Welcome back nausea

September 23, 2011

Well, maybe “welcome” isn’t the best word.


I started my most recent round of Prednisone back in April.  Now, 5 months later, I’m slowly lowering the dose.  I’ve tried to lower the dose three times already, but each time I had the symptoms return and had to up the dose again.  This time, so far, it’s going ok.  Except for the return of symptoms.


Back in April, I had tried a few alternatives with no luck, so I returned to Prednisone.  It comes with many side effects, as most of us know.  Sure, long term I may be at risk for osteoporosis or heart problems, but right now I’m focused on the short term side effects.  Let’s see… there was the hyperactivity.  I kept talking too much and too fast, even faster than normal (which is already too fast.)  I was always hungry.  I wasn’t sleeping as much.  I gained back all of the weight that I had just finished losing from the last round of Prednisone, years earlier.  But then there were the good side effects.  I had a lot of energy.  The fatigue was mostly gone.  And the nausea went away.  Oh, that was heaven.


As I’ve lowered the dose of Prednisone I’ve noticed a drop in energy.  This has been difficult and frustrating.  I loved being able to keep up (well, somewhat) with my friends.  I’ve been trying to adjust back to my “old” levels.  But then yesterday the nausea hit me.  After months of almost no nausea, I had started to get used to it.  I could eat whatever I wanted (within my limited diet) and feel just fine.  I didn’t have to worry about feeling horrible for no reason.  I could simply eat a meal or a snack.  Easy.  It was bliss.  Then yesterday, my stomach was bothering me in the afternoon.  It wasn’t my period.  It couldn’t be what I’d eaten.  It wasn’t the amount I’d eaten.  It felt almost like…. BAM!  It hit me.  I knew what it was.  The symptoms were back.  And, sure enough, I had a perfectly good dinner tonight, healthy and well-proportioned and conforming to my diet, and felt horrible afterwards.  Oh yeah, I’m returning to normal all right.  Too bad.  I really loved not feeling nauseated on a near-daily basis.  What a wonderful treat.


Still, there’s nothing much I can do about it.  So it’s time to stock up on the foods and such that make me feel better (carbs, mint, Pepto, etc.) and just deal with it.  It sucks, but there’s nothing to be done.  At least I’ll be at less risk of osteoporosis and whatever other side effects Prednisone causes.  I guess that’s a good thing.  Sort of.


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Great folks make it all a little less bad

September 22, 2011

For two months I had a friend’s party scheduled in my calendar.  I was excited to go.  This is a group of people I don’t get to see as often as I’d like and I knew it would be fun.  Then I had an episode and all plans were kaput.  I didn’t even get to email him about it until afterwards.


This is a couple I really like, and they know I have health problems, but we’ve never gotten into all of the details.  [Then again, I don’t get into details with anyone, so I guess that’s my issue.]  I really hated missing the party, but I also felt bad because I’d cancelled plans with them so many times recently.  I just can’t seem to get a handle on my health, or any sense of predictability.  This is hard for me to handle, but even harder to explain.  So I emailed each of them, apologized, explained, and included a link to the spoon theory.


They are such wonderful people.  He wrote back and explained that an old girlfriend had (and has) fibromyalgia and that he understood why I kept having to cancel.  He said not to worry and that he’d keep inviting me to things.  Then he posted the spoon theory on Facebook and encouraged others to read it!  His partner emailed me and said that when I show up they’re thrilled and when I don’t they’re thinking of me.  She said not to worry, that she’d keep inviting me to things.  They each said that I don’t have to explain or apologize.


These are fantastic people in so many ways.  They are sweet and giving and always thinking about others.  Still, you never know how people will respond, right?  I’ve certainly had people feel insulted when I skipped important events, even though it was not my fault and couldn’t be helped.  But to have people in your life who understand?  That makes all the difference.  If you don’t have people like this in your life, please get some.  Positive relationships can make it all bearable.


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Ups, downs, and all arounds

September 21, 2011

It started with a great fantasy.  I started daydreaming about winning the lottery and not having to work anymore.  I thought about quitting my job and fixing my health.  I’d go to the gym and do physical therapy, I’d get massage therapy and acupuncture.  I’d buy a house with central air conditioning.  Oh, how nice it would be.  When I felt healthy enough I’d do volunteer work.  And I’d feel better.


