Category Archives: crohn’s

On Hold

I’ve been on hold for almost 30mins now & have run out of Twitter updates and Facebook statuses to read. After a moment of pondering, blogging was the obvious next course of action!

Life has felt like it was kind of on hold for a while…by a while I really mean the last two years. Right now is a really exciting, albeit scary, time for me. It’s mostly little things, but it’s still pretty awesome!

I’m in a toothsmithing program and loving it! What is toothsmithing?, you ask…it’s making teeth. Dentures, crowns, bridges, implants: the whole shebang! It’s the perfect combination of art and science. It’s also the first time I’ve been a full-time student in 8yrs…totally scary!! But I got my first two tests back today and both were 100% A’s! I think I maybe can do this whole student thing!!

I started teaching swim lessons last week. As a kid, when I was learning to swim, I remember wanting to one day teach kids to swim. It’s kind of a weird early memory I suppose, being that I was about four at the time. Now with diabetes though, holy moly, it’s scary. But I’m determined to prove I can do it!

Why is swim teaching such a big deal with diabetes? Lots of reasons! I’m in the water for 5hrs at a time with kids depending on my ability to help them and keep them safe. My insulin pump is waterproof (thank you Animas!!!) which is incredibly helpful. Dexcom is not…meaning my ability to monitor my blood sugars during that fairly active time period of 5hrs is pretty challenging. Testing on a meter is also hard, since my fingers turn to raisins and my hands are covered in chlorinated water. BUT, thus far I’ve made it work and am determined to keep making it work. Gatorade has become ny new best friend and watching what I eat before teaching has become a much bigger deal. It’s exciting and scary; which means it’s totally awesome!

Yeah, I’m still on hold…lame!

I’m also taking this hour long hips, thighs & ab class this semester and it kicks my butt! And makes it hard not to be paranoid. I’m a control freak and exercise makes my blood sugars anything but stable. So far things are going well, which is great! Even better, things have been going well even without wearing my dexcom!

Like I said, it’s nothing too big or amazing, but it’s awesome anyway.

At this point I kind of want to hang up…but I’ve already invested all this time…and mobile battery.

This Summer has been pretty trying on my emotional sanity. And I’ve managed to keep things mostly in control diabetes & Crohn’s-wise. Minor issues yes, but overall pretty okay. I’m hoping the catalyst for my issue has been removed & I will try to be smarter with my relational choices from here on out.

I’ll be headed to Montana for a few days in 2 and a half weeks. I’m totally stoked! I’ve missed the West so, so much.

Life is exciting right now…and pretty “boring.” It’s a totally new concept for me. Usually life is not so pleasantly exciting and I’m being pulled in a million directions. But now it’s exciting and normal; I have a routine & it’s working!

Before I go…because let’s face it, blogging from a smartphone is a pain & makes your fingers tired…I’d like to point out how I started with my life being on hold & I’m writing while on hold…pretty clever, right? Hopefully I’ll be ending with no longer physically being on hold, since my life isn’t really anymore.

One can always hope, right?

…I think so, since I had on tattooed on my wrist and all…


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.


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.


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.


Root Canal From Hell – Pt. Gazillionth

I was blessed with good teeth. I didn’t start going to the dentist until I was maybe 8 or 9 and I’ve always loved going. The feeling of nice polished teeth is wonderful. Never had any cavities and I’m a compulsive teeth brusher…sometimes more than 5x in a day. …yeah it’s weird, I don’t know why I do it.

Right before I was diagnosed with diabetes I had my braces removed. It was the plan to have my wisdom teeth removed in the first few weeks of August. I was diagnosed on August 4th. The crazy blood sugars and naturopathic medicine insanity prevented that from ever happening.

