myasthmajourney

[myasthmajourney]

Keep Trying

Well, I have been really quiet lately.  That is actually a good thing as this journal is specifically for me to complain about my asthma.  Since July, 2018, I have had more success and progress than in the last 5 years.  Even this winter is not so bad--probably because it is unseasonably warm, but the dryness is still a concern.  I had a brief tumble when I damaged my vocal folds (they were inflamed, nothing serious) and that was wreaking havoc on my ability to manage my asthma because--well, airways XD  But since it brought to light and isolated a couple of other symptoms, I was able to bring things under control--though barely.  Much much better than last year or the year before---or any year!  From July until around mid October-early November, I was exercising everyday with P90X, walking the dog, getting the house in order and cleaned---everything!  Then I dipped, lost it, regained, lost it again, and now I am hovering somewhere in-between.  But I learned some very important things.

You see, every year I try to improve myself or my habits in some way.  Last year was the closest I got to being successful because I started implementing a planner and master task list.

I started out on the wrong foot this year, but I think I have a clearer idea of how to be more successful in my goals.  My biggest roadblock is my attitude towards my health.  Come winter, I always get anxiety because my asthma makes me so weak and inefficient.  This year is better than most, but I am still facing the inability to do the things I want.  I need to change that thinking.

Instead of thinking what I can't do right now (which is a lot of big things) I should think of what I CAN do right now (which is a lot of small things).  So instead of "I can't clean the kitchen and it desperately needs to be cleaned in full!"  I should think "I can wipe down the counters day--progress!"  Instead of thinking "I can't exercise today (IE 30+ minutes of a solid workout in one of the main categories)" I should instead think "I can do three knee-pushups today (it was actually 5 followed by 8 wall push-ups.)

It is so easy to get caught up in my inabilities and weaknesses, especially because I tend to do what I think I should be able to rather than work within my limitations.  Just because I can't do the things I WANT doesn't mean that I can't do pieces of the things I want to do.  It will take a little practice--I will still think the old way a lot, but I have been hear before.  I used to have a such a negative view of myself, and I changed that.  If I can change that, I can change this.  I just need to follow the same steps as that time: when I think of the negative, immediately think of and focus on the positive.

I think that I am finally able to see this in part because this year has been a good year in comparison to previous, and more of the underlying issues that aggravate my asthma are coming to light and being dealt with.  Globus sensation and hyperventilation are both things I can control.  If I can keep them in control and not let anxiety get the better of me, I can bring my asthma into a better place.  The mind is a powerful tool--it can work for or against you.  And it is easy to forget this when you are stuck inside the forest.

[myasthmajourney]

The Active Schedule.

That is what I am calling it, anyways.  I don't know if it has an actual name or not, but so far, I haven't seen anyone do something like this.  So far, it has worked beautifully for me.  I have always struggled with rigid schedules (do this at this time for this amount of time, etc) but also lack discipline to wing it.  So the Active schedule is basically an in-betweener.  I moved it from the excel sheet to pen and paper after finding out that if I lose my computer, I lose everything XD  I think the pen-paper method works extremely well, maybe better than the excel sheet.

I first started this for housework because my asthma kicks my butt sometimes, and I lose track of what I did or haven't done.  I made a list of all the chores/work I need to do around the house, then divide them into categories.  After some playing around, I found that these four categories are perfect:

Once a Year-  Literally done once a year only.

Yearly Rotation- Stuff that needs to get done a few times a year.  Maybe twice a year, or six times a year, etc.

Monthly rotation--stuff needing to be done a few times month.  Maybe twice a month, or six times, etc.

Rotation-- the stuff I want to do as often as possible.

Within each of these categories, there are four columns to help me plan out the day or week or month/whatever.

Task name--  Exactly as it sounds :)

Time to finish and Energy--  This is probably the most important category for me.  I have an estimate time to finish that I can usually get when I am good.  If the task is low- energy, I can probably do it even if my asthma is tearing me down.  I can put off high energy stuff during these times, as I know I won't be able to do it without killing myself :P

Date-- the date done.  I can see when stuff hasn't been done for a while at a glance.

After I got that all written out and organized, I grabbed some of those moveable stickers for planners.  One has "Priority written on it (the thing I want to do NOW), one has "Second" and the other has "Third."   I move this around on the chart to help me plan the top three things I want to get done.

So maybe I want wipe down the kitchen as soon as possible.  That gets priority.  After that, I want to sweep the entry (Second marker).  Next, I want to organize the fridge (Third marker).  Once I finish the kitchen, I write down the date and move the priority over to replace the Second marker, the second to replace the third marker, and the third gets to be put on a new task I want to accomplish.

This has helped me so much--especially when I end up going weeks without being able to do anything more than crawl around the house.  After long absences, I can look quickly and jump right back in as soon as I am well again.

This method has worked so well, that I am attempting to apply it to my hobbies/studies that I want to accomplish.  This version is actually much simpler, though, because time and energy are not really necessary and the date is kind of superfluous.  It isn't something that HAS to be done and kept up to date necessarily---just stuff I want to do.

