feeling a little crazy

i've been offline for quite a while because i just haven't felt up to doing anything at all for the past few weeks. i can't seem to get the dosages right for my meds - growth hormone, thyroid, and cortisone. it's the cortisone that seems to give me the most trouble.... if i take a high dose, i feel better mentally but my body swells up and my muscles seem to just waste away to nothing. it's difficult to even walk and forget about walking upstairs. hot flashes come fast and furious and generally wear me out. too much cortisone also makes me emotionally unstable... i'll cry over anything at all.

if i don't take enough cortisone, i feel so incredibly weak, fatigued, and close to death. every time i stand up, i feel ready to collapse. i don't want to eat and my stomach cramps. i'll get diarrhea and nausea. i cannot even walk to the kitchen which makes things worse because i get weaker from not eating. it's generally when i feel like this that i end up at the emergency room because i really feel like i'm going to die.

and, on top of all this, i can't seem to get my pulse rate below 100! most times it's in the 120-134 range and this worries me. why doesn't it worry my doctors? my blood pressure also varies between really high to really low.

i have no idea why it's so hard to get my conditions under control. yeah, i'm going to make another appointment with my endo but i'm beginning to get the feeling that he thinks i complain too much. damn it! i hate when doctors make you feel that way! it's their job to help me feel better and, if i'm not feeling better, then they are not doing their job!

all this makes me think about dying. not necessarily suicidal thoughts, but general thoughts about when it's time to go. when is it the right time to let go? how the heck do you let go?? some days i'm just so ready to take one last breath and let go, but it doesn't happen. i guess it's just not my time yet. for those folks who have commended me for fighting so hard, believe me... i'm not fighting - just existing. it's totally just one day at a time. some days it's more like "get through the day and then try to sleep to get through the night." i don't sleep well at all and i know that's part of my mental decompensating.

i don't mention any of this to be whiny or morbid... i mention it because these are the things that go through your mind when you're chronically ill and you have lots of time to think about your condition. i also think about all the things i want to to when i get well but i'm wondering if that day will ever come. when our old dog's health was on the wane a number of years ago, my hubby and i would say "as long as she's wagging her tail" we'd let her live. well. i'm not wagging my tail right now.

i miss so many things: being able to walk in the woods, go into town (any town) to leisurely shop, visit friends, go to a party and get crazy... lots of normal things are out of my range right now. in fact, my main form of entertainment is watching the dust bunnies grow under a certain table in the living room. you'd be amazed how much dust can layer up in 8 months. it gets really lonely up here on my hillside and no one ever visits. i wonder if people think of me. i feel as if i don't really exist anymore.

i really, really, really miss my independence. i have to ask wonder hubby to do practically everything for me. i need help to do things in the bathroom, kitchen, and bedroom. he works on his computer all day long and i hate to interrupt his work. on the other hand, i get angry that nothing ever seems to get done.

phhhhhtttt. oh, just forget all this shyt. being chronically ill is the pits and i'll stop complaining right now.

under the weather

that's all i have to say today. don't know why. don't know how i got to feeling this way. the only thing left to do is to stay in bed and hope the feeling passes. soon.
hugs,
maudy

Aggression

when the stress is too much and you've absolutely, positively got to kill something, give these industrial shredding videos a gander... http://www.ssiworld.com/watch/watch-en.htm

there is something immensely satisfying about watching a boat, a refrigerator, a truck tire, or a vw bug being easily eaten in less than 15 seconds. nothing passive aggressive about it.

enjoy!
maudy

no, not twiggy

when i was younger, i thought twiggy was the most beautiful girl in the world. no, i didn't starve myself to be stick-thin like she was (altho i was amazingly thin back then) but i did copy her style and spent hours drawing in tiny black eyelashes with eyeliner. nowadays, thanks to massive doses of hydrocortisone (alas, a medical necessity for me now), i resemble mrs tiggywinkle more than i resemble twiggy. i am very round. the doctors call it "cushinoid" (i don't wanna describe it, so google it yourselves), but i think of myself as a human marshmallow. perhaps i'll look better toasted? summer is coming. i'm just sayin ...

