don't fear the steroids

been doing alot of thinking over the past few days about how maybe i tapered off steroids too quickly the first time around. i was so paranoid about side effects and the affect on my diabetes, as soon as I got that first remi infusion, I stopped taking the pred. Now in hindsight, i wonder if i would have enjoyed my summer more if i kept taking the pred. then again, we were hoping the remi would work all on its own, but it kinda sucks how tired and sick I was and how much I missed out. If you're gonna miss 4 months of life in NJ, you're better off doing it during the crappy winter months when everyone is a hermit anyway :)

i've been on 40 mg pred every day for a week now. it keeps me awake and i've had some big bursts of energy, but today I am so zonked out. i think i overdid it this weekend and am now paying the price. the worst symptom this round has been the night sweats. i wake up every night like someone dumped a bucket of warm water on me. at least this time i'm able to get up, change, and get back to sleep. back in may, if i woke up at 3 am, that was it, i was UP.

also, the biggest blessing of this round of pred is that all my mouth ulcers disappeared immediately. those symptoms were absolutely miserable. i changed my toothpaste, tried to avoid crunchy foods, tried a ton of nasty-tasting ora-gel and dubious health-foody natural treatments, to no avail. 1 day of pred - sores gone! nice.

part of my focus on the side effects of pred is also due to my terrible vanity. i've always struggled with my weight, and before this last flare, was doing great on a diet and had lost 30 lbs and was on track losing 1-2 lbs a week. i was getting my blood sugar stable and under control, and really enjoying all the yummy raw veggies and healthy snacks and fiber-riffic foods. that's all mostly gone out the window, and I'm so frustrated with food. now it's even more important to watch what I eat, but I am a total slacker. i know i'm flirting with moonface and acne and a hump, but dammit i want junk foods. blech, i know better, i want to be better, but I just don't do it.

the side effects of pred are scary, but largely manageable. and hopefully i don't have to worry about some of the worst ones since I'm not taking them for years and years. i guess after the last 4 months I'm more willing to risk and tolerate them in order to get the way-cool benefits, like being awake and not in the rest room. i'll probably overlap the humira and the pred for a while and maybe in a few months the next flex sig will show an improvement in the inflammation. i'm just gonna give these bad boys time to work this time.

$1000 pens

my doc prescribed me Humira pens, yay!

Aetna refuses to pay for it until Tuesday, booo!

but walgreens says I can come and pay retail for it: for 6 pens, it's only $6K... lmfao!

circus girl without a safety net

yes! today i had my conference call, and right beforehand realized i had no safety gear with me, and though I was on the phone for a solid hour, I had no problems! it went great, they were funny and loved the site. it was a happy friday.

this week has been so hard, i am sooo tired. i've gotten silly, like i'm too tired to be grouchy anymore. it's all just absurd and giggly. i can dig this.

i'm in so much pain though, i feel like someone is trying to rip my spine out, or like it's a wriggling serpent trying to escape on its own. but i guess this is better than yesterday - back pain vs abdominal pain, which one to choose? at least this one makes me get up and dance in place, instead of run down the hallway to the ladies room. yes, i have a spazzy little pain dance that i do in my cube to help shake the pain. doesn't really work for long, but it's all i've found that helps.

doc appointment is next friday, but he thinks i can start humira immediately. i should be able to get my loading dose on wednesday. they just have to check since I had remicade last week. then i get to stick myself 4 times, yippee! at least it'll be over quickly. i hear humira comes in prefilled syringes -- score! really hope this works.

so with all the drama from last week, i am no longer allowed to work from home. i need to just call out sick if i can't make it in and get docked at the end of the year. kind of a bummer, but i've just been getting worse and worse lately, this is a blessing in disguise. 4 months ago, my mind was sharp though my body was, um, occupied and anti-social. now the mind is worn out too. maybe it's just oxygen-deprived :) having the flu/cold/ninflu didn't help either, but i think i finally got over that. not coughing up as much stuff anymore. gotta go get a flu shot soon, then the swine flu shot as soon as it's ready.

