May 16: Sigh

Haven't posted for a month, because I kept waiting for things to change, hopefully for the better.  Sadly, they haven't.  On the bright side is that they haven't worsened, either.

The nightshade free (ANS for anti-nightshade, my abbreviation) diet isn't making as much of a difference as it seemed to initially with the arthritis, although it is better.  My sleep is getting a little better, the wakings are decreased from 3-4x/night to 1-3x/night.  Hopefully this will continue to improve, because I can't remember the last time I had a good night's sleep.

Weight still an issue, clothes an issue.  Figure the incredibly healthy eating is keeping me from gaining more, however, being on prednisone and going into menopause.  Refuse to buy larger clothes!

Poor exercise tolerance, getting out of breath so easily.  Probably a combination of deconditioning + autoimmune + pulmonary hypertension (PHTN).  Trying to walk more, slowly is the key, but can't do much more than a mile, which