Wednesday, November 10, 2010

Seeking Dr. Right

Sick Momma asked what you like and don't like in a doctor in this week's Blog Carnival. I can't ever seem to catch submission dates ahead of time, but I'll answer some Blog Carnival questions here anyway because they're always good ones.

My perfect doctor would have the following qualities (among others):

* Is not afraid to recommend homeopathic, natural, or supplemental treatments
My neurologist recently recommended trying alpha lipoic acid and vitamin B2 in response to a weird head feeling I get that I can only refer to as dizziness (although I no longer think that word defines it correctly). Despite the fact that the alpha lipoic acid and B vitamin don't seem to be helping, I was thrilled to try something that was "just" an antioxidant and vitamin. Over-the-counter drugs don't cause as much guilt when you miss one, don't usually interfere much with the other drugs you're taking, and don't require going through insurance.

I would love it if my doctors thought I could benefit from acupuncture or tai chi or something.

* Leaves the ego behind
Dude, I don't care if you can't cure my non-curable illness. It's not a conquest. I just feel like crap and I need your help managing my symptoms. Don't get mad at me if your "solution" doesn't help.

* Leaves the med student behind (at least sometimes)
I know the only way to learn is by doing. I understand that. But man, there is NOTHING WORSE than being looked at like a broken specimen by a group of strangers. Maybe my illness is new and exciting to you, but it's my life you're scrutinizing with your young beady eyes. When I was sitting there receiving my diagnosis and a team of students piled in behind the doctor looking detached, I could not have felt like more of an alien. Aside from learning that life was going to be a progressively more terrible experience, I also learned that I was even less like those med students than I ever had been—I was now to be only examined and pitied. They knew more about my condition than I did; what a way to make people feel inferior.

* Can just take the time to listen
If I'm not seeing a psychologist, maybe I shouldn't expect to be truly listened to. But I ditched my last GP group because the final doctor I saw wouldn't allow me to ask any questions until the very end because he is a "linear thinker" and can't have his thoughts interrupted. Really? I can't ask anything on my mind until the end of your 10-minute diatribe? Then you'd better get me a notebook and a pen because I can't remember ANYTHING after about 30 seconds in. You should see me in the car on the way home from the grocery store when I remember I didn't grab the ONE THING I went in for (yet I still managed to spend $17 on other things I didn't know I needed).

My new GP won my business because she is close to my home and because when I came in for the first time with symptoms to an unknown illness and a medical history a mile long, she listened and expressed empathy. Not sympathy, but empathy. Not "you poor thing" but "I see how you could feel that way." And even though she hasn't fixed anything and seems to be quick to prescribe (seriously, who gives an open-ended script for Xanax these days?), I know that once I get past her beast of an office staffer, I'm in a place where I will be listened to and not told to keep my mouth shut about what's going on until she's said her piece.

Sometimes it's not about the care given (fixes, drugs, opinions) but the willingness to believe that you know your own body and, therefore, the willingness to help on YOUR terms.

Oh, and then there's my neuro. "So what's new?" "Not much, but my arms and legs are fatigued lately." "Great. I'll see you in 3 months." Thanks, doc. You really deserve that $150 office fee.

* Chills with the drugs
But more on the prescription tip, my goodness, I cannot imagine it's medically advisable to rely on drugs so much. The fired GPs were all about prescribing antibiotics "just in case" things were bacterial. Even if that supposed pink eye would clear up on its own regardless.

To the ENT who can't prove that my dizziness is an inner-ear thing because you can't really see in there and "it doesn't matter" what's causing it: The drug you prescribed isn't fixing it. Does it matter now?

Or to the ER doc who gave my husband a script for Percoset for his fractured knee even though his pain was only there when he stood on that leg: There are plenty of junkies who would kill for these pills. I'm sure you know the dangers of the availability of strong painkillers. Don't just hand them out if people don't need them.

*  Has appointments in real-people time
You're only there on Thursdays to see patients? Really? I know you're a specialist, but you can't find someone only slightly less special than you to see people in the 25 other days of the month? Or should I just schedule my next flareup now so I can get a coveted spot next March?

* Does not make me wait an hour in the waiting room
First GP ever fired? Left me hanging for 90 minutes. This is a tough call because I know you want to give patients as much time as needed, which I can appreciate in a way. But when I finally got into the exam room, you were talking to me about your recent trip to Japan to see the Mets. That is not worth waiting for. Schedule fewer people if you know you're going to spend 45 minutes bullshitting with each one.

Monday, November 8, 2010

Do I like where this is going?

Okay, so I can see where this blog has started to go and I should probably stay out of all that if I want people to continue to like me. The temptation to just vent on the Internet is strong, friends. But I'll try to stay in the positive stuff.

The fact is that I still work and I want to be hire-able until I can't work anymore, so I can't get too personal on here. At least, I don't want to be identifiable.