I already made a master list of all the stuff I want to do/accomplish/etc, and I look at that periodically for projects.  But for this Active Schedule, I just wrote down the very broad categories on sticky tabs.  I stuck them one after the other down along the side of my computer screen.  As I do one activity during the day, the sticky tab gets moved to the other side of the screen and I move on to the next one.  I don't really decide on how long to work or do that activity, though.  I just do it for as long as I feel like.  I will have to think about this one a little more, as there are some projects I would like to come back to more often than next rotation.  But still, the point of the stickies is to make me do it.  I can't explain *why* it seems to work, but it does.  Maybe that is part of my visual nature?  Anyway, I really like how the active schedule works.  I feel like I can keep up with things a bit better now.

[myasthmajourney]

Random fluctuations.

I am pretty sure I had an allergic reaction plus almost asthma mixed in with a touch of hyperventilation yesterday.  Not sure how else to describe it as it doesn't technically fit anything else.

All i know is that I was really uncoordinated, I felt a pinch while exhaling, my breathing was very hard to control (bouncing between slightly fast inhales to slow and deep, to difficult to exhale).  I was exhausted, irritable, and short of breath doing just about anything.  Reliever inhaler helped take the edge off but couldn't affect the parts that were not asthma.

And I don't know what triggered it.  Looking over my day--it was pretty typical.  I walked the dog with some jog intervals, wearing a face mask the entire time.  I did some yoga, cooked lunch (minus mask).  All I can think is that either something is blooming, the wind leftover from the typhoon is knocking stuff around that my body doesn't like, or I shouldn't have pet coal without a mask yesterday.  my husband wonders if the green onions I cut up were impacting me, but hard to say.  No allergic reaction like most people--just crummy breathing, even though all my numbers are perfect. Peakflow good, oxygen levels normal, temperature fine.  Heartrate was a little high, but it always is (side effect of inhalers)

Today is *better* in the sense that I can breath more normally, but now my chest feels "weird."  This is the same weird I always get before an asthma flare--I KNOW this feeling.  Light coughing after breakfast and still feeling tired, even though I got 8 hours.  No, I didn't walk the dog this morning.  I figured I need to recover from yesterday--whatever THAT was.

I started a journal that I plan to fill out through the day along with all the states I am taking daily to see if I can find a pattern.  It really sucks that on Sunday, I was excellent--beyond excellent.  And then yesterday, straight crash.  Always feels like for no reason even though I know there is some kind of reason.

Oh well.  today is a super easy day--only two classes.  I want to get the room vacuumed (haven't had a chance to in a couple of days and it needs it) and we need to brush Coal out again...ugh...coat blow.  My husband has an interesting theory.  Maybe it isn't really an allergy. Maybe dog fur is getting into my lugs and scratching it up.  Is that even possible? XD XD  Well, nice though.  Let's hope I figure this out within the next few months.  I hate having a problem and not knowing why.

[myasthmajourney]

Traditional Japanese Doctors--ugh

Thought I would share what a visit is like with my doctor.  This is kind of typical, especially when we are concerned about something or want a change/adjustment/whatever.  If we just come in, check in, get out and get our meds, we have no real issue.

I want to preface this by saying that this doctor came with very good reviews.  He is one of the top pulmonary/lung specialists for asthma in all of Japan.  He has given lectures, taught most other doctors, lots of books, awards, etc etc.  I am guessing he is around 50-60 years of age, his son also has a practice (I think).  My husband didn't choose this guy lightly.  He is also the only nearest practitioner for...well, miles.  The next one is about a 2 hour drive--ONE way.  To be on insurance, we have to go as often as the doctor feels is necessary, or every month for refill reasons or something like (I am a little uncertain of the details).  There is a large hospital in the big city a little closer that calls in specialists from the prefecture--but that means we have a good chance of running into him again.  Talk about embarrassing.  If we go somewhere else, we burn a bridge--and I am not willing to do that just yet.  We may still seek a second opinion just for the second opinion, though.  Japan is also really weird on the hierarchy thing within the medical system, and there is a very tight in-bed going on between insurance, pharmacy and the doctors.  AS you can see, this is very complex.  So there is a little background.  Been going to this guy for about five years now, I think.

Okay, so I go in yesterday feeling not so hot.  My peak flow was around 570--a good number for me--but I was feeling.  Something.  My breathing was slow, but shallow.  Inhale was less than exhale, but the exhale was pretty long.  Extending the exhale or shallowing my breath didn't help, but I got some relief from my reliever.  So I let the doctor know that I wasn't feeling to good.  Then, I decided to ask, in my broken Japanese, why I can have asthmatic symptoms even though my peak flow was good.  I also asked him about why I can wake up feeling like I run a marathon or did hard exercise in the middle of the night.

Now, I know the answers to these.  Between a good book, lots of online articles, and forums like this website, I know that the former is due to small airways acting up while larger ones are still okay.  I took choir and singing for years--my breath control is awesome, even if my lung functions are lacking.  I also know that the sleeping thing is basically me having a flare in the middle of the night and sleeping through it.  But I wanted to see what the doctor said.  I guess you could call it a small test.  I also tried to make this clear that I have noticed this for YEARS, not just recently.  I think that got lost in translation.

For the former, about high peak flow but options--he did this...hmm, good question thing.  He didn't have an answer.  He took out the SpO2 device to check my oxygen.  On my device at home, I usually stick at 98 and occasionally dip to 97.  I almost never go to 99.  There is a 1 point difference between the doctor and mind.  His says 99 for my 98.  Today, it said 100--so he said hyperventilation.  For both questions. ::insert eye roll here::

I know that arguing won't do anything, but I tried to let him know that I really don't have any hyperventilation feelings.  It is *different*.  My breath may be shallow, but it is really really slow.  No headache, no tingling--and my breath only quickens when I do stuff.  I wanted to explain in more detail, but that was the best I could do.

