Friday, January 16, 2009

Low Cortisol in Women with FM

Can't really say this is a surprise! (At this point, I get stressed out over nothing...and that is so not me.)

Urinary Cortisol Levels in FM
Friday, January 16, 2009

FMOnline vol. 9, no. 1

A study recently published in BMC Research Notes looked at levels of urinary cortisol in women with fibromyalgia, hoping to prove that the lack of strength or vigor in people with fibromyalgia is associated with below-normal levels of urinary cortisol, expressing a deficit of the hypothalamic-pituitary-adrenal axis. Comparing urinary cortisol levels of 47 women with FM, aged 29 to 64 years, with levels in 58 women of comparable age who do not have FM, the researchers confirmed that women with FM have significantly lower urinary cortisol levels than women who do not have fibromyalgia.

FDA Gives Milnacipran Green Light for Fibromyalgia Treatment

Interested in seeing how this works on real people. Not that I could probably afford it anyhow, since my insurance has a brand name drug deductible of $500...What are your thoughts?

FDA Gives Milnacipran Green Light for Fibromyalgia Treatment – Third to Be Approved, After Lyrica and Cymbalta
January 15, 2009

The drug milnacipran (to be marketed under the brand name Savella™) received FDA approval as a prescription treatment for symptoms of fibromyalgia (FM) on January 14, 2009 – and reportedly will be available in U.S. pharmacies by March.

Milnacipran – a selective serotonin and norepinephrine dual reuptake inhibitor (SSNRI) developed as an antidepressant – has been tested in multiple trials for ability to demonstrate concurrent improvement in FM pain, physical function, and overall impression of change (global assessment).

Trials Measured “Global” Symptom Status
Generally, more trial subjects taking milnacipran than subjects taking placebo reported “at least a 30% reduction in pain from baseline and also rated themselves as ‘very much improved’ or ‘much improved’ in the global assessment,” according to a release by the drug’s developer, Cypress Bioscience (San Diego), and Forest Labs (New York), which owns the rights to milnacipran in the U.S. and Canada.

Milnacipran “is the only product approved for the management of fibromyalgia that used this complete responder analysis as its primary endpoint,” observes Cypress Bioscience CEO Jay D. Kranzler, MD, PhD.

“The introduction of Savella is important because it is the first drug approved to treat the symptoms of fibromyalgia using a composite responder analysis,” notes fibromyalgia pain specialist and researcher Dr. Daniel Clauw, Professor of Anesthesiology and Medicine (Rheumatology) at the University of Michigan, Ann Arbor.

May Address “Abnormalities in Certain Brain Neurotransmitters”
“Although the exact mechanism by which Savella improves the symptoms of Fibromyalgia is unknown, some researchers believe that abnormalities in certain brain neurotransmitters may be central to fibromyalgia," the news release states. "Savella blocks the reuptake of both norepinephrine and serotonin, with greater selectivity for the inhibition of norepinephrine reuptake in vitro. This may be the mechanism by which Savella acts to improve the symptoms of fibromyalgia.”

As with all potent drugs, milnacipran is not without potential side effects and contra-indications, as detailed in the Cypress Bioscience/Forest Labs news release under “Important Safety Information.”


Thursday, January 15, 2009

Ixnay on the Endometriosisnay

Got back test results from my visit to the doctor the other day. Turns out, I have a raging UTI. THAT'S what all that pain was about. Yay!
I thought it was odd that the Neurontin, which worked so amazingly last month, had no effect this month.

I also have no cavities. Contrary to my brother's girlfriend's dire prediction that I had a cavity that needed a root canal, the sensitivity is due to some dentin wearing away, and if I don't stop it, it will be a cavity. I've already switched to a toothpaste for sensitive teeth with fluoride though, so that should help, and I'm going to be more diligent about keeping my mouth moist. It dries up from some of the meds,common thing w/FM, used to constantly suck on Halls Breezers, but then discovered there's sugar in there...switched Xylitol mints (have TMJ so can't chew gum) but kept running out, so I bought myself a ton of them...

Had other tests come back not so conclusive, meaning further exams, but I won't get into that unless I need to. The whole cross that bridge when/if you come to it deal. I had a good day darnit, and I'm going to keep it that way.
I'm so tired, but it feels good. It's "normal people tired". Like, I had a full day and got a ton done and I'm drowsy and ready for bed tired. How often does THAT happen?
(In case you're new, not often. Usually it's more like, so exhausted I can hardly breathe but I can't relax much less sleep for the life of me. So this is a sweet deal.)

