March 11: At least I like the pulmonologist

Visits with the cardiologist and rheumatologist were gloriously uneventful, in comparison to the last several. 


It's frustrating that despite my strict eating there has been no change in my Sjogren's symptoms, still get the swelling and feeling of something sticking in my left eye if I try to decrease the prednisone, this in addition to the Plaquenil & methotrexate (chemo drug).  We discussed ramping up to one of the stronger autoimmune drugs and I decided to wait until it's been a year before taking new meds, which also have more possible side effects. 


Cardiology was even less exciting, which is fine by me.  With the pulmonary hypertension (PHTN) that is now the main problem, secondary to the small valve size, there are only two possibilities: it stabilizes or gets worse.  It will not get better, and is 'moderate' at rest, which isn't great.  Time will tell how fast it worsens, clearly there has been significant deterioration in the last 2-3 years.  There is nothing to be done, in any case.  I gave my wryly humorous assessment that at least my retirement savings won't have to last too long, Dr C responded with his usual chirpiness: 'There are lots of new things being done in Europe!  Maybe there will be a new drug!  You never know!' He means well, and truly believes it, but I'm more pragmatic than that. 


Hope for the best, expect the worst and takes what comes.   This philosophy has caused several people to accuse me of being pessimistic, but after all that has happened in the last ten years it is realistic.  Some new treatment that will help?  Wonderful!  But I'm not getting my hopes up just to have them dashed again--it just hurts too much.


Of note is that my BP was down over 20 points from where it has been running.  While never high, it was consistently running 130s/80s in the last couple years.  These visits:  110/70 & 96/62.  The only explanation is decreased stress from leaving work, because there has been no medications for this.  And, maybe, the vegan diet--although salt remains an addiction!


 I've been working my bedtime back to a more reasonable time, and getting up earlier, although I'm still shooting for a consistent 11:30 pm and 7:30 am.  There seems to be a never ending flow of things to be done without catching up on long neglected things.  Need to file the appeal for SSD soon.


Pending good news:  it is possible that I can work on the LTD policy.  It is badly written: while one part says part-time work is fine (and surprisingly liberal), another part has it listed as an exclusion.  While the company tells me that the exclusion refers to those returning to work and refusing, they won't put the clarification in writing.  This is causing extreme aggravation. 


A couple days ago a cough started.  My asthmatic bronchitis bouts usually start with a sore throat, and this is different.  But the cough worsened, and this morning I woke with marked worsening and a temperature.  The more I moved around the worse it got, and talking caused major spasms.  While I usually handle this on my own it seemed prudent to have the pulmonologist who supervises the sleep apnea issues to see me when I'm actually sick, especially since these episodes are about 3 times a year, although this is now #3 since September.  The only explanation are the autoimmune drugs, which lower resistance.  I can't blame it on the work building at this point, or sick patients. 


Happily for me there was a cancellation in his schedule at 3:30.  My lungs cooperated well, showing off with several cough spasms and impressive wheezing.  Dr. K walked into the exam room with an opening line of 'that's some very wicked coughing you've got going on there', followed by obvious concern for the aggravation of my many & varied chest issues.  Not only is it painful, and runs the risk for another chest bleed, but will also be raising the pressure in my lungs even more.  His next line is part of what endears him to me:  'You tell me what works for you and that's what I'll give you, because with all your medical issues and meds I'm not going to risk anything new.'  We are trying one new cough suppressant, and he isn't increasing the dreaded prednisone. 


My goal now is to stay as still as possible, not laugh and not talk.  People think the latter is so difficult for me, but at home days can go by with only occasional murmurings to the cats.  Despite keeping very quiet even while doing this there have been several painful coughing/wheezing bouts, but all the meds haven't kicked in yet.  After finishing this I will be retiring to the couch until going to bed, suspect will be similarly quiet tomorrow.  Last week I learned a new beading technique and am hoping to combine it with some innovative meditation strand designs.  Still need to find an outlet for my creativity, without risking tax/income issues, but for now sitting still and fingering my stones is important for the therapeutic value alone.


Thanks for checking in,   Laurie