Wednesday, November 16, 2011

"Powering Through"

I know I just posted about keeping details to myself, but this is something I've been meaning to write about.

I have a beastly cold. I'm told this campaign is a two-week undertaking and I've been in constant combat for a little over a week. I am enfeebled. I have been trying so hard to "power through", but this cold has already cost me a few key engagements. One instance in particular, missing the concert of the year, is causing me considerable anguish. I've managed to honor a couple of commitments, but I anticipate further betrayal.

Getting shit done in the face of adversity has been a quiet and enduring part of my identity for years. I was always involved in multiple projects of varying styles in addition to working full-time. Up until this past spring, I was proud to be able to accomplish more than the average person does. Now, the foundation of my identity is being compromised. I'm beginning to feel like a boxer who just. needs. to. retire. already.

I could go back several years, but this particular point in the decline began in the summer of 2009, after a bout of pneumonia followed by a distinctly horrendous round of viral meningitis (my second lifetime course). I spent months recovering from that, acquiring several mobility assistance devices that I'm glad I kept around for later use. I never completely recovered. Because I was out of work at the time, I could eventually do a few performance pieces here and there (yay!) and then spend the following several days recovering (boo!). I was unemployed from just before that episode until August of 2010. I was privately profoundly uneasy about my possible inability to function within the daily grind, but went for it with gusto anyway. When I was hired as a temp at a mortgage company, there was no easing back into the workforce. There was overtime almost every day, constant running around, and dealing with time-sensitive everything. I actually liked the busy pace of working in the mortgage industry over the years, but my body apparently couldn't handle it anymore. I was permanently hired in February of this year (yay!) and was passed out on the floor next to my desk two months later (boo!).

I have continued to perform in a super scaled-back capacity. I managed to get a lot out of a recent four-day long burlesque convention even though I had to rest/sleep/watch from the sidelines for most of it. I successfully stayed upright at the husband's and my annual Halloween rock show. My Doom Americana band is rolling along at a comfortably slow pace for me. I continue to have lots of ideas for burlesque shows (both as a performer and a producer), but not the energy or funds to make them happen right now.

I don't know how much of my current issues are due to overdoing it or something else. It's difficult to say for sure, since I have so many different health complications and medications on board. I'm concentrating on the "complementary and alternative medicine" side of the spectrum (my preferred side) at the moment. I'd like to feel well enough to get back to working at least part-time in the new year.

Tuesday, November 15, 2011

State Of The Blog

I've been mulling over the trouble I've had deciding exactly how to use this blog. As someone who has traditionally shared very little about her health, how much of myself do I really want to put out there? Do I want to lay out every single (frequent, tedious) medication change or post only when something is particularly funny? What is helpful to other people? I've been avoiding posting here until I have something substantial to talk about. Of course, a few substantial events have gone by and I still haven't written anything.

This post arrives on the heels of yet another bust in the process of figuring out this whole lightheaded/fainting business. My general practitioner thought some new lab results might finally be a big deal, but the endocrinologist did not agree. I learned a long time ago to not get excited about something until it actually happens, therefore I was not heartbroken over the news. It's still a bummer that the mystery endures.

I love that I have so many people in my life who care about what is happening and want to help, and I truly appreciate the effort. The business of telling the world (especially through social media) all about my experiences has been empowering, but hugely exhausting. I've decided to go back to keeping most of the details to myself unless they ask to live inside this blog. I have additional ideas for this space, such as to spotlight other individuals with invisible disabilities and any related organizations. So...I guess I'll get on that!

Monday, October 3, 2011

Meds -They Are A-Changin': Part II

A years-long sort-of secret of mine is my difficulty with paying attention long enough to read things longer than a short magazine article. It's one of the reasons I haven't completed a college degree and I carry a lot of shame around about that. This part is a story for another blog entry, but I was "gifted" and an excellent reader when I was a kid while being inattentive, impulsive, etc. at the same time. Exhausting.

I've only recently discovered that there is a staggeringly high comorbidity rate of ADHD and other psychiatric disorders--such as my dear friend, BPD. A year or so ago, I read a couple of magazine articles written about adult women with ADHD and cried. I could mark off almost every point that made the case for this possibly being my problem. (I'd share the articles, but I forgot to bookmark them).

I haven't fully checked into the attention issue until now, because there is always something going on that seems more important (to my doctors). I agree that there have been Very Important Things happening, but I finally made enough of a demand that figuring this out became a priority. My current psychiatrist has zero experience with ADHD (and has been completely unhelpful in this department). My general practitioner (whom I adore) has basic experience and gave me a prescription for a low dose of Adderall. We'll see how it goes. If it works, I'll see another psychiatrist.

