Thursday, February 8, 2007

It can always get worse.

I wish that I could say this post is more upbeat than the last, but that would be an enormous lie, so I won't even bother. My mood is dangerously low at the moment, and I am aching with self defeating circular thoughts. I really want to be funny, but I am not even close today.

As I mentioned yesterday, I went in to have my urine checked for bad guys. To my great dismay, I produced the healthiest urine they had ever seen. A lovely light yellow (due to my 3L water consumption per day), totally clear, and not a bad guy in the bunch. Damnit. The diagnosis: Interstitial Cystitis. It's tantamount to telling me that I have dermatitis, which only means itchy skin and really doesn't tell you much of anything. I fit the profile perfectly, and now I have to find a urologist who works with women. None in tiny town, so I may have to go to the big city. Dr. G00.gle had a lot of info on the topic, but none of it is very encouraging.

Here's the treatment options. There's some weird drug they put you on for 6 months, which helps about 40% of the afflicted. An alternative is to have DMSO (dimethylsulfoxide) injected into my bladder once a week for an indefinite period. No fucking way! I use DMSO in protein extractions and other scary science protocols. I have to use the stuff in a fume hood. Thus, there is no way I am putting it anywhere near my cooter. Forget it. Or, I can have the pleasure of an electrical device inserted into my vagina to send electric current through my pelvis. Not exactly the electric wand I prefer. I prefer good vibrations, not electric shock therapy on my cooter. And then there's the diet option which eliminates things like aged cheese, coffee, tea, chocolate, citrus, cranberry (that explains why drinking cranberry juice only seemed to make things worse), tomatoes, onions, Chinese food, Mexican food, spicy food, wine, any alcohol, and even tofu. I am not sure that it will be worth going on living without these foods. In fact, I am pretty sure it's not worth it.

Then there's my stress. Stress only seems to make it worse. I think that's why it's particularly bad right now. Last night, I had a total breakdown. It's all just too much, way too much. The predominant thought in my head is that "I am bad". From my disturbed stand point, I keep thinking about what a bad person I am. How I really cause more harm than good. I am continuously hurting those I love. It doesn't matter that I don't intend to hurt anyone, because I still cause people pain. Intent is irrelevant. Husband told me last night that I need to act, not react. I completely agree with him, and even though I try to live by that, it doesn't seem to change my behavior. I am still ultimately a destructive person.

Then there's my temper. It's out of control. While I seem to manage not completely losing it and ripping off heads, I still stomp away and play scenarios over in my head until I have nothing left that's positive in me. I am enraged at Dr. Nature for leaving a message telling me that she deserves a vacation like everyone else (guess what? most of us really never get a vacation) otherwise she will burn out. Poor baby, let me squeeze out some tears for her. Never mind that my complaint had nothing to do with her taking a vacation. Then, in my meeting with dean of career services, the dean said I wasn't really employable in the p@tent la field, because my Ph.Duh degree in molecul@r biologie isn't in a hard science. WTF? So I said, you mean, I am not an engineer. He says, "Right". So now cloning genes is a soft science? News to me. Thanks a lot for your help, fuckface. Clearly a man with a degree in la and labor relations knows all about hard and soft science. The kicker is that I didn't even try to correct him or argue, I just accepted it and slinked away.

So, in all of my rage and indignant rantings, I still don't stand up for myself. Worthless, absolutely worthless.

Once again, sorry for all the misspellings, I don't really want non-regular readers to see this lovely post.

23 comments:

Not so little sister said...

((((Nicole)))) I hope you find a urologist to meet with soon. As for feeling down, well, we're all here for you. I wish there was something more I could do. I'm thinking about you though.

marlena rivers said...

hi, i can't believe i didnt find your blog til now. i also am blogging about being off meds and trying to get pregnant. i will read some of your older posts to get to know you better. hang in there. have faith. it's a very frustrating stressful time, i know... i used to get bad symptoms of urinary infections and one summer i went to a few different doctors, took all kinds of meds and they didnt figure out what it was because the tests were neg. but i was in pain. then i went to a holistic doctor who told me i had "pelvic floor dysfunction"...

serenity said...

Nothing like getting kicked when you're down, huh?

I know money is tight right now, but have you thought about acupuncture? It might help with both the bladder issues and the stress.

It's just a thought. I hope hope HOPE you are feeling better soon, and know that I'm thinking about you.

BerryBird said...

I'm sorry things are so hard. It really seems like you are getting piled on right now. You need a vacation from all this stress.

On the temper front, both of those scenarios would have infuriated me as well. Dr. Nature totally missed the point. And the Dean seems to have his head screwed on backwards. What about biotech and pharmaceuticals? Aren't they both huge industries interested in the whole p@tnt angle?

((((Nicole))))

Erin said...

