How dare you judge how I treat my pain!

March 26, 2013

This has been a very bad pain week. I have a guess about why things are so bad, but it doesn’t help me to fix the problem. On our lovely pain scale (we all know that scale, don’t we?) I had a lot of time at 2s and 3s for a while. Lately it’s been at 5s and 6s. I can handle that. I don’t like it, but I can handle it. But when it was getting into the 7s and 8s and 9s and disturbing my sleep for several nights in a row, something had to change.

Two nights ago I slept for only 4 hours, and it wasn’t great sleep. The pain woke me up often before getting so bad that even dozing was impossible. Long before dawn, I lay in bed and knew I wouldn’t be sleeping again that night (morning?) I thought about getting painkillers. I take them very rarely because I don’t like the side effects. I take them so rarely that my last set expired ages ago and I’d thrown it out. When their office opened, I could easily call my doctor and have a prescription sent to my pharmacy, but did I really want those side effects? And let’s face it, it only helps occasionally and minimally. I really hated that idea.

Some of you may know that medical marijuana was approved in my state in last November’s election. I’ve written my views on it before, and they haven’t changed. So you may think this is a good option. Unfortunately, the regulations have not yet been written by the state group in charge, and probably won’t be for several more months. Without regulations, doctors won’t prescribe it and there are no dispensaries to sell it. Still, what other options did I have?

Around 5:30am I was exhausted, in pain, and really pissed off at my body. First I emailed one of my medical practitioners and asked if the prescription painkillers would interfere with any of my current meds or supplements, just in case. Then I emailed a friend and told him about the horrible pain. I asked him to put me in touch with a friend of his who sells pot. I was going to write to a few more friends who might be able to help, but I was just too tired and in too much pain to type. I figured I’d write to them later.

The doc wrote back that I’d have to discontinue a couple of things but that it wouldn’t be a big deal to take those painkillers. But I still didn’t want to take them. I dreaded it. Then the friend texted me. We spoke on the phone and he said he had what I needed and would give it to me for free because it was a tiny amount. He wasn’t kidding – the scale had trouble registering it. Even with the plastic bag it was barely a gram. But it was enough to see if it would work.

I knew I wouldn’t go to jail for this. Even if I wasn’t protected by the medical marijuana laws, marijuana was decriminalized in this state a while ago. At worst there would be a fine. But there’s still the stigma. I told a couple of friends, though. People joked about it, not understanding that my goal wasn’t to get high, just to get away from the pain, and that it sure as hell wasn’t a funny situation to me.

The thing is, I can’t smoke. My lungs just won’t go for it. So I have to eat it. I looked up online how to cook it, then went through the process. The last time I ate it, I got really paranoid (but it got rid of the pain!) Of course, it turns out that what I ate was incredibly strong and I didn’t know. This time I was dosing it myself. I did about half of what I figured I should, and just hoped it would work. Thankfully, it did. I didn’t really get high. I was a bit mellow and smiley, but that was it. The amazing part was that I wasn’t in pain! I walked down a few stairs and it didn’t hurt! I held the tv remote in my hand, and it didn’t hurt! And then the best part: I slept! I slept deeply for about 9 hours and it felt great! I slept without noticeable pain. Today, I feel like a new person. Sure, I’m in pain, but I feel a lot better just from having slept. I won’t have more pot today because, really, if I took it whenever I was in pain, I’d be on it all the time. But if the pain gets worse, if I can’t sleep, then I’ll have more in a day or two. And at least I know it’s a decent option with no unpleasant side effects.

The interesting thing was when I told a friend about it this morning. She’s no stranger to pot. She smoked a bunch of times in college, and always thought it was weird that I didn’t try it until much later, in my late 20s. But as she’s gotten older, she’s gotten more conservative. She made a face (you know the type) and said how she’s not so sure about this whole medical marijuana thing. It’s not safe. It’s addictive. It shouldn’t be legal.