I moved to Arizona 9 months after dx and could never afford the extra money to go see the dentist. So in my two years living in the desert I went denistless. My move back to California is not something I usually go into great detail about, but it was a traumatic time. But, in October-November I was in so much pain from my wisdom teeth I went to get it checked out. At the time I was working 18 hours a day 7 days a week, so I didn’t have much time to go worry about it. Then I stopped working. And then when I started working again I spent my money on diabetes-related things and didn’t worry too much about the pain.

That takes me up til Fall 2008. In Summer 2009 I was in HORRENDOUS pain. First they took out the one badly infected and were hoping the pain would go away with the removal of the pressure on the root of its neighbor. They also found my first cavities at that visit…I think I had 6 or 8 of them! March last year I needed the rest of them removed. In April I moved to Idaho. In August I came back…but had already maxed out my dental insurance for the year. They had run a test to see if I needed a root canal done and they determined it was necessary, but I couldn’t afford an out-of-pocket root canal.

January rolled around and the root canal saga began…

First too infected to even attempt one, so off I went with a week’s worth of antibiotics

Second they couldn’t finish because it was still too infected, so I went off with another week’s worth of antibiotics, but stronger this time

Thirdly I called and said I was still swollen, but I hadn’t completed the round of antibiotics yet so they said it was okay

And yesterday I went back in because I’m still swollen and my ability to painlessly chew is diminishing daily

So, new plan…

Take 800MG tabs of ibuprofen every 6hrs until Monday. If the pain is still there after being on an anti-inflammatory, I’ll need the tooth removed. They’ll pull it and do a bone graft to prevent bone damage. The dentist feels pretty badly for me it seems, she keeps telling me how awful she feels about me losing a tooth this early in life. She said if I was 50 she’d have already pulled it.

The new plan is okay I suppose. Ibuprofen is not a major fan of my intestines. They like to argue and it’s usually a bloody fight. The whole timing of my dentist appointment was off so I wasn’t able to talk to my GI regarding the meds by 5p to ask for the best anti-inflammatory. But, I’m hoping four days of ibuprofen can’t do anything too terrible? I would like to just have the stupid thing out, I’m tired of messing with it and it making such a mess of my sugars and my intestines. BUT, I am only 24, so I’ll diligently do everything I can to save the stupid thing.

I’ve taken three doses thus far…it’s not doing much for me. It’s not that far along though, so maybe it will by some miracle work.

Now that I’ve had so many issues and they’ve been inside the tooth and have seen its reactions, they have a better idea of what caused the death. The stupid first wisdom tooth. But it’s not really the wisdom tooth’s fault, I’m blaming the big fat liar diabetes. I’m not bitter about getting diabetes when I did, because there are a lot of good things about not being diagnosed until after high school. The timing just sucked and then I gave diabetes too much undivided attention and didn’t diligently maintain other parts of my body.

Ahem…like say, my not taking Pentasa as directed because I could save the $50 so I could take care of diabetes things.

But really, how much medical crap can one person handle? I can’t spend any more time in doctor’s offices. It’s so easy to fall into dealing with medical issues only when they become unavoidable. Even my sister is of the same mentality. When we first started talking “teeth” a couple months ago she told me I have much more pressing medical issues to take care of first. I obviously have to have priorities, though giving non-life-threatening some tending to is important too.

After my teeth get squared away, I have to get my eyes checked out. I was supposed to have my annual checkup in November. Maybe by March/April I’ll have verified healthy eyes.

That is if I haven’t messed up THIS tooth’s neighbor too. They told me it was a possibility. I’d really like to avoid having another root canal done.

Oddly enough, despite all the bullshit that’s gone on with my mouth I still love going to the dentist. Is that a bit twisted?


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.


Real World

Not an obvious song title, but it is! One of the few positives coming out of my January Technology Crash aka death of my Windows operated computer, is I’ve somehow been able to recover some really old iTunes purchases. The All-American Rejects make me a happy camper :) …I don’t think I’m supposed to admit liking them though…oops.