So he says, okay--we how about we do a spirometer and pulmonary test.  Yay.  I don't know how to explain all the tests.  Basically, the first is some kind of breath control (something I have always done pretty easily).  You blow in and maintain your breath so that the marker is in the green zone.  There was another inhale/exhale test.  Then I put my mouth around this device that did a weird pulsing.  That always feels weird, I hate it.  Then I did some more in and out breaths.  These had a up-down graph (up for inhale, down for exhale) and a spiral.  I did notice that on this one, there was a number up in the right hand corner that--i think--said temperature.  The number was something like 29--well, over 20 and under 30--this will be important in a minute.  Anyway, needless to say, doing the test was rough.  I had to take a LOT of breaks, and I coughed horrible after we finished (and a few times between takes during this final bit).  then I got a breathing medicine thing. Not sure what it is--you hold this little glass vial and inhale a kind of steam.  This stuff usually helps a lot.

In we go.  The doctor says that my lung functions have improved greatly over the last year!  Yay!  Well, I am hesitant.  I really want him to do this in the winter, when I am really bad.  But I didn't say anything at this time.  I think he said the other tests indicated a slight hyperventilation  And then--

Now this is where that temperature thing is important.  He looked at that number and basically was like--wow, something IS going on here.  This is too high.  It is usually only like that when there is some allergen irritating the lungs.  So he explains that I am basically sitting on a volcano.  The allergen hasn't fully manifested as an allergic reaction, but it is close.  This is probably why I felt like crap.

You have no idea how badly I wanted to say "See, I TOLD you so.  I told you something was wrong and it wasn't hyperventilation!"

So he took some blood to send to a lab to check for what the allergy might be and set me up on an IV plus a pred for the next couple of days to keep it under control.

Of course, a wonderful long-time friend asked an important question that I didn't even think about--why a blood test?  Why didn't he do a prick test, or if he isn't an allergist (which he isn't) why not refer you?  Excellent question.  I don't have the answer.  But if we don't get a good answer from the blood work, or even if we do, we will probably refer ourselves if he doesn't.

Right now, there are a couple of possibly candidates for the allergen.  First up, and highest on the suspect list, is my dog.  We got him almost two years ago and I didn't show any issues until recently.  Had dogs and cats all my life, so this becoming an allergy would really really suck. I love animals.  Another possibility is the left over stirring of dust and mold spores from the remodel.  Lower on the list are things like pollen and whatnot.  I also went on a long trip around Japan with my mother--so something could have come in from that.  Dunno.

Meanwhile, we are adjusting how I interact with my dog until we get a clear idea of how to deal with this.  I wear a mask with him, we are increasing vacuuming, I have a smock to wear when playing/interacting with him, no more upstairs for him, and we willy try to increase his brushing.  Also, wash hands a lot.

We will find out for sure what the blood results are next week.  Then we will go from there.  But yeah, this is the kind of battle I have to fight.  Having a monopoly like this is horrible--no accountability, no need to stay up on the latest research, etc, and no choices for the patients.  He may be good for old people who are used to the traditional: he is a doctor, no questions, just do what he says.  Not good for someone like me who, the only reason I was found to have asthma was because I ASKED to be tested.  Seems like I have to be in charge here instead of the doctor :/

Right now, I am feeling pretty good--but the last few days I seem to go down-hill in the evening, so we will see how I am later today after classes and whatnot.  Luckily, I only have four classes today with a free afternoon.

[myasthmajourney]

Like a Ping-pong ball

There are a million reasons why I haven't updated--all of them revolving around the remodel, which finished a little less (or more, I forget) than a month ago.  It is amazing how well I made it out, all things considered.  I need to lay out the last couple of months in my excel sheet and see the charts, but I am willing to say that I had almost two golden months with hardly any issues.  I played it super safe--no going outside unless I needed to, taking my reliever any time I needed it, and taking a day off if I felt a little "funny".  Basically, this winter was my first attempt at "paranoid asthmatic" to see if there was a difference.  There was...but not one I like.

So let's fast forward a bit from all that and see about now.  Now, I am sitting at the computer with a slightly heavy chest and slightly swollen lymph nodes.  Yup, got a cold.  Well, to be more accurate--I got a slight cold a couple of weeks ago, and was really amazed at how quickly I recovered with no asthma issues!  I had a few days of high energy and feeling good...and then I got another cold, this time it hit my lungs.  I knew it before it even got there, and I even developed a slight fever instead of the typical low-grade and sleepiness.

So I went to the doctor because I knew it was going to hit and I have less than two weeks to get well for my mom's visit.  I haven't seen her in 8-10 years.  He gave me IV, a breathing medicine, some pred, and I went home.  About a day or two after the IV/med, I got a nasty sore throat.  I lost my voice in class a couple of times and also ended up with a rough cough that I hate.  It always feels like it rips my throat.  So whatever the doctor did, it brought the cold fully out and it is running its usual course.  I am not upset about it--I kind of expected it.  I go to see the doc again on Weds for a followup, so we will see how things go.  Right now, I can not bring my voice above a whisper and I am very aware of my tight lymph nodes right now.  They don’t hurt, just tight.  My husband is naturally concerned as I am out of commission.  It is really frustrating for me, too.