I was shocked. I pointed out the supposed safety of prescription painkillers. And their levels of addiction. And their side effects. She stopped talking, but I don’t think I convinced her; I think she just knew she was wading into dangerous territory. It’s one thing to suggest a better treatment, but dumping on the best treatment method I’ve found for myself? She knew I was about to get very pissed off. So she backed off. But now I wonder… should I try to make her understand? Because if she’s judging me, she may judge someone else. And she won’t speak up when she hears someone else making the same judgments.

I get very angry when politicians make these judgments, and it’s just as bad, or maybe worse, coming from friends who should understand my situation. I am not hurting anyone. But by denying a treatment, they are hurting me. How dare anyone judge how I choose to treat my pain? Especially when they themselves are not experiencing pain every single damn day of their lives. How dare they?!? If they have a headache, how will they feel if I take away their Tylenol? For that matter, what if I took away something that’s really not all that helpful or healthy but widely used, like coffee? Let’s make coffee illegal on the basis that it’s unhealthy and addictive, and then let’s talk about how people make decisions for their health. I bet a lot more people would be saying it should be a personal choice. Well, if coffee should be a personal choice, then so should medical marijuana.

At the end of the day, this is my body. It’s my pain. If I can lessen the pain in a way that won’t hurt anyone else, then why on earth would that be a bad thing? And what would give you the right to judge me for it?

2 Comments | Decisions, Educating, Fatigue, Frustration, Medication, Pain, Politics, Rants, Symptoms | Permalink
Posted by chronicrants

Should I go out tonight?

February 14, 2013

I think for healthy people, this question only comes up when they don’t have plans, or if they’ve been going out every night and feel that they need a night in. For me, this seems to come up constantly. I’m always weighing how I feel and how much I want to go to something against what I might miss out on in the future if I do go out. Today, the decision is whether or not to go to a Valentine’s Day singles party tonight. Yeah, I know, but it’s not as bad as it sounds. It’s a great group where I’ll know a bunch of people, and I’ve been to their Valentine’s singles party before and it was fun.

I haven’t been doing much lately. Tuesday I didn’t leave the house at all, and just had my sex-friend over for a couple hours. Yesterday I only went out briefly to a chronic illness group for an hour. And today I haven’t left the house at all. So it would be nice to go out.

Then again, I slept horribly last night. I woke up at 3am and only dozed on and off after that. And I have a day full of activity planned for tomorrow. Plus there’s the hassle of getting dressed up and having to put on a happy face. If I knew this event would happen again soon, I’d be happy to stay in and just do this next time, but unfortunately, the next one is a full year away.

Reasons I should go out:

  • I’ll see a lot of friends I really like.
  • I might meet someone interesting.
  • I can practice flirting.
  • Maybe someone will flirt with me.
  • It would get me out of the house and interacting with people.
  • I’m pretty certain I’ll have fun if I go.

Reasons I shouldn’t go out:

  • It will take away my remaining spoons, and possibly cause a deficit.
  • I might be too worn out to have fun tomorrow, which is a one-time family thing.
  • Because of the snow (and the resulting parking shortage) I can’t drive, so I’d have to risk taking the germ-infested subway.
  • I’ll have to either shake hands with a lot of people, or else come up with a reason not to shake hands that doesn’t drive away the flirtations.
  • I’ll have to answer the question “What do you do?” over and over and over and over. I hate that question.
  • I’m not ready to date yet.

I’m leaning towards staying home, but I just can’t decide. I keep thinking about all the friends who will be there tonight, so even if I don’t meet or flirt with anyway, I know I’d have friends with them. What holds me back is tomorrow. I must have energy for tomorrow. An elderly relative is in town and this could be the last time I see him, since I can’t travel and he might not be able to either after this. If I knew I could do both it would be different. But since I can’t be sure….

What would you do?

2 Comments | Decisions, Expectations, Frustration, Isolation, Limitations, Parking, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Using sex as a treatment method

February 12, 2013

Every week WegoHealth hosts a Twitter chat for health activists, and today’s chat was about sex and sexuality. Then a couple hours after that I actually had sex, a rare occurrence. So with sex on the mind, how could I write about anything else?