Off I go...

Endometriosis makes a comeback...

Ahh. So about two posts ago, I was wondering about what it would be like to be in really bad pain that didn't go away. I got the best glimpse of that I've had in awhile today.

I'd gotten my Neurontin filled, because I remembered how bad and unrelenting the cramping was last month, and it having occurred to me that maybe it was the pain amplification of FM making it hurt so bad, and my blood pressure being above normal (high) for about the first time I know of from the pain(usually too LOW) I decided to try some Neurontin. (My other painkillers were not doing the trick, and I figured if my blood pressure was that high, I wasn't being a baby, it really WAS that bad.)
And it worked, like magic. After constant dull nagging pain for 24 hours, it was like something went still, and I realized I was relaxing because I had no more pain!

So today I had to drive an hour to go to court over a ridiculous issue with a ticket.
Moderate pain all the way there. But once I got there...The Neurontin didn't work this time. I was contemplating how bad it was going to get and if it did get worse, which hospital would take me, since I have ER bills at about every hospital in that town. But I'd been waiting 4 months for that court date,driven all the way out there in pain, and I didn't know what would happen if I didn't appear...So I took one of every painkiller I had (which I've never done before, but desperate times...) and finally it let up, right about the time I was thinking I couldn't take any more.

Guess it's time to get back on the Nattokinase & Indole-3-carbinole...whether caused by a virus, or just another weird consequence of FM/CFS (I read that as high as 50% of women with these illnesses have Endometriosis as well) it's back, it hurts, and I have to stop it. My first surgery for it sucked, I don't want to do that again, or deal with the symptoms that made me have to get it. (Nausea, hot flashes, insanely bloated stomach, pain so bad I had to take Vicodin 24/7...I would actually wake up at 5-6am from the pain because the meds had worn off!I never get up that early! Go to bed,maybe but no wake UP!) Or these hellish periods. I have enough bad days.

On the up side, I was feeling a little loaded by the time I had to get to court. That thought does give me a little perverse joy (though it was pretty justifiable I think) especially after the judge being a jerk. Not that I condone that for myself or anyone, I hardly ever take heavy duty meds like that, or go out in public on them, but I had to be there...By the time I was called up, I was feeling okay. Up until the part where he ordered me to pay $583 bail (on a fix-it ticket I sent in on time that THEY lost) and come back for a trial in JUNE. (I thought he said January though.) Then I burst into tears. I'm just so tired of being made to jump through hoops by one branch of government or another...

Well, here's hoping the pain stays at bay long enough for me to get some sleep, so tired...and wishing I had a lawyer!Then I wouldn't even have to go probably. Screw judges.

Sleepydust Video

I guess I'd sent this to my cousin awhile back. The memory of doing it is lost in the fog, but she e-mailed me today, saying she saw it, and had no idea I was going through all that. The greatest thing she said though, was that she loved me.
That says everything. I really think it's impossible for most people (w/o FM/CFS) to understand just what I've been dealing with...Even I have to admit, that I would look at my MySpace & Facebook pictures, my smiling face and all the mischief, and think, well, she can't really by all that sick. What those pictures don't say is how I felt the next day or days, or that some of them are a year old, or that it was months before I went out with my friends and had a day as fun as the ones in those pictures again, that I retreated back into my cave guilty for having used all that energy for fun, or was too busy trying to get from day to day and survive, keep a roof over my head, to risk wearing myself out by going to a get-together or a party.
Or they don't realize at holiday get togethers, just how much it takes to put myself together so well,don't know how exhausting it was to do my hair, they forget about the makeup, don't know I bought my dress on sale for $7 or that my tights have runs, my 4 year old boots had to be carefully polished to hide the scuff marks & wear & tear,or that their tiny heels, worn for just a little while, had me limping the next day, and the inside of my cute purse is falling apart, all because I can't work a normal job, no matter how I long to, but I go through all the trouble because it makes me happy to look pretty every now & then.

