Doctors, and Symptoms, and Pain, Oh My!

I think my head hates the summer.

Either that, or I'm just getting worse.

I'm tired all the time. My head hurts all the time. I'm irritable and depressed. I can't think, I'm having trouble sleeping, and I feel completely out of control. I'm glued to my couch. I'm getting visual disturbances almost every day. Just movement in the corner of my eye, or floating orbs, or everything seems to glow a bit. The tv is practically muted, or I have earplugs in. My step-dad got my some earmuffs, which is great, since the insides of my ears get raw from using the plugs daily.

I'm watering my plants daily and cleaning myself, and that's pretty much all I'll commit to.

I really need to get a new doctor. I'm just scared that I'll have to struggle with yet another corporate puppet, er, doctor for them to understand who I am and what I need. I saw one doctor, long long ago, who got it. He was the one who evaluated me for social security. He had such a great demeanor about him, so relaxed and patient. He listened, and repeated things back to me to make sure he understood. When he asked questions, I felt like he wanted to know my answer, not that he was just checking off the list of symptoms in his head. I was almost flirting with him, I liked him so much, which is totally unlike me in a doctor's office. I hate them and feel no flirty feelings ever anywhere near a doctor's office in which I am going to be examined. Just, no. I asked the nice doctor if he could be my doctor. He smiled at me, obviously pleased to be wanted, but declined gently. He worked for the government or some such nonsense, I don't remember, I had a headache. Remembering that doctor gives me hope and makes me a little less afraid.

I need to learn how to interview doctors. I need to have the energy to interview doctors.

I think I'm spent. I'm gonna post this, unedited, so if it's unintelligible or hard to follow, let's blame my head and never speak of this again.
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Neti Pot

I was really excited to get one of these. So excited, I bought another one as a gift for my step-dad. I couldn't help myself. I just had to share the joy of nasal irrigation with someone I love.

My headaches are often behind my eyes, and can resemble sinus headaches. I also have hay fever, which leads to feeling stuffy, itchy eyes and sneezing fits that leave people staring at me. The sneezing fits don't do much for my head pain, either. I've been hearing for years about the benefits of neti pots, how they clear the sinuses and can improve the immune system. I've always been a little hesitant to try them because of my past sinus issues. Besides worrying about introducing contaminants and washing away defenses, I was concerned that my sinuses may not be structurally the same as everyone else's, due to a birth defect that was corrected by surgery. I have no idea what's going on up there, honestly. But last winter, when I got my annual head cold, I got desperate and I decided to try it, carefully. I got in a steamy shower for a few minutes, for some preliminary loosening. (Whether this contributed to my success, I have no idea. I just report the facts.) I grabbed a bottle of water and some table salt and poured it in each nostril in turn, like I had seen in the neti demonstrations. It was only partially successful, due to clumsiness and some serious congestion, but I did experience relief and decided then that I would invest in the proper tools, as soon as I could afford it.

So, now I can, and I did, and I tried it for reals a few days ago and I looooove it. At first, it felt wrong, like getting dunked in the pool. Then something in my head kind of gave and I felt the water gently flow from one nostril, into my sinus(es) and out the other. I wanted to giggle when it first started working. The sensation is almost tickling, but if the salt content isn't right, it can burn. Once I had rinsed my sinuses via both nostrils, I did a some "forceful exhalations" to flush the rest of the water. I do this gently, as to not provoke my head. I always end up with some drip running down my throat. Somewhat unpleasant, but brief. At first, I usually feel the same, if not a little stuffier. But after a few minutes, I am as clear as I've ever been. A sixty second wash leaves my sinuses feeling like I just got out of an hour long steamy shower. My ears itch less and my eyes even feel a little clearer. The neti pot definitely helps. It isn't a cure for anything, by any means, but it clears me up and keeps the sneezes at bay, for a little while at least.

I can't wait to get sick so I can really see what this baby can do. More...

My Head Takes a Trip to THE City

I live in a city. One with skyscrapers and night clubs intermingled with vegan delis and art galleries. But our shopping it not good. The smaller boutique shops are full of cheap, trendy items that fall apart of leave me itchy from the synthetics, and we simply don't have any department stores. Sure, they are in more suburban areas of the city limits, but we were looking for the whole enchilada. My mom had heard tell of a mythical multi-story discount clothing store that was nestled in the heart of our local metropolis, so we decided to trek the 45 minutes on the freeway to THE city to discover its earthly delights.

Hint: There's a hideous orange bridge that we seem inclined to call golden, and there are a higher than average percentage of people who are not allowed to marry. Yet.

We left my city at about 8:30am. My mom drove, and my geographically talented boyfriend navigated. I sat in the front seat with my head still and my sea-bands firmly pressing into that magical pressure point that was keeping me from feeling too barfy. With an umbrella, two joints, a couple cough drops, a soma, a super-motrin, two pairs of earplugs and menthol chapstick in my purse and three icepacks and eight bottles of water in the cooler, I felt as prepared as I could get. We hit traffic and my mom stressed a little. Not sure if it was the pitch to her voice or the stop and go motion, but my head started in on me right then. I got out an icepack and wore it for the rest of the ride. Once we got up there, there were more navigational adventures, which I tuned out. I'm not good with maps. Or bizarre six-way stoplights with vague lane changes.