At this point, I am still playing paranoid but I haven't taken my reliever as much as I could.  Well, I don't have classes right now and I am just a little paranoid about taking my reliever while on Pred.  I take it as I need it if I work, though, without hesitation.

I really am not sure what the real trigger was.  Could be a number of things.  Been trying to walk a bit outside--but the weather has been less than predictable.  Strong, chilly winds mean I have to run home--but I got caught out longer than I meant to a couple of times.  Then there is just the up-down craziness of the weather anyways.  25 degrees Celsius in the afternoon and 5 in the evening--though at least NOW it is stabilizing.  Plus wind.  And then the fire in Syberia.  ::insert eye roll here:::

Most likely, I am dealing with a domino effect.  My body seems to enjoy taking tallies and cashing in like that.  If it didn't impact my quality of life so much, I really wouldn't worry about it.  As it is, acts of cleaning and doing anything that amounts little more than walking to the bathroom can cause me to get out of breath.  I am teetering at the 540 mark, which is the mark that usually means things will get bad if I do one thing wrong.  I know that mark--that number is burned in my memory forever.  Anything below 550 is bad for me.

I think a lot of people would enjoy the forced break.  It is nice to be lazy now and then.  But I hate it.  I hate not being able to chose to be lazy.  I want to do my nightly wipe down again because having that clean house feels good.  I still need to finish organizing my room--maybe half way there now.  We need to start organizing the big room, too.  and I found my zest for cooking in the new kitchen--but after that incident, I am very cautious.  It was before the cold hit me--I could barely stand as I was trying to cook.  I had to squat a few times, took my reliever and was near tears from the struggle.  I have done some breakfast works, but I haven't done lunch again since and that bothers me because I am finally figuring this cooking thing out.

Now, usually in weather like this is when I start becoming stellar and healthy-ish again.  But the weather is still pretty dry, and while we are near the end of April, the weather is more like June-July, which I am sure is not helping anything.

I keep wondering what the hell is wrong with me, though.  Perhaps just the bad experiences piling up?  As soon as I hit 36.8-9 ish on the thermometer, I go into lock-down mode because that is the first sign of a cold--usually a chest cold, the kind that goes into my lungs.  Or a throat thing.

Anyway, this medicine is making me sleepy.  I have to get over this.  at times like this, I feel like I will never get my life back.  Like I will always be weak, unhealthy--I can't even take a ten minute walk.  And I always compare myself to before--always.  I always dream of doing Zumba again, or jogging, or running around outside with my husband, hiking.  I dream of it, but it feels like something forever out of my reach.  I feel like I do everything I should, and it doesn't matter.   I need a personal trainer or something to guide me through all this like all those star athletes have.  You know ,the ones everyone lauds as wonderful examples of what you can do if you are asthmatic--while forgetting to mention the wealth and resources they have available.  Those types of people just aren't inspirational to me because I can't try what they do.

Well, anyway, this is getting rambling.  Update complete.  Consider me in the almost-grandmother territory.  I can walk, but all movements are kind of slow.  They cause coughing, too, and make me out of breath.  But I can do things here and there at least, which is better than last week when I couldn't do anything.  I would like my voice back, though, please.

[myasthmajourney]

It’s never just ONE thing

Yay asthma--it has returned.  

I was doing really well this last week.  Good peak flows, feeling pretty good about myself, and trying to do more things.  And then Saturday hit and it was like I was beat over with a 2x4.  Walking like a grandma, trying not to laugh, and just plain exhausted!

It took some thinking on my scatter-brained part to figure out that it was an accumulation of things.  Some woman wore perfume into my small, enclosed class.  A typhoon hit earlier this week.  I tried to take a short walk but the weather's wind was colder than expected.  I laughed really hard at something I found online---AND as I look over this weeks PM2.5 records, I see they were freakin high as all get out.

Wow.

So I spent most of my day off sleeping and praying that the light of day would be brighter soon.  My chest felt just bad--a kind of pain, but not pain.  Pressure.  that is the best word to describe it.  Going up and down the stairs was like running a marathon.  1..2 steps.  Pause for a break.  two or three more.  Ugh.

Anyway, yesterday was the worst and today gradually got better.  Rest is the best medicine.

[myasthmajourney]

Half-way there

So I have been surviving this remodeling pretty well--the exceptionally warm weather is helping, I think.  I just had one bad episode that lasted a day and immediately went on its way.

Remodeling guys are doing an excellent job---careful sealing of the area and whatnot to prevent dust and dirt spread.  I really appreciate it.  

I would say that stairs are the most difficult thing for me right now.  I go up and down them way more often than before, and several times in a row can kind of knock me out a bit, but at least I can manage.  Love these good days.

[myasthmajourney]

A week into Remodel

We are going into the second week of remodeling, and so far so good.  The only flairs I have had were related to normal triggers.  I think I am very fortunate that the workers seem to be very considerate of dust and sawdust, though I am not sure if that is just a Japanese construction thing or that they know about my asthma.

It's still pretty difficult for me to do things outside.  I have tried a few times and failed miserably---but in the house seems fine.  Too much, such as what happened when preparing for the remodeling, isn't good but we are finding a good balance. They are starting on the wash/changing room this week, and next week is the kitchen plus toilet.  Yay!  Then after that, our room upstairs.