Anyway, the title actually relates to my post! Lately I’ve spent a lot more time in the kitchen. I’m not 100% sure of the reason, though the possible causes are: – I have no job & one class outside of my house so I’m home a lot – My diet has become something my family is not open to adapting along with me – I cooked a lot of my own food in Idaho.

I’ve always had a huge interest in people and cultures. People fascinate me. And since I’m in the kitchen so often, why not start making foods from various countries?!

Monday night I went out and got a world map from AAA and plan on marking each country I cover. The other twist with this, is I’m going to try to adjust the recipes I find into gluten free versions. I’ve heard some people with Crohn’s (I still don’t have a good term – suggestions??) have success eliminating gluten from their diet. Along with gluten I’m trying to limit my milk consumption. I still plan on having Greek yogurt, it’s cooked long enough to kill nearly all of the lactose. (I haven’t tried my new milks yet…I’m planning almond milk for my gluten free Puffins this morning)

Anyway, I’ve started researching some German and Irish dishes. I think I’ll move to Russia next. I’m primarily German and Irish and my family recently discovered lineage to Russia. I briefly looked at some Cuban food…which I’m excited to try.

My goal is to make a full dinner, meal and dessert from one country once a week. They can fend for themselves the rest of the week…and I’m not sure they’ll go for gluten free 7 nights a week.

The Irish desserts look AMAZING! I can’t decide between an oat cream (yeah oats aren’t 100% certainly gluten free, but I love my oatmeal and it’s staying around) fruit pudding-like dessert or a Baileys pie. We might need to visit the Irish more than once. :) Most of the German desserts I want to make will have to wait until May-June because they involve more fresh summer fruits. There’s this wonderful looking plum meringue pie, plum cake and some other fruit cakes.

If you have any suggestions – of countries or recipes, I’d love to hear them!

This isn’t too nerdy of a goal, right? I think I can consider it a good use of my time, yeah?

Oh, also, a quick health update:

  • My tooth still hurts…and I still haven’t called the endontist…for the millionth time to tell them I’m still not better. It seems redundant. If I’d ever like to have fully functioning mastication abilities, I should probably call. :-/
  • My stomach bruises have changed from purple-blue to black. It looks awesome. My mother was appalled when I lifted my shirt to take my Symlin yesterday…she was also disgusted.
  • I cut myself in the shower yesterday, with an exfoliant. A simple bar of natural ingredients intended to slough off dead skin. Part of me thinks this could be a fault of the product, but the more reasonable portion of my brain is certain this would only happen to me.

So, not good, not bad, but mostly just the same. At least a shower injury is entertaining…a little, tiny bit, but entertaining nonetheless.


Milk

I LOVE milk. LOVE.

Sadly milk has SO many hormones now days and unless you’re buying local (and can afford the price tag) you really don’t know the conditions of the dairy cows. So I’m trying some alternatives.

Back in high school I was a big soy milk fan. But, there’s a higher level of estrogen in soy milk and some studies have linked it to a risk of breast cancer. There have been a number of women in my family, mostly cousins, who’ve had breast cancer, so I just stopped drinking it. Regular milk doesn’t bug my system too badly, as long as it’s 1% or 2%. In ID we brought soy out on hitches b/c it would stay cool enough in the cold weather whereas milk wasn’t as easy to transport.

Monday afternoon I went to Trader Joe’s and picked up three different options.

#1 – Almond Milk – plain – less hormones/mild flavor/protein/low fat

#2 – Soy Milk – plain – I know I like it/protein/low fat/helps lessen fat absorption in foods

#3 – Hemp Milk – plain – mother said it tastes good/she heard good things about it

We’ll see how it goes, I may try one at a time or maybe in a rotation?

I’m hoping the elimination of wheat and most gluten will help me feel a little better and find better balance between T1 and Crohn’s. I’m tired of being tired all the time. Here’s to hoping!


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.


Follow

Get every new post delivered to your Inbox.

Join 860 other followers