How little pain should I expect?

May 5, 2016

So many doctors have made it clear: I shouldn’t expect to ever live a life without pain again. Ok, I’ve accepted that. But lately I’ve wondered: should I raise the bar for my own pain relief expectations?

I’ve been watching friends, acquaintances and strangers online dealing with their chronic pain. They complain about their pain, while still trying to live somewhat normal lives. They complain that they can no longer go jogging, work two jobs, carry heavy loads, or climb a lot of stairs. At first I’ve thought, “well of course you’re in pain, you shouldn’t expect to still be able to do that.” But then I thought, maybe they should. Maybe I should.

Obviously there are limitations. I’ll never be able to jog. Or work two jobs. Or for that matter, carry heavy loads or climb a lot of stairs, either. But maybe I should be able to do more than I’m doing now without feeling so much pain.

Some days it isn’t that bad. It’s nothing more than a nuisance. But then, I never try to do anything pain-inducing anymore. I don’t think about it. I simply haven’t done those things for so many years that it never crosses my mind to pick up something heavy, reach out my arm at a certain angle, or sit still for a long time. I shift my position constantly without realizing it, because over the years I learned it was necessary and I did it so often that it became automatic. But maybe I should be able to sit still for longer without feeling pain?

There aren’t a lot of options. I don’t like using prescription painkillers because they upset my stomach and it doesn’t seem worth it. I’ve tried NSAIDS, steroids, Plaquenil, Cymbalta…. it’s not like there are a lot of prescription options left. I try nonprescription things too, mostly through my naturopath.

But today I opened the door for a new possibility. I registered for medical marijuana. The United States is a funny place. I know a lot of you aren’t in the U.S. so basically, marijuana is illegal on a federal level, but some states have made it legal. That means that technically you could get in trouble for having it even in those states where it’s legal, but chances are the feds won’t bother you unless you’re a big player of some sort. On top of that, our current federal government has specifically said they’d lay off. It’ll be interesting to see what happens after the next election. But I digress….

As I was saying, I registered for medical marijuana today. I paid $200 to see a doctor, because none of the doctors who do this are covered under insurance. In a few weeks I should have my license from the state. Then I can buy medical marijuana, also called cannabis, but going to a dispensary (there are about a half dozen in the state so far.) I learned about the different strains. It’s possible to get strains of cannabis that help the pain, nausea, or other symptoms without getting you high. That’s what I’ll be aiming for.

But what’s my goal? When I walked in the door today thinking that I wanted to use it for the days when the pain is the worst. The thing is, the people I spoke to there acted like I’d be using it more often to help the pain more often. After all, hadn’t I just said that I was in pain all the time?

I have no intention of using it all the time, of course. But maybe I could use it more, so that instead of only using it on the worst days, I use it on all be the best days. Because shouldn’t my goal be to feel as little pain as possible?

Obviously I have to wait and see how I feel once I start. Maybe I’ll want to use a lot of it, maybe not. I’ve used it before, so I know that I’ll at least want to use it for nausea and digestive pain. It’s a miracle for that. But what about my joints? If it helps my joints, should I try it? And I learned today that it can help fatigue. That could be a life-changer!

I don’t expect this to cure me. I don’t expect to be pain-free. I don’t expect to walk 5 miles or lift a 5-year-old. But maybe taking a swim and cooking dinner the same day should be a reasonable thing to expect?

How do you set your expectations? Our abilities and symptoms are all so different, but we all have the same problem of figuring out what limitations are reasonable and what aren’t. How do you figure it out? Please comment and let me know!

9 Comments | Decisions, Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Limitations, Medication, Pain, Rants, Symptoms | Tagged: , | Permalink
Posted by chronicrants

My fertility isn’t your business

April 29, 2016

Why do people keep trying to convince me that I’m able to have kids?

Ok, I know the answer. It has to do with them wanting to give me hope, them not wanting to see someone give up on something wanted, them not wanting to admit that they might also fail to have the children they want… them them them. It’s not about me.

But it still bothers me.