We landed in the ridiculously overpriced parking garage in THE city at about 10am. We got a small breakfast and headed to Ross. It was four stories. We were there for about two hours. It was not fun. The money you save on clothing is taken out on your sanity. It was crowded. The aisles of racks of clothes are so close together, two people have to practically hug to get around each other and not knock anything over. There were a lot of people there, too, for a Tuesday. I was hoping to find the place deserted, as it often happens in my city on weekdays, so I could browse the racks slowly and quietly. Instead, there was a lot of people, wearing gallons of cologne and all either walking slowly in front of me or walking so closely behind me that they stepped on my shoes (twice!). And of course, there were the standard staples of the department store: harsh lighting and soul-sucking sessions in the fitting room. I spent the last 30 minutes of our visit sitting on the floor in housewares with my sunglasses on, just leaning against a wall. Sucking on my water bottle and fighting back the tears (mostly successful), I wished my eyeballs would just fall out of my head already.

I was hoping to be able to medicate myself effectively while we were up there, but I was already way past soma or ibuprofen, and there was nowhere discreet to smoke. We were in such a busy area, there was nowhere to go that did not have forty-thousand other people already there. I considered asking a cop if there was anywhere I could go, but my mom convinced me not to. In hindsight, I really should have. The worst he could have said was no, since I would only be asking for a place to legally medicate. Next time.

So, without anywhere to smoke and my head giving me a right beating, I was given the opportunity to leave. I suggested that we instead get lunch, thinking that if I got some protein and a little caffeine in me, and could just sit for a little while, I might be good enough to hit another store. It took me twenty minutes to decide on what I wanted, with a headache confusing me and nausea convincing me to put down everything I picked up. I finally settled on an albacore tuna salad and a couple spicy tuna rolls from this awesome little grocery store deli. I sat and ate and sipped my soda. I felt better. We went to Old Navy and shopped for another hour or so, which officially tired everyone out.

I rode home in the passenger seat, sea-bands fighting my nausea for me and the last cold icepack in the cooler on my head. I was in a hell of a lot of pain, after all that, but happy. I'd found a new purse, a cute summer dress and a pair of earrings. I'd spent a good part of the day with family, laughing and being silly. And I knew for sure I'd sleep good that night.


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Frustrated and Elated

Let's get the negative out of the way: My head hurts! And I am SO. FRUSTRATED.

Obviously, the pain isn't anything new. But I just had a very good friend in town whom I didn't see because I had plans. She was in town for several days, but because I made plans for four hours on just one of those days, I wasn't able to pick up my head off the floor long enough to visit. Which makes me flaky, friendless, angry at myself and my uncontrollable disability.

I'm supposed to go for a day trip to the city this week. I am very nervous. There will be a million stimuli and nowhere to hide. I'm going to bring an emergency kit; an insulated cooler with a couple icepacks, menthol rub, cough drops, and (especially) earplugs. I'll wear my sunglasses indoors if I have to. Luckily I'm going with my mom and my brother, who are two of the most accepting people I know. They don't judge and just let me do my own thing without asking a million questions.

I was thinking about bringing a few joints with me, but I'm a little worried about where to smoke. I want to take care of myself, but I don't want to get in trouble for smoking in public and I'm still not allowed to tell my brother, so it has to be even more down-low. Stressing about pain management is not productive.

Now for what is making me happy: My Garden! Planting and pruning and watering and caring for these living things, which give me back food, is an amazing experience for me. I've gardened before, but not like this. I always had other stuff going on; a job, or friends, or life, in general. But right now, my main job is the garden, so it feels much more rewarding than it did when I just watered when I had time and barely noticed the fruits of my labors until I ate them. Now, I admire the green of the leaves and fondle the new blossoms delicately and plan elaborate recipes involving as many elements from the garden as possible. It's therapeutic and totally non-taxing.

In fact, if you don't have anything growing around you, plant something. I promise, it'll make you feel better.

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Affording It

I've had this subject sitting in the queue in my drafts folder for a while. I haven't addressed it because we've been broke. So broke I couldn't think about it without getting a knot in my stomach. We've been fighting a lot, sometimes about money, but usually about other things that don't really matter because fighting about money is fruitless when you don't have any. With all the pain and stress that not having money was causing, I was having a hard time writing about it. It felt like dwelling on the negative. We've had to borrow, beg and scrimp to survive for the past year, and the past few months in particular. A month ago, we got a bag of groceries from the Salvation Army. There's nothing wrong with charity food. My parents have been helping out a lot, and if not for a very lenient landlord, we'd be in real trouble.



