Cutting up a cantaloupe

May 30, 2013

I’ve watched my mother cut a cantaloupe. She makes it look so easy! We’ll be in the kitchen, chatting, maybe snacking, and she’ll decide the cantaloupe is ripe enough to eat, so she’ll pull out a knife and quickly cut it up. Simple. I just cut up my first Cantaloupecantaloupe of the season and I can tell you, that’s not how it works for me.

My process starts at the store. After I decide that I want the cantaloupe, I do a quick body assessment. How are my wrists? Will I be able to cut it? How about my back, knees, toes? Will I be able to stand long enough to cut it? I’ve tried sitting, but it doesn’t give me enough leverage to compensate for my wrists. How’s my appetite? Will I be able to eat the whole thing? And cantaloupes  are heavy. Will I be able to carry it into the apartment? Next, I consider the weather. How hot will it be this week? Will it be too hot to spend time in my kitchen while I cut it up? Is the pre-cut cantaloupe on sale so I can buy that instead? Based on all of those answers, I may actually buy the cantaloupe.

Once it’s ready to be cut, I consider all of those same issues. Assuming I feel up to cutting it up, and my kitchen isn’t too hot, I pull out the cutting board and my good knife and I get to work. I go slowly. I have to be careful not to cut myself. After all, with brain fog, distraction, clumsiness, muscle kinks, and balance problems, it’s easy to let the knife slip. Some cantaloupe always ends up on the floor. So at some point I have to be bending over to pick up what dropped and to clean up the sticky spots, and that involves more aches and pains and use of energy. Afterwards, there are dishes to wash and a sticky counter to wipe down. The trash will smell soon from the rinds. It will also attract bugs. So I’ll have to take it out soon.

This time I was lucky. I got the entire cantaloupe cut up with only a few pieces dropped, only one nick with the knife that was too small to draw blood, and no major incidents. The trash will be dealt with later, but the cutting board and knife have been washed. I have some extra pain now, of course, but nothing too much worse than what I’d expect. So all in all, it was a success!

Not too many years ago, before I took Plaquenil, I couldn’t cut up a cantaloupe at all. This is definitely progress. It’s not as effortless as it seems to be for most people, but at least I can enjoy some nice summer cantaloupe.


Seeing the good in others

May 23, 2013

A while back a friend had to have a planned surgery with a long recovery time. He told friends about it in advance, letting them know that he’d appreciate food, help with errands, and just being kept company during his recovery. He set up a calendar online where people could sign up for time slots to visit him. Everyone stepped up and he was well cared for, without his partner being completely overwhelmed with taking care of him while still working her full time job and managing the house.

When you have a chronic illness, it doesn’t work that way. The needs aren’t short-term and they’re often not as predictable. I never know a month in advance which days I’ll need help preparing dinner, going grocery shopping, or picking up prescriptions. I don’t know in advance which days I’ll be stuck at home and lonely and wanting company. And even if I did know these things, it’s hard to ask for help month after month, year after year, decade after decade. I don’t want to burden anyone.

That’s why I think that one of the few benefits of a chronic illness is that you see how amazing other people can be. I’ve had friends pick up groceries for me, bring me cleaning supplies, and get my prescriptions when I wasn’t able to get to the pharmacy. Every spring people put in my air conditioners and every fall they remove them. Friends change their plans so they can keep me company at my place. The amount of support has been incredible.

We’ve had some humidity this past week and it’s been pretty unpleasant. A friend had said he’d put in my air conditioners for the season, but he doesn’t live very close and won’t be by for a another week or two. I could wait, but already I’m sleeping badly and I’m having trouble breathing today. Those aren’t good, and they definitely won’t help my poor adrenal system to recover. What to do? I put out a call on Facebook and I was stunned at the response. I had figured it was just a more passive way of asking the usual folks for help. Instead, I got offers from people who I haven’t seen in years! I got offers from people who are more acquaintances than friends! They just want to help. How amazing!