So while I can hardly expect people to understand, that just makes me extra grateful when anyone catches a glimpse of it, and says those three words that mean everything, because sometimes it gets even tough to love yourself when you seem to be losing everything, and no matter how you rack your brain you can't find a way to fix it because your body won't allow it, so to know that someone you admire and hold very dear still loves you no matter what, that is a true gift :)

Here's the Sleepydust vid...if I posted it already, oops!

Friday, January 9, 2009

What a week! SOME good news though...

This has been one of my toughest weeks. Besides some very stressful goings on, I've had the worst flares I can remember in years, that is, that I didn't cause by doing something stupid. (Namely, going to a concert, and deciding to take horseback riding lessons, both of which had me laid up for a few days each.)Okay, well it wasn't completely not my fault...

Yup folks, this time, I had the gall to try and pick up a box of cat litter, and lift my own laundry basket into the cart to take it to the laundry room. Growing up with the whole attitude of "if any boy can do it, so can I" and having been a long-distance runner as a teen, & bench pressed more than my own weight in high school, I still feel slightly defensive asking for help with stuff like that. No matter what, there's always a voice in the back of my mind whispering "Sissy! Wimp! Girly-girl!" Ah, just another one of the many internal conflicts that come with Fibro for me. Intellectually, I know I need the help, and it's okay to ask, but deep down, I still feel like I'm being a baby.

Still, this week, there wasn't really any way around it. I had the store person put it in the cart for me, had someone help me to my car...but I wasn't speaking to the one person who could help. So that's what I get.

Hopefully, going to the gym will help strengthen my muscles a bit more. I just hate that it takes so long! You have to be sooo careful and take it so easy exercising with Fibro. Far from the no pain no gain attitude I learned as a kid (hmm... now I'm wondering if maybe I was in more pain than everyone else during track tryouts, lol! Different theories on how FM works. Some say it's triggered, some say it was always there...I did seem to have more than my share of growing pains...)
The only solution seems to be to keep at it always, but with all the upheaval in my life the last few years (sometimes I just don't have the energy...or I've got too much on my plate to risk overdoing it at the gym and not being able to take care of other business) coupled with flares where it's just not feasible (yeah, not going to the gym with heart palpitations, dizziness, & orthostatic hypotension, lol) that's been nearly impossible.

Still, I'm hoping this year will become the year when I will truly, finally, just be able to concentrate on taking care of myself.

Oh, the good news? I got the Ashwagandha, and it I could tell the difference in my ability to handle stress almost immediately, I knew it was diminished, but I hadn't fathomed just how much it was hampering me, how much overwhelm it was causing and how much that was slowing me down, so that's great. (Curious what my cortisol levels are like these days. They were on the low side almost two years ago...and these have been the two most stressful years of my life!)

Second, I just got the form back from my doctor which will allow me to get reduced rates for electricity! I can't wait to see just how much of a difference that makes, because the cold really kills my muscles, pain I can control so easily is one more stressor I could do without! (Hardly seems to matter how I bundle up, it's like my body senses the cold beyond the layers somehow, and I can feel the sting way deep inside my muscles. Ow.)
I've been feeling bad about running up the bill, but darnit, this is America. We don't go without heat or cooling just because it costs money. I mean, that's why we have it, so we won't BE cold. Or hot.
(That was one of my biggest shocks in visiting South America. I couldn't even fathom how someone would build a beautiful, custom built house and not install central heating in a place where it rains nearly every single day in December, and the temps are in the 40s...What can I say? Spoiled I guess. Maybe I could've handled it more gracefully if it didn't get me sick and keep me in constant pain? Or I'd at least had painkillers.Thank gawd for thermal waters. Dying to find some here!)

Oh. One more good thing. Finally going to be able to send for a 3 months supply of my anti-viral medicine from Hong Kong. Maybe it'll last longer, actually, since the doc had me cut back because I was feeling like I was getting the flu every single day, actually, more like 6 months supply then! Wooo!

Oh, and I did get the flares under control had to give the painkillers more time to work, up dosage a little. Muscle relaxer that I usually take at night helped a ton too, got desperate and took it earlier. (I guess more proof than stress/tension causes pain.)I went ahead & filled my last Gabapentin (Neurontin)rx, too, because I realized the pain made my cognitive dyfunction worse anyways, so if it would help, a couple of doses of Neurontin might not be so bad. It just made me think how awful it is that there are people out there w/FM & other conditions who have no choice but to take it constantly...And ask myself, what I would do in that situation. I guess if you have a choice of being loopy and being in pain, and being slightly loopier and being's pretty obvious which is preferable.

