Thursday, March 27, 2014

Outlasting the Crash

You'd think after 11 years I'd handle these #rises & #falls better, but I'd be lying if I told you that my depression two days ago didn't feel exactly like my depression in 2005, when I would cry myself to sleep in my shower. Isn't that funny? After all this time, and all my accomplishments, none of that matters when the symptoms take hold and send me spiraling through that same old routine.

In a way, though, it's freeing. If each time it happens it's the same no matter what's going on in my life, then it can't have anything to do with me personally! Let me say that again: if my soul-crushing depression is the same today as it was seven years ago, that means those feelings are the disease, and have nothing to do with me. I've changed a lot in the last seven years, and made amazing strides. My disease has progressed, but not in such a way to overwhelm me completely. I'm not dealing with a sudden blindness or the loss of a limb that would turn my whole world on it's head. Nothing so dramatic. So if the depression is the same, "ALL IS DOOM!!" feelings, it stands to reason the two are NOT connected!

This is why the friends who know me know to take these phases with a grain of salt, comfort me as best they can, remind me of the reality of things in a calm, non-judging way... But pretty much we all just have to wait until the storm has passed and I get to be me again. That can take days, and depending on the season, weeks. Spring and the Summer rains here are the hardest for me. When the barometer goes on a roller coaster ride, so do I. (This being Colorado, by Spring rain, I of course mean snow.)

I wish I could be a courageous leader all the time. I wish I could always rally the flag. I wish I could always be the light in the darkness for others, and not get afraid of the dark myself. (There's something moving out there!!! Oh, wait. It's me. I'm caught on the blankets.) But then of course I have to remember, I wasn't born a machine, nor was my intended purpose to be one. "I make mistakes, therefore I am..." -St. Augustine (Hippo) (Hey, if a saint can do no better, what do I expect?!)

Now that I have survived the low part of the crash, I'm starting to feel hopeful again. I have a lot of "homework" and research to do, but the Independent Living Center I'm working with now makes me feel a lot less afraid. I don't think I'm quite at the level where I can participate in the Plan to Achieve Self-Support just yet (I still have yet to meet with a kidney doctor to know what I can expect of my new diagnosis, but it's on the calendar). In the meantime, however, we may be able to find me something where I can at least afford where I'm living now, and be able to buy my food and medication at the same time! Dream big! Lol

In truth, I do still have big dreams, and I hope to accomplish those too. It's just going to take more creative thinking to accomplish that; that is, it's not as simple or easy as I first thought it was when I dreamed of this...

But then, is anything?

Wednesday, March 19, 2014

#Pushing #Limits

One week ago I set out with one goal: to safely push my limits and see how much I could accomplish with my body. I set a few ground rules: While attempting this I would baby my body. That meant lights out at sunset, and allowing myself two sleeps per night. I was eating no meat, taking my vitamins + extra potassium daily, and limiting my caffeine intake to half an energy drink per day (I like the ones with the B complex, they help my migraines). I discovered some interesting things.

1) It is really difficult and time consuming to baby myself, but it is possible when the weather cooperates. (There were days I still needed my breakthrough medications and needed to lay low, but I was able to work through low level migraines and use exercise to keep the small ones at bay. This was extremely exciting to find out, and equally so, that I could wind myself down in such a way that I experienced few rebounds. The rebounds I did experience were doozies, though, but I prefer getting stuff done any day. My garden looks amazing and is ready for Spring!

2) The new diet is working! Almost started working a little too well there, I forget how dehydrating Sjogren's is when I have to take certain medicines! But I know know what I need to eat depending on what my body tells me. I have finally (hopefully) figured that part out! (*knock on wood!*)

3) Pain & nausea are managed with medication! I feel confident with the plan my doctors have for me here.

4) Chronic fatigue is NOT managed. I was falling asleep in Church. Not good! I'm going to have to do more research on the kidney front about this. Hopefully there's something more I can do diet or medication-wise (hopefully the former before the latter).

5) Though my body can be babied, that can quickly lead to overconfidence in my abilities. I hosted a friend's party, and then tried to also go to coffee the next day. I discovered that my maintenance program doesn't work so well among company, and was quickly drained to a point beyond my liking. I paid for it in spades!

6) I have reached out to one of the resources listed on the ticket to work page... *knock on wood* Hopefully things will go well and I can earn a little to keep the wolves at bay!

It's a scary time being in a position like this... Too many healthy people are hurting which means the sick and the desperate really get less. I hopefully can find some way of working from home to make enough to get by if I'm frugal & carful.

