One day at home too many

February 21, 2013

I used to stay home when I didn’t feel up to going out. These days I stay home when I have no place to go. Ok, and also when I don’t feel up to going out. But it’s the having no place to go that really bothers me right now, because I feel up to leaving, but I stay in anyway.

Tuesday was a busy day. I sat in a coffee shop, had some tea, and read a book. Then I took the longer route home, so I got in some extra walking. After lunch, I picked up groceries, then I saw my naturopath for a brief meeting. That would have been plenty for one day. But just as I was getting ready to head out for the groceries, I got a text message from the guy I’m sleeping with. He wanted to know if I was free that night and if I could stay over. Sleepovers are rare for logistical reasons, but the stars aligned and he thought it would be a nice surprise. So even though I knew it was too much, I went. I drove 45 minutes in the pouring rain and arrived exhausted (but quickly got a second wind when he kissed me.)

After sex it was still early, so we curled up in the living room and read for a bit. I headed to bed feeling nice and sleepy – between the busy day, the orgasms and the reading, it was definitely time for some sleep. But I’m not used to sharing a bed with anyone, much less with two people. Well, actually it was one person and one dog, but the dog is the size of a small person, and she hogs much more of the bed. And the bed is too soft (I had a wicked backache the next day.) And the pillows are too squishy (my neck is still a bit sore – next time I’ll bring my own pillow.) And the room was way too warm (I sleep with my windows open, even this time of year!) And D gets up to pee at least a half dozen times a night. And the dog repositioned herself during the night to take up even more of my space. So I didn’t get much sleep. When I did sleep, I slept deeply, but there wasn’t too much of it.

And then I woke up way too early. Normally at that hour I’d have gone back to sleep, but I had a partially naked guy next to me and a high libido, so I started something and he gladly gave up on sleep too. It’s a good thing I started it when I did – he barely made it to work on time. And when he left, I could have gone back to sleep, but what was the point? I just wasn’t sleeping well there. So I showered with him and got dressed, and despite his offers I decided not to eat breakfast there. I just hopped in the car and drove home. I made great time, but hit rush hour traffic two miles from home and that slowed me down. The drive took an hour. I dropped my stuff in the bedroom and then headed for the kitchen for breakfast. At an hour when I’d normally be in bed, I was showered, dressed, and eating. And exhausted.

So that’s how I ended up spending all day Wednesday at home. I figured I could push myself to go out, but what was the point? And I hadn’t made any particular plans anyway. I knew was going out Thursday (today) and I wanted to be rested. Between the lack of sleep and the more-than-normal activity and exercise of the previous day (and that morning) I figured a day at home would be good.

And it was. I read and watched tv, cleaned up around the house a bit, and generally relaxed. It felt great.

I slept very deeply last night and felt pretty decent today. I was ready to go out! Unfortunately, the person I was going out with didn’t feel as well and we agreed to put it off until tomorrow. Luckily, everyone involved is free then. But suddenly, I had no plans for today. My friends were all at work. My family was either at work or out of town or part of the plans that fell apart. There was no place I needed to be.

I spent another day at home reading and watching tv and reading more. In the evening I finally took a walk. I hadn’t left the house since I got home from that overnight, about 33 hours earlier, and the fresh air felt good. Still, it wasn’t enough. I didn’t see anyone. I didn’t do anything worthwhile outside of my own little world. I felt lonely.

This is one of the many things that’s hard to describe to people. No, I don’t feel up to working, because I have too many days like yesterday. And even on a day like today I probably couldn’t work for a full 8 hours. On the other hand, I need something to do, a reason to get out of the house, to see people, to socialize, to share. Just not every day, because that would be too much. They don’t get it, because they take these things for granted. But I know that at least some of you reading this know exactly what I’m talking about.

This is the part of the feel-good-happy-ending movie/tv show/book where I offer some profound solutions to this problem. But this is real life, and in real life I’m not sure what to do about this. I make plans to get out as much as I can, or to at least make sure I don’t have too many days in a row at home. If I have free days, I try to buy groceries or something. I knew I had no plans for Wednesday or Friday this week, but I had at least one thing for Monday, Tuesday, Thursday, and Saturday, so I figured that would be enough. And when Thursday fell through there was no way to quickly come up with a replacement. If you have any ideas, I’d love to hear them. In the meantime, I’m just glad that I have enough interests that I don’t spend all day watching tv. Still, I’d like to spend fewer hours inside these walls.

2 Comments | Educating, Fatigue, Frustration, Isolation, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Unpredictable | Permalink
Posted by chronicrants

Ergonomics: Our bodies deserve nothing less

February 18, 2013

Pain is bad.

Everyone has experienced some level of pain. It could be a stubbed toe, a paper cut, or chronic pain that never goes away. It could be a broken leg, a bumped head, or childbirth. There are many causes of pain and many ways to experience it. We all tryErgonomic position to avoid it and lessen it. Why, then, don’t we help others avoid it too?

I got a call last night from a friend who has “tendinitis.” I put that in quotation marks because I was told that I had tendinitis for several years as a teenager, and of course what I had turned out to be something entirely different, so I’m skeptical of catch-all diagnoses now. Still, this is what he was told. He graduated from college last spring, and the pain started within a month of starting his first full-time office job. He had worked during the summers before, but never at jobs that required so much time at a computer. Now, he’s spending 10 hours a day at work (or sometimes more) and almost all of that time is spent looking at and typing on a computer. He called me because he knows about my history of pain in my wrists (among many other joints) and he figured I’d know all about ergonomic positioning. I told him all about that and more, of course (such as warning signs of other problems.)