Tuesday, January 6, 2009

Bad flare

I woke up emotionally drained, and by the time I'd been up for an hour I proceeded to emotionally exhausted. I also woke up with back pain. Usually, I don't wake up in pain. Well...stiff, and sore, but I don't count that. This was real, not going away even if you get out of bed & off your back back pain. I even got desperate and slathered on the hospital strength arthritis cream, but it wasn't enough.

I thought it was from all the stress, and maybe partly, but I'd forgotten that I lifted a couple of things I normally wouldn't yesterday, because there was no one around I wanted to ask for help. OUCH. Definitely was not being a wimp by asking before...Can't wait to start at the gym! It's going to be even less than I thought! I just have to go sign the papers to get started, so excited, especially about the sauna!

So anyhow, by evening the back pain had progressed to all over flare pain, especially bad in my neck. And it's so hard to get the heating pad around your neck...
But I have a secret weapon. It's very fancy. So fancy, I made it myself. A tube sock, filled with uncooked rice, some chamomile, and lavender oil, and tied off with a ribbon. Stuck it in the microwave for a minute, and voila! Nice. So warm. Sat down on my shiatsu massager.

Only it still didn't help. (Heat seems to be helping less & less lately, dunno why!)
I got so sensitive, too, the weight of the pad was hurting. But I was determined to get out, and right when I was thinking I needed to pick up some Thermacare hotpacks, I found one just sitting around. It was a different brand, can't find it right now, but I know it was way cheaper, and actually better, longer, fit around my neck & down my chest a bit, which was great because the little muscles there felt all cramped up.

It still hurt though. Finally after I got back from dropping off some books/DVDs at the library and trying to get a Thai Iced Tea to cheer me up and failing cuz I forgot my wallet (the pain was really interfering w/my thinking!) the muscle relaxer I'd taken as a last resort kicked in and I started feeling better.

Still, I need something for the stress, it's been too much. I'm to worn down. It's like my cortisol is so screwed up I go from 0 stress to 10 in an instant, and it's too much. I think I'm going to start taking this lovely herb called Ashwagandha again, even though it seemed to flare up the Endo problems. I first read about this herb, while doing a search for herbal treatments for FM & CFS a couple of years back. It is really amazing. I totally noticed how things that had formerly gotten me all stressed out, well, I'd feel the stress start to go up, but it would quickly hit a wall and peter back down to normal, such a relief.

The article I'd read said that people w/CFS should take that, and Kava Kava, and avoid stress at all costs for 4-6 months. Even if that were possible, dunno if it would work, but the Ashwagandha helped. (It's an adaptogenic herb, goes where your body needs it most, helps control stress/cortisol levels, gives energy while calming. Probably wouldn't have made it through my last "real" job without it.)

So here's a link to an article about it in case any of you are interested:



Ashwagandha root, also known as winter cherry or Indian ginseng, is an important herb from the Ayurvedic or Indian system of medicine. Ashwagandha has been traditionally used for the treatment of debility, emaciation, impotence, and premature aging.(7) This dietary supplement is used to enhance mental and physical performance, improve learning ability, and decrease stress and fatigue. Ashwagandha is a general tonic to be used in stressful situations, especially insomnia, overwork, nervousness, restlessness, and chronic fatigue syndrome.(8)"

Oh, and yes, I did say it's good for calming AND for energy!

More here:

Quickly reversing the progress against pain by sitting here, so I'm gonna go...

Free Stuff

Free Month Blockbuster 3 @ a Time Membership Promo Code: face1m

Just remember they track by e-mail, address, and credit card, so if you've had one before, with one of the above, you won't be able to get it using the same one. (Read between the lines, lol.)

Monday, January 5, 2009

Night at the Movies

Had a rough day emotionally, so treated myself to a night at the movies, and saw Australia. Beautiful, inspiring movie. Made me want to drive cattle through the Australian Outback. But wait, I'm a vegetarian. Okay. Maybe run off to a dangerous country and deliver humanitarian aid and kick asses of people who use systematic rape as a weapon.

Yes, I decided I'm NOT going to be sick anymore, plain and simple. I WILL go out and be the badass chick I planned on being, save the world or something. Oh wait. I try that just about every day. Hmm.

