Monday, September 27, 2010

In Which I Am Outwitted By A Bicycle Seat

My first misadventure in biking was extraordinarily pathetic.

I woke up that morning to gray skies of joy. The sun was firmly MIA, so I decided to walk the dog to the park. It was a pleasant, uneventful walk. I took some pictures and she practiced sitting at curbs. We went to the enclosed dog park, and I walked around and scooped errant poop while she sniffed. Then we roamed the regular park for a while, meandering over grass and through picnic tables. The walk home was quiet, too, she strolled perfectly at my side and the sun never did show up.

When I got home I was feeling GREAT. I mean, pain levels at five and below, even with exertion? Kickass! When my boyfriend suggested taking the bikes to pick up my prescription, I quickly agreed. I was nervous, there are a few busy intersections in which I would be riding in close quarters with cars, but the more I can get out of the house, the better, and I was excited about how well the morning had gone.

The sun had since come out, but aside from a few anxious glances at the bright afternoon light peeking through the curtains in the living room window, I tried not to worry about it. My boyfriend unlocked the bikes and put the seats on. We walked them out the front gate, he hopped on and started pedaling away slowly. I started to get on the bike but couldn't. I couldn't get my balance. I was dumbfounded. And my boyfriend was already too far away for me to ask for help. I waited a minute for him to turn around and check on me, but he didn't come back. I was really confused and kept trying to get on the bike and failing miserably. I would swing my leg over and just get stuck. I remembered how I did it before, cock the left pedal up, brace and GO! But it wasn't working. Maybe it was my purse.

I carry a large messenger-type bag that makes me feel a little lopsided sometimes. So I became convinced that it was my purse that was making it impossible to get on the bike. My boyfriend still hadn't come back, I was getting really frustrated and tired of swinging my leg over the damn bike and my nausea was kicking up, the glare off the cars parked on the street was pissing me off and WHERE THE HELL IS MY BOYFRIEND??? I was mad and crying a little, confused and totally unaware that I was fully immersed in a sort of migraine psychosis.

So, I went back into the house to switch out my usual bag for a backpack. But when I got back on the bike I still couldn't make it go. I tried several more times before I started crying again. I could see my boyfriend, half a block up, waiting for me.

I was still straddling the bike, putting one foot on the pedal and stopping, trying the other and stopping. Finally, I realized I couldn't get on the bike because the seat was too high. It's happened nearly every time I've gotten on the thing, my boyfriend takes the seats off the bikes for security reasons and never puts mine back on at the right height. I had always identified the problem quickly before, but my poor migraining brain just couldn't see it this time.

Now, I have no idea how to adjust the seat height by myself, so this revelation wasn't very helpful because my boyfriend was still half a block away and stubbornly not coming back. So, I got off the bike and stared at him. Just stood there, still quietly crying from frustration, and stared. His small, blurry form seemed to stare back. Then he started gesturing, wondering if I was coming, what the hell what taking me so long. I just stared. I couldn't yell for him, I knew it would hurt. Even waving my arms felt like a bad idea. And I still had no idea I was migraining.

FINALLY, he came back. But it was already way past too late to salvage the operation, if it had ever really been a good idea. He adjusted the seat, but I was exhausted from my ten minute attempt to get on the thing and couldn't calm down. So, I just went back inside and cried it out. After a minute or so, I realized I was trying not to hyperventilate because the seat was too high on my bike and it suddenly occurred to me that I might be migraining and maybe I should lie down.

So, I iced and medicated and regained my balance. But, I was very emotional for the rest of the day. A character on a television show mentioned a lost child, and I teared up, unable to imagine what it would be like to be a childless parent. I walked into the kitchen three times to get water and kept getting distracted, ended up raging out a little on our ancient brita pitcher. My head was hurting, but no more than usual. The major symptoms of this migraine flare were confusion and "irritability", which has to go in quotes because I'm not sure if that level of grump still counts as irritable or if it leans more towards volatile.

Anyway, it was a good lesson, one that I am tired of not learning. I can only do so much in one day. Triggers are never to be ignored, even if I feel well. And I need to learn how to adjust the bike seat myself.