I don't have a bank account, so we've been cashing my checks at Walmart or the local rob-you-blind check cashing place. We finally just got around to setting up my direct deposit to a prepaid credit card, so having cash wasn't totally dependent on my ability to leave the house. As my ever-resourceful boyfriend was calling ssd to set it up, I reminded him that I suspected my financial information was incorrect and that they had to be paying me too little. I mean, I know disability checks aren't usually spent of caviar and sports cars, but I really can't afford more than ramen and a bus pass. So, he updated their information and they said that they would pay me retroactively as soon as they determined the amount due. Now, last time they said that, it took six months, a hundred thousand phone calls (roughly), three tearful visits to the local office and one really expensive parking ticket to get half of what they owed me. So, I wasn't expecting anything, anytime soon.

Two days later, the so-responsible boyfriend made a phone call to pay a bill. The card was declined. There was a hold on the account. We really needed to pay that bill, so he immediately called the credit card company to find out what happened. They report an exorbitant deposit from the US Treasury Office. It is so ginormous that they freaked that it couldn't be real and refused to release any money on the card until we provided proof. The amount is surrealistically huge. I know it would be easier to just say the amount, instead of coming up with creative adjectives, but that feels crass, somehow (and, I like creative adjectives).

Anyway, upon hearing this gargantuan dollar amount, we just stared at each other, as if each expected the other to laugh and say it was a joke. It couldn't be right. They would take it away, it was a mistake, someone was getting fired for sure over this one, har har har. Then, I cried. I couldn't believe it was true. I didn't believe it until the also-skeptical boyfriend talked to three different SS workers, one in person, and brought home a piece of paper that confirmed it, in detail. They cut me a check big enough to cover all of our bills and get us back to comfortable.

I suspect being painfully poor is somewhat like childbirth. It's so traumatic that you have to kind of forget how hard it was, to go on and still be a normal person. You'd never spend money again if you really remembered. I still get anxious when I think about it. The constant stress, worrying about having enough food, enough gas, counting down the days until the next check, eating the same meal for a week and turning down every invitation because we just couldn't afford it. We couldn't afford anything. Several months behind in rent, utility and phone payments, lacking in car registration and insurance, and so tired of chili and ramen, if we didn't have a few friends and family to mooch off of in our desperate time of need, we would have been homeless and hungry. We're very lucky.

This sudden fortune has released a lot of emotions. I'm thrilled, of course. But I'm also so frustrated at how hard we had to struggle to make our lives non-miserable for so long. I'm elated that we can pay our bills and stop driving with one eye on the rear-view, scanning for cops. (I'll still check it occasionally, though.) And I'm still a little terrified that somehow it's all going to get taken away again and we'll go back to destitute.

I don't believe in karma, but I do want to balance the scales, so to speak. I donated back to the Salvation Army. We've made sure to pay back everyone who loaned us money, in full. And our first purchases are all things that will contribute to our health and happiness. (A treadmill! A new phone! Car insurance!)

We can breathe again.






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Procreative Ponderings

I love babies. And kids. Teenagers, not as much, but I reckon if I grew one I would be attached enough not to kill it at the first sign of rebellion. At least, that's what I thought before my head turned against me. My anger has since become a flash fire. An instantaneous, rageriffic, mad-athon that usually results in me saying something awful or crying. Or both. I don't plan on raising kids with deep emotional scars, so this could be a problem.

My rock of a boyfriend takes the brunt of it. He's used to outbursts from women (he has sisters), and he assures me that my anger is nothing that he is worried about and that he understands. I believe him. I apologize if I lose control and he accepts it and forgives me easily. He considers my circumstances and doesn't take it personally. A child couldn't do that. Hell, my dog can't do that. When I raise my voice at all, she shakes and hides. Her behavior is not entirely my fault, she's done that since the first day we got her, long before my headaches let my anger get the best of me. She gets over it in a few minutes. Gets her rope toy and plays fetch with us like it never happened. It's not the same with a kid, though. Children remember. People are all made up of every experience they've ever had. If a person's mother isn't as much of a mother as she should be, the child suffers. The person suffers.

I have a brother who is on the cusp of adolescence. When my head hurts and he starts in, with whining or righteous indignation or whatever mood this next phase of puberty will bring about, it's good that I am just his sister and not the one who is responsible for him 24-7. I can do all the fun stuff when I feel good and then take off if he gets moody or if my head says it's time for quiet. Those times of mandatory avoidance are, well, mandatory. I'm afraid of what he would see if he saw me in real pain. I don't want to scare him. I don't want to be responsible for him feeling anything other than happiness and light and my pain is neither of those.

People with chronic pain have kids all the time. They take care of their families and many of them work full time, as well. I feel woefully inadequate compared to these people. Taking care of myself feels impossible some days. I wonder if that parental adrenaline would kick in, you know, the stuff that makes a mother able to lift a car to free her trapped child. But maybe I could get a low, prolonged dose. Just enough to keep me driving to soccer practice and able to enjoy birthday parties.

Fantasies of miraculous healing as a side effect of parenting aside, I worry that I am too weak to be a mother. Or too broken. I'm not giving up on the idea of being a parent, but I feel I should accept that it may never be something I am sure about. There's a chance that I'll never be fixed. There's a chance I could get worse. And there's a chance that being a mother will become the most important priority, despite head state.





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