When I was in my late 20s I decided that I didn’t want to pass on these genes. I had an entirely unhelpful diagnosis of Undifferentiated Connective Tissue Disease. That roughly translates to some-sort-of-connective-tissue-disease-but-we-don’t-know-what-or-how-to-treat-it. I was looking at 60 years of pain ahead of me and I wasn’t happy about it. No, I couldn’t pass that on to my kids.

But even as I said it, I still hoped I’d somehow have kids. I might adopt. I might marry someone with kids. Maybe I’d marry a woman who wanted to get pregnant. But it still hurt that I’d never be pregnant myself. I’d always wanted kids.

When we had room for an elective in high school, my friends took art and drama. I took a child development class. I started babysitting at 12 and continued to babysit regularly for many years. I was a camp counselor for 6 summers. I always loved kids and always assumed I’d have some of my own. And I didn’t just assume it because that’s the societal expectation (though I’m sure that was part of it,) but because I really wanted kids. The question wasn’t if. It was simply how many and with whom?

So this was a major change in thinking, and it really didn’t help to have people constantly suggesting that I should still have kids. They’d tell me that there was no guarantee my kids would have what I had (and they’d conveniently forget there was no guarantee my kids wouldn’t have it!) They’d say someone might find a cure. Right.

As I moved into my 30s, that conversation stayed about the same, it just became less frequent. My friends knew where I stood, so there was no point in talking about it. No one else brought it up.

But in the last couple of years, something shifted. It’s probably my age. Now that I’m at the do-or-die stage (so to speak) people are asking if I plan to have kids, because if I don’t have them soon, I never will. Ok, I get that. And I don’t really mind that question. What I mind is that they don’t accept my answer!

If I say no, they ask why not. I sometimes say I’m too old, because that’s a convenient answer. But it doesn’t work. I then hear about how their sister’s friend’s coworker had a baby at my age. I point out that their sister’s friend’s coworker was probably married at my age. And already trying to get pregnant. And ready to have kids. And she probably carried the baby for around 9 months before that. I see them look surprised as they do the math. Yeah.

The truth is, I’m single, and I have no intention of having kids alone. I also never wanted to be an older mom. There’s nothing wrong with it, but it’s not for me. I don’t want to be 60 when my kids go off to college. I don’t want to pass along these genes, but that doesn’t bother me as much as it used to now that I have some diagnoses and some treatments that would have worked great if they’d been used 15 years earlier. But I’m still in my late 30s and I’m single, and that’s a problem. Plus I have fertility issues that – funny thing – I don’t go around telling everyone. So even if I can get pregnant, and we don’t know if I can, there’s a good chance it would take a few years.

I think it’s time for some math. Let’s say I meet the love of my life tomorrow. Unlikely, but let’s pretend. We date for a year and then get engaged. I don’t care about a big wedding and let’s say they don’t either, so we’re married 6 months later. Then we start trying to get pregnant immediately. It takes at least 2-3 years to get pregnant. Then 9 months of carrying the baby. We we’re talking around 4.5 years from now. By then I’d be in my 40s. That’s a hard time to get pregnant even for someone who’s healthy!

And that’s if we don’t consider the other reason I can’t see having kids: my symptoms. I can barely take care of myself right now. I struggled to take care of a dog. How the fuck would I take care of a baby?!? Or a young child?!? I’m exhausted after an afternoon with my nephew. I visit my friend and her family for 3 days, she does all the cooking, I stay home half the time she takes the kids out, and it’s still more than I can handle. I couldn’t do that every day without doing real harm to my body. Other people do it. Plenty of you are parents. And I applaud you! But I don’t see myself handling that well right now. And it would break my heart to not be able to pick up my child. But that would be the reality.

And then of course there’s the pregnancy itself. My hormones, my joints…. I don’t see them faring well.

And as if that’s not enough, there’s the part where I honestly don’t know if I’ll ever find someone I want to marry, much less make that happen this year. But see the math above – this year would already be too late for me.

These are all very legitimate reasons to assume that I won’t be having kids. But why should I tell strangers and acquaintances all of this? Why isn’t it enough for me to say no, I won’t be having kids unless I marry someone who already has kids? Why can’t people just believe me and move on?

Probably for the same reason they can’t let it go when I say, “I’ll never be cured.” But that’s a subject for another day.