So instead I'm thinking, I'm gonna get me a timer.A loud, annoying kitchen one. I'll work for an hour, and then lie down and rest on my heating pad for 15 minutes, then do it again a couple of times. I figure if I can manage to work for 3 hours a day, things can be far more bearable.
I have no idea if it'll work, my usual thing is that I kind of randomly get on a roll, and then I go with it until I can't, think, can't take the pain anymore or am feeling too ill.

But New Year, new things...

Besides, I got a financial assistance scholarship at the YMCA. so maybe that will help build up stamina, kill more infection in the sauna. Can't wait to get started w/that. I think my calves are caving in, no lie. They hurt when I went out. Okay, so maybe it was the cold. But they ARE practically non-existent...Maybe then I can give the horseback riding lessons another try, too. Such an amazing feeling. Unfortunately, muscles are so weak, they shook just from holding the reins up, and I was in full-body pain and barely able to walk for 5 days from the jostling. Maybe it won't be so bad if I'm in better shape.

Off to walkabout in dreamland...

Sunday, January 4, 2009

Endometriosis, FM, CFS, & Other Autoimmune Illnesses

Been meaning to post it for weeks, the tab's been open in my browser so long I can't take it anymore, lol, so I hope you don't feel bombarded:

US researchers find endometriosis associated with wide range of diseases

I thought I had Endometriosis. At this point, I'm not sure because my current doctor says Enteroviruses attack the Ovaries & Testes as well, pulled up the report from the surgery I had to have some of it removed and read it to me, and it actually seemed like it they weren't positive what it was.

On the other hand, no one seems to be quite sure how Endometriosis happens or what causes it seems to me it's possible it COULD be Endometriosis, and it may just turn out that Endometriosis is actually caused by an infection...

I do know for sure that it does seem to respond to hormones, becoming way better when I was taking natural progesterone, and way worse when I was taking DHEA...

About 5-HTP from Author Miryam Ehrlich Williamson

Here is an older (but interesting) article I found last night about 5-HTP, which I'm currently taking. I'd read that it's better not to take more than 50-100mg a day, but as long as you're not taking other anti-depressants maybe it is okay to go higher.

Student Financial Aid for the Disabled Links

Interesting stuff. Some of this I knew, some of this I didn't.

Like, I didn't know that although schools aren't allowed to count lower than full-time class loads as full for disabled students who may not be able to realistically handle a full load, they are SUPPOSED (if I read right) to make exceptions to the Satisfactory Academic Progress guidelines if the student isn't meeting them due to illness. And here I thought they were just being nice because I wrote a really good appeal letter, lol.

Going to school when you're disabled can be really hard. It takes a lot of juggling, organizing, prioritizing, planning, and just plain staying on top of your game.
Even with help from Student Disabled Services.
Sometimes it still doesn't seem like enough.
One of the keys, as with staying employed if you can manage it, is open communication, especially with your professors.
(I got some good tips about this in Laurie Edwards' book about chronic illness in your 20s and 30s which is on my sidebar under the "Books for Coping" section.)
That was a tough one for me.
I was having a tough time admitting to myself I was disabled, and that it really wasn't my fault. It was one thing writing that appeal for the financial aid, or even going to the Student Disabled Services to ask for front of the line passes for the Financial Aid office. (Ugh, and using them. Talk about dirty looks and defensiveness.
But actually telling my professors? It's one thing to have an institution feel sorry for you, but an actual person who you'd planned on having a pretty formal relationship with and whom you perhaps respect and admire?
Since then, I've begun to get over that. Obviously I am disabled, or I wouldn't be here writing this blog.

Plus, I've had enough experiences where I have opened up to people, and had things go a lot better that I could have possibly imagined.
Most people really are good at heart, believe it or not.
And if they see potential they will help you. I haven't been up to going back to school since I realized JUST how much you can do for yourself as far as school is concerned all this, but I feel much better armed to deal with things more efficiently now.