All in all, I am really happy with how things are going so far.  I hope it keeps this up.  I will admit, I haven't been checking my peak flow as usual.  It's been tough to adjust to the sudden cramped quarters and busy days.  I at least try to get in once a day--and it shows a semi-low from my best, around 545-550.  That is usually a really iffy time for me, but I keep my meds at hand and take it easy when I need to.  Listen to my body is the best thing right now.

Oh--there was one point where I could totally tell the dust was there.  the first day.  They had demolished everything: walls, floors, ceiling.  it was an exceptionally windy day that day, and after a few minutes, I could feel it weigh down on my lungs.  I immediately put my mask on and high-tailed it upstairs.  Was able to avoid some damage there.  Whew.  Have to watch out for when they do the kitchen, then.

[myasthmajourney]

A Little Relief ^_^

Whew---close calls.  All around, that was a dangerous week!  After my sis-in-law caught the flu, my father-in-law followed suit.  How I managed to only get a low-grade cold is beyond me, but I am grateful!

I've been maintaining an okay stance.  I haven't needed my relief so much this week, only for small things like vacuuming and after playing with my dog.  I thought things were looking good until I played with my dog outside XD  After five minutes, I was coughing pretty bad.  Sigh.  But, well, that answered THAT question haha.

In the meantime, I started working with someone from the Asthma UK boards on a Diurnal Variation worksheet.  This guy is awesome--he is really good with excel.  If he posts the finished version, I will share the link.  Anyway, one of the interesting things about this Diurnal Variation is that it gives an idea of the amount of fluctuation in your peak flow and if it is abnormal or not.  From what I am learning--less than 20% is actually within normal or "safe" range.  So this might explain why the doctor is not too concerned with my readings, though that doesn't explain the symptoms.  Of course--the goal is a flat rate that does not fluctuate, or barely does so (this is normal people).  I think one reason my symptoms are not so great is because I am constantly going up and down.

Anyway, it helps put things into perspective.  I am hoping to learn more as I go.

[myasthmajourney]

After a Month....Almost

Sorry for the silence.  It has been kind of an up and down month.  After I got over my New Year cold and things seemed kinda okay, it came back with a vengeance.  This time, acid reflux/GERD was the culprit.  It took me forever to figure it out because I had never had these symptoms before.  And while I was very gassy and uncomfortable, there was no sour taste in my mouth or anything.  Still, I took some of the medicine that a doctor gave me back in November after the gastroscopy through the nose---and it solved the problem.  Apparently, my asthma fatigue made me fall asleep too soon after eating—I need at least an hour and half, two hours, or I will suffer again.

 After that, it was pretty up and down.  Some days were great—got cleaning done and played with my dog.  Others were not so great—I tried to clean and regretted it, couldn’t play with my dog.  So overall, a typical roller coaster.  I got in maybe three or four days of exercise, and then I had to work on getting myself under control again.  Very frustrating, but for some reason I am not as down about it as before.

 Right now, the house is kind of  a huge danger zone for me.  Sis-in-law had type B flu last week, father-in-law has it now, and mother-in-law got a little cold.  I had a cold last week, too, and am just grateful it wasn’t the flu and that it didn’t impact my asthma.  The snow was fine, too J  No, what impacted my asthma was the wind that came after the snow. It was horrible!  Like fighting god to breath XD  it lasted part of Friday and most of Saturday.  Not cool, especially because it impacted my work a bit. I still went (self employed means no days off) but man, it was tough.

 Right now, I am super sleepy.  My dog woke us up in the middle of the night for some reason---potty he went, but he was still upset about something.  Since we couldn’t figure it out, we ignored it.  After the potty break, he calmed down quickly, but I still kept a vigil for a minute or two.  Today, I woke up soooooo tired.  I ended up going back to bed later, and slept most of the afternoon.  I still feel tired, and I can tell it is my lungs that are the culprit.  At first, I thought it was last night, but then I tried to climb the stairs XD

 Remodeling starts in two weeks.  We really need to organize and get ready.  A little nervous about how it will impact my asthma, but I pretty much demanded we do it now rather than the summer.  There are many reasons for this.  1) I want to see if it has any impact on my asthma.  Since summer is my best time, I want it cleaned up before summer so that I can recover and see how the next winter goes.  2) Around summer/Spring I MUST take a shower every day. The humidity makes sure of that. At least in winter, I can safely skip a morning and not worry too much.  We did find a public bath we can use, but if I am feeling really bad or something, I have a little more freedom.  3) I want the place to look nice for my mom when she comes and visits in May.  I haven’t seen her in around 7 years.  4) Regardless of Summer being my best time of year, I still have flairs and attacks. This leads me to believe that, no matter when we do it, I will still suffer.  I honestly do not believe that summer would be any better than winter in this case.

 The reason for the last one is simple---one of the biggest issues in Winter is PM2.5 that comes over from China.  Air pollution and such are huge triggers for me—probably on par with cold, dry air. So if you consider the amount of air pollution that will arise from remodeling (dust, the mold spores in the dust, etc) then it is obvious that the flare or attacks would mimic winter.  Of course, they will seal up the area and whatnot—this is Japan and they have strict customs and rules.  But my sensitivities won’t care about that, especially as I still have to go downstairs to use the toilet and work. My husband doesn’t quite agree with that logic, but we have chosen and the dates are set.  My blue inhaler is on hand and ready, too.

 And who knows?  Maybe it won’t be so bad.