I don’t have sex as much as I’d like. I haven’t been dating much, and I only sleep with people with whom I feel a connection, so sexconvothat really limits me. Then a couple months ago, I got a text from D. D and I dated many years ago. Then after we dated, we slept together on an off for a couple of years. Then we lost touch for several years. We’d known from the start we’d never work out as a couple – he didn’t believe in monogamous relationships and I wasn’t interested in anything else. Still, he’s an excellent lover, and he thinks that same of me, so we kept having sex. I’d thought about him often in the years that we’d lost touch, so I was pleased when he texted me. We’ve been together several times since, and it’s been great. I have to be on guard that I don’t get emotionally involved, but aside from that, it’s all good. We get along great, we trust and respect each other, and we each think the other is fantastic in bed. Since I’m not dating anyway right now, this is just about perfect. (It would only be more perfect if we could sleep together more often.)

There’s another thing about D: he’s ok with the health stuff. When I first told him, he didn’t bat an eye. He’s always been Feelin' Satisfiedsupportive, without trying to “rescue” me. A lot of us know how rare that is. I once wrote that three different times I have crapped on a guy during sex. He was one of those guys, and he just shrugged it off and suggested we take a shower. Fantastic, right? Even tonight, in the middle of things, he kept starting to grab my arm, then stopping. Then I realized why – I told him he could grab it and it wouldn’t hurt me, and he immediately did. When we were together years ago, that would have hurt, and he remembered and was trying to be careful.

The point is, I can trust D around the health stuff. And that’s why I didn’t cancel on him tonight, even though the past 24 hours had been lousy. The fatigue hit hard last night, for the first time in a month or two. That was physically horrible and mentally discouraging. Then I woke up during the night to a lot of gas, cramping, constipation, and diarrhea. It was a terrible night. It took me several hours to get back to sleep. I woke up in the morning feeling lousy. I got out of bed late. I had no appetite most of the day. I spent most of the afternoon (I spent the morning in bed) watching tv, which I never do anymore. Usually when I have nothing to do I read, but I didn’t have the energy for that today. And to add insult to injury, the hormone mess meant that my sex drive was almost gone. I hadn’t been having sex fantasies, masturbating, or even feeling an urge for sex lately.

So why didn’t I cancel? Several weeks ago I was having a bad day when D was supposed to come over. I was in a lot of pain, and had been for days. I figured it was worth adding to the pain with sex. I’ve written before that sex can help with pain (this is true for me, but I’m not a doctor and am not giving you medical advice,) and that time a couple weeks ago it really did the trick. I felt much better afterwards, with the pain almost completely gone. I figured it was worth seeing if sex might help again today.

And help it did. It helped on many levels. Physically, I think it gave me needed exercise, and will contribute to better sleep tonight. He also gave me back my sex drive, which felt (and still feels) fantastic. Emotionally, it felt great to be close to someone and to cuddle for a while afterwards, having him hold me. Plus, I always feel wonderful about my body after sex. I feel sexy and desirable. Usually I dislike my body. I’ve always been comfortable with my appearance (except during Prednisone-fueled weight gain) but I don’t like the illness parts. This leads to a lot of negative thoughts about my body (such as I hate that I feel like crap! and Why does my body suck so much?). But it’s hard to have negative thoughts about my body after a half dozen orgasms, and after watching D’s reactions to my touch. Besides, how broken could my body be if I’m still capable of making someone scream like that?

Sex won’t solve all my health problems, even in the short term. And sex with the wrong partner won’t help at all. But when it helps, oh boy does it help! I’m not about to miss out on that.

10 Comments | Decisions, Educating, Expectations, Healthcare, Limitations, Medication, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms | Permalink
Posted by chronicrants

Paranoid or realistic about symptoms?

January 30, 2013

If you have multiple chronic illnesses, then you probably have a huge array of symptoms, and you probably never know if a new feeling is a symptom of an existing condition or if it’s something new.  This always leads to the conundrum: to see the doctor, or to not see the doctor.  If I went to the doctor for every new odd sensation, they’d think I was a hypochondriac.  On the other hand, I don’t want to miss something important.  It can be a fine line.