it's funny, we had a meeting today because my boss is taking a trip to a city that has a few cases of swine flu floating around. there's apparently disaster recovery plans in place in case people start getting sick in our building too. everyone reassures themselves that it's not a big deal because we're all young and healthy. but i have "an underlying medical condition" *cue dramatic music* i do kinda sorta worry that the next flu/cold/infection I get will be a bit more serious, but i don't want to be nutso about it. every season we all pass around the same cold/flu/bug, especially the ones the parents catch from their kiddos. kiddos are a huge disease vector; good thing they are cute. i figure even if i got swine flu, i'm at the doctor so much that i'd get plenty of treatment and not die or anything, just be miserable for an extended amount of time. not like that's anything unusual for me, lol! oh well, time to build the bubblesuit :)



"can't hear you, i'm in my bubble!"

Leftovers

Not only is my illness "invisible," it makes me invisible. i've missed alot of fun activities, birthday parties, family events, friend nights out, sister nights out, work functions, paintball games, vacation plans, etc. If I do show up, I end up having to leave early. I'm usually asleep or in the bathroom. I felt like a ghost this summer.

I miss Chipotle, sushi, thai curry, and roti cannai.

I'm really happy if I get to switch to Humira instead of Remicade. Those 3 hr iv infusions kinda suck. And I already have a totally rad sharps container for my procrit needles.

mucus came back today. that 4 day break was nice while it lasted.

the best thing about UC is reading UC blogs by English folks - I love their manner of speaking/writing and turns of phrase. everything sounds better in a British accent.

counting blessings; weighing options

I was feeling very angry and very depressed yesterday, then I came upon this story via boingboing. then i realized things for me aren't so bad. This is a great story.

I find that so many people can overcome physical discomforts for their passion. I've become so passionless. I wish I could find that something that I would walk through fire to pursue. like my aunt J. she grew up in poverty in a trailer park, and battled her way through school to become a teacher, eventually earning her masters and gaining accolades as a top teacher in her state. she had breast cancer in her 20s, and the treatment gave her lymphoma. she also got married, raised a wonderful son, traveled, went to Gamecocks games (home and away), and never stopped pushing herself and everyone around her to be better, happier, more alive. She helped my dad when he was sick and was a reliable friend to other folks dealing with cancer. She was inspirational to her last breath, and then some. I need to cultivate my inner flame instead of feeling so burned all the time.

I've really been overly focused on all the things I've lost, or am losing, though honestly -- most of these losses are hopefully temporary. it's ok to be sad a bit, but I need to snap out of it.

UC has finally stabbed its dark claws into my career. Maybe that's why I'm so freaked. I've always been an ambitious over-achiever, and I think that what just went down has clamped a limit on my future prospects in my current career. My job means alot to me. It means alot to be to have a successful career as a woman. I could in theory support myself. And all that is endangered now because of the toll of the last 4 months.

I really believed the Remi would work, but I feel worse in some ways than I did back in May. I'm back on steroids and will probably try out Humira, but should I just jump ahead to surgery? If I do it this year, everything is covered and ready to go - deductibles and out of pocket amounts are met. If I wait and end up having to have surgery next year anyway, is it worth the wasted time trying more medical stuff that doesn't work? Or only works for a little while until I'm back here again? And why can't I still not lose weight? Or why do I still have a shitload of white blood cells and no red ones?

