Tag Archive for recovery

I’ve made it halfway through August

Every year, August is an especially rough month for me and mister asthma.  A year ago today I was in the hospital having an awful time, not sleeping, and anxiously watching the clock waiting for the RT to come by for another treatment.  I hate being in the hospital and, in my dislike for being sick, I often try to bounce back earlier than I am able.

I should really listen to Liz more often, cause she’s never wrong.

It was probably 9 or 10 years ago I casually mentioned to Liz, “I have asthma kind of bad.”  That may not seem like a big deal or a bold statement to make.  In actuality it was my way of showing Liz I trusted her enough to nonchalantly downplay my serious respiratory condition.  Back then I tried to hide my asthma as much as possible.  I didn’t deny having the disease, but I let as few people as possible ever see me having any trouble.  A good portion of my life has been spent pretending like I’m ok, and it seems like people usually buy it.  There’s a lot you can hide by sitting, smiling, nodding, making hand gestures, and just acting chill.  When things got really bad, I’d just disappear for a few days in my apartment and no one thought anything of it.

In the past 10 years Liz has seen pretty much every aspect of the disease.  She’s seen me go from fine to gasping within seconds, she’s taken me to doctor’s appointments, and has sat with me on many, many hospital trips.  She’s picked up who knows how many prescriptions for me at the pharmacy.  She’s watched me try to walk down the hallway to get meds to end up on my face, on the floor.  She’s yelled at and threatened people illegally smoking in my general vicinity.  She’s explained over and over and over to people why I suddenly can’t go somewhere or participate in some planned activity.  She knows when I’m pretending to be ok.

Earlier this month I was in the ER again.  As usual I was sick of being sick, and worried about being away from work.  I stayed home for two days and against the advice of The Liz, I went back to work because I felt like I needed to be there to assist with a big upgrade.  Well, I showed up, pretended to be ok, worked a full day without lunch, and then spent the next 7 business days at home.  After going back to work I picked up a virus of sorts, became feverish, started coughing crap up, and watched my peakflows drop.  Thankfully Liz convinced me to stay home that entire week and by the end I could actually take deep breaths and in 7 days my peakflow numbers doubled.

I actually feel not so bad this time, and think this is the best I’ve been breathing since May or earlier.  Liz says this is the first time in 10 years I can say I’m doing better than I was last year.  Even though FMLA paperwork is the bane of my existence, listening to Liz and staying home for a couple extra days is way better than not and having to spend an extra week or two home.

Trying to out-Jedi the asthma

Last summer one of my problems with recovery included me trying to jump right back into my normal routine as soon as I could handle not being in bed all day.  While this may sound like a not smart thing to be doing, it made sense at the time because I was concerned about using up all my earned time too quickly and running out before the fiscal year was over.  This strategy caused me to use all my sick time, vacation time, FMLA time, and even had to miss a few additional days.  This summer I’m trying to channel Obi-Wan Kenobi and outsmart the chronic lung disease.

A couple weekends ago I piggybacked two ER visits and the doctors told me to stay home that following week of work.  I’ll be honest – that week was not a good one as I had several serious situations that could have easily landed me back at the hospital.  I showed up to work the next Monday, after staying home for a week, and made it through one day.  I seriously over-did things, watched my peakflow numbers drop to unnecessary levels and stayed home Tuesday and Wednesday.  Thursday rolled around and I had an important decision to make.  I could go back in for another day before the holiday weekend, or not be an idiot and just stay home.

I’m proud to say I chose the latter and actually gave myself some time to rest.  Yeah, I used up three sick days, but I can say with some confidence I probably avoided another week at home later this month.  I don’t know why it can be so hard to just be still and take it easy.  Fortunately I have The Dude to keep me company.

lebowski-opinion

Hospital Recovery

So once you’ve gotten bad enough and have given into the Dark Side, admitted defeat, or were just plain taken to the hospital against your own will..what happens afterward?  Getting back to normal can be just as hard as the exacerbation which got you there.  In some ways you have to not be stupid and in other ways you just need to be a little smart.  Here are some things I’ve figured out the easy way and hard way.