Sunday, September 19, 2010

The Reluctant Acupuncturist

I've seen her twice now, and I haven't seen a needle yet.

She's actually an internist, with a background in research and integrative medicine. She specializes in treating illness without pharmaceuticals, utilizing nutrition, physical therapy, biofeedback and, most importantly, acupuncture. She was recommended by my PCP, who really hit the nail on the head with this referral.

It was a normal first visit, lots of talking. She did a rapid fire exam that left me a little winded and started asking funny questions, like what color would you prefer a blank wall to be? She looked at my tongue and told me my spleen may be wonky. Then she talked for a long time about how she doesn't like to dive right in to acupuncture without knowing the whole picture. It was a long speech and I don't remember most of it because she was talking really loudly and my head doesn't like that. Is there a nice way to tell someone they are loud? I haven't found one yet.

She's the one who ordered the super-duper blood panel and we went over the results in the second visit. She still talked loudly, but I was prepared with the full on outdoor earplugs in. This woman's voice is like a jackhammer, people. But she's fabulous, and went into great detail about my test results and what they mean. I did my best to retain the info so I could regurgitate it here, but I may have mixed some bits up, so forgive me if something is off.

The high cholesterol, but normal blood pressure and lowish sodium levels told her that my adrenals aren't functioning properly. And that, in combination with my lowish progesterone, iron and potassium indicated that my body is having trouble absorbing nutrients and regulating electrolytes. Or maybe the progesterone was part of the adrenals thing. Anyway, these are common results with chronic pain, but these imbalances can exacerbate symptoms, ie increased sensitivity to pain and feeling exhausted. OH, which are ALSO side effects of low vitamin d. I had googled it, but the doc was a lot more concerned about it than the internet was, for once. (The internet is usually a bit of a hypochondriac, right?) She said that I was way below normal for both types of D, at 14 ng/mL when the low range is 30. She said she'd actually like me at 80, for being a chronic pain patient. So she gave me a scrip for it (I had no idea you could get prescriptions for vitamins!), one 50,000 iu pill a week. Then, she directed me to the internets to buy a certain brand of multivitamin that has the right sources of nutrients, and the right amounts. I reassured her that I was already taking a multi and fish oil and then she burst my bubble with the knowledge that not all vitamin makers are searching far and wide for the best sources for their vitamins. I thought that little USP symbol on the side of the bottle was enough, but she says no, that you really have to look further and learn about the ingredients and their effects on the body. She actually said toxicity. Really, it surprised me how little that surprised me. The more I learn about regulation and practices in the business of consumables, the more I wish I had my own little organic and responsible island on which I could hide from the petroleum and genetically modified soy that are in EVERYTHING.

So, once I get enough cash (donate button!), I'll be purchasing some high-falutin', non cancer causing vitamins and hopefully we'll get me back to healthy. Ish. The plan is to retest me in a month or so (yay more blood draws) and then go from there. Maybe with some actual acupuncture. Sigh.

Anyone have any suggestions for the loud talkers? I figure I'm going to say something in the next visit, regardless. Help me not be offensive?


Friday, September 17, 2010

Invisible Illness Week, 2010

In recognition of Invisible Illness week, I give you the meme:

1. The illness I live with is: chronic migraines

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: 2007, it was a pretty sudden onset. Though I have had occasional symptoms since childhood, like the subtlest of foreshadowing.

4. The biggest adjustment I’ve had to make is: being quiet. I miss being at the heart of a good raucous clamor.

5. Most people assume: that I'm weird, crazy, fragile, lazy, antisocial, entitled, snobby or rude.

6. The hardest part about mornings is: immediate pain. It's easier if I get an hour to wake up before it sets in.

7. My favorite medical TV show is: I like House, but I really hate the way they've dealt with his pain and drug use. That show could have done something great, something validating, for so many people who live with pain daily and medicate responsibly. But, no.

8. A gadget I couldn’t live without is: my laptop. The internet is entertainment, education, community, and convenience. It is necessary.