this huge change in my appearance had definitely changed my attitude towards appearances in general. i have lost almost all traces of vanity (and i consider that a good thing). given that i can spend days in the same clothes (t-shirt and sweatpants), unwashed, with hair like a scarecrow, i don't spend a lot of time in front of the mirror. when i do venture out in public, i find that people do stare and that unnerves me a little. i mean - why are they staring? what are they staring at? i'm not monstrous. i'm not obese. i don't have purple stripes on my face. wtf??? i'm getting braver, tho and am beginning to pointedly stare back and smile. better to unnerve them for being so rude. i've decided that i really wouldn't like to be famous because i'd probably go postal on people staring at me all the time.

talking about being famous... i was in phoenix airport many, many years ago, sitting in the gate area, waiting for a flight with my youngest sister. i glanced around at the hoards of people in the gate area and noticed this guy nearby wearing bib overalls like train engineers used to wear - unusual to say the least. he even had the blue and white striped hat on. he looked up and i recognized him - it was bill cosby. we locked eyes for a few moments and the i smiled and simply nodded as a way of saying hello. i think he appreciated me not jumping up and shouting. "it's bill cosby!!!" i didn't want to create a scene and i didn't want everyone in the gate area to see him and bother him for autographs. i gave myself a mental pat on the back for giving the guy a break from being famous.

however... i did want my sister to see him but i didn't know how to bring him to her attention without pointing and i couldn't just come right out and tell her because he was close enough to hear what i was saying. i tried writing her a note and passing it to her but, for some unremembered reason, that didn't work. cosby kept looking at me like he knew what i was trying to do and he thought it was funny. i felt we had a private joke happening.

eventually someone else in the gate area noticed him before i could tell my sister. an obnoxious woman shouted his name and the area erupted in chaos. within seconds people were taking pictures, asking for autographs, and generally being pests. cosby was great, tho. he took it all in stride and seemed to accept that this was the price of fame. in the midst of all the commotion, he looked over at me and winked - i think it was to say thanks for not doing what all these others were doing.

so, when i drag myself into the village and people stare, i try to remember that it could be worse. i like toasted marshmallows anyway.

peace and hugs,
maudy

AFP's Eyebrows

here's looking at you, kid....

i've decided that eyebrows are the last frontier for female beauty enhancements and amanda f*cking palmer does it best. hmmmm. should i stay with light blond coloring for myself or should i go psychedelic pink? (of course i'm always ready to put pink streaks back in my hair.)

note to self: when drawing in artistic eyebrows, remember to use permanent ink. otherwise the look might be worse than runny mascara in the rain. ;-)

smile often!
maudy

Thank You!

this is just a little note to say THANK YOU to my husband for all his wonderful, unselfish, unconditional support. i know my illnesses wear him out as well and he does such a great job - and he hardly ever complains! (at least not to me, anyway....)

thank you to all my friends for their care and understanding, too. i promise i'll be bothering you all too soon!

love and hugs to all!
maudy

Amnesia Time

today was a total waste... i downed a tab of ambien last night and woke up this morning with total amnesia. too freakin weird! i don't remember turning off the tv, climbing the stairs to bed, changing my clothes - nothing. it was a total shock when i woke up. i had that disconcerting feeling of not knowing where i was. hubby said i was shouting and mumbling much weirdness as well. i've spent the day with a sleep hangover; not doing anything at all. i think i'll lay off the hard stuff for a while....

Surf the Web While Flying???