[myasthmajourney]

Looking over the Weekend

So after my doctor's appointment, I got some pred for about three days.  Of course, it greatly improved my asthma symptoms (was there any doubt?) but I still needed my reliever a bit--which is actually unusual.  I had one day after the meds were done that was really nice, and now--today--I am on the verge of another relapse.  The weather is going crazy, so that is probably a big reason--that and lady's month is almost here.

Still, I like to be sure that there might not be other factors.  My husband and I went to a nice little hot spring resort for a little break.  Really inexpensive place, but still nice.  We did an hour of karaoke, a little video game play, but mostly relaxed in our room or the hot springs.  There are several reasons why some triggers might have been there, too. 

First off, the spaces between the main lobbies were really cold.  Cold, dry air has always been a struggle for me and this was the first time I refused to wear the complimentary yukata--a staple for our trips.  It was cold enough to make me wear my regular clothes and coat to the springs and in between other areas.  Never good.

Another thing was that, while our floor was none-smoking, the floor immediately below us was smoking.  And we had to pass through the floor briefly to get anywhere at all.

The next fun problem was our room--the ac/heater thing was all kinds of weird, randomly going strong or weak, hot or cold, and it was angled directly towards the beds (our only place to sleep and sit).  We also had to fill the bath with hot water to create a kind of humidifier effect.

I am pretty sure that the food was fine, as nothing was a problem there, and I didn't start to feel anything until I woke up this morning.  The beds were really nice, and I got a full 8-9 hours of sleep.  Even then, I was so exhausted when I woke up--like I had run a marathon in the middle of the night.  I ended up sleeping another three hours after that, and still felt so tired.  I have taken my emergency inhaler a total of four times already today, whereas yesterday was only one time in prep for the karaoke (which, by the way, the room was super dry and had an ac unit pointed directly at us in a small room).

Basically, I learned some things this week about my asthma.  I learned that my asthma is still wreaking havoc, even when it seems like I slept the night before.  I learned that I am very fragile this time of year, especially this year, and that there are many physiological things that I need to correct.  The problem is, I can't really get the professional help to fix those things right now.  I am completely on my own for them, and motivation is really hard for me to come by when I am struggling to make my lungs function properly.

I am starting to learn to pay attention to where my struggles are.  I can say with a degree of certainty that my exhale is shallower than my inhale.  I didn't realize that this was so important, but it is.  It marks a distinction between hyperventilation and asthma, or that is my understanding.  Now, if I focus, I can force the air out easily enough and long enough, but there is a definite slow down.  I think there is a direct connection between that and feeling like I forget to breath.

Breathing exercises. Vocal exercises. Exercise in general. Medication.

So far, those are the things that I need to work on to maybe possibly help me manage my asthma.  Everything outside of that is usually out of my control (I really can't control the weather...yet XD)

I need to get back into singing--or at least some kind of vocal training again.  The constant struggle with air is causing me to be tense most of the time (even as I sit here typing, I can feel the tension in my neck and shoulders despite good posture).

While singing karaoke this weekend, I noticed how the tension builds in my throat and shoulders.  Same with while I teach--especially if I have to look down to read something.

What I have learned is that vocal fold tension and neck tension can impact the flow of  air to the lungs because of how the human body is structured.  Impeding air flow can sometimes cause an attack (hence why poor technique in exercise, sore throats and colds, etc, are triggers).  Well, that is a simplified version of it.  So I really need to get that back under control.  My lessons with the Rabbi were cut way to short--before we really got into those kinds of details, and that saddens me.  He was an amazing teacher.  I think he knew about my tension even way back then, hence how he taught me.

Going all out on my own will be difficult, but for now it is necessary.  I breathe right--which is great, actually.  Even as an asthmatic, I naturally breathe through my nose and use my diaphragm and all that, so that helps a lot.  But now I need to get to the next step.  Considering the state of my neck and all that, it is not too surprising that this would pop up.  I suffered a lot of whiplash as a child due to car accidents.  I saw one X-ray where my neck was way too straight, and I think that affects a lot of how I move, sit, talk, etc.

All of these things I need to do, and I am still struggling to wake up most of the time.  Just thinking about what I need to do is making me tired :/  I hope I can get some descent sleep tonight.

[myasthmajourney]

Back from the Doctor

Okay, survived to get to the doctor.  Basically, I got some Prednisolone, Mucosolvan, and sent on my way.  I am feeling better, and though it has been up and down, I guess I am managing it enough :/

Well, the doctor did seem to want to give me a medical inhalation and maybe some IV--but today, there were a couple of flu-infected people.  The risk just wasn't worth it, so we agree on that much.  But sitting in the back of my mind is the feeling that I should have my meds re-evaluated and trying something else.  This isn't working.  I feel like I *shouldn't* have to take my reliever 3-5 times a day just to survive.  This isn't right.

I am at the point now where, if I stay seated and relaxed, I am mostly okay.  My chest feels a little weird, but that is so typical and less than what it has been that I don't really care.  If I get up and walk around, try to do something like the dishes or laundry, I end up coughing badly.  Yesterday, I ended up taking my reliever SIX times.  Six.  That can't be right.  This shouldn't be happening like this :/  But what recourse do I have?