I've only been taking Adderall for a couple of days, but I'm already reading several more pages in a book at a time than I have in ages. It usually takes me 4 hours to write one of these blog posts. Today, it only took me 2 hours. So far, so good!

Sunday, October 2, 2011

Meds -They Are A-Changin': Part I

For the bipolar disorder, I had been taking lithium (Lithobid), lamotrigine (Lamictal), and quetiapine (Seroquel). I was having continual issues with mania, but couldn't safely take any more lithium than I already was. Enter--Seroquel, which at the time worked mostly really well for me. I was experiencing several of its possible side effects, but I felt I'd rather cope with them than deal with how I felt before (one of the underlying stories of my life).

One of the possible side effects of Seroquel is orthostatic hypotension (decreased blood pressure) due to a sudden change in heart rate and blood pressure when one sits or stands up too quickly. This can cause lightheadedness or fainting, which has been a major issue for me (though not from getting up too quickly) over the past 6 months. I had taken Seroquel before with no fainting issues and started taking it again a couple of months before I started passing out. After every imaginable test, it seems no one can pinpoint a medical cause for the fainting. Even though these tests repeatedly ruled out orthostatic hypotension, my psychiatrist and I decided I could try going off the Seroquel for a week or two and see what happened.

I've been off the Seroquel for two weeks and my faint feelings haven't disappeared, but they have improved. I'm feeling more manic and I've been waking up several times a night like I did before, but I'm not feeling foggy and slow all day long. I don't know if I'll go back on the Seroquel. I'd rather not take another antipsychotic (I've also tried Abilify - that was a literal nightmare).

I've mentioned before that I believe what caused me to start passing out was the constant overdoing it. I'm reevaluating the balance between the things I "need" to do and the things I "want" to do. There's no way I could hold a job right now, but who knows what will happen in the future. Managing my health has become my primary job and I think I'm doing pretty well at the moment. 

Friday, September 2, 2011

"Sorry that bad thing happened to you, at least it wasn't worse."

Grieving can be an intensely invisible process. I've dealt with a lot of grief in my life and I'm sure I'll discuss most of it eventually, but this entry is prompted by other people's grief.

It can be difficult to know what to say when someone you know has experienced something devastating. For instance, a friend made a post on a popular social networking site about a family member who passed away. Most of the people who responded seemed to be helpful in their support, while others seemed to be grasping for words (each reaction is, of course, legitimate).
 
In general, saying something like "I'm sorry that bad thing happened to you" followed (or not) by whatever supportive words are comfortable for you to say (I'm thinking of you/sending my love/here if you need me/bringing over an easily reheatable dinner in a container I don't care about getting back for your family tonight so you don't have to think about it, etc.) is helpful. Also, you don't have to offer to help if it won't work for you.

Saying "I'm sorry that bad thing happened to you, at least it wasn't worse" is generally completely unhelpful. "I'm sorry your baby died, but she was sick - at least she wasn't murdered". "I'm sorry your best friend was smeared onto the freeway by a semi, at least he wasn't raped by bears first." Um, yeah - that definitely would have been worse, but so what? Things could ALWAYS be worse! Folks have the right to make space for the anguish that's happening to them right then without others minimizing their pain (intentionally or not).

Don't worry about having answers or the "exact right" thing to say, just be genuine. If you offer help, follow through. If you truly don't know what to say, say nothing. It's okay if you mess it up occasionally, I sure do.

Monday, August 1, 2011

Mental Illness: Introduction

The mental illnesses I usually hang out with are agoraphobia, panic attacks, ptsd, and bipolar disorder. I'm not offering a list to be cute, it's not complete, and some are related. My opinion is that I am genetically predisposed to bipolar disorder (maybe mental health issues in general) and the rest are a result of growing up with limited coping skills in an area that wanted nothing to do with me, coupled with a cascade of mind-boggling life events that seem hellbent on destroying my tree-house.

I take a lot of medication, the bulk of it to keep my brain from snapping and leaking out my ear. I am well aware of the fact that I take a lot of medication. People will gasp and murmur and ask if I think I really need to be taking all these prescription drugs. Cross my heart, I would rather be taking zero drugs, but I'd be taking a whole lot more if I wasn't an involved and educated patient. I am a "compliant" patient (one who takes my meds exactly as ordered by my physician), but only after a whole lot of discussion about the options (including the complimentary and alternative ones). I'm doing a lot of non-drug therapy and I pay close attention to my diet. I'm particularly down with Hippocrates: “Let food be thy medicine and medicine be thy food". 