This is a bad combo -- being sick is expensive and then interferes with earning potential. for example, there is a real possibility that my income is about to decrease, exactly when my med bills are about to increase. I already spent like $3K this year on med crap. I wish I could've put that toward my other wishes and dreams instead. fucking colon.

a different kind of bad day

sometimes, i feel like anger is the only thing keeping me upright.

today is one of those days.

i'm just so aggravated at the way september is drifting away from me, just like the last 4 months. nothing but cancelled plans and false hopes and waiting. oh, and pain and bleeding.

i got my magic double-dose of remicade on the 16th. this was finally supposed to do the trick. i boarded the plane on the 17th, wearing a diaper out of equal parts practicality and paranoia. it ended up being unnecessary, thank goodness. i thought, maybe it worked! i would be able to enjoy my anniversary vacation with DH. nope.

halfway on the way to orlando on the 18th, my guts started churning. i had been taking anaspaz and it did nothing. i sat in the port lucie rest area for a good half hour. it was incredibly awful. i called my doc back in nj and begged for something, anything he could do. the doc on call gave me 40 mg pred to pickup at a walgreens in orlando and warned that it probably wouldn't take effect immediately. he said i could try immodium, but i knew from past experience that probably wouldn't work for me anymore either.

but we soldiered on, and i got dressed and did my makeup for the Disney Halloween night thinger we had tickets for and I had been looking forward to since my hospital stay in May. we decided to get dinner near our hotel instead of in the park in order to give my guts extra time to settle down. during the meal, i realized i would never be settled down in time. i enjoyed my crab shack munchies and surrendered to UC. You win this time, you bastard.

back in the room, i ended up passing out asleep before 10 pm. the next day we did a little walking around at this safari thing, and i got completely exhausted. good thing we had skipped disney. i spent almost the entire vacation sleeping.

i overslept sunday and missed the beach. we got back on the plane, no diaper this time, and had an uneventful drive home.

today was back at work, and i don't even feel like i went on vacation. i feel like i was just asleep on a car, then on a plane, then on a car, then on a plane. like everything else the last four months, the good times were too fleeting, and the rest of the time was either in pain or asleep.

this whole month has kinda sucked. it started with getting sick from the NIN show and being too tired to move. Then we got that fucking letter from the landlord on the friday of labor day weekend that exterminators were coming that week! they had been in my house and handled my bed linens and didn't even leave a fucking note. we came in the house and wondered who tore up our bed. then we found the letter. i had to cancel plans (working on the game for the 12th) and clean for 3 fucking days. don't forget, this whole time, my UC was crazy flaring, because i'm waiting for my magical remicade on the 16th. nobody can do shit to make me feel better. all i do is go get poked and prodded like a good little patient. a short week, then out to PA, where I still feel absolutely horrible, to go set up and run this damn game in the rain. i did the scoring in the ladies room. immodium stopped working permanently. meanwhile, the husband and the cats were holed up in a hotel waiting for the exterminators to finish my building. then they told us they were coming back! i still couldn't freaking unpack. all my clothes, everything, is packed up in boxes and stacked. now i have to pack for FL and can't find a fucking thing. I have an accident at work on monday and ruin the only pants i didn't pack. i can barely move on tuesday. i drag myself to remicade on wednesday, forget to premedicate because everything is packed, but everything goes well. except that afterward, i'm a zombie, and i pass out at home and never make it to work. i sat down at noon and woke up at 3:30. i check my email from home and realized i fucked up an important project by being sick all week. i scramble to get at least something ready, but it's not good enough. the customer is pissed, the rep is pissed, and she scolds me on email, over the phone, and writes to my manager and the director of sales. not my best day. we get home last night to another letter from the landlord, saying that they heard we had "unclean" living conditions and were going to inspect our apartment on the 21st. fuck you, landlord. i wish i could give you my toxic flu and see how clean you keep your fucking house.

if it were any one thing, i could probably deal with it, but it's too much. also, my anemia has gotten worse and i have to double up on my iron supplements and do another round of procrit. i guess the silver lining is that if this past weekend means i failed on remicade, then i'm done with those 3 hour infusions. hopefully, i can go on humira, and just stick myself every other week. good timing too - i'm out of days off for the year. i don't even have half a sick day to use to go to infusion without getting docked.

life has a strange sense of humor - guess i'm lucky this failed. if it had worked, I'd be stuck getting a few days pay taken out of my check at the end of the year. awesome.

so is the pred helping? i guess. the only real difference is that the funky orange slime has been replaced by horrendously foul black/green slime. am i still bleeding? fucked if i know.

Invisible Illness Week

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: ulcerative colitis, an inflammatory bowel disease (ibd)

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 2001

4. The biggest adjustment I’ve had to make is: taking life slower, carving out time to rest, and being less adventurous with food. also, this latest flare has had many extra-intestinal symptoms, like anemia, which made me more tired than i ever thought possible. and my drugs suppress my immune system, which makes me a bit germaphobic at times. People are just gross in public.

5. Most people assume: that I'm fine or that i'm lazy

6. The hardest part about mornings are: getting out of bed, dealing with active symptoms, having to go back home and change after finally leaving the house.

7. My favorite medical TV show is: House or Scrubs

8. A gadget I couldn’t live without is: my pill keychain that holds my anaspaz

9. The hardest part about nights are: waking up repeatedly in the middle of the night then not being able to fall back alseep

10. Each day I take 21 pills and vitamins. I also get 3 hr iv infusions every 6 weeks, and self-inject once a week. I'm just happy I don't have any more rectal meds (def one of the worst aspects of UC, its location)

11. Regarding alternative treatments I: tried many diets, would like to try yoga, but I don't have the energy or time. I have to avoid adding responsibilities to my schedule -- they just add to my anxiety

12. If I had to choose between an invisible illness or visible I would choose: visable - less guilt, shame, and running to the bathroom

13. Regarding working and career: I used to be super ambitious, now I'll probably never see a promotion, and feel lucky i have a very understanding boss. Though those were really uncomfortable conversations to have to explain my disease and why I need special accomodation.

14. People would be surprised to know: even with my nutritional deficiencies, constant vomiting and diarrhea, I still cannot lose weight, lol

15. The hardest thing to accept about my new reality has been: needing to stay away from crowds and fun festival type activities. I always need to know where the closest bathroom is. and my drugs knocked out my immune system, so I get sick very easily. Colds that a normal person would shake off knock me out for weeks. I feel like i aged 30 years in 3 months. oh, and all the super-invasive tests involved. i'd rather get poked with needles every day than get another flex sig.

16. Something I never thought I could do with my illness that I did was: nothing yet -- i went from being a mild case to pretty severe only over the last few months. I just want to stop this flare, then have a party.

17. The commercials about my illness: there aren't any. no one wants to talk about number 2 issues :)

18. Something I really miss doing since I was diagnosed is: going out dancing. eating thai food. eating sushi. being able to leave the house as planned.

19. It was really hard to have to give up: spicy and interesting food, drinking booze, staying out late. feeling confident i wouldn't embarrass myself in public

20. A new hobby I have taken up since my diagnosis is: restarted knitting

21. If I could have one day of feeling normal again I would: play a great day of paintball, eat curry, go out drinking and dancing until the sun came up.

22. My illness has taught me: to slow down, have a better sense of humor about things, appreciate the small things, ignore the assholes.

23. Want to know a secret? One thing people say that gets under my skin is: are you sure you should do that?

24. But I love it when people: laugh with me instead of at me

25. My favorite motto, scripture, quote that gets me through tough times is: pain is inevitable, misery is optional. no rain, no rainbow.

26. When someone is diagnosed I’d like to tell them: work with your doc as a team, watch out for bad advice on the internet, it's not your fault, diet is only part of the answer, don't be afraid to try remicade/biologics, only you know when/if surgery is right for you.

27. Something that has surprised me about living with an illness is: how helpful some people can be. i always have trouble asking for help, and while some folks are jerks, most are really understanding. everything is easier when you have a good story and can laugh about it later.

28. The nicest thing someone did for me when I wasn’t feeling well was: bring me slurpees!

29. I’m involved with Invisible Illness Week because: I have one.

30. The fact that you read this list makes me feel: warm and fuzzy, and wondering how many others out there might be helped by frank discussion of hidden illnesses.