I don't know much about what the medical system in Japan is like, but my husband says that the drama Doctor X is  great example of it.  There is some kind of hierarchy thing based on tenure and status.  The higher you are, the less likely you are going to face any kind of criticism or discussion.  Doctors have this group thing--kind of like those cliques from high school.  In the show, they show the doctors walking in a group with the Top Dog at the front of an extending triangle, with the lower status doctors and such in the back.  It's like that, my husband says.  Basically, doctors still have a god-like status--you don't ask questions or anything, and jumping around to various doctors is frowned upon.  Not only that, but trying to get a second opinion can be tricky.  You see, if the other doctor you see is part of your first doctor's group--and he is below that first doctor, he probably won't take you, or just agree with the first doctor, or he may end up using you as a battle front for the first doctor and end up screwing you over for getting much help.  

Well, this is all according to my husband, who is native Japanese.

Anyway, the doctor we are seeing now is supposedly on of the top doctor for pulmonary and lung function.  He gives lectures, teaches and guides other doctors, has books, etc.  To top it off, he is the closest doctor to us (literally 15-20 minutes, everyone else is over 2 hours) and there are not many options in my prefecture.  The odds of other doctors being in "his group" and beneath him are extremely high.

It is depressing thinking about it. My husband chose him because of all those laureates.  I mean--he is said to be one of the best, so he must be, right?  But I often feel like he doesn't take my situation seriously, or even personally.  There is no personable feeling to him.  He is nice enough, that is true, but I feel like I am being compared to other patients.  I am not as bad as patient X, so I am not that much of a concern.  I should just take my medicine and get over it.  I don't know if that is how the doctor really views things, but it certainly feels that way.  There have been several times during the years that I felt flat out dismissed.  It pisses my husband off, too.  Today was similar, but that concern on his part about the flu kind of earned him some brownie points.  

When I am good, he is a good doctor.  when I am bad, I feel like I don't get the support or care that I need--and that I have no choice but to suffer and endure.  This can't be right, can it?

Anyway, the Prednisolone will help a lot, and maybe I will have a few days of respite before I crash again.

As you can see, I am not too hopeful about my near future outcome.  I just spent the last couple of days thanking my family profusely for the support they offer and apologizing for being like this.  I hate that I can't pull my weight.  And there are some things that only I can do around the house, so if I don't do it, it doesn't get done.  I keep saying I need to get my life back, but I feel like that is just not going to happen--and not for lack of trying. :(

[myasthmajourney]

Oh, I get it now...

So WHY was I unable to sleep last night and not feeling so hot?  I will now tell you why.  Because asthma is evil and my body hates me! :/

I spent most of my day taking it easy, but after two accidents from my dog (not really his fault---he wasn't given enough time on his walk), I decided that his area needed to be vacuumed and scrubbed down.

I nearly killed myself.

My body is still shaky, and I am super sleepy now.  I didn't really gasp or pant, but man..it took a number on me.  I might as well have run a full marathon, it was that bad.  For a long time afterwards, I just didn't want to move.

So that is why I couldn't sleep last night.  My body is on the verge of another nasty flare.  I wasn't getting better--that was a lie.  A horrible, nasty lie.  Sigh.  My peak flow crashed down again, and my oxygen stats are doing that fluctuation dance between 97 and 98.  Obviously nothing for alarm or concern, but man...man it sucks.  I was so hyped to exercise, but now I realize that it is impossible right now.  Good gosh darn dammit.

Well, hopefully, I will sleep better tonight and the world will look brighter.

[myasthmajourney]

Sigh..sigh...SIGH

ugh.... so tired.

My intentions over the last couple of days have been simple: go to bed earlier and get somewhere between 7-9 hours of sleep.  My lungs, however, don't seem on board with this idea :/

The first day wasn't too bad, actually.  I still went to bed kind of late and just slept in a bit.  It was mostly warmer than usual, so I couldn't sleep properly.  Stupid crazy weather.

The second night--last night--was bad, though.  I went to bed at the time I wanted, and was sleeping fine. Then, I woke up with potty urge.  Not unusual as I have a bad habit of drinking something like tea or coffee too close to bed time (coffee doesn't usually make me awake and alert like others--it actually helps me wind down).  So I go down, go potty ( I talk about my dog a lot and it shows in my vocabulary lol), go back up, and lay down to sleep.  And...

Lungs go in to freak out mode.  These are the times that are hardest for me to describe.  My breathing isn't fast or anything.  In fact, I generally immediately go into breathing-exercise mode where I focus on in versus out and all that.  Ideally, I would have just taken my relief and gotten it over with--but i was in that too-comfortable zone, didn't want to move and just wanted to sleep.  Eventually, sleep did come--but I am guessing it wasn't for a long while.  I woke up exhausted, managed to make and eat breakfast, and then went to bed again for another four hours.  Even now, I still feel exhausted and my breathing is right on the edge of being a problem.

I am really upset and frustrated.  I really REALLY want to start an exercise routine in the morning--something simple, maybe 10 minutes.  I started planning this out a couple of days ago--round about the time I tried to get myself to bed earlier.  And the thing that really gets me is that if I HADN'T woken up last night, I probably would have gotten some descent sleep.  That going up and down the stairs in the middle of the night to pee seems to make my lungs rebellious.

Well, Weds is my doctor appointment.  I admit, I am nervous.  With my new 3-5 puffs of my emergency a day, I am sure the doctor would say something.  But the thing is--now I am no longer enduring the small fries.  i used to just endure the little things.  To give you an idea: if, on a scale of 1-5, the symptom felt like a 1 or a 2, I would not take my reliever.  i would just endure and hope it gets better.  It usually didn't XD  Now, even at a 1 or 2, I take it.  That means I take it a lot more often, and sometimes twice within an hour.  The reliever doesn't always kick in.  I also am constantly thinking about breathing and doing breath practice every chance I get.  In fact, it is the first thing I check before I take my reliever: am I keeping my breathing calm.  Well, despite all that--usually it doesn't matter.

Yesterday was wind, today is straight rain.  Tomorrow will be sunny.  It is looking like my asthma will be a little crazy this week until the weather settles.  Oh, and "that time of the month" is near, too.  Next week, weds, so that means that this week may be up and down.  Yay.

[myasthmajourney]

And this is how asthma works :/

So I was feeling pretty good in my morning post.  Could make breakfast/lunch and only had to lean against the counter for a little bit.  Then I started to feel super super tired.  So, I did the descent thing and took a nap.  I only meant for it to be a short nap--but it turned in to a 2.5 hour sleep fest.

Of course, I woke up with what I call the “undefined breathing.”  Not exactly short of breath or heavy chest, but definitely weird and difficult to breath.  Definitely need to focus.    As I puttered upstairs and tried to *think* about breathing, I noticed something: wind.  Oh great.  The weather is messing with me.

So took my emergency.  I am probably going to take it again soon, as I am still feeling that persistent paper bag around my chest. 

So...how am I going to start this exercise and sleep routine again?  I have no clue.  I got a good 9 hours last night.  I shouldn’t be so tired :/  My peak flow was awesome: 585.  SpO2 levels are where they should be.  God, I hate this unusual asthma. I  was feeling so awesome this morning--like I could take on the world.  Now I am wondering if a short five minute yoga session would send me over the edge.

[myasthmajourney]

Starting 2018 out with...

Well---I survived the new year!

Only the first week of 2018, and it has been a roller coaster.  I spent the whole vacation sick :(  From the 30th to the 3rd, I had a low grade fever, sore throat, and heavy fatigue.  It *almost* went into my lungs, but I managed to barely avoid it.

Now?  Right as rain and my energy levels are increasing.  I didn't use my reliever/emergency at all yesterday, and I am hoping I only need it for a preventative for exercise today.  Roller Coaster is at the top of the hill! XD

Oh, and all those foods I was afraid were triggers?  Seems like I have overcome that mental block completely.  Mental POV is just as important as the physical--remember that.  

With the new year kicking in, I am taking my goal of overcoming the limitations of Asthma seriously.  First up is adjusting my sleeping regime.  You see, I generally get about six hours of sleep plus maybe a 1-3 hour nap in the afternoon.  Not really healthy, huh?  The National sleep foundation recommends between 7-9, but they do say you can "get by" with six.

Anyways, that is the first step (along with exercise, of course).  From here on out, it will just get colder and colder.  Hope I can survive. XD

[myasthmajourney]

End of Year

It's been a few days, so I thought I would say that---yeah, I am still here, and gosh it has been hard.  It isn't really dynamic, crush your chest and leave you gasping--but it has been a constant, low-grade level of pressure and symptoms that have been making it hard to do much of everything.  Easily getting out of breath doing simple things, coughing off and on, chest giving a light pressure all the time with an occasional squeeze to remind me what it means.  I have been taking my emergency at least 3-5 times every day since the last post, and mostly moving carefully while trying to encourage myself to do very light exercises and vocal warm ups (no singing yet).

And then, yesterday, there was a sudden clearing of the clouds.  The symptoms mostly went away and I found I could get some cleaning done.  I overdid it (as usual) but was able to mostly recover.  The only result was being out of breath.  Before someone says that it must be me being out of shape--that is not how my body works.  I did yoga earlier that day, and was fine until I started using one of those sticky rollers to clean up the dog hair before washing all the mats and blankets he uses.  THAT did me in (and no, I don't have dog allergies).  Just to give you an idea--if this was the summer time, I could have immediately jumped into this and not become out of breath or anything.  That is one way I mark my fitness level--I compare it to how I can do in the summer because the variable of asthma is mostly removed.

You see, round about May-June-ish, the weather warms up really nicely and the humidity starts to rise.  I always start out lightly with things, and find that I can sky rocket into almost normal levels quickly.  WITHOUT getting out of breath or showing most symptoms.  It is only in winter time that I really truly struggle.  Well, winter and the transitional seasons of Autumn and Spring right up until the cusp of going into/out of summer.

In some ways, knowing this makes winter time even more frustrating.  I KNOW I can do it, but suddenly I can't.  Makes me want to scream sometimes.

Anyway, today I am struggling with a sore throat that is most likely a gift from the myriad of students who came to class with colds, one of which had JUST finished the flu and still had some symptoms.  Ugh.  Oh, and laughing.  Watched something really funny last night (and will again tonight!  Laughter is medicine of the soul ^_^).  So yeah, there is that.  The sore throat is dangerous because it can eventually sink into my lungs if I am not careful.  I am kind of used to the patter now.  Sore throat to light coughing (first in the throat) that sinks down into the lungs and often ends in at least a nasty flare.  Maybe I should take my emergency NOW even though I am not feeling symptoms yet.  An ounce in prevention is worth a pound in cure, right?  Besides, my doctor's office is closed for the holidays and won't reopen until after the new year.  No, as far as I know they don't have phone consultations, and ER won't even look at me unless I am sporting less than 50% and low oxygen levels.  So, on my own.  Probably will always be on my own.  Ah well.