But what's left after that? If I can't be totally myself on here, what's the point of this blog?

Therapy and community, I suppose. How to do that without being honest about who I am?

Thursday, November 4, 2010


They are the temporarily able-bodied. The ones who wake up and get out of bed and start their days, move throughout them effortlessly, and get into bed at night and fall asleep. Then they repeat the next day.

These people often couldn't care less about disabilities. They can't see themselves as ever needing what are today called "accommodations." The world was built for them, and in order for people with disabilities to function in their world, there must be little cheats here and there, like a handicapped restroom or a ramp near an entrance.

Some TABs don't want to understand why it's important to care about these things NOW, before they acquire a disability and have to mold themselves to fit into someone else's world. They don't vote. They don't read up on diseases that run in their family or that their friends may have. They use terms like "bed-ridden" and "stuck in a wheelchair." They give money to charities and feel good about themselves without really caring what happens to the people it benefits. They think they'll always be just fine.

If there were universal design on things, no one would have to adapt to anyone else's world. Counters would be built to be higher or lower depending on whether you are tall or if you sit in a wheelchair. Buses would ALL be street level so lifts wouldn't be necessary for people who use wheelchairs to board. Jars wouldn't be so friggin' hard to open. You get the idea. 

TABs don't realize that it only takes a millisecond to become disabled. So why not make the world a better place for people with disabilities NOW? The likelihood that you will acquire a disability in your life is extremely high. (Picture your grandmother here.)

Saturday, October 30, 2010

I need guidelines

From sunlitdays @ LJ
I find self-help books to be sort of a double-edged sword. On the one hand, you're reading someone else's opinion of how to live your life, how to fix your problems, how to be happy, etc. So the implication there is that you're doing it wrong to begin with, and the way you're going to solve that problem is by finding an expert to guide you a different way, because they have it figured out.

Then of course you realize there are 9 million books on this topic and they all contradict each other. Who's the expert now?

I've learned, though, that you can find useful truths in self-help books, at least for your own life. You don't have to believe every word in order to take something away from the book.

And with that, I've been searching for a way to be sick. Not a way to get better (not happening), or be happier (too much pressure), but a better way to think about chronic illness and how it has taken over my life. (See, "taken over" ... I'm sure there's a self-help book on negative thinking, and I've already failed that author.)

So without further ado, I bring to you the book that I recently added to my Amazon wishlist as a "high priority": How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.

What I think I really need is someone to tell me how to be at peace with what's happening. One thing I'll give myself credit for is adapting to the new "normal" relatively quickly—I have a penchant for realism in the face of dramabut my chronic illness is a progressive one. More and more problems arise, and the outlook is not positive at all of that ever changing. So how to cope when your new "normal" is soon replaced by another new "normal" and another and another and another? I don't want to trick my brain into thinking this is okay ... I really want to find a tactic that will work no matter how many things go wrong. Each time something new goes wrong, I find myself grabbing air in the dark to find my way again. I need some new tools, and judging from the reviews of this book, I may have a better shot with this.

Wednesday, October 27, 2010

How DO I feel?

Doctors and good friends will always ask how you feel. When you have a chronic illness, you could go on and on about it. But the questions are, what's important for others to know and how can you make yourself limit it to the ones that won't alienate you from people in your life?

For instance, normally my limbs are tired. I probably have a slight headache. I've likely been dizzy on and off throughout the day and I can't see out of my left eye very well. Standing makes me want to sit. Sitting makes me want to stand. My stomach may be a little upset. When I close my eyes, or sometimes without even closing them, I sometimes see blue fireworks. Almost every day I have quick bouts of involuntary movement, whether it be an eye tic or a full-body shift. I probably only get about 6 hours of sleep each night because I wake up randomly and can't get back to sleep. I see floaters, lots of them, any time I'm awake. And I have lots of feelings I can't put words to ... vague aches, feeling off, bad balance, that kind of thing.

And that's just some of the physical stuff. I won't go into the emotional stuff in this post.

But you can see how hearing the laundry list of ailments, seemingly unrelated, can cause discomfort for the listener. If I were them, I'd first think, "Wow, she complains a lot," as well as, "I get that too. That's nothing." Sometimes I read people's laundry lists online and think, "Shut up. That can't ALL be happening."

Yet it really can. It happens to me. And only when you stop and think about all the things that are wrong in a given day do you realize how it's possible.

So when I'm asked how I feel, I have to stop what I'm doing and really pay attention to all the things that are chronically going on with me that I've shoved into the back of my mind so I don't go insane. I don't remember what normal feels like, so I have to really pick apart all the feelings I have at any given time and sort out the ones that seem abnormal enough to register with TABs.