A U.S. Department of Transportation audit found a high risk of cyberattacks on U.S. air traffic control systems because those systems link to insecure Web applications used by aviation authorities across the nation. Penetration testers found 763 high-risk vulnerabilities in 70 Web applications for a range of aviation functions, including those that distribute communications frequencies for pilots.

damn! and i just wanted to log on and rock out to forget the fact that i got on a plane with a low-paid, inexperienced pilot, am strapped into a seat that wouldn't save a rat's ass, served tepid water by a harridan who looks (and sounds) like my third-grade teacher, and have to smell my seatmate's farts for the next three hours because the a/c in the cabin is on the fritz. now i gotta worry about whether or not the plane is sending phishmail and malware to the unwary below us????

Not a Bad Day

this is day 3 of me on human growth hormone... just in case you were interested.

got out today and actually went into cooperstown fer a while. didn't scare too many of the locals (or tourists) who saw me waddling down the street - walking cane in hand, my face incredibly fat and puffy (not to mention RED), with sweat dripping from the tips of my hair to my chest an shoulders like a yard sprinkler. i'm learning that wearing black disguises multiple sins but i've got a whole lot of sins going on at the moment. i'm also learning not to be embarrassed. soon i'll even be looking people in the face and saying "hello" again.

got good news from the hematologist today, too. my ferritin level has gone from around 500 to 61. my goal was to get to 50, so no complaints from this end. with any luck i may be back to my old self - sometime - if i can remember what that was like.

I'm baaaack.

Yeah. It's been a long time, I know. And, to be honest, I've spent most of the past 6 months sitting on my butt. Literally. I've been sicker longer than I ever thought possible (or that I'd put up with). Forget all those past posts about menopause and shit. We're talking serious RARE conditions here! Everything is a bit of a blur at the moment when I try to think about what I've been doing with my time but, what I do remember, is lots of time in doctors' offices, labs, hospitals, and, my living room sofa. My sofa and I are intimately acquainted now.

Just the PowerPoint view of my current state of body craziness... I'll fill in details here and there. Mostly I need this list to remind myself because my mind is riddled, warped, and wrong quite often now. Did I mention that a side effect of some of my conditions is a true lack of mental clarity? Lovely. Totally frickin loverly.

Here goes.
* Hemochromatosis - my body doesn't know what to do with extra iron in my blood, so it stores the iron in tissues, organs, glands, wherever. Of course this tends to play havoc with tissues, organs, glands, etc. Treatment is to get bled. I have 500cc of blood drawn every week to get the excess iron down. Even had a plastic access port inserted in my chest so I don't have to worry about getting poked with IV needles. Best thing I've done in a while.
* Hypothyroidism - not too uncommon. The thyroid tends to slow down in most folks when we get older. Your metabolism slows down, hair stops growing, you get tired easily. Drugs for this aren't too big a deal, but testing for what you need can get complicated.
* Adrenal Insufficiency - my adrenal glands stopped working which means my body has no way of regulating its reaction to stress. Found this out the hard way when I collapsed in the doctor's office (lucky it happened there!) with "adrenal crisis". Coulda been deadly. Now on cortisone for the rest of my life and trying to find the correct dose to keep me going is a HUGE struggle. A total pisser!
* Hypopituitarism - my pituitary gland is shot... probably from the hemochromatosis. This creates a number of weird and not-so-wonderful problems. The pituitary has also stopped making human growth hormone, so I have to take injections of that for the rest of my life, too.
* Hiatel Hernia - tummy aches. On top of everything else (literal pun), my stomach is pinched above my diaphram. Lots of gastric reflux which is not so wonderful when you have to take lots of pills daily. But, I'll worry about this one later. Surgery can fix it. When we have money again. Someday.

I'm off to another doctor's appointment in the morning to see how my iron levels are and to start the next round of blood letting. Updates later.
Cheerz,
Mad Maudy

Join me in song!

"Who Killed Amanda Palmer" Video Series - Part 4: Runs In The Family from Amanda Palmer on Vimeo.

I've had a whole slew of health problems and it's taken a loooong time to get them all discovered, diagnosed, and treatments started. So, when I heard this song, I flipped. The edge to Amanda's voice gives you some sense of how frustrating I've found this journey to be.

Enjoy,

Maudy