What about you? Do you deal with this? How do you handle it? What do you say? Please comment and let me know!

4 Comments | Educating, Expectations, Frustration, Insensitive, Intrusions, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

I never wanted to be one of those paranoid people

April 26, 2016

We all know one of those people. They’re super paranoid about what they eat. Was the chicken cage-free? Was the feed free of antibiotics? What exactly is in that dish? What IMG_20160426_141926brands of ingredients were used?

I was never going to be one of those people. Ugh!

And yet, I am.

When I first went gluten-free, I avoided bread, pasta, and other obvious foods. Over time, I started eliminating more and more. Then I paid attention to non-food items, like toothpaste and floss. I was doing a lot better, but I was still sick.

I made phone calls. I checked on hand lotion and sunscreen. I washed my hands before I put anything in my mouth – even a Tic Tac!

I learned about surprising places gluten hides, like lemon juice and cooking spray and got rid of those.

Still, I was getting sick.

Then I found out about kissing. Damn it! If I kiss someone who has been eating or drinking gluten, I’ll get sick. Well, that makes dating a lot more awkward! So I’ve been careful about that, too.

Still, I was getting sick. It was a lot less often, but it still happened. What was going on?

Then I spent 6 weeks at home recovering from foot surgery. I barely left. I ate only food that I’d prepared or carefully checked. And I didn’t get sick once. Hmm…

It felt amazing to not get sick at all!!! I wanted to keep that up! But how? I started being super careful about everything. Ok, I was a bit paranoid. I didn’t eat anything unless I was absolutely positively certain that it was safe. If a friend said something was gluten-free I quizzed them carefully, and then I probably still didn’t eat it. But it was worth it. I remained ok!

Last weekend I went to a family sedar. My mother hosted and was her super wonderful, considerate self – except for the matzah and matzah ball soup, the entire meal was gluten-free. Still, when she and my aunt went into the kitchen to get the food, I asked them to wash their hands because they’d touched the matzah, which has gluten in it.

I’d become one of those people. I hate it. But you know what? It’s a hell of a lot better than being in so much pain. So I’ll keep on being one of those people. So be it.

Leave a Comment » | Expectations, Frustration, Gastrointestinal, Isolation, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

The reminder system all doctors should use

April 14, 2016

Sometimes it’s helpful to get a reminder about a medical appointment. But sometimes it’s just really annoying.

When they call at 8:30 and I’m still asleep, I don’t want that call. When I’m busy, I don’t want that call. When I have 5 appointments coming up and they all seem to call on the same day, I definitely don’t want those calls.

Except I sort of do. Reminders can be helpful when I’m dealing with dozens of appointments every year.

And that’s why I think my dentist’s reminder system is brilliant and I don’t understand why more don’t do this.

3-28-2016 12-40-29 PM

See this email message? How great is this?! As soon as I make an appointment I get this message. I click on one of the options. If I don’t want a reminder phone call I won’t get one! If i click to be reminded, they send another email a few days before the appointment. If I don’t click on any of the options in that message, they call me. If someone doesn’t want to give the office an email address, they call instead.

Yes, I’m sure this isn’t cheap for them. But then again, think of all of the staff hours they save by not having someone calling all of their patients! And instead of leaving messages on voicemail systems that might be garbled, they get to send a clear, simple email message.

And on my end, I find this so much better than a phone call! It’s not disruptive, I can easily see the date and time, and it’s quick and easy to respond.

A simpler version is the bland, impersonal, highly useful email I get from my naturopath a couple days before each appointment. I don’t know if she sends those manually or if they’re automated, but either way, they’re simple. They remind me of my appointment. They say the date and time. I don’t need to respond. I don’t have to do anything. I don’t even have to deal with a phone call.

Some people prefer phone calls, and it’s great that they still have that option. But it’s 2016 now. It’s about time more medical offices catch up and use email to confirm appointments. Then maybe in another 20 years they’ll be ready to use apps!

Is this unusual? What do your medical providers do? Please comment and let me know – I’m very curious!

10 Comments | Healthcare, Rants, Raves | Tagged: , , | Permalink
Posted by chronicrants

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