I'd be lying if I said I wasn't scared though.

Sunday, March 9, 2014

Being #broke as a #joke (or the #SSDI "blues")

I went on disability at a very young age, 29, to be exact. My date of disability (according to the government) is October 2002. Because of my young age, I didn't have a lot of money in my Social Security "account." Usually, if that is not deemed a "suitable" amount of money (whatever that means) they suppliment with SSI, or Social Security "supplemental" Income (don't ask me where the 3rd S went, I have no clue). Anyway, because I was so young, the Government in all their glorious wisdom called me "retired" at 29. This special category means I'm not permanently disabled (so they won't forgive my student loans) but I'm also not expected to return to the workforce ...EVER. Yeah, #government logic. Makes no sense to me either...

Oh!! And since "everyone" gets "Affordable Care" thes days (har har) that means people like me on the bottom? We get screwed first. The Medicare fund, how I NORMLLY afford my medications, is bankrupt, so now drugs that USED to be free ... Drugs with no patent, no fancy BioTech Pharmecutical name, generics the lot, are all costing me money. And do you think they give me more money to afford those medications? Hell no! Have you SEEN the economy? There's a New Global Depression going on. No one has any money, not even people who used to be considered "rich" like my father.

For the FIRST time ever in American History, kids are worse off today than there parents were.

I never though this would be my country...

So for the past few weeks, ever since I had to part ways with my former roommate, I have only been able to afford the cheapest of my medications, the ones that keep me alive. I've been white-knuckling opioid withdrawals (it's not as bad as the junkies claim... It's like a stomach flu, nothing I can't handle by now, I've been through SO much worse...) and today was the first day I was able to affor two more meds: methadone for my small fiber neuropathy, phenergan so I don't throw up pills if I get a migraine. (If I can't keep my medication down, that's a $750 ambulance ride and I don't know how many thousands for the ER visit... More money I *don't* have....)


Don't get me wrong, I'm not asking for a hand-out. Never was. I don't believe in government welfare, never have. But when you've already sold everything of value and have nothing left.... When it's cold, you have no heat, and the wolves are at your door.... What else can you do? I'm a 40 year-old-woman! Not some college graduate. I should have my life together by now! I mean, really! What's a girl supposed to do?

I guess it goes back to the old Sting song: "When the world is running down, you make the best of what's still around."

But you know, it's not wrong to dream for better. I've had better, I remember better, I earned with my own two hands better, and if it weren't for my health issues, I would again! But that's not what pisses me off the most. Wanna know what pisses me off the most? My brother, also on disability, who was disabled at the SAME age I was, but who paid FAR LESS into his SSDI fund....

He gets more money than me for no other reason than his disability cleared at a later date than mine.

Yeah.... I don't trust the "Affordable" Care Act to make medical care affordable. It's already made it far, far, far worse. #epicfail #FML

Saturday, March 8, 2014

The difference between #acceptance & #approval

Back when I was convinced I was an alcoholic, (15 years sober until my doctor proved to me that I could do what Alcoholics Anonymous calls "controlled drinking", i.e., I really can "take it or leave it") I studied the Big Book of Alcoholics Anonymous like it was my Bible. I was dedicated, and I was going to do sobriety "right" (what ever that means! Lol). My edition of the big book is the 3rd, so my copy it's page 449, newer additions will be different. But it's a story by a doctor/pharmacist (yes, he was both!) and it has a really great passage on acceptance. It goes like this:

Page 449 (3rd edition...)

And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing, or situation – some fact of my life – unacceptable to me, and I can find no serenity until I accept that person, place, thing, or situation as being exactly the way it is supposed to be at this moment. Nothing, absolutely nothing happens in God's world by mistake. Until I could accept my alcoholism, I could no stay sober; unless I accept life completely on life's terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and my attitudes.

When I first read that, I thought: D'oh! Busted.... That is *exactly* what is wrong with me and my life. and that's what originally brought me to choose sobriety, even though at the tender age of 19, I wasn't even legal to drink! I even went so far as to go through an out-patient (because I volunteered) sobriety program called Edgewood in St. Louis! But when my health problems started, it became very clear I couldn't say no to drugs anymore.