9. The hardest part about nights is: nothing is open. I could operate totally at night, if society would only let me.

10. Each day I take __ pills & vitamins. Less than 5.

11. Regarding alternative treatments I: am gung ho, as long as I can afford it.

12. If I had to choose between an invisible illness or visible I would choose: I don't know. It's choosing between illness and illness. The visibility wouldn't be the most important factor in the choice.

13. Regarding working and career: I don't work.

14. People would be surprised to know: that my medication is not for their recreational use. It's a prescription. For pain. Not a party favor. EVER.

15. The hardest thing to accept about my new reality has been: the constant struggle. I almost wish I couldn't remember when it was all so easy.

16. Something I never thought I could do with my illness that I did was: You know, I can't think of a single thing that I "never thought I could do". I've always been fairly certain that I could accomplish anything, with enough time and resources. And it's the same now, even with daily pain, it'll just take even more time and even more resources. But going uphill is still moving forward.

17. The commercials about my illness: are not for me. An excedrin migraine ain't gonna to cut it, Peggy.

18. Something I really miss doing since I was diagnosed is: just going. Being spontaneous and driving myself to exhaustion without a care in world because I could just go to sleep and be brand new the next morning.

19. It was really hard to have to give up: my freedom.

20. A new hobby I have taken up since my diagnosis is: sewing! crocheting! blogging!

21. If I could have one day of feeling normal again, I would: just go. Frolic on the beach under the sun. Run with my dog. Make plans with everyone I know, and talk and laugh and dance for hours, with all of my favorite music playing in the background.

22. My illness has taught me: compassion.

23. One thing people say that gets under my skin is: "must be nice", or similar sentiments in reference to me not working, or to me sleeping half the day, or how much time I spend on leisure activities, etc. That assumption, that not participating in productive life is my preference, enrages me.

24. But I love it when people: act normal around me.

25. My favorite motto, scripture, quote that gets me through tough times is: "It's my life, I do what I do."

26. When someone is diagnosed I’d like to tell them: You can learn to live with this.

27. Something that has surprised me about living with an illness is: my adaptability.

28. The nicest thing someone did for me when I wasn’t feeling well was: I can't name just one. Every time someone turns down the lights or the music without making a fuss, or when my boyfriend rubs my feet, or when the doctor's office gives me a quiet place to wait, it feels like the nicest thing anyone's ever done for me, every time.

29. I’m involved with Invisible Illness Week because: I have an invisible illness and I'm not alone.

30. The fact that you read this list makes me feel: visible. This is the only answer I remember from last year's questionnaire, and it's still true.


Monday, September 13, 2010

Instant Karma/Bike Riding

I went on my first bike ride in more than fifteen years. It was scary and exhilarating and exhausting. And came with a funny story, which always works for me.

This has been a long time coming. My boyfriend is a skilled bicyclist, he can maneuver himself around on the thing like it's an extension of his body and he makes it looks effortless. It's very impressive. He's been trying to get me to bike with him for ten years, since we started dating, but I've always declined because a) I didn't have a bike that fit me, and/or b) my knees hurt, and/or c) I have terrible balance and am scared. But need for transportation more efficient than my feet and less expensive than my car made me rethink it, and several months ago I finally told my so thrilled boyfriend that I was ready for a bike. Then he started building me one.

I know, BUILDING it.

A note about my boyfriend, and our relationship: We are freakishly symbiotic. We have a few things in common, like a silly sense of humor and a love of sci-fi, the beach and good food, but in most ways we are total opposites. He is mechanical-minded and extroverted and impulsive, while I'm more cerebral, introverted and methodical. He knows how to do EVERYTHING I don't, and vice versa. So, yes, my boyfriend can build me a bike, and I can barely stay on one.

After months of anticipation I finally got on it last night. I had several false starts as I tried to find my bearings. Balancing is harder than I remember. I found that I am much more comfortable starting out with my left foot, but it's my left knee that gives me more trouble, so that was a little frustrating. And we had trouble finding a good compromise between the bike being tall enough so I can extend my legs while pedaling but short enough for me to get off and on without pulling a groin muscle. This is definitely going to take practice.