I'm just offering my usual hugs and seconding Not So Little Sister on the fact that we're here for you. Hang in there.

Aurelia said...

Oh Nicole...I have no idea who you think you've let down but it certainly isn't me, I applaud you for being able to take all this BS and still deal with it.
Look, one issue at a time, ignore the Deen, a labout lahyer really knows dick about science. (I know several labout lahyers, none of which would pronounce on something they know nothing about. WTF is he smoking?) Find someone working in the field and go to lunch with them.
I'm emailing you some assvice about the IC, just don't assume they are right, and fall into a pit of despair. Diagnoses of exclusion by someone who isn't a specialist in the field always makes me slightly skeptical, from lahyers, doctors, whatever...

Dino aka Katy said...

it will get better. I do have a question. I am assuming the getting pregnant is on the back burner till this is resolved would it help to go back on some of the meds that helped you deal with the daily crap?

Jenny F. Scientist said...

(((Nicole)))

The guy's really uninformed. I know at least three people in your situation. They are highly employable (you could ask him if he remembers that whole biotech industry thing? Maybe he remembers a little company whose name begins with Genen? Or a certain genetic test for women?)

Jackie said...

Molecular biology is most certainly a hard science and is critically important for understanding what's coming down the pipe as far as drug development and the future of patenting in science goes. What's with the focus in engineering? Do you want to specifically work with nanotechnologists, microfluidicists, etc? Do those of us who still perform biochemistry have no hope of getting another patent? Oh dear!! Bah!
I'm sorry to hear about this potential IC problem. UTIs are a bitch, I used to get them constantly during a certain period of my life and it was so miserable. I hope that you can get an opinion from a decent urologist and find a suitable treatment that doesn't remove some of the joys remaining in your life. Namely all those delicious foods/beverages. I also hope that DMSO isn't necessary cuz that is indeed some nasty sh*t.
I am thinking of you. Let me know if I can do/say/help with anything.

Bumble said...

Oh Nicole, I'm sorry you're having so much sh1t in your life right now. I agree with Serenity that maybe an acupuncturist might be able to help with the UTI and definately the stress. I hope you feel better soon (((bighugs)))

Julia S said...

I am so sorry you are going through such a painful and stressful time.

You have my sympathy and best wishes.

Barbara said...

Nicole - Don't let it get worse. Stay the course, small steady improvements are the key.

sara said...

Don't pharm companies need patent lawyers to help them patent things they create by twisting molecules one way vs. the other, or isolating compounds they find in the last vestiges of the rainforest? Sheesh!

I also wondered the same thing - if treatment of the cystistis is going to take so long, would it be worth it to go back on meds for the duration of the treatment? Or was the weaning/withdrawal too much of a PITA to do again?

Cibele said...

Hi Nicole, I have good news for you! Interstitial Cystitis is not that big of deal as Dr. google told you. Right after I got married I got the same diagnosis, it hurts like hell, I know. To be honest the diagnostic exam hurt more than anything I can remember in life , but I was treated with Triptanol(amitriptyline hydrochloride for one month , which you may know is used as a is a potent antidrepressant but also helps with cystitis, and NEVER felt the same thing again in 6 years.
I am right there with you when it comes to life as a scientist; I can’t believe that my husband that has not even finish his B.S yet can make more than me with a PhD doing a post doc! Good luck find a job , I am sure you are very employable and worthy of lots of success and happiness!. I am going through some hard times myself but I refuse to stopping believing that better days are on the way!
Hang in there!

Sky said...

Oh Nicole, I so feel for you. UTI's are the absolute bitch. I used to get them every month and they are the worst physical pain I have every had. After having them monthly, with the following steps I had a year free from them, and then in the last 6 months I've only had 2 (baby-making sex frequently at ovulation time was the trigger). Use or ignore any of the following, as it seems good to you, sorry for long post.

Drink at least 2 litres of water every day, even when you don't have a UTI (you probably are already doing this) - best advice I got was to build in the water drinking as a habit, not something I have to remember to do, so now I drink water on my bus journeys in and out of work.

Tea seemed to irritate my bladder (didn't drink coffee) so I cut it out for a while and even now I limit it to 4/5 cups a day max. Nothing else seemed to irritate it in the same way, your trigger(s) may be different but only you will know.

Before sex, drink a glass of water. This way, when you pee after sex there will be a good stream to flush out any bugs, rather than just a few drops.Experiment with different amounts until you know what works for you.

After sex, pour water over your girl parts. No soap, no scrubbing, nothing complicated, just a quick pour of water from a bottle.With this step and the one above I've managed to avoid UTIs even while having sex every night during the ovulation period.

I always get UTIs a week before my period (maybe a hormonal thing??). Track the dates of your UTIs and see if there is a similar pattern and if there is, avoid your triggers around danger time.
No cranberry. Didn't work for me and just made me throw up.
Probiotic yoghurts - I figured I'd help the good bugs out and they'd be better able to fight the bad UTI bugs. One a day seemed to help.

The biggest weapon in the battle was D-Mannose. It's a natural sugar which attaches to the bugs and flushes it out. I found it after doing some web research and finding that paraplegics use it to treat and prevent UTIs. They are often very prone to UTIs. I was sceptical but tried it, and for me, it works far better and far faster than antibiotics. I get it from www.waterfall-d-mannose.com
I would normally NEVER recommend buying any kind of medication off the net and I know it was a huge risk, but it was the only place I could get it. Your doctor may be able to source it for you, and as a scientist, you are well able to read and make up your own mind.I'm only listing it here because its the only thing I've found that really, really works. If you can source it, and are happy to, maybe try it for a month (clear the infection and then take a maintenance dose for the rest of the month) and see how you are.Even though it says its pregnancy safe, I personally still don't take it during pregnancy - that is the only time I'd avoid it.

Sorry for such a long post and all the assvice. When you are so ill with a UTI you are going to feel like crap about everything else. I hope you feel better soon.

theoneliner said...

man, i'm sorry you're in such a bad place.
good grief..how miuch can one person be expected to stomach.
we're all for you. email us if you need to....
i'm sending lots of warm wishes your way.

Mary Stebbins Taitt said...

Boy! What a BUMMER!!!! WAHN!!!

It all sounds too familiar too--not the exact problem, but the mood things, the anger and stress--it's biochemical, I'm sure.

It's not YOU! That the real you inside, but the lashing out of chemicals.

T'ai Chi helps. Hugs help.

((((((HUGS)))))))
((((((Nicole))))))

How about Reiki? ~~~~~~~~~~

Sending some Reiki healing your way ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

:-) :-) :-) and smiles

OH, and PS, you may use any of my photos as a wall paper or for any other personal use. XOXOX

Sarah said...

I hate it when I don't stand up for myself or just agree with others even though I know I have a valid point. Don't be too hard on yourself... just try to stick up for yourself once in awhile a little more than is comfortable and maybe over time it will get easier. I think it becomes a pattern that is hard to break out of. And it isn't any easier when you are dealing with depression or other medical issues. hang in there...

Aurelia said...

Heeeey?

Are you there? I'm sure you have load of studying, but please email someone or post something to say your mood has lifted. Even a touch?

Depressionista said...

I am so sorry about the cystitis diagnosis, and all the rest of the bad news lately. I have so totally been where you are, especially relating to the anger issues and the "I am bad" thoughts. It might sound kooky, but I'm getting some help in a MAJOR way from my therapist who practices from a Sufi perspective. Just thought I'd throw that out there. This will be my last "advicey" sentence, but have you talked to your psych lately to see if there are some safer antidepressants you can take right now?

Sometimes it seems like bad things have some kind of magnetic ability to draw other bad things, and before you know it there's just too much to handle. I hope you can get some physical relief soon because I know how much that screws with how you feel mentally too.

Hang in there, wish I could do more!

BerryBird said...

I just realized I didn't say anything about the DMSO. I had to use it on occasion back in the chromatography lab, and you are right, that stuff is nasty. We used to have to run so many blanks through the GCs after running samples desorbed in DMSO. Even with the temperature programs set to bake out at 260 degrees, it took forever to get it out of the columns. One of my least favorite solvents ever! I wouldn't want it anywhere near me either.

Amateur Dancer said...

hey nicole,

i am sorry that you are getting disappointing news...i know that this SUCKS...

you are not a bad person, nicole. for some reason, bad things happen--to everyone. but, by that same logic...SO DO REALLY GOOD THINGS!

so you hang in there, because your GOOD THING, your REALLY GOOD THING is just around the corner!

i am thinking of you!
dancer

Jill Osborne said...

IC is essentially "injury" to the bladder. The bladder wall/lining is damaged and urine then reaches into the deeper tissues where it can be very irritated. The great news is that is completely treatable with several medications and/or some over the counter supplements developed by major IC researchers. But, equally important is an immediate change in diet so that you're not accidentally making it worse. Even one soda or cup of coffee a day can prevent healing... and HEALING does happen. It just takes some time.

Come check out our big IC support website at: http://www.ic-network.com.

You can find the basic diet info at: http://www.ic-network.com/handbook/diet.html

And, you'll also find two support message boards for patients trying to get pregnant and/or are pregnant in our support forum at: http://www.ic-network.com/forum/

Carry hope in your heart. It's time to read up on IC and then get crackin on self help and, if needed, treatments. With any luck, you might be one of those patients who with a simple diet modification, may have your symptoms completely resolve!

Jill O
IC Support Group Leader & ICN Founder