Now, A.A. Has a number of publications, and one of them is called Living Sober and in there is a story about an alcoholic who had to have surgery and was afraid of taking pain pills (like me). A.A. gave me an easy to follow rule: if you're in pain --- take the medication. If you're not in pain --- DON'T take the medication. Easy, right? Problem is.... Pain can become it's own disease and when pain goes chronic, using short-term pain killers is actually what you *don't* want to do...

But back to acceptance. In my many travels, I actually got to meet Dr. Paul O. before he died, and at the time I was dealing with migraines and I was being treated like a drug-seeker, even though I was open about my recovery, had a sponsor, was holding meetings, the works! I told him, I just can't do it.... I can't forgive these doctors for how they've treated me! How do I accept this? I'm being tortured by chronic pain!!!

That's when he said to me: "Acceptance is NOT Approval."

See, if I'm driving down the road, and the car in front of me slams on it's breaks, I may not Approve of them doing that.... But if I don't Accept that they've slammed on the brakes and act Accordingly, I'll end up in a wreck!!!

So it really is a choice, my attitude. But that doesn't mean I have to like the choice I'm given!!! I can accept my illness, but I don't have to try and Enjoy it! Lol

That's just nuts!

Dear #Doctors,

I know logic. I studied logic at University, and even passed Organic Chemistry my first time through. I was pre-med and a chemistry major when my health showed me that there was no way I could be a doctor professionally. Didn't matter that my step-mother was a doctor, or that I could have gone to Wash U Med School on an Alumni scholarship (one of my ancestors was the first dean of the Wash U Law School). But none of that matters when I walk into a doctor's office. I'm supposed to be stupid, illogical, uneducated, drug-seeking and all sorts of other nasty terms for patients that I don't care to repeat here. I was even called a "strawberry" once by an ER nurse (it essentially means crack whore).

I'm not an idiot and I'm no fool. It's not that difficult to read test results when they send them to you with instructions written for a 3rd grader. I make my living on dumbing-down highly technical articles written by lawyers, engineers, and doctors! I've done it here even. So I'm no slouch. I know when I'm being fed a line of bull. You can't tell me that it's highly probable that I have a disease more rare than the rare one I have now. That's just stupid. But that's exactly what they're trying to tell me now, bless their hearts. And I ain't buying.

I am proud of my Midwestern roots, and I am proud to be from Missouri, the "Show Me" state. We got that name because of a particularly onery statesman, who on the floor of the U.S. Congress, was able to stop an entire movement with that line. As the story goes, he knew that he was looked on as a country bumpkin, and he used that to his advantage (if you've seen House of Cards, you know what I'm talking about). He let them be swayed by his slow southern drawl, and then when they weren't expecting it, he plunged in the knife:

"Now gentlemen, I may be slow, and I may be just a Missouri bumpkin.... But from where I come from, talking ain't doin'. If you want my support on this bill, then you better SHOW ME it can work..." (I'm paraphrasing...)

Point is, people who don't know forget that St. Louis is a city Older than the United States. If you don't know me, you'd think I was all those ugly terms they like to call patients. (Now I know why they call us patients.... Because they demand we be patient....) But if you were to check your sources, run your tests, all that good due digillance stuff... you'd know: I ain't lying, sailor. Never then, never now.

And I know a thing or two ;)

So on to the next endocrinologist appointment... Wheee! [/sarcasm]

Thursday, March 6, 2014

Blog Carnival - Keeping Your. Head Above Water w/ Chronic illness

I was a big Beatles fan as a kid, so I'm going to quote @RingoStarr and say, "I get by with a little help from my friends." My mind is like a dark alley: you don't want to go in there alone, because there's a good chance of being mugged! Criminals are cowards, as my Dad used to say, so I swore to always be brave! even when it came to exposing my shame to the world. That's a hard thing to do if you don't have friends backing you up!! And the chronic illness community has been there for me. You all are the best friends a gal could have, and I couldn't have done this without you.

Some names have been named, others have code names, but the large majority of you have helped me and never gotten so much as a thank you... (Relatively speaking). I'd like to fix that right now.


I wouldn't still be here if it wasn't for you.... And if we've had a failing out (as I am a fragile, delicate flower... A sensitive soul...) this goes to you ten-fold.

I am truly blessed, even with all this awful stuff happening to me.