Stay on top of your meds.  Even though you most likely feel craptastic after getting out of the slammer (aka the hospital) you’re most likely feeling somewhat better because of all those intravenous steroids they pumped into you.  This past Monday I had 350mg of steroids along with an IV magnesium sulfate drip and was hobbling on sunshine for about 12hrs.  They instructed me to nebulize duoneb no fewer than 4x/day and take extra albuterol if needed.  I thought I was doing alright, I even nebbed some albuterol in the lobby while waiting for a ride home to get a jumpstart on things.  Twelve hours later though I was gasping for air, sitting on my bed, and attempting to get some medicine into my airways with Liz threatening to call 911.  Don’t worry, it all ended well, you just gotta stay on top of things.

Use the buddy system.  I just mentioned Liz threatening to call 911.  In a way, it’s her two-edged sword of seeing just how bad I am while also being prepared to get me some help.  I have a major aversion to ambulance rides so this kind of threat will perk up my responsiveness especially if her cell phone is in hand.  Seriously though, make sure someone is checking up on you and that you can readily get a hold of someone if you need to.  If you’re breathing is bad enough, you might not be able to tell a 911 operator what you need and cell phones don’t always easily tell emergency medical services where to find you.

Keep yourself busy.  This may sound easier than it really is, and mental health is a must.  Sometimes I’m awake for days with no end in sight, or just by myself for hours and hours at a time.  Find a hobby, write a blog, watch movies, read books, knit scarves, build models, repair a toaster, or add HBO to your TV line-up and watch all their original series.  Whatever it is that interests you, make sure you have something to do.

Stay active.  Take this one with a grain of salt, but my point is to not become too lethargic and lose what cardiovascular fitness you had before all this started.  I’ve had weeks where I’ve only gotten out of bed for bathroom breaks and showers before.  I understand when you’re pretty limited in your activity.  No matter how bad I am though, I try to make sure I push myself a little every day.  Sometimes that means walking to the mailbox to send those Netflix DVDs back or just sitting on the couch instead of lying in bed.  Sometimes that means cooking a meal and doing my laundry, and some days all I can really accomplish is going to the doctor and then back home.  Just be sure to not lie around all day every day, and have some attainable goals in mind for getting back to the usual stuff.

Find a community.  With any chronic illness, it can be hard to relate to your healthy friends, and it can be hard for your friends to relate to you.  You need to find some friends to complain to, commiserate with, attain advice from, and share your experiences with.  You might check with your doctor’s office, local hospital, or American Lung Association for any support groups.  You might find a group on your social media of choice, or you might even have a group of friends already with whom you can talk.

Don’t be afraid to call your doctor.  I hate going to the hospital and being in the hospital, but it’s even worse if I have to go back.  Similarly to staying on top of your meds, keep an eye on my peakflow numbers, oxygen saturation, when and what medication you’re taking, your general symptoms, and your gut feeling.  Worst case scenario is you’ll call your doctor’s office or the answering service and be told it sounds like you’re ok for now.  The real worst case is you not doing anything and ending up back in the hospital, or lying on the ground in your house trying to crawl to wherever you left one of the 5 inhalers and 3 nebulizers.

What tips do you have?  What has worked for you?  I’m always looking for more tips and tricks to getting back to normal as quickly as possible.

New doc and pinto beans

Today I saw a new ENT doctor.  I wasn’t really sure how it was going to go.  A couple years ago I started seeing a different doctor in the same practice and then quit going due to insurance, not happy with the doctor and too many bad customer service experiences with the staff over the course of a week.  Now I’m really needing to re-establish a relationship with an ENT and this is the only practice  close to where I live.  One handy aspect of it is they’re two floors up from my pulmonologist so it’d be easy for them to chat and compare notes.  I ended up calling a few weeks ago to find out my doctor had left the practice so they needed to transfer me to someone else.   I’m not sure what the other doctors are like there, but I feel like I got a good one.