So here are the links:

*Don't forget to get all you can out of your school's Disabled Student Services! (Different names at different schools, but they all have one.) Explain to them ALL the details of your illness, worst case scenarios, don't leave out Cognitive Dysfunction because it's not widely recognized, especially if it gives you a hard time. Examples of things I got help with or got offered are:

Carbon paper to get copies of people's notes when my hands hurt too much to write or keep up (though I only ever used it when my hand were bandaged up, was just too embarrassed by the whole "but you don't look sick" deal, silly I know but...
Extra test time, a scribe/proctor for taking an exam when I had a pinched nerve in my hand, free training & use of Speech Recognition Software & their Special Resources Lab, better parking (most places you just need a handicapped sticker, & you may not even have to pay for parking)front of the line passes for the infinite line at the Financial Aid office (my back hurts really badly after standing in one place for over 5 minutes, and my blood pressure drops, making me feel pretty ill) a special request to allow me to record lectures, and I think they had an electronic word processor or laptop I could have used to type notes (easier than writing, it's the gripping the pen and writing fast that kills me)but I would've had to return it right after, and the class was in the evening, when the place was closed, so no go.

And above all communicate with your professors. (The Special Services office usually only goes so far.)
Example: At a meeting with my Spanish Professor about my final grade last year, I found out I was just 2 points (due to attendance) short of an A...and when I told her I had some health problems and had proof that I'd been at the ER, she gave me those two points back!)

Saturday, January 3, 2009

Missing Something

Maybe someone can give me some wise, sage answers to this.

Why am I here? What's the point?
It seems like there must be some mistake.

I was the smart, determined, hard-working girl. People had great expectations of me. More importantly, I had great expectations of me. Because I knew that together, these three things would get me as far as I wanted them to, and all the uncertainty and instability of my youth would be behind me after a few years of sacrificing, of going to school and or skipping my way up the income ladder. My life would be in MY control, to make what I wanted of it. And all I really wanted was to be comfortable and secure. No fancy designer clothes or bags or shoes for me. Just to have a nice reliable car, pay my bills on time, have good credit, do some fun things every now and then, get my hair done periodically, and maybe a mani-pedi occasionally.
That was supposed to be my life. Be a good person. Try hard. Succeed.
I'm sure of it.
It would have been enough, although I'd always hoped I could do something fantastic, that would have been okay even if I didn't.

Instead, here I am with my life in a shambles, and there doesn't seem to be anything I can do about it. I can't be hard-working anymore, because either I don't last long enough at it, and if I keep trying, I get sicker. Determination has mostly kept me trying to be hard-working,or find a smart way out of it, but now it's just barely keeping me from giving up. Smart? What good is it to be able to think of things you could do if you can't do actually do them? Not that I feel very smart most of the time anyhow, since Cognitive Dysfunction drives me half insane just getting through most days, doesn't make me look very smart, or act very smart, so what's the use anymore of having an above average IQ? (If I even do anymore!)

I'm stuck with some weird illness or illnesses no one can quite seem to make up their minds about, and I can hardly believe this is really how my life is turning out.
I feel like I'm on an elevator that's malfunctioned and it starts dropping, but every now and then it slows down to a stop and it seems like I'm going to be able to get off, but as soon as the doors crack and I've dared to believe everything might be okay, it starts dropping again, and you have to get over that sick feeling in your stomach all over again. I mostly don't move anymore, but when the doors get really wide, I'm tempted to make a run for it, and down it goes again...cruel.

It's enough to make you insane, I tell you.
Ah, but it does seem to help, this, talking to everyone, or perhaps no one. I think I have one of those sardonic senses of humor. I've often been told not to be so cynical, but I'm really not clear on how cynicism is as bad a thing as some make it out to be. I do sometimes get the feeling I'm creating a smaller cage within the one I'm currently trapped in though. But there's really not much to distract me.

It's just, stuff like this is only supposed to happen to TV, right? And then if the person is courageous and perseveres they're always rewarded with a happy ending, right? Except the story wouldn't be worth watching if it didn't happen in real life. And real life doesn't always have happy endings. They just don't show that on TV because then no one would watch, so people think you're awful for pointing out that there is no happy ending in sight...because they're convinced from all that darned TV
that there is one and you're just not seeing it, lol.

This whole being sick and life falling apart and nothing you can do about it, well, I think it just makes me plain un-American. Must be doing something wrong if you can't find the American Dream in America, no?

Okay, now I'm almost starting to amuse myself.
The nighttime meds seem to be kicking in. I feel much less angst-ridden now.

