dying…perhaps a bit melodramatic, but I was in a LOT of pain. I tried going to the bathroom, but couldn’t and it didn’t really feel like Crohn’s pain, but I thought maybe. Then I tried a shower, didn’t work at all. Tried a heating pad, no luck there either. Finally I took some pain medication…which I don’t like to do because it tends to mess everything up with my Crohn’s. Then I was afraid to go to sleep because I didn’t want the pain medication to wear off and wake up in such searing pain. I had thought my doctor’s office opened at 7am so I planned to call then, turned out they opened at 8:30a, so I called the on-call doctor at 6:45a. She recommended I go to the ER, she felt it may be Crohn’s related and waiting to see the doctor, ordering the CT, getting the CT and seeing the results would take too long and it was a Friday after all.

So I told my parents where I was going and went on my merry way. There were three of us in the waiting room, I was the third…though I was called in first. (A bonus of having diabetes). The ER doctor felt I may need my appendix removed so he ordered a CT to find out. I survived my very first enema and did “well”…whatever that means. Turns out my appendix is just fine, for now. However, I had a number of kidney stones. They gave me more IV pain meds and sent me on my way. After a short spat with my mother regarding my ride home, I called my PCP’s office and asked for a referral to a Urologist. Then there was another short spat and a trip to the pharmacy…and then another pharmacy because no one carries PercoTAN anymore. My mother dropped me off at home with the THREE dogs and she and my sister left for the day.

Before they left Kaya of course got out because my sister needed to say goodbye to her 5 times and standing on the other side of the gate was unacceptable. Kaya then sprinted around the neighborhood. She finally came back and she was put in her crate. She screamed, cried and yelped…while I was trying to get the urologist to fit me in that afternoon.

I still couldn’t drive, my dad was coming home from work but was still an hour away and I had a friend I’d just canceled on…so I called her. The urologist could only fit me in if I could make it there by 2pm…which was 40mins away. I walked a half a mile down the street…in the pouring rain, met my friend on the corner, she dropped me off at the appointment and my dad met me there. Before leaving for the appointment my tooth started bleeding again. As my friend was driving I called the oral surgeon…he wanted to see me too. So I told him I could meet him at 3pm and explained the ER/doctor situation in a very abbreviated form.

Urologist showed me my CT, I had two large kidney stones and about 10 others in the right kidney and one in the left. He informed me I had a choice to have surgery done or not, but since I was at a higher risk of infection and already have inflammatory issues it was possible I’d need emergency surgery done. If I scheduled the surgery I could avoid another ER visit. …with my luck I thought it best to schedule the surgery. If I passed the stones over the weekend I could call Monday to cancel, otherwise Tuesday was the surgery.

Tuesday came, I had a morning appointment with my neurologist. That was lovely. I have another medication and “condition” or maybe he said “syndrome” but he told me it wasn’t technically a disease…essential tremors. The new med is Propranolol, a beta-blocker. Yay, just what I wanted! Another medication and another “condition”…I think I’ve had enough, thanks though.

Writing about this is depressing…I’ll be 25 in 13 days. It’s not time for my annual “yearly rundown”…but I’ve now had surgery, 2 in fact, am on more meds than I can usually remember, have three chronic conditions and two progressive conditions…2 more than I had last year….more doctor’s visits, more sleep, less life…I’ll shut up now…

So after the Neurologist appointment I went home, grabbed a few things and left for the hospital. I checked in at Noon, my surgery started around 3:30 and I left the hospital around 6:20p. My dad then took me to CVS to get the new medications and then we went home.

I’ve since spent the week peeing blood. I now know what it’s like to have an aching kidney. They put a stent in to prevent it swelling shut…thus the achy kidney. The pain lasted through Saturday. The pain medication has now screwed with Crohn’s and I’m in that kind of pain now…which pain meds will only make worse.

There is a med that is causing me to be really anxious before bed…I’m hoping it’s the pain meds and that’ll go away now that I’m not on them anymore. I’ve finished the antibiotic and the stop bleeding med…but didn’t take the flomax. I can’t really explain why, I think I’m just tired of having weird issues and weird medications and didn’t want to take a med intended for aging men with prostate issues. It’s a dumb excuse, but I think we all have a tipping point, and that was mine.

As a result of the hospital stay I now have three nasty bruises from the attempts at locating a vein for my IV. My sugars have gone batshit crazy…so it’s not just Crohn’s acting up. At least Crohn’s had the decency to wait til the surgery pain had subsided. We can’t always live in a perfect world, gotta take what you can get.


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.


Eves

It has come to my attention Christmas has been rather greedy. Christmas is Christmas, but Christmas eve is just the day before Christmas.

I think this is very silly. I don’t celebrate Thanksgiving eve. And I’m pretty sure I’m not the only one who neglects the fourth Wednesday of November.

Try as I may, I have not dissuaded anyone from celebrating the eve of Christmas. SO, I’ve come up with the perfect solution! We just need to celebrate our birthday eve’s too!

Thankfully I have two and a half months to plan my birthday eve extravaganza! I think it’s a brilliant idea, my family didn’t seem to think it warranted any great celebration…but a few friends have recognized its sheer genius. (By the way, it took me three tries to figure out how to spell ‘genius’ – don’t judge)

In other news, diabetes has a new nickname. Dickhead diabetes. It’s fitting right now. I have spent about three consecutive hours the last two days, at different times of day, below 55. At one point I was 35. On Friday I spent a good 6 hours above 350. Saturday went really well, til I wanted to get some sleep. Once it’s up it’s SO irritatingly challenging to get it down. And once it’s low…it takes FOREVER to come up. It’s exasperating. I feel like I’m not even carb counting anymore. Just correcting with food sometimes and insulin the other. If I want my “plan” to come into fruition, diabetes needs to get his butt in gear and get it together. My plan will not work if I’m rollercoastering all day long.

Also, when I’m high the pain I experience in my abdomen is horrific. Awful. Terrible. All other ‘bad’ words. It doesn’t help me cope with the highs any better. I need to get back to eating very small meals through the day and if I want a treat of some kind (a large meal or more than a bite or two of dessert) I need to have some time to allow for being sick. The most frustrating part is that I know all of this…but have a hard time remembering when it comes to meal time. I really want…and need to go back to eating how my body seems to like eating.

I know I can do whatever I want to do when it comes to food. But I also have to deal with the consequences. The more simple the meal, the less my digestive system hates me. The lower the carb, the higher the rate of in-range levels. These are basic facts…if only I can drill them in my head. I was doing pretty well about eating early, so that if it didn’t agree with me, Crohn’s or diabetes, I have some time before bed to deal with it. The holidays have completely screwed with me. My mom’s health has also messed with this. I’ve been making more family meals…and my family will not accept a piece of fruit as a meal. Or some vegetables. Or a piece of cheese. I don’t blame them for the inability to accept those options as a meal. But when I’m making a meal I want to eat it too. I don’t want to prepare two separate meals. Before I was helping this often in the kitchen I made my own meals most days. That was only for myself though. Anyway, now that the holidays have mostly passed, I’m hoping I can get back on the right track. My body needs to be mostly happy by January 17th…which means I need to immediately get my act together. Hopefully I can keep this in mind throughout the day.

Sorry this is a pretty non-celebratory, un-topic-ed post. It’s late (or early depending on how you look at it) and I’m dealing with wacko sugars again. I felt like writing was a good use of my time. :)

Even though I haven’t been in much of the “Christmas spirit” – I hope you all had a lovely time with your family’s and friends.


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