I definitely think it's important to be aware of the role of prescription drug companies, insurance companies, hospitals, doctors, government, etc. in the business of healthcare. It's supremely important to be your own advocate. If you can't, I hope someone who cares about you can and will take up the mantle. Sometimes, we all need to be carried a little farther down the road.

Spotlight on NAMI, because I think they're rad: "[Since 1979], NAMI has established itself as the most formidable grassroots mental health advocacy organization in the country." Their website is an extensive resource for information on specific disorders, fighting stigma, treatment and support, legislative action, etc. They are accessible, helpful, and genuine. Please go forth and support them!

Sunday, July 31, 2011

It's Been Awhile

Mostly because I've been coming up with these epic, meandering entries in the middle of the night, getting frustrated, and deleting them. I've been having a hard time figuring out what to say next about this non-linear adventure. I don't usually say much of anything - one reason writing this blog could be beneficial. Pasted below is a note I wrote to my Facebook friends and family a couple of weeks ago so I didn't have to have the same conversation over and over and over (and over) again (and again).

"I post barely anything personal here (no, really). Most of you don't know exactly how complicated my life situation is, because I don't like to talk about it. I'm really good at glossing over the unpleasant things because of this, and the general population is usually uncomfortable hearing "how I am" once they realize the answer isn't "fine" or something equally brief, anyway.

The "mysterious fainting thing" that cost me my mobility and my job 3.5 months ago is merely one more thing thrown on the stack of medical b.s. that gets in my way every day. What I *need* to do usually outweighs what I *want* to do. I am BORED OUT OF MY MIND and just now feeling pretty sad about it. I don't spend a lot of time feeling sorry for myself. I'm always trying to figure out how to make the best of it. I'm just exhausted right now. It takes a lot of energy for me to hang out or anticipate hanging out and I'm physically unable to do most of things I love. (Please don't say, "At least you can do xyz...", I already know about that). It's difficult for me to get around or get things done by myself and I'm by myself most of the time. Eating most of the food everyone else eats makes me sick, as does drinking alcohol (boo!), so hanging out in a social situation involving the two (which is most of them) stresses me out. Of course things happen, but Bill and I have been cancelled on so many times over the past few months it's giving me a complex. My body cancels on me pretty much every day, but it's been doing that for years.

I sincerely appreciate everyone who has offered their support, I'd be extra dejected if it weren't for you. I don't really need or want any more advice right now. I'm not casting stones or secretly begging for attention. I don't need people to try and fix it, I really just need you to hang out and acknowledge the absurdity with me. I'll take care of business myself."

This was well-received and I'm really glad I laid things out. I forgot to stress how fine I am with being alone for a few days at a time, it's my nature. I probably also should have mentioned my social awkwardness and anxiety, but people seem to know about that already.

Sunday, April 24, 2011

The Prestige!

Here I sit in my living room - the room in which, due to recent faint-y events, I've spent most of my time over the past 3 weeks. I am perched in the now-sagging center of my lovely red sofa and I am ready! Ready to start blogging about something that dictates my every decision, clings to me like a film, paints chocolate around my mouth while I'm asleep:
CHRONIC ILLNESS-ness-ness-ness!

Since I was diagnosed with myasthenia gravis at the age of 12 (more on that later), I have been waltzing around (oftentimes not very gracefully) as a person with one or more "invisible disabilities".  Heart disease, arthritis, the damplung - all are illnesses that do not appear, to the casual observer, to exist. Occasionally, the casual observer is a busybody who believes it is their birthright to shame strangers for perceived civil infractions:

Me: "Hoo-boy - I'm so glad there is an available handicapped parking space. I've been circling the Seattle Center for sooo long and while I don't usually make use of my personal legitimate parking placard (let alone advertise that I have one), I really need to do so this time or I will unintentionally veer into a crosswalk full of elderly tourists and children dressed as Hello Kitty."

Able-Bodied Shame-Bearer (upon witnessing my arrogant upright two-legged departure from the car): "What the hell do you think you're doing, you damn kid?!?  Think you can just park wherever you want...you ought to be ashamed of yourself!"

Me: "O___o"

I don't particularly enjoy talking about my health problems, but I've had to do so ad nauseum lately.  I never feel as though I've done an accurate job explaining my complicated situation.  Maybe the act of writing it out here will be of use.  If, along the way, I can help even one busybody turn their shame-cannon around, I will feel pretty smug.  And I'm totally okay with that.