So, I finally got up on the thing, and moving. We went a few blocks and I practiced changing surfaces, turning, and not veering off into the gutter. I was starting to feel more comfortable, but was getting tired so we started back home. I was in the lead with the boyfriend a few seconds behind me, watching my six. Suddenly, a dark figure lunged out at me from the dark, "ROOOOOOAAAAR!" and then stepped back, laughing. It was a young teenage boy with a skateboard, backed up by a few of his friends. I recognized his intent a split second before he shouted, so he didn't startle me much, and luckily I was earplugged up on that side so I managed to keep the bike moving in the correct direction. But I did mutter a mild profanity and jerk a little, which he laughed at like it was the funniest thing that had ever happened. As I passed them I felt irritation, but only briefly; they had won the first round, but I had an ace in the hole for the next.

The boys laughed gleefully as they watched me teeter away slowly and took no notice of my boyfriend as he approached them from behind. Once he was nearly on top of my attacker, he turned the bike sharply and shouted, "AAAAH!" in the kid's ear. The boy gave a high-pitched shriek and fell backwards, flailing all the way. His friends roared with laughter, this time at him.

My boyfriend is so romantic. I swooned. And cackled all the way home.

So, we only went about a mile, but I used muscles that I haven't in ages, and my head is totally done. But, I really liked the breeze in my face, and it's been a long time since I felt that sort of freedom.

I can't wait to get back on.


Wednesday, September 8, 2010

The Results Are In

The short: slightly high cholesterol, low vitamin d and slightly elevated esr.

The long: I knew I was going to come up with some unsavory results. I have been WAY too self indulgent with food. I'm in pain, so I easily fall into the food tastes good/makes me feel good trap. AND my preferred method of pain relief is notorious for it's tendency to increase appetite, and I have definitely fallen victim to the munchies a time or two. Or three hundred million.

And then there's the low exercise. Exertion fires my head up real good, so any exercise is a careful, gentle and sometimes non-existent thing. I walk on my treadmill, or outside, as much as I can, but it's not enough. EVIDENTLY.

I was worried about diabetes as it tends to run in my family as we age/widen, but I came out in the clear. Weirdly, not two hours after I thought to myself, "At least I'm lucky that my sugars are ok!", I found out that my closest friend was hospitalized with a surprise! you're diabetic! crisis. He's okay, thankfully, but weird, right?

So, my sugars were good, but my cholesterol was high, 218. First thing I did when I saw that was take a fish oil capsule. I'm going to be cutting way back on the dairy, and try to introduce more fish into my diet, however intimidating it may be. And the exercise, well there's not much I can change there but I did add some light weights to my treadmilling, for a few minutes every walk.

Having low vitamin d wasn't a big surprise, it's common among migraineurs, and I don't drink cow's milk or go out in the sun much. I like to say that I take a daily multi, but I only take it weekly, at best, unless I'm feeling ill. Just lazy habits, really. So, now I'm taking it every day, like a good girl.

Now, the elevated esr was interesting, as it indicates inflammation in the body. But that could be head related or arthritis related and though it's out of the normal range, it's not much to work with. Hopefully one of my doctors will have more information on that.

So that's what's next: I'll be going back to my pcp to touch base over these results and I'll also be seeing an acupuncturist! Exciting!


Sunday, September 5, 2010

Staying In

I'm skipping a family get-together today. And here's why:

1. It's hot and sunny. Neither is great for my head.

2. I'm in a bad cycle. I drank caffeine two days ago and am still paying for it. Nausea, dizziness, mood swings and my good buddy pain are unrelenting, despite medication. So, faking the funk for the sake of being social is pretty impossible right now.

3. We'd be taking public transportation. The car needs money that we don't have to be legal, so we've been borrowing cars, walking and bumming rides everywhere for the past few months. Today, none of those was possible and though public transportation is an option, it is often crowded, loud, and smelly. And there would be mandatory walking, which is no good in combination with points 1 and 2.

I can't help but feel guilty. I love my family. I miss them terribly. But I am exhausted.