This was on my mind so much that I had trouble falling asleep.  Then, it was a poor, shallow sleep.  The alarm went off this morning and I was exhausted.  The shower woke me up a bit and breakfast woke me up more, and just before I left the house the sun came out.  The sun!  Suddenly I was awake and cheerful.  I love the sun.  Somehow, I stayed energized through my commute and still felt ok when I got to work. ( This is very unusual – normally by the time I get to work, I feel like I’ve already spent my energy for the day.)  Today I was strong and productive at work.  It felt great!


After work, I came home and moved my car.  While driving around for 15 minutes looking for a legal parking space that wouldn’t obstruct tomorrow’s all-so-important-yet-ineffective street cleaning, I suddenly lost all that energy.  It was just gone.  Kaput.  I’d been feeling good and having a great day, and without noticing, I’d spent all of my spoons.  If you don’t know what I’m talking about, read about the spoon theory here.  My spoons were gone.


Luckily, I found a dirty, bent spoon in reserve, and I was able to fix it.  I sat in the car for 15 minutes.  I thought about picking up my phone, but that took too much effort.  I wanted to put on a sweater, but that took too much effort.  Instead, I just sat.  I didn’t move.  After a while, I felt much better.  I’d resurrected a spoon.  That doesn’t always work, but this was a lucky day.  I still managed to meet my cousin as planned and have a lovely dinner.  After dinner, I suggested we walk.  We walked a lot farther than I really wanted to, but I knew it was important.  I needed the exercise, to build upt tomorrow’s reserve of spoons.  And it’ll help me sleep better.  I hope.


It was a good day overall.  The setback was minor.  But it was a good reminder to be careful.  Energy can disappear without warning, so I have to always be mindful.  Always.


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Getting beaten up by my job

September 20, 2011

At the risk of being redundant, I’m writing about the whole job thing again, because it’s on my mind again.  Well, still.

I used to be so grateful that I could work full time.  And I suppose I’m still grateful that I’m able to do it, it’s just that “able to do it” is defined differently now.  Before, I could work and have a life and feel good.  Now, I can work or have a life and feel good.  This is not a good choice to have to make.  I’ve accepted that I need to work part timeand having made that decision gives me some peace of mind.  The problem is, it’s not so easy to find a part-time job, even at 4 days a week, that pays enough.  I don’t live an extravagant lifestyle.  Actually, I wish I did, because then it would be easy to cut down.  I spend relatively little, and I save as much as possible so that I’ll have some money for when the day comes that I can’t work at all.  Still, I have to pay the rent, and buy food, and all that other stuff.

I’m willing to work.  I just don’t want my work to be more effort for me than a healthy person’s full time job is for them.  I figure that means I should be working about 3 partial days a week.  Yeah, that’s no good.  Maybe I’ll win the lottery.  In the meantime, back to the job boards….

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Remembering to ask for help

September 19, 2011

I’m spoiled.  I know that.  I have a fantastic support system.  Just knowing they are there if I need them makes me very lucky and very spoiled.

I’m not good at asking for help.  I never have been and it’s possible that I never will be, but I’m a ton better than I was.  After 20 years of symptoms, I’ve learned that there are times when it’s important to ask.  I still don’t ask for help as much as I should, but I do it more than I used to.

After throwing my laundry in the basement dryer last night, I ran into a neighbor on my way back to my apartment.  She was diagnosed with Parkinson’s a few years ago and I have offered many times to help her with errands or tasks around the building.  She has never asked for anything, but when I see her in the building I hold doors open for her and I help her carry things.  Last night, she asked if I could pick up something for her at the grocery store.  I told her that she had great timing, because I was planning to go after work today and I’d happily pick up anything she needed.  She seemed apologetic, kept asking if I could really manage it (she knows I have health issues too), and then started to offer an explanation.  I waved off her explanation and assured her it wasn’t necessary.  She looked uncertain, but finally believed me.  I think she was hesitant to ask for help from someone who also has limitations, but at the same time, she knew I understood.  I understand the way most people don’t.

