Category Archives: endo

Piercing Has, Tubing Death

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

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

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

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

24th Year

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

The dentist I’m not too stressed about.

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

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

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

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

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

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

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

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

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

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

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


You Can’t Escape Reality For Too Long

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

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

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

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

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

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


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

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

On to slightly more interesting topics…

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


Really Rambly

Here’s the predicament. I’ve been thinking about writing a post about this specific problem, but I always back out of it. Either too scared, too tired, or too aware of what other people think. I text and call some friends about these problems…but I’m not sure I’d want everyone knowing about it. AND I’m pretty sure those select friends aren’t big fans of hearing it either, but because they love me they put up with it…or at least pretend it doesn’t really bother them.

Since I’m up right now partially because of said problem, I guess I’ll go for it.

Diabetes has this stigma of shame. We’re irritated with other people’s “should” comments on what we eat, do and want. Can’t eat this, that or the other thing. It’s my opinion that since insulin started with this feeling of shame (the first patient on insulin’s children didn’t even know she was diabetic!!), we’re still trying to break free from the past. However, I believe that the exhaustion and patience it requires answering or responding to the ignorant questions or comments has a lot to do with not talking about diabetes in public.

Crohn’s disease I don’t feel really has a feeling of shame. Most people don’t really know what it is, they’ve heard of it, but have no knowledge. But, in order to really talk about it, you have to talk about abdominal cramping, diarrhea, fatigue and bowels. Cramping CAN come up in conversation…usually between women; even then it’s not 100% socially appropriate. Fatigue is commonplace I suppose, there’s no strings attached really. Though, I’m fairly certain that people who have never suffered from fatigue can only just begin to understand the exhaustion experienced. Now we’re left with the topics of diarrhea and bowels. Maybe it’s just me, since I’m a newbie, but I’m not 100% comfortable writing about or conversing about either. My family doesn’t really like to hear about it, I’m fairly certain if they don’t others probably don’t either. If I don’t talk about it with my doctor then I can’t really tell them what’s going on with my body. And if I don’t talk about it then I can’t change anything.
Continue reading


Lessons Learned

Things I learned on Thursday:

There are a large percentage of people who believe it’s acceptable to text while having sex. Texting while sexting! (This was on my co-worker’s, who’s not really a co-worker because I don’t really work there, news radio station this afternoon. I didn’t hear, but she told me. We briefly discussed imagining how this was possible and quickly decided we didn’t need to think about it)

The difference between midgets and dwarfs. (Thanks to Ashley. I know one has proportionate limbs & head…I think midgets. The other has smaller limbs, and I think that’s dwarfism)

I really really should not watch infomercials while I’m on IV pain medication (I managed to order some skin care stuff while I was in the hospital in ID…and they’ve JUST charged my card for refills. I didn’t want refills and really shouldn’t have gotten the first shipment to begin with! NO more infomercial purchases! It was my first, and hopefully last)

Apparently macaroons can help with diarrhea. (This was on Facebook, from a Crohn’s group. It got me started thinking…) Continue reading


Identity Crisis

It’s a little bit strange, but I think it’s really happening. I’m not sure I ever really thought I’d have an identity crisis. And especially not one about a disease! Not that I know what you’d usually struggle with when you’re having an identity crisis.

Even so, as a diabetic what do we always say:
- I HAVE diabetes, I’m not diabetes.
- Diabetes doesn’t control me.
- I’m more than just diabetes.
- Or any number of “diabetes isn’t all of me” sayings

Taking that to mind I’m a little disappointed in myself.

Am I a T1 Diabetic with Crohn’s Disease? Am I Crohn’s Disease-d with T1 Diabetes? Or am I Ashley with a seriously screwed up and confused immune system and thus have Crohn’s Disease and Type 1 Diabetes? Continue reading


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