So suddenly I had this long list of people who could help me. I had one scheduled for Sunday. Others said they’d help next week if my Sunday person fell through. There was still the original offer. And then today a friend called to say he’d come by to drop off something he’d borrowed. I’d thought about asking for help with my air conditioners but I didn’t want to impose since he’s already helping me out with something else. So imagine how floored I was when he asked if the a/c’s had been put in yet and if I needed any help!

I see a lot of bad stuff in the world. Sometimes I’m treated quite badly because of my health conditions. But sometimes I see how good and generous people truly are. I’m thankful that I get a glimpse of that from time to time. I sure don’t take it for granted!

I turned on that lovely a/c today and basked in the cool, clear air. It felt amazing. And I bet I’ll sleep well tonight.


You deserve a good sex partner

May 19, 2013

Too often, people with chronic illnesses feel like we’re lucky to have whatever we get in life. We’re lucky to have a job, no matter how good or bad. We’re lucky to have a spouse, no matter how good or bad. We’re lucky to have friends, no matter how good or bad. But we deserve more than that. We deserve the best! And that’s true for sex partners, too.

I haven’t seen my sex buddy, D, in two very long weeks. There I was, feeling horny today, when I started to question whether I’m physically up to seeing him at all this week. After all, this recent downturn has been really bad, and every bit of activity makes it worse. I’ve written before about how sex can make me feel better, but is it worth trying? Then I remembered just how awesome D is, and I thought about how lucky I am. That made me realize that while I’m definitely lucky to have him in my life, and I shouldn’t take him for granted, I also should never settle for anything less. And neither should you.

Somehow, D has never been phased by my health stuff. I mean, I once crapped on him during sex and he just brushed it off and suggested we clean up together in the shower. Pretty awesome, right? Here are some other ways he’s completely wonderful about my health issues:

  • When I feel especially bad, he does all the work, and never complains.
  • When I’m in pain, he’s extra gentle.
  • He’s careful about avoiding touching areas that he knows are extra sensitive, like my wrists and feet.
  • He’s significantly larger than me and is always careful not to let his extra weight put too much pressure on any part of me that could hurt.
  • We both like sex just a little rough, and when he pins me down, he’s careful to avoid areas that he knows are a problem. He’ll pin my forearms instead of my wrists, for example.
  • When I wince, he always sees it and immediately asks how he can adjust things.
  • When something is clearly difficult for me, he doesn’t push it. For example, last month he was lying on top of me and tried to pull my head/neck up to kiss him. Clearly my body was having none of it, so he just changed positions so I could stay flat on the bed.
  • He respects my illness-related fears. Even if something doesn’t hurt, I might be scared that it will, so he avoids it.
  • He pays attention to good hurt vs. bad hurt and respects both. Good hurt was when he was sucking on my breast and I responded with “Ow! That feels good!” and he kept going. Bad hurt was when I yelped and winced and yelled, “Ow!” and he immediately stopped and asked what was wrong and what he could do differently.
  • When I need to switch positions at an inopportune time, he doesn’t say a word about it.

See what I mean? He’s awesome. Of course, it’s not all him. I have to do my part too.

I have to listen to my body and respect what it wants. I was young when the pain started, so I’ve never had sex without pain. That also means I’ve had a long time to learn how to adjust things. I may not be able to practice all of the techniques or positions I’ve read about, but I have found quite a few popular ones that I can do without pain. I am careful to pace myself. For example, I know that when I give a hand job, I can only go for so long with each hand before the pain gets too bad, so I’m careful to switch before I reach that point, and I always time the switch to be the least disruptive to him. I also position my body to have the right leverage for my arm without straining my neck. I pay attention to what works for him, and I find ways to improve on it that he enjoys and that don’t hurt me. And when pain does sneak in, I make an effort to not let it disrupt things. Like a few weeks ago, when I was just starting to orgasm, and it felt so good, and my body tensed up, and my toes curled, and… OH MY GOD! THAT HURTS!  But I didn’t lose it. I relaxed my feet and uncurled my toes and felt the pain go away just enough, and I kept my head where it needed to be – in the orgasm. I could have let that spear of pain interrupt things, but I didn’t. Obviously that doesn’t work when the pain is at its worst, but so many times I’ve been able to ignore it or use it. And it’s always worth it! Of course, the most important thing I do for myself is communicating. I think that communication is always important during sex, but it’s extra important if you’re dealing with pain and other chronic issues. Tell your partner what’s likely to cause problems in advance, and stop him/her if there are problems in the middle. They won’t mind. And if they do, they don’t deserve you.