My neighbor has friends.  I know they help her.  But I also know how hard it is to ask the same people to go out of their way constantly.  I’m so thrilled that she finally felt comfortable asking me for help.  I hope she asks again.  Some days I won’t be able to do it, but on the days I can, I’ll be only too glad to.  And I’m glad she’s accepting that it’s ok to ask.


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Considering the big STD: Short Term Disability insurance

September 18, 2011

Until this year, I never considered going on short term disability insurance (STD).  Now, I’m wondering if it’s the right thing for me to do.


I was lucky to have STD at my last job, but my health was decent enough, and my employer was accommodating.  I worked from home one day a week, and more when it was needed.  I did ok.  At my current job, again, I’m lucky that my employer offers STD.  My boss won’t let me work from home, though, and putting in all those hours at work is not good for me.  I’m not getting exercise when I need it and I’m not getting rest when I need it.  There’s no balance.  I have a fairly good diet, but it could be better.  I spend too many hours at a computer, something that is bad for me physically and mentally.  I don’t get enough sleep.  I know I’ll feel better if I’m not working.


For years I felt that not working would be giving in, letting the diseases win.  My new attitude is that I should live the best life I can live, and if that means not working, then so be it.  Unfortunately, it’s not that simple.  I know that I qualify for short term disability, but I doubt that I’d qualify for long term disability.  I don’t think I’d qualify for SSI (the U.S. social security disability insurance) either, and even if I did, it would take more than a year for the application to be approved, and then my benefits wouldn’t even pay my rent, much less any other bills.  So that brings me back to STD as the most likely option.


STD is tempting.  It would cover me for 12 weeks, and I know I’d use that time well.  I would exercise regularly, eat well, sleep better, and generally be happier.  I’d get to spend time with my friends and family.  I’d be calmer and more relaxed.  This is what I did when I was unemployed (before getting my current job) and my health improved significantly.  I would use the three months well.  And then after those 12 weeks were up, I’d go back to work and be…. right back where I started.  That’s why I’m hesitating.  What’s the point of feeling better for three months only to go back to feeling lousy on a regular basis?  I need a more long-term solution.  Too bad my last lottery ticket didn’t win.


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Lost days

September 17, 2011

I usually post something each day, but yesterday wasn’t quite normal.

For a while, I would get sick with some sort of cold several times a year.  Then the chronic illnesses changed.  Now, I get sick once or twice a year, and several other times a year, when I start to get a bug, I feel a certain type of…. well, I don’t know how to describe it.  But when I feel it, if I listen to my body, and get as much sleep as possible (usually 12-15 hours), then spend the entire next day resting, I can usually avoid the bug.  And that was yesterday and today.  I left work early yesterday, and didn’t touch the computer all day.  No email, no Facebook, no Twitter (@CIRants), nothing.  I just had no desire for any sort of contact with the outside world.  Instead, I watched tv and movies.  Luckily, I had Fred and Ginger to entertain me (and if you’ve never seen them dance, you should.)

Anyway, after 12 hours of sleep, I finally go up this morning feeling much better.  Actually, I would have liked to sleep even more, but I was very hungry.  I can sleep through a lot of things, but not a rumbling stomach, especially my own.  Unfortunately, even though I did feel a lot better, I didn’t feel quite right, and I know from experience that I had to stay in and rest all day.  I cancelled plans.  I stayedindoors on a gorgeous day.  I didn’t do anything productive: no laundry, no cooking, not even catching up on emails.  As I write this, I am missing a party that I had looked forward to for months.  But what’s the alternative?  If I went out, I know I’d get sick, and that would be worse.  This way, I might be ok tomorrow.  Still, I hate to lose time like this.  So much for my Saturday.  I wouldn’t mind missing plans occasionally, but it’s been happening more and more often lately.

My big frustration is that I put so much energy into working, and then I miss out on life.  I’d much rather it be the other way around.  I’m working on that.  I’m sure there’s a way.  I just don’t know yet what it is.  In the meantime, I’m hoping to leave the house tomorrow.

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