Another Day

Optimism, schmoptimism.
I just hope the weekend's over soon before I shoot my ears out from having to listen to my Dad chat up his Internet girlfriends that he made on the computer I hooked up for him.I tried to explain to him that this being how he cheated on my mother, it tends to bother me a bit, and I've received numerous apologies and assurances that I won't have to listen to the bullcrap, but I'm still hearing it all loud and clear, whether I want to or not.
Most of the time, he won't even do me the courtesy of closing his bedroom door.

Then on Monday, I can sit here at home waiting for him to bring back my car, perhaps on time for an appointment, perhaps not. (He's been using it since he got his repo'd.)I used up most of 3 weeks worth of good days trying to get to one appointment last month.

I keep trying to tell myself I should be grateful for having any help at all, but the pricetag it all comes with makes me sometimes think maybe being homeless wouldn't be so bad. I'm cute. Some guy would let me crash on his couch.

No, I don't feel trapped. Living with irresponsible children disguised as parents is fun. We still don't have a dining room (or any) table, or blinds, either.

Friday, January 2, 2009

The Evil of Heels, 48-hour Backlash, on Painkillers, and Financial Frustrations

Happy New Year everyone!

I somehow managed to get out to celebrate a bit. I got superstitious after feeling too sick last year, and having the year from HELL. (Had to give up my apartment, moved in with a bitchy roommate, barely made it through school, had to move to a Sr. Community an hour away from the life I'd so painstakingly begun to form, and lost another appeal with the SSA for Disability Insurance. And that was just the major stuff.)

So I did get out this year, though I almost felt too ill at the last minute, but that was because my allergies were acting up. (Definitely allergic to dogs now too, as it turns out. Another consequence of CFS whacking out my immune system.)
I had a pretty good time, especially after the alcohol kicked in. For some reason, alcohol relaxes my muscles, numbs any pain completely, and gives me a ton of energy, all of which makes me very happy while it lasts. It's the next day that it usually kills me. I don't get a hangover, at least not like normal people.
Most of the damage seems to come from the fact that I don't feel the pain. So whereas if I had been sober, I wouldn't have been able to stand even standing in my inch & a half heels for long (I actually did have to sit down after about 5 minutes because my legs were getting shaky and hurting.) After a drink or two, none of that matters. I even had the gall to DANCE a bit in them. (How can you not have dancing at a holiday party?)
Now, I thought by some miracle, I'd escaped the consequences of my actions when I woke up feeling just a little sore today. (For some reason the worst pain of all comes the 2nd day after the offending activity, whether it be pushing a little too hard at the gym, dancing, or slipping & falling.) But by this evening I was feeling like I'd been hit by a truck.
But thank goodness for pain medicine. Until this past year, I hardly ever took it when I didn't have something absolutely pressing to do, usually if I was at home, I'd do everything else possible. But right now, my mood is a little precarious, and the hellishness of a severe flare can push me over to THE DARK SIDE.
Besides. One of the biggest reasons for my enduring the pain was the little voices in my head of people who did not approve of my taking pain medication. Usually people who couldn't take it themselves for one reason or another. (Their body's intolerance to it, or former addiction.)
I've learned to trust myself though, and especially as my pain levels have steadily increased w/the lack of access to chiropractic & other alternative care, I don't need to listen to those little voices anymore because they just don't make sense, and I don't need to justify myself to them.

I knew I'd made the right decision when I found myself making dinner instead of desperately wiggling on my massage chair trying to get all the bad spots and overheating myself to misery on my heating pad, and found my mood lifting back up as I no longer felt the mood crushing effects of my connective tissue burning and aching.

(I'd also carried a heavy backpack to my car, against my better judgment, so my whole upper body was aching too.)

And a good thing, too, because I soon found out that apparently my car insurance has been lapsed for weeks now. It's enough to make me want to work myself into the ground if I have to, just so I have some control over things like that.
I started wondering if maybe I should've pushed harder and tried to do things even if I was feeling super sick, instead of worrying more about taking care of myself at the moment. I tell myself I'm not going back to work because my body just can't take it, I'll just end up sicker. But then stuff like this happens, and I ask myself if maybe I should do it anyhow, because the stress of not knowing if things are being handled as promised is just about as bad...

Of course, then I realize I have been doing the best I can already. It would take too little time to work myself into the ground, not enough time to really make a difference or make it worthwhile, so I better just hang in there for now...

It's okay, I'm still hanging on to my optimism.