Pamela Wilson Curtis

Wednesday, March 5, 2014

Crossing the Streams

I like to #compartmentalize. I don't like keeping secrets, because secrets kill, but I know that not everyone understands, not everyone believes, and not everyone wants to hear what I've got to say ALL the time, no matter what. (I'd either think you a bit strange or want to marry you, depending on the moon.) As such, I have all sorts of different personas out on the Internet. There's my personal side, my professional side, my family side, my private bedroom side, my health side, my artist side... Lots of little compartments where I can stick all my stuff and not have it overwhelm my audience. Unfortunately, sometimes those streams get crossed, and all the boundaries I set up so nice and neat come crashing down, exposing me to all the world.

To quote Tech N9ne, I'm fragile. I never thought I'd be this way, and in fact tried my best not to be! My father used to constantly tell me "grow a thicker skin!" As an adult, I finally got the chance to snap back, "Be a little more considerate!" We never had that argument again! Lol

It's so difficult to explain to people that while, yes, I do come off bipolar some times, no it is not that (not that there's anything *wrong* with being bipolar, that's just not the right diagnosis). It's my migraines causing hypomania and mini-depressions when my supply of serotonin is flushed from my body. It's difficult to explain that, yes, though my case is unbelievably horrible, that doesn't mean it's fiction, or that I'm exaggerating....

I'm sensitive!! Not just emotionally.... I mean, quite literally, I am extra-sensitive, even more than most folk, at a physical level. I also have, strangely enough, a super high tolerance. So while most people would normally keel over, I'm able to sail on as though nothing is wrong, even though the tests all come back supporting my claims. Once again, I was told that I would not have an abnormal test result. Once again, I did. And not only that, but I was right in thinking I had kidney damage when everyone else was telling me "no way." There are some more tests that need to come back, but on the whole, I *should* be able to move forward with this... But yet again, I'm getting nothing from my doctors.

Does an MD carry with it an allergy to admitting "I was wrong"? I mean, seriously! Science teaches us if the theory doesn't fit the facts, change the THEORY. Don't deny the facts! The cortisol stim test showed an abnormal response. The thyroid tests once again showed an abnormal response. My kidney tests and my salts all showed abnormal results. And I can't get an endocrinologist to return my phone calls.

Understand this: I did not make things this way because it's how I wanted it, but I am certainly going to try to make the best out of a bad situation. It's infuriating how nonchalantly other people can destroy our lives with a simple comment. You wouldn't think that one person's opinion could have that much impact, but given the right circumstances, oh yes it can.

I guess we all make fools of ourselves every once in a while. It's okay to crash & burn, so long as you can recover from it too. I am certainly no exception to that rule!

Wego Health Awards 2014

It’s time for the Third Annual WEGO Health Activist Awards! This year, they’re extending all the ceremonies by presenting each award in its own mini- ceremony to really recognize all of the amazing nominees, finalists, and winners!
The ceremonies will be taking place throughout the week of March 20th, and you can RSVP to the Health Activist Awards event via Facebook. All of the ceremonies will occur on our Health Activist Awards blog, which you can visit at: On our Health Activist Awards blog, you’ll also find information about the finalists and judges, as well as pictures, ways to interact with us on social media, and more! Visit the blog today, tweet along with the hashtag #HAAwards, and make sure to tune in to the Third Annual WEGO Health Activist Awards!

Tuesday, March 4, 2014

@Wegohealth @Tweetchat

Join us @ 1PM MST at - Log in using your Twitter user name and password, and "Set Hashtag" to #hachat

Happening every Tuesday!!

Monday, March 3, 2014

The BIG Sleep Myth

Did you know that it's completely UNNATURAL to sleep for 8 hours a night? Think about it... no other animal sleeps like this, and it would be extremely dangerous if it were actually required! Your "sleep issues" may not be issues at all, but a complete misunderstanding of how our bodies REALLY work. Not only do scientific studies prove this to be true, but back before the Victorians and artificial light, it was considered natural to have a First Sleep, followed by an hour or two of wakefull ness, followed by a Second Sleep.

His book At Day's Close: Night in Times Past, published four years later, unearths more than 500 references to a segmented sleeping pattern - in diaries, court records, medical books and literature, from Homer's Odyssey to an anthropological account of modern tribes in Nigeria.

Much like the experience of Wehr's subjects, these references describe a first sleep which began about two hours after dusk, followed by waking period of one or two hours and then a second sleep.

"It's not just the number of references - it is the way they refer to it, as if it was common knowledge," Ekirch says. []

How many people are shoving "medicines" down their throat for a problem that shouldn't be seen as a problem? And how much healthier would we all be (including shift workers, who have a notoriously difficult time switching between schedules) if we recognized our true nature?

Makes you wonder what else we might have wrong, doesn't it?