So you need to do your part too. You need to make sure you’re doing the best you can for your body. Communicate and respect your own needs. And make sure it’s not all about you – do nice things for your partner, too. Most of all, don’t put up with anyone who isn’t kind, respectful, and understanding. You deserve all of those things, and don’t let anyone tell you otherwise. We’re sick. We have health problems. Fine. But we are still fine human beings to deserve to be treated as well as everyone else.


Taking pills 10 times a day, literally

May 17, 2013

I wrote once about how much time I spend on health stuff. I wrote about lawyers and insurance and doctors… those are the things that you’d expect to be both time consuming and mentally consuming. As I was trying to work out a new pill schedule the other day, it occurred to me that most people probably have no idea just how time consuming, not to mention mentally consuming, it can be to take pills!

A “healthy” person might not take any pills. Or they swallow an occasional multivitamin or birth control pill. I’ve been trying to remember when I last had a day without pills and my guess is that it was probably around 1996 or so. Then for years my pills were simple: a birth control pill, then a BCP and a thyroid pill, then a BCP and the thyroid one and a multivitamin…. and then it got worse.

I miss the days of simply taking a pill or two with meals. Now, everything has to be timed out so carefully. There are the pills that must be taken with food. There are the pills that must be taken away from food. There are pills that must be taken away from each other. There are pills that need to be taken at specific times of day.

Oh, and when I say “pills,” that includes liquid meds as well.

It’s taken a lot of mental energy and help from my naturopath, but I finally have a working schedule (until the next addition or subtraction, that is):

  • 8am: thyroid pill – 1 pill
  • 8:30: adrenal support, dhea – 5 pills
  • after breakfast: a whole bunch – 9 pills and 8 sets of drops, and a cream
  • 2 hours after breakfast: fiber – 2 pills
  • after lunch: another bunch – 5 pills and 7 sets of drops
  • 2pm: adrenal support, dhea, calcium – 4 pills
  • 4pm: fiber – 2 pills
  • before dinner: calcium – 1 pill
  • after dinner: another bunch – 7 pills and 8 sets of drops
  • 9pm: bedtime stuff – 4 pills

Wow, this looks even worse written out than it did in my head. Actually, the original title for this post had “9 times a day” written, because that’s how I’d counted it. Then as I wrote it out, I realized I’d missed one. It’s a lot to keep track of. The thyroid pill has to be an hour before meals. The adrenal support has to be 15 minutes before eating and at specific times of day. The fiber has to be 2 hours after and 1/2 hour before eating. Some of the mealtime pills are taken then because they have to be taken with food. The multivitamin has extra iron, and the iron and calcium have to be taken at least 1/2 hour apart. In fact, I should be taking calcium 3 times per day but I’m only taking it 2 times per day because I can’t figure out where else to squeeze it in! The drops don’t have to be taken at specific times, but they’re hard to carry around, so I need to take them at home. That means that sometimes I only take them 2 times per day, but that’s ok, as long as I at least take the drops for vitamin D. Some of the pills, though, can’t be missed. Like, they really, seriously, can’t be missed. Like, if it’s really late and I don’t want to deal with driving and so my parents say I can just stay the night, I can’t. Because I have to get home. I have to get home to where the pills are. Because I really can’t skip those morning pills, or even take them late. Some don’t seem too important, but they are. I tried cutting the fiber back to 2 times per day instead of 3 and the effects were horrendous. I’m not about to try that again any time soon!

