Day 2: Letter Writing Day

Dear Endocrinologits of Years Past,

My very first, you pissed me off. Really, you terrified me, but had I known what I know now I would have been livid. Granted, you had to deal with the crazy medical outlook of my mother. Yet you still called me and made ME cry. I was the patient, I was scared and it was ME who had to take a crash course in T1 diabetes. I wish you would have helped ME…despite the irritation and distraction of my mother.

Endo #2 – you diagnosed me in the ICU…or maybe it was the ER, I wasn’t conscious at the time. Originally I was very fond of you. You were former partners with Endo #1 and highly recommended him, yet I was willing to overlook my disastrous experience. Still new at diabetes and having no support at home as a teenager meant I really needed some handholding. I didn’t get any from you. However, the diabetes educator you referred me to was wonderful! She encouraged me to move to a healthier living environment. She taught me to count carbs correctly. She showed me her pump and encouraged me with her diagnosis story. When I ran into her five years later it was a pleasant experience. When I discovered your patient files on me a few months ago I read “ cannot help patient if patient will not help herself” – I was 18 years old (!!!), had ZERO diabetes education and a family who though it wasn’t diabetes, it was God teaching me a lesson….I needed a LOT of help.

Oh Phoenix Endo, how I loved you, you saved me. You and your staff helped turn my diabetes world around. I only got to see you because my roommate was terrified I’d die and she’d find me. She told her mom who knew you. You fit me right in when the normal wait was at least three MONTHS! You supported me, explained the numbers and ranges, listened to what I needed, accommodated me when I made stupid newbie mistakes….like running out of insulin in my pump at work. I honestly don’t know what would have happened without you. Before you I attempted to find an Endo on my own – he accused me of being pregnant and refused to do anything until I took a pregnancy test; I left and never returned.

Stanford Endo (#4) you turned my perception of California Endos around. You impressed me with your hands on help, respect and dedication. Some appointments lasted over three hours. I cried in your exam room. I had my first diabetic to diabetic, non-medical conversation. You were always willing to work out the numbers with me and make changes together. If I ever had a problem I could call any time of day, and not feel bad about it. You saved me my first night in Idaho.

Montana Endo, you were by far my favorite. You’re not all about the newest gadgets and medications other endos are trying out on their patients; yet you’re willing to try them out after some discussion on what’s best for ME. You respect natural remedies and are willing to build them into my medical maintenance plan. You found things and spent the time discussing each of the potential causes/diagnoses. I would love to move to the Missoula area, just to be your patient again. Despite my four and a half hour drive to get to you, you were always SO willing to help and work through any concerns and questions I might’ve had. You were also the very first to tell me I was managing my diabetes well and knew what I was doing and was free to make changes as I’d like; it was always okay to ask questions. I could take care of my diabetes management and he was always there to help. How could you not love a doctor like you?!?!

Even if we didn’t have a great doctor-patient experience, I am grateful for your help, because even if it was minuscule, you still helped.

A Grateful Diabetic

And I can’t forget my current Dr. Q…

Dear Current Endo,

You and I aren’t very close. You don’t know much about my Crohn’s medications and the effect Crohn’s has on my blood sugars and diabetes management. BUT, you are very willing to help me with any medication I may need. You are always on top of the newest technology and willing to let me try it out. I’m not sure I’d call you if I had a late night emergency…I think I’d call my PCP. Maybe in time I’ll trust you more. There’s nothing wrong with you or your staff, you’re all incredibly kind and helpful. You got me my Dexcom within weeks of my first appointment, you’ve set me up with a nutritionist tomorrow so that I can hopefully get a handle on diabetes AND Crohn’s friendly foods. I guess it seems you’re a little more chart/statistics oriented…you type all my info into your computer and seem to use it’s recommendations for to solutions to my struggles. When I brought up some concerns, you seemed a bit lost today. Again, I just don’t feel like we’re all that close…but there’s potential. You’re willing to help, when I call during the day I always get answers. When my insurance changed you were willing to work out a special contract and allow me to be seen. Starting a new endo is hard work, I’m incredibly grateful for your accommodations. I feel that we’ll work out well, and I feel l will continue to visit your office until I leave the area. …although I’m not sure I liked your mentioning the possibility of pregnancy…it’s that damn Phoenix tryout endo, he made me feel like a whore and I think I’m just sensitive to doctors considering that as a potential cause to my struggles.

I really hope I can see you for a long time and it will become more personal and my trust will grow.

Your Very Complicated Diabetic

DAY 1: Admiring our Differences

I can’t remember when the JDRF walk was in San Francisco, presumably the Fall/Winter since I remember it raining. Anyhow, it was the first time I met up with Jess and A. Jess had been “following” Meri on Twitter, so she was looking forward to meeting up with her too. I hadn’t known Meri, but it was great to meet her and her family.

I don’t read blogs as frequently as I’d like or as I should…or even as I used to. But when I get the chance to catch up, I usually make a trip over to Our Diabetic Life.

Coming from a family where my diabetes is not acknowledged, I think Meri’s family is amazing. I am in awe of every parent of a diabetic who gets involved with their kid’s diabetes. Having been diagnosed after high school, I didn’t know that many kids with diabetes, so I haven’t known many parents either. It’s amazing to see diabetes accepted into a family’s life, to see it integrated into their daily lives.

Having met Meri, her four sons and her husband, I love to read the blog. Seeing how a family can adapt to and accept diabetes is, there’s just no other word for it, amazing.

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.

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?

Just Because There Needs to Be Happy Here

Idaho Falls Zoo, I think this was the mom watching her two babies play in the sun

I really loved visiting this zoo. Firstly, because I love zoos. Secondly, because they trust their visitors to not be complete jackasses and try to go play in the animals enclosures, so you get to stand closer. Thirdly, I think it was all of $5/person to visit. Fourthly, it’s the last place I stopped in Idaho before leaving…which isn’t terribly happy, but the event was happy.

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.