And then I have to weigh the outcomes. What's the point of telling people these things? To get sympathy? To get help (when I know there isn't any)? To bring someone else down? I want to be honest about my life, but I also want people to want to hang out with me. No one wants to hang out with people when you know they aren't feeling well. But what if they NEVER feel well?

I guess this is where mind-over-matter comes into play. This is definitely something I need to work on. I either block things out completely or harp on them for days/weeks. Neither of those is probably the right thing to do. They say to "listen to your body," but my body has so many secrets, I'm a little terrified of it.

Tuesday, October 26, 2010


How much of how I feel is because of my disease? How much of it is from the other disease? How much of it is from the depression caused by them?

How much of it is caused by reacting to feeling sick all the time? How much of it is "all in my head"? How much of it would show up on a test? How much of it is due to the meds? How much of it is because of the way normal people go on with their normal lives while I'm sitting here asking these questions?

How much of this is real? How can I get the rest of it to go away?

Thursday, October 21, 2010

Fatigue and the struggle to be self-sufficient

As a sick chick, I'm all the more grateful for my husband, who is currently puttering around the kitchen putting things away and fixing stuff while I sit on my laptop writing this entry and thinking about how my legs hurt.

Hm, just heard a bang followed by a fork hitting the floor. I called down, "Everything okay?" Right, like I'm willing to stand up right now if the answer were no. Well, okay, I WOULD stand up if he needed me, but that doesn't excuse the relief I felt when he answered, "Yup."

That's the thing with fatigue. I COULD stand up. I can. But it feels like I can't, and once I'm up, how long can I be up before I feel the urge to sit?

And then the thoughts lead to "How can I function in this world without my willing slave husband to fix things for me and pick up the slack while I waste away typing on the Internet?"

Which of course leads to the "I'm going to die alone" train of thought. The "what ifs." As Susan Jeffers calls it, the Chatterbox in your brain, the negative, spiraling thoughts of doom and lonely demise.

I've been going to the gym for the past few months, even though I still have unexplained symptoms that lead me to believe I should stay as close to sitting or lying down as possible most of the time. My going to the gym is an attempt to build muscle and hopefully, in doing that, giving myself some inner strength to go with my outer strength.

So far, not so good. Especially when I can feel my heart skip beats while I'm at the gym. But I've already been to a cardiologist for this problem, and he seemed to not give much of an answer despite making me wear a monitor for a day and giving me my first sonogram. So now my "Chatterbox" starts the whole, "Well, you've already seen that doctor and he didn't say anything. But should you go back? Is this worth another trip and another copay and another day off from work? What more can he do for you? And when should you trust what a doctor says even though you can tell something isn't normal? Wouldn't it make more sense to go anyway and waste your time and money and annoy your job than to die of cardiac arrest right here on this bike watching 'SportsCenter'?"

So no, the gym isn't helping.

I remember when I first moved in with my now husband. Suddenly there was someone else to take out the trash—so I pretty much stopped doing it. I had more time to cook, which is something I enjoy. And since I cook, my husband decided it was only fair that he clean up the dishes afterward. So I stopped washing dishes. And now when the dishes need to be washed and the husband doesn't do it that same night, I get agitated. It's not like I CAN'T wash the dishes or that I feel my husband SHOULD be the one to do it all the time. I don't feel like that at all. But I see washing the dishes as a project now. And I seem to be averse to starting projects, because I know I'll want to sit. I know my arms will feel weak. I know I will feel like I can't do it.

For instance, we just had a company come to measure our kitchen counters (we're going to have them replaced). I had asked my husband if we should empty the drawers/cabinets under the counters before they came or if it wouldn't matter. (I didn't know if things were open underneath the counters or if there was a separation between the counters and the innards of the drawers/cabinets.) My husband said it would be fine.

Well, it wasn't fine. There's now dust and wood particles and mystery fuzz that ended up on all our pots, pans, cutting boards, baking dishes and tins, aprons, and in that variety drawer that holds everything from packing tape to birthday candles. And on their way out, the contractors handed us a booklet on the lead paint they may have disturbed while pulling off the backsplash. That's probably in there too.

So the dishwashing project just got multiplied by a zillion. The idea of a project involving taking everything out of every drawer and cabinet below the counters and washing them all and drying them all sounds less than fun and a little gross. But I know how it will probably go ... I'll empty, husband will clean out the spaces, husband will wash, I will help to dry, and I'll organize things to be put back in.

This sounds doable to me IF I can bring a chair.

But only because I am splitting the work with husband. I could easily see myself freaking out about the amount of work involved if it were just me.

Then again, if it were just me, I may have had the foresight to empty the cabinets ahead of time. Purposely to avoid this issue, even if it were all for nothing. Maybe that's me being a woman, wanting to be prepared all the time. Or maybe it's the chronic illness mentality, doing what you can do when you can do it to avoid doing even MORE at a possibly inconvenient time later. Always waiting for that lifelong paralysis shoe to fall.