So you may be wondering what my point is? I have three points:

  1. For those who are in a similar situation, you’re not alone. I get it. Lots of us get it.
  2. For those who complain when they have to take a single pill for a cold, or even for something daily, tell it to someone else. I don’t want to listen.
  3. If you think that by not working I just sit around all day and have fun, and you haven’t figured out yet that that’s not how it works, just imagine trying to keep track of all of this. Imagine how long it takes me to fill my pill boxes each week. And since the drops can’t be prepared in batch in advance, I have to deal with those three times, every single day. Trust me, it would be easier to work a job.

And on that note, I’m off to get some sleep. I hope. Because there’s no more sleeping in for me – I have to be up early to take those pills!


Can’t seem to charge my (adrenal) battery

May 15, 2013

A lot of us struggle to describe how we’re feeling. Somehow, the English language, and probably other languages too, just doesn’t have the right words to describe how I feel. Instead of stumbling around using the words I’ve got, I try to use analogies.

That’s how I found myself telling my naturopath yesterday that my energy levels were like a rechargeable battery that just wouldn’t recharge. It’s not that it charged and then wouldn’t hold the charge. No, it’s that my energy battery wouldn’t recharge completely in the first place.

Charging my adrenal battery

The other day my cell phone battery got dangerously low. It went from 100% when I woke up (I plug it in overnight) to 82% after reading the news and Twitter to 56% after random use. Then before I knew it, it was as 27% then 24% then 10%. I usually don’t need to plug my phone in during the day, but this day was different, so I plugged it right in. But then I needed to leave my apartment, and of course I brought my phone with me, so I unplugged the poor thing, even though it was at 80%. It had been serving me well all day, but I didn’t give it a chance to fully recharge. And my body fares even worse.

My energy doesn’t start out at 100%, of course. If 100% is how a “healthy” 30-something should feel after a good night’s sleep, then let’s say I start out at 40%. I give myself adrenal support via supplements, I sit in front of a blue light, and I eat a healthy breakfast. Now I’m up to 60%. Before I know it, though, I’m back down to 50%. I take a shower and suddenly I’m at 25%. I lie down for a while. I take more supplements, eat more food. Getting back to 50% feels like a good accomplishment. I take a walk and feel great while I’m doing it, but when I get home I’m at 35%. I rest for a while, and boost myself back up to 42%. Then I have to cook dinner, but I rest while I eat, and then rest for a while afterwards before doing dishes, so I manage to hover around 40%. My energy drains as I continue through the evening, until I’m hovering around 20%, at which point I drag myself off to bed, hoping to waking up feeling energized, but somehow never seeming to fully regain my charge. The battery (my adrenal system, as it turns out) just won’t juice up like it’s supposed to.

I don’t know if I’ll ever get up to 100% again. My naturopath says I will. My traditional doctors say I won’t. I just don’t know. But right now, 75% would feel pretty fucking awesome! So I have a new goal……


You put orange juice in this?!?

May 13, 2013

I appreciate when people try to accommodate my food restrictions. They go out of their way to make sure I can eat their food, and it means a lot.

Unfortunately, some people don’t take it as seriously as they need to.

Here’s the thing: some allergies kill, some don’t. But all allergens need to be avoided.

So sure, eating beets or peanuts won’t kill me. But I’ll be pretty damn miserable for a week or more. I could have increased pain and increased fatigue, and I’ll definitely have all sorts of horrible digestive problems. So even though I’ll survive, that’s still some pretty rotten stuff that I’d rather avoid.

I’ve done pretty well in restaurants. I don’t go out to eat often and when I do, I make sure the waiter really understands my needs. So far, so good. Unfortunately, eating the food that friends and relatives prepare hasn’t gone as well. In fact, I’ve gotten sick several times. There have also been a few near misses.

