Monday, August 14, 2017

Changes abound...

I have not been good with taking my asthma and nasal medications for a while.  I have an alarm that goes off for times a day for the four times I take my meds, but I've always treated the asthma and nasal spray stuff as when-I-get-around-to-it.  When I started the Restasis, a twice-a-day med, I was trying to be good with it, but soon devolved into try-to-remember-it.  I think that, mostly, is because it hurts too much to use the medication.  SIGH.

Well, a little while ago, I sat down and looked at what I was taking when and how and such and decided to move all of those "stray" things to morning and the 7:00 PM slot.  Morning is a tad fluid, because I sometimes am too nauseous to get my meds down, so they really are mostly 7:00 AM, but often 8:00.  In any case, those are my two slots for twice a day meds (mostly 12 hours apart).  One of the nasal meds is actually every 6 hours, so I am still working to take it exactly on time.  That said, I have become rather regimented about my meds.

Or at least I am trying.

You see, I very much dislike any sort of sign that I am a "sick person" about the house.  To me, the quintessential sign is having meds on your kitchen counter.  So, I have not done that. I have taken great pains to avoid that.  Only, following alarms and such, creating a plan and such, only works when you remember to take your meds.  It is easier with the pills in my daily med boxes with their four slots.  However, the nasal meds and inhalers and the eye drops are not easy to remember.  Out of sight, out of mind.

Trying and trying and trying to be consistent and timely with my meds ... and failing ... I had an epic Come to Jesus talk with myself and created a meds station on my kitchen counter.

My desire for visual rest doesn't much care for things on my counter other than necessities, such as my knife rack and my jars for flour and those sorts of things.  I have kept a few things, such as my tea bag holder, the tiny vase, and a cooking cloth (old napkin), on my cutting board.  Somehow I don't mind if things are on there ... artfully arranged, of course.  In fact, when visitors come with their own medication boxes and want them in the kitchen, I put them on the cutting board.

So, I fetched one of my most favorite things from when I was a missionary in Africa: a GREEN woven bowl.  I had always kept it on my desk as a lovely reminder, but my days of working at a desk are over.  I thought that if I repurposed it, I might not detest my meds station so much.  In it are the two inhalers, the two nasal meds, the psyllium husk (that I changed when and how I take it as well), and the carafate (for dry throat) that I take just before heading to bed.  I find it annoyingly ugly, but I put my inhaler spacer (a newish development) on there, along with the pitted prunes, which are really just another "medication" for me.  At least Amos' theanine now fits in with all the other meds.  SIGH.

The crappy part, for me, is that having my medications in line of sight has helped me immensely in the whole remembering-to-take department.  The Restasis drops are in the refrigerator and I try to remember to take that med out when I fetch the "thicker" liquids I need to be able to swallow my pills.


You see, the swallowing specialist's recommendation was for me to take my medications with yogurt or applesauce.  Only I have a lot of pills and that would me a goodly serving of either four times a day.  With gastropareiss, I eat very small meals, save for a larger main dish, six times a day.  [All that goes out the window with regard to when I've had barbecue.]  I have baked oatmeal in the morning (the best thing to eat after battling nausea), some sort of protein when I wake, then something main-ish, such as the pulled pork tacos, then small servings of either veggies (like my beloved asparagus) or more protein.  With having gastroparesis, eating regular meals is just not possible.

When I have guests, I have the terrible habit of falling prey to Keeping Up With The Jones Syndrome, KUWTJS (or maybe just KUJS).  With guests, I try to sit down to breakfast and then lunch and then dinner, serving them as many tasty things as I can.  I intend to have just a little bit, but end up eating a full plate.  I grow more and more ill in my innards and take weeks recovering after my visitors have gone.  I always fret about just having them eat as I do (how weird would that be), even if it was one of my "main" meals.  You see, I have the pulled pork tacos, but no veggies or salads or sides with them.  Or a cup (no longer a bowl) of Santa Fe Soup or Black Eyed Peas Medley or 15 Bean Soup and, perhaps, a cornbread muffin or a custard cup of tortilla chips.

That gastroparesis study helped me to identify and to understand the pressure I feel to fit in socially when it comes to eating.  The table is probably the only social setting where—before I fell ill—I could fit in socially.  Back when I was working, and what and how I ate had to change, it was an inconvenience to others.  Non-profits, at least in my experience, do a lot of eating together.  I was no longer one of the team at the table.  I became odd person out who caused a disruption merely by eating differently and most especially when I would order and then bring more than half my food home.

Anyway, if I have four servings of yogurt or applesauce, I most certainly won't have room or the function to digest what I would normally eat to have a balanced diet by day's end.  I thought about how much better swallowing pills were with the most awful V8 juice the nutritionist had me start drinking.  I thought about it and went to the store and bought the greens version of V8 that I saw when I first bought the regular V8.  I thought I could alternate them and use them to take my pills during my four main dose slots.

Double ICK!  I mean who would want to drink this wretched stuff???  Not me, for sure, for sure!  However, since making the switch from water or tea or Gatorade, I've had much few fewer episodes of pills getting stuck in the Sahara desert that is my throat.

Well, these changes and the echoes of my stern self-lecture still ringing about my mind have resulted in better medication consumption on my part.  I do think that my getting more regimented with the Dulera inhaler, as well as the spacer, showed a marked improvement in my breathing.  Maybe it was that and yet still coughing and gasping that gave me the courage, during a wonderful GP visit on the 3rd, to ask about taking Combivent full time, instead of merely as a rescue inhaler.

You see, I have been waking up coughing and gasping all too frequently of late.  I totally and completely get why I needed to stop the theophylline and move to a pacemaker, but on the theophylline, after about six months or so, I stopped having problems with my asthma.  It became almost nonexistent.  Oh how I miss my beloved theophylline!  How odd was it that a medication given to me to increase my heart rate and help with the fainting from dysautonomia be one that used to be a mainline asthma drug?  I ask myself that quite a bit, especially as my asthma has been creeping back in my life.

Anyway, the Combivent inhaler makes me feel ever so much better.  I started checking into it and learned that COPD patients use it full-time.  That is why I wanted to try using it that way.  I mentioned it to four doctors.  But the fifth time I tried, with my new GP, I finally landed upon a "let's see how that works for you."  It turns out that the FDA recently also approved it for the treatment of asthma.

I have only had one coughing spell since starting the Combivent full time (the evening of the 3rd) and I haven't have awoken coughing or gasping at all!  Personally, I find that rather remarkable, but I am waiting to declare victory until my next monthly GP visit so as to have more data to back my claim.

So, in sum, I've been trying really, really, really hard to be more consistent about taking my medications, searching for the supports I need to do so ... including knocking my pride back a bit and making a meds station.

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