What angers me is that no one had told him this before. I only know so much because I have made it a point to study it. I look things up online. I ask questions of my doctors, my physical therapists, etc. I have had two ergonomic assessments done. If you don’t know about ergonomic setups, here are some great tips that I found online. I read it through and it’s fairly accurate and and thorough. I would emphasize the need to take more breaks, though. But anyway, as I was saying, I found this information on my own. Why wasn’t it shoved in my face? Why didn’t someone offer it to me on a silver platter?

Some people are ignorant about these things. Others assume it’s obvious and everyone knows. Many people try to help but their knowledge is lacking or plain wrong, and they do more damage than good. Of course, there’s an easy way to fix this: every employer should be required to provide ergonomic assessments, and then make the necessary changes for their employees, such as providing footrests and height-adjustable chairs. I had one employer who was willing to pay to have a professional come to our office to assess the workers. This was fantastic! Of course, it only happened because I found the professional and then was insistent with the boss. But it happened. Another employer was quite large and had their own assessor on staff. It was her job to work with any employee who made the request. I found out about this after I asked for certain accommodations, such as a different kind of mouse. Even though I’d had an assessment done before, they wanted one by their person before they would provide anything. And if I hadn’t asked for accommodations? Well then I’d never have known that this service was available. My coworkers had no idea.

This should be standard in all offices. Every one is at risk for repetitive motion injuries, postural problems, etc., from using a computer for many hours a day. The human body was not made for this. Why not reduce the risk? So much money is spent on bottled water (most tap water is just fine,) plastic forks (is it so hard to wash real ones?), holiday office parties (that most people really hate,) and other wasteful things. Wouldn’t it be better to spend that money on the health of employees? In fact, I bet health insurance companies would back this idea. Think of the many tendinitis, carpal tunnel, and other cases they could avoid through these preventative measures.

Some pain can’t be avoided. Tomorrow I could slip and fall on the ice. Today I got scratched by a cat (I definitely get along better with dogs.) Why not avoid the pain that can be avoided? We should all insist on better accommodations at work and be sure to make the necessary changes at home. Our bodies deserve nothing less.

2 Comments | Educating, Frustration, Job, Pain, Rants, Symptoms | 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

The doctor-medication-insurance run-around

January 18, 2013

I have been trying to refill my prescription for more than 3 weeks, and now I won’t have it when I need it, by Tuesday.

I have been on this prescription for a long time, around 7 or 8 years, and it works.  It’s a hormone, and it’s not a life-saving Prescriptiondrug, but it sure does make my life better, especially for several days a month.  For various reasons, I went off of this drug twice in recent years, and each time, I had bad PMS symptoms.  The moodiness was really horrible.  Plus I didn’t get a period.  It’s obvious my body reacts better when I am on this drug.

When I started this drug, my insurance covered it with a $40 copay.  Later, it was covered with a $10 copay.  Now, it may or may not be covered.  They haven’t decided yet.

The process started a few weeks back when I called the pharmacy.  I was out of refills.  They called the doctor.  I called the doctor.  The doctor sent the refill.  Then the insurance company told the pharmacy that they needed prior authorization from the doctor.  The pharmacy then contacted the doctor’s office.  They were closed for the week of Christmas and new year’s.  It’s a small office, just the doctor and one staff member, but I was still annoyed.  Next, the administrative staff member tried to send in the authorization, but there was confusion about the insurance, so she called me.  I had forgotten to tell them about my new insurance.  Oops.  Ok, that was totally my fault.  I scanned a copy of my new insurance card and emailed it to her.  She told me she received it and would take care of everything.  More than a week went by and I didn’t hear from the pharmacy, who was supposed to call.  So I called them.  I assumed everything had gone through and they had just forgotten to send the order.  Nope.  It turns out, the paperwork from the doctor’s office didn’t go through.  They contacted the doctor’s office and the paperwork was sent.  I got a call from the pharmacy that the insurance company was processing it and that it can take up to three days.  Then today I got another call that it might not go through.  I asked how much it would cost out of pocket.  I figured I could pay $30 or $40 if I had to.  It’s $104.  Hmm, not in the budget.  I called the insurance company.  They told me to call the company that handles their prescriptions.  Those folks told me it was still being processed.  Apparently, they need the doctor to explain why he is prescribing this particular drug, instead of having me take something else.  They called his office, and were told to call back on Tuesday.

I need the new prescription by the noon dose on Tuesday.  Let’s say the doctor gets back to the insurance company on Tuesday and actually satisfies their questions.  Let’s say the insurance processes things quickly and sends approval to the pharmacy on Wednesday.  The pharmacy is quick, and could probably send it out on Thursday.  That means I could receive it by UPS on Friday.  3 days too late.  And that’s if they move quickly.  That’s if they even approve it at all.  I won’t take a different drug, not with the kinds of side affects I’ve had in the past.  But then, what choice will I have?

So it looks like 1 month wasn’t enough time to refill this prescription.  And I found the flaw in my supposedly-great health insurance.  It could be a rough month.  As the time approaches, I’ll have to warn my friends about my likely upcoming moodiness.  And that will be around the time I expect to hear about the disability insurance appeal, so I’ll be on edge anyway.

There are many, many ways that the system lets us down, that it seems to put the needs of the patients last, that it makes an already bad situation even worse.  This is just the one I’m dealing with today.  By tomorrow, I’m sure I’ll be dealing with another.

4 Comments | Educating, Expectations, Frustration, Healthcare, Medication, Rants | Permalink
Posted by chronicrants

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