A few years back, I kept getting numbness in my left hand.  It came and went for several weeks and I just tried to ignore it.  Finally, while I was in the car with a friend who has multiple sclerosis, it returned.  I asked him for his advice and he said what I was thinking: I should get it checked out.  When I got around to it.  No rush.  As someone with a chronic illness, he understood how absurd it would be to freak out over every little thing.  I did finally see the nurse practitioner at my doctor’s office.  She declared it to be a pinched nerve and she prescribed physical therapy.  I had just finished a long round of physical therapy for my back/hips/knees and I didn’t want to expend my time, energy, or money on another round.  I asked her what would happen if I didn’t do it.  She seemed confused.  I clarified: if I do nothing, could there be long term damage to my hand?  She said no.  Could it fix itself?  She said yes, that was possible.  I decided to ignore it.  It eventually fixed itself and I didn’t have to bother with PT.

But then, there was the time I had a bad cold, with a cough that sounded horrible.  I was staying with my parents for a week in between apartment moves.  My mother kept telling me to see a doctor, but I thought that was silly.  It wasn’t until I started to cough up yellow and green phlegm that I finally admitted she might be right.  Unfortunately, by then it was a weekend, which made everything more complicated.  If I’d gone a day before, things would have been much easier.  And of course my mother was right (aren’t they always?)  I had a bronchial infection, which was helped almost immediately by antibiotics.

This week’s problem was with my eyes.  Aside from needing glasses, and not even a very strong prescription, I’ve never had any eye problems.  I see my eye doctor every year for a regular checkup, and also so he can make sure I’m not suffering any negative side effects from the years of Prednisone and Plaquenil use, each of which can cause all sorts of eye-related issues.  Then on Sunday, my eyes started to hurt.  I thought maybe I’d rubbed them too hard when they were itchy.  But they kept hurting.  I never put anything in my eye.  I can’t even watch other people put in contact lenses!  I couldn’t figure it out.  When my eyes still hurt on Monday, I was worried.  They looked normal.  They weren’t red.  But they hurt.  I started thinking about the drugs I’d taken, and I couldn’t remember if this could be a symptom of one of those side effects.  I decided to give it one more day.  I dreamed about my eyes that night and was very stressed out in the morning.  The first thing I did when I woke up was to pay attention to my eyes.  Yep, they still hurt.

Feeling like a huge ass, I called the eye doctor.  I made sure they took my new health insurance.  Then I got an appointment for that afternoon.  I drove over, feeling like I’d be laughed at.  My eyes looked fine.  I seemed ok.  The doctor even remarked on how I didn’t look like I was in pain (he said he can sometimes see the pain in a person’s expressions.)  I pointed out my medical history and my high pain threshold and he immediately understood.  Still, as he checked me in different ways and each was normal, I felt ridiculous.

And then he put something my eye and shone in a light and saw how dry my eyes were.  This level of dryness would have been apparent at my checkup just a few months ago, so this was definitely new.  And it definitely accounted for the pain.  The doctor even said that it’s a known side effect of several of my conditions, especially hypothyroid.  He told me what to do (fish oil, eye drops, set up the humidifier that’s been sitting in a corner, put pots of water next to my radiators, etc.) and sent me on my way.  My eyes felt the same, but my stomach felt a lot better as the anxiety eased.  I felt silly going in, but I was also terrified that there was something seriously wrong.  What a relief!

There’s no way to be sure which problems need to be addressed and which don’t.  It’s all a guessing game, trying to use a biased gut reaction to decide.  Sometimes we’re right and sometimes we’re wrong.  Sometimes we’ll never know.  The night I had diarrhea over and over, each time containing blood?  Maybe I should have been checked out, but an ER on a Saturday night would have been torture.  I’ll never know if I made the right decision (but it did go away on it’s own and hasn’t happened since, so that’s a good sign.)  I guess the best we can do is to make decisions that we feel comfortable with, and about which we won’t have any regrets.  If we can do that, we’re probably ahead of the game.

As for my eyes, I’m just glad I made the right decision to get checked out yesterday.  Now if I could just get the drops in my eyes instead of on my cheeks….

4 Comments | Decisions, Frustration, Healthcare, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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