Dr S was extremely friendly and personable.  He was interested in what I had to say and actually listened.  He also didn’t shove his fingers in my mouth or jerk my head around by my tongue like the last one did.  Dr S tried to get a handle on my history, what I’ve been dealing with, what my current treatment is and figure out what he could do to assist.  I have five doctors so it’s nice when one wants to be a team player.  He checked me out, scoped my vocal chords and I’m going to be following up for a video laryngoscopy.  I felt like I was in good hands after the visit and am confident he’ll be a contributing factor in my treatment.

Later today I cooked a pot of pinto beans.  This may not sound like a big deal, but it takes at least six hours from start to finish after you sort, clean, soak and cook the beans.  I used to cook all kinds of things all the time.  Saturdays were often dedicated to trying new things and cooking large quantities of something to eat the entire following week.  The past few years I’ve hardly cooked anything at all either because I couldn’t physically stand in the kitchen that long or I’ve just been too exhausted to even think about it.  I feel like it’s a tiny accomplishment on my road to recovery from this summer.  I’m still on tons of medicine and still taking prednisone, but at least I’m able to have intelligent conversations now and spend a little time slow cooking something I enjoy eating.

Trying to take it easy

For as much as I love hanging out, watching movies and studying the finer points of The Big Lebowski, you’d think I’d have no problem with “taking it easy.”  I’ve been sick solid since mid-May this year.  I’ve been to the hospital four times, made way too many calls to my doctors’ offices, taken five courses of anti-biotics and if all the steroids I’ve been taking were metabolic I’d look like Schwarzenegger from Terminator 2.  You’d think this cycle of almost getting better and then trying to get back into what I shouldn’t be doing too early would have stopped by now, but I’m a bit of an idiot at times.

A few days ago I decided to just stay home from work next week.

It was about the time I thought I was doing ok and then no matter what I did my lung function kept dropping below 40% landing me back at the hospital on Thursday.  It was interesting to see how seriously the hospital staff took me showing up again.  While they were obviously trying to make sure I didn’t become worse, I’m sure others were trying to make sure they hadn’t released me too soon.  I ended up bouncing back fairly quickly and got some of the advice I get every time:

  • Don’t forget to take your medicine – taking medicine is like a part-time job for me
  • Don’t be afraid to come back if you need to – that’s happened twice this summer
  • Try to avoid your triggers – this is my other part-time job
  • Try to take it easy – sure, that can’t be hard to do

Yeah…taking it easy.  When I feel super awful I never leave my bed.  When I feel just slightly less awful I make an attempt to get out of bed and live on the couch.  While limiting my activity might sound like exactly what I’m doing, little things like getting more water, swapping a dvd, getting up to use the restroom, answering the door – these can all be way too much.  One thing I do pride myself on is pushing myself a little every day no matter what my current breathing condition is.  Some days that’s picking up the living room or doing laundry.  Other days it’s me walking to the mailbox and back.  On really good days it’s parking a half mile from my office and riding my bike after work.

Tonight a friend of ours came over to watch The Newsroom and I had been on the couch for hours.  Even after seven breathing treatments today I start feeling bad out of no where.  With all my “taking it easy” I’m now sweating, PF has dropped by 100 and my O2 saturation is down 5%.  So I take another treatment and ride it out.  An hour later my body has mostly chilled out.  The coughing started and I decided to just take some cough syrup instead of letting it get bad.  Now I’m back on the couch watching Anchorman (thinking about what a Newsroom/Anchorman mashup would look like) and wondering how late I’ll be awake tonight.  I’m wheezing out of nowhere, more awake with the medicine I’ve taken and the only real reason I have for all this is nocturnal asthma.  It’s just one of those things I deal with on a regular basis.

To be fair this is probably the best I’ve been in a while, even though I don’t feel good at all.  It’s weird how “normal” changes over time when you never feel quite up to par.  Once you get a little better you may think you’re a million bucks only to be reminded three months ago you would have been seriously concerned with this million dollar feeling.

A couple years ago I had to stay home from work for three weeks – doctor’s orders.  My lung function improved 300% over that time period and I actually felt “great” for most of that hiatus.  I’m not planning to stay home for almost another month, but this next week will be a great start in the right direction.  At least I’ve been able to buzz through some HBO series and really beef up my Netflix ratings.  That has to be worth something, right?