A good example of a near miss was this weekend. We were having a lovely family meal. B had gone to great effort to prepare everything. He told me all of the ingredients, to be sure I could eat it. It all sounded fine except for one sauce, which he kept separate. I was thrilled. Later, as he was getting it all ready, I asked him again about the ingredients. Again, it sounded fine. Then while we were eating, someone else asked how he made it so they could copy it themselves. He ran through the preparation, and then mentioned what made it so great – the orange juice used at the end. Wait a minute, he didn’t tell me about any orange juice! I froze with food on a fork halfway to my mouth. I must have said something, because everyone looked at me. I’d already eaten several bites. Oh crap. He shook it off with, “It’s only orange juice.” I was horrified! As it turns out, it was a freshly squeezed orange, so I was ok. Store-bought orange juice would have been a problem. But he didn’t know that. He just assumed it was fine for some crazy reason. Or maybe he’d forgotten it earlier and he was trying to cover his tracks. Either way, I was really insulted. Here I thought he cared enough to work around my food allergies, and he’d left out an entire ingredient that didn’t seem important to him. This is the second time he’s done this. Once could have been a fluke, but twice is the start of a pattern that I don’t want to continue. I know he’ll be insulted when I don’t eat his food anymore, but my health is more important then his feelings.

I think that’s the important thing that so many people don’t seem to understand. My health is more important than their feelings. So if they suddenly realize they’ve forgotten to tell me about an ingredient, I’d rather they just say it than to wait and hope it’s ok. That’s happened with others who’ve cooked food that I’ve eaten. And it’s not ok. And if I say I can’t eat it, that’s not a comment on your cooking ability. It’s that I’d rather not spend the night doubled over in pain because I chose to eat something with a peanut sauce in order to keep you happy. Why is this so hard to understand?

Some of these incidents have turned out badly. I’m just thankful this last one was ok. I’m in the middle (or hopefully beyond the middle) of a bad downturn, and it’s kicking my ass. I’m pretty sure that eating the wrong foods right now would be a very, very bad move. Which is why for a while at least, I won’t be eating anyone else’s cooking.


Welcome back, brain!

May 9, 2013

As bad as the physical symptoms are, it’s the cognitive symptoms that I have the most trouble with.

Last week I started on a downward spiral. It was slow at first, then I thought I was improving, and then it really took a dive. After the dive, I spent two days at home barely moving. Then I went to a medical appointment and the grocery store in the same day and could barely move that night. By yesterday, I was as fatigued as I’ve ever been, and I could tell that whatever was wrong, it wasn’t going to fix itself. I emailed my naturopath. She called back with a list of dosage increases for various supplements I was already on. Extra vitamin D, extra Isocort, etc. seemed like it might help. I took the pills and drops and then went back to watching tv, since I couldn’t do much else. I didn’t even have any interest in reading, which really isn’t normal for me.

Amazingly, I started to feel better almost immediately. I wasn’t sure if it would last, but this morning, I felt almost “normal,” whatever that means. It’s incredible! Thank goodness for that naturopath!

Now, I knew I wasn’t thinking well this week. My thoughts were fuzzy and took way too much effort. I didn’t even want to read. And my emails with a friend just weren’t right. She gets bored at work so we email back and forth most days, talking about her kid, my family, her family, her job, my insurance issues, tv shows, politics, and whatever else comes to mind. Yesterday we were debating the effects of language assimilation on cultural preservation. Part of the time I couldn’t get my thoughts to come out right in the emails. The rest of the time I couldn’t get my thoughts to get out right in my own head! I couldn’t seem to get a handle on what I wanted to say. I knew it was bad, but I didn’t realize how bad it was until I looked at those emails this morning and realized how poorly I was communicating. Today I could organize my thoughts. Today I knew the argument I wanted to make. For the first time in days I could think clearly. What a relief!

I won’t pretend that I have my cognitive abilities back completely; at least, not to the level they were at before I got so ill. But I’m sure grateful to have whatever I have right now. It was a short time, but I really missed being able to think. I’m so glad to have my brain back!


%d bloggers like this: