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!


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!


My calendar says I’m recovering that day

April 19, 2016

I used to call them do-nothing days. Or resting days. Or dead days. Lately I’ve been calling them Recovery Days. Because that’s what they are. I’m not doing nothing, I’m recovering!Recovery Day

Our culture says that a day of watching tv when you should be buying groceries and cleaning and going to a job and and and…. is lazy. I say that if you have a chronic illness, sometimes it’s necessary.

I had a recovery day yesterday. I could have pushed myself. I had a long list of things to do. If I’d pushed myself I might have been able to get a couple of things done. But I wouldn’t have gotten far on that list, and I would have done things badly. Then I’d have felt lousy today and I’d have barely gotten anything done at all. Sound familiar?

I used to push myself. At the time it seemed like a good idea. Now I know that pushing myself too much just means I’ll eventually hit the wall and I won’t be able to do anything at all.

So instead I took a Recovery Day. I didn’t leave the apartment. I read. I watched tv. I heated up leftovers for meals. That was it.

And today I felt better! I was able to go out and run errands. I’m sitting in a chair and writing this now (not an easy thing!) For me, that’s a super productive day.

Sometimes my Recovery Days are predictable. I can look at my calendar right now and tell you that I’ll be taking a Recovery Day on Sunday, so that’s blocked out on my calendar. I knew I’d probably be taking one yesterday, too, but I wasn’t completely sure until around 10am. I could just feel it, and there was no doubt it’s what I needed.

I used to take Recovery Days 3-5 days per week. If I left the house for an hour, the next day would be a Recovery Day. These days I’m feeling better and I only need them 1-2 times per week – yay! Of course, even now I have bad weeks, too. Sometimes a Recovery Day means spending all day in pajamas and doing nothing but watching tv. Sometimes it’s multiple days of that. Yesterday I felt better and was able to read a novel for a while. All that really matters, though, is that I gave my body the rest that it needed, in the form that it needed.

I know I’m lucky. I don’t have children or anyone else to take care of. I’m not working (though that’s not exactly a good thing.) So I’m able to spend an entire day indoors. I’m able to rest when I need to. But there are other things I should do on my Recovery Days that I can’t. I accommodate myself the best that I can. That’s all any of us can do.

You might have noticed that I’ve been capitalizing Recovery Day. That’s because it’s IMPORTANT! I think we don’t give ourselves enough credit for how hard these days are. We let culture pressure us into thinking we’re not doing enough when in reality we’re doing so much. Sometimes, it’s all we can do to get through these days. I’d rather go to the gym for 4 hours than need some of these Recovery Days. But I don’t have a choice, and I accept that (but it took me many years to finally accept it.)

How do you feel about your Recovery Days? Are you willing to rest when your body needs it? What do you do? How do you handle it? Please let me know in the comments so we can learn from each other!


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!


Package excitement: oh how things have changed

March 30, 2016

There was a time when getting a package in the mail was an exciting thing. It still is. But in2016-03-30 12.35.09 a very different way.

As a kid, a package was a birthday gift from a far away relative. In college it was brownies and cookies from my aunt. As Amazon and other online retailers came on the scene not long after I left college, a package meant a book, an electronic gadget, or some other purchase I made for myself. I’m a bit embarrassed by how I wasted my money, but some of these purchases were really useful. Regardless, when I saw a box with my name on it, it was exciting!

I was thinking about this earlier this week when I opened a box and felt a different kind of excitement. It’s here! Finally! This box didn’t contain a book, an electronic gizmo, or new shoes. It wasn’t fun or exotic. It was….

New medical supplies!

An ASV is like a CPAP machine – it helps me breath while I sleep. )It’s used for an unusual form of sleep apnea called central complex sleep apnea.) Every few months insurance will cover a new set of supplies – a new tube and new mask. Right before I become eligible for replacements, I can feel the current ones losing effectiveness. So I was super excited for my new supplies. It meant breathing at night would be even better, and when I breath better at night, everything in my body feels better the next day!

Part of this change, of course, has to do with money, or lack thereof. I’m simply not buying stuff online as much. Part of it is age. Relatives don’t send gifts anymore. If they want to give a gift, they give a check. Don’t get me wrong, I love and appreciate checks. But they aren’t fun like gifts are. They aren’t surprising. (Then again, I also don’t get stuck with things I don’t like.) But part of it is my health. My healthy friends don’t get medical supplies in the mail. And most people who get medical supplies probably aren’t excited by them. But I’m excited by anything that makes me feel better.

And if that small improvement in health comes in a box in the mail, then you can be damn sure I’m going to be super excited!

What about you? Can you relate? How do you feel about getting new medical supplies? Please share in the comments!


There’s no such thing as a chronic illness schedule

March 21, 2016

I used to work in an office. Back then, my chronic illnesses were more manageable.

Then I worked in an office 4 days a week and from home the 5th day. That helped. But eventually, that wasn’t enough.

Now I don’t have a job at all. Still, I’ve been making some money here and there when I can. Consulting work has gone ok, but I’d like to do something different. The problem with consulting is that I have to be ready to work at a particular time and place. Sure, I can often schedule the at-home part of the work whenever I want, but I have to meet with clients too. That part is really tough with a chronic illness. And that means I can’t take on as many clients as I need to.

I like the idea of “passive income.” With this method, I do the work up front and the money comes in later, without me having to be present at a particular time and place. For example, imagine I wrote a book. I’d put in a lot of effort up front on my own schedule to write it and market it, then when it came out I’d do some more marketing, but it would be less work at that point. The money would come in, but I’d have already done more of the work from the comfort of my living at my own pace. Sounds good, right?

The thing is, the work still has to be done. And I’m having trouble making that happen consistently.

I’ve found some other people who are trying to do similar things. One is married, has a young baby, and works a full time job, yet she works on her business more consistently than I work on mine. Then again, she doesn’t have a chronic illness. That doesn’t mean her life is easier or that she has more hours in the day. I’m constantly amazed by how productive she is. But it does mean that her schedule is fairly predictable. She works on the bus to and from her job each day. She works at night after the baby is in bed. She carves out time every weekend.

By comparison, I can’t even get a morning routine going. Some mornings I wake up and can do work within an hour or two. Other days I’m not able to do any work at all, and I go to bed without having even tried. Some days I get a lot done, but it has nothing to do with the new business. Today I wrote a blog post for that business and did a bit of reading. That’s not too bad. I also filed away some personal papers, sold something on Craigslist, did a ton of texting with various people, fixed something small on my mother’s computer, cleaned out my email inbox, made some phone calls, prepared an easy dinner and did the dishes, and took a shower. For someone else, that wouldn’t sound like much. Except for dinner, they’d do all of that before they left for work in the morning and on their lunch break. But for me, that was a lot. I had a busy weekend and I didn’t feel great. I never went outside. I wanted to bake, but never got to it. In fact, there’s a lot I wanted to do that I never got to. But I feel good about having done all of that. For me, that’s really big!

And that’s the problem. The every day things in life still have to be done, and I never know which days I’ll barely be able to get those things done and which days I’ll have the energy for a little extra. That means I can’t set a schedule.

I would love to say that I’ll get up at 8am every day, eat breakfast and work until 11am, exercise (ha!) and eat lunch, do personal stuff until 3pm, then have the rest of the day free. Or maybe do more work in the afternoon. But I can’t do anything like that. Every day is so different. Today I’m in too much pain to walk down a flight of stairs. Another day stairs are no big deal. Some days I can’t doing any writing because my brain just won’t function well enough. Other days I zip off a blog post in 1/2 hour. There’s no way to plan it. It just is.

It’s hard to explain all of this to the other entrepreneurs I talk to. They can’t understand why, without a job, I can’t put in more time on my business. And I get frustrated that even on my best days I can’t put in as much time as they do on their worst. I’m trying, but it’s just not working.

I know I need a schedule of some sort. That’s how I work best. This fit-the-work-in-when-I-can method means that other things get in the way and I end up answering emails and scanning Facebook instead of working. I need a better method.

If only I knew what that was.

Edit [3/23/16]: I just came across this post today (good timing!) and want to share it. If you’re looking for a way to earn some money yourself, maybe it will give you some useful ideas.


“Affording” a home

March 15, 2016

I think it’s time to move.

I have been in my current apartment for 10 years. The longest I ever spent in one place before this was a year and a half. I didn’t mean to stay here so long, but inertia set in, and years passed, and here I am.

Every 2-3 years I look for a new apartment. I get discouraged when I can’t find anything nicer than what I’ve got for the same price, even in a less popular neighborhood. And I like my neighbors. So I stay. And then the next year I consider moving again. It’s a tiresome cycle.

But this year may just be the year. I’m tired of this. I want a change. And my recent dog experience made me realize that if I’m going to move, I should do it now, before I get a dog, because it would just be too hard to move with a new pup in my life.

In the past, I always set my housing budget based on my income and the others things I spent money on. When I moved to my current place, it was more expensive than where I was moving from, but I decided it was worth giving up some of the extras in my budget so I could afford it.

Now it’s different. My social security disability and other benefits cover my non-rent expenses and I have a few hundred dollars left over to put towards rent. But a few hundred won’t do it around here. Until now I’ve been taking the rest of the rent from my savings, but that won’t work forever.

I won’t get a roommate. Not only would I hate having a roommate, but I couldn’t share the kitchen with someone unless they also had Celiac Disease. So let’s assume no roommate. What are my options?

I can stay where I am. My guess is that my rent will be going up when I renew my lease (I’ll find out in a few weeks.) Let’s say staying here would be $1600 per month, including heat but no other utilities.

I could move to a nearby town where I’d like to live, and pay around $1500, including heat.

I could move to a town a bit further out and pay $1400, including heat.

I could move an hour away and pay only $1100, but have no friends or social life nearby.

I could put all my savings into buying a condo, with a mortgage lower than my rent. But then, when I add in condo fees, property taxes, and repairs, I’d be paying about the same as I pay in rent, but, I’d have put my savings into the down payment.

I could buy a single family house with a mortgage about the same as my rent. There’d be no condo fees, but I’d still be pulling money out of savings every month unless I could start earning more…. but there’s be less in savings because I’d have used it for the down payment.

I could move farther out and buy a 3-family house, live on the first floor and rent out the other two floors. My savings would go into the down payment, but the rent from those two apartments would cover my mortgage, property taxes, and house repairs.

Obviously the last option makes the most financial sense, but it has some problems. I’d have to move at least 45 minutes away, maybe more. That means I wouldn’t see my friends as much or socialize as much. I know nothing about owning a house. I’ve always rented. And I can’t fix anything, or event attempt to learn, because of my health problems, so I’d have to hire someone to fix every little problem. I’d have to deal with tenants. But on the bright side, if the rent from the tenants covered my costs, I could basically live there for free. Then my social security would cover the rest of my expenses (medical bills, car, etc.) and I wouldn’t have to worry about doing any other work.

I would probably buy a 3-family house if I could do it near where I am now, but it’s simply not feasible here (it would be at least $600k.)

So that brings me back to renting as the simplest, most straightforward option. But I can’t afford to rent indefinitely unless I start earning a living.

Blech. I keep running around in this circle in my mind. I look at apartments and condos and houses online and I run the numbers over and over again. I’ve done the research on how to calculate for vacancies when renting out. I’m good with numbers. But no matter what I do, the numbers just don’t add up.

The answer is obvious, really: move away. But my life is here. My friends, my social life, my chronic pain support group, my doctors….everyone is here. I can’t imagine starting over.

I’m lucky that I have options. I know that. I am incredibly lucky. I’m thankful that I saved up some money back when I was working. I’m lucky that my family has helped me out from time to time. But that luck isn’t enough to support my current lifestyle. So I’m just not sure what to do.

And in case any of you regular readers are wondering about Section 8, I’ve been keeping an eye out for places that would work with that, too, but I’m not seeing anything. And considering how inept they’ve been about processing my paperwork, I’m not exactly holding my breath that it will come through anyway. So, it’s in the back of my mind as a potential option, but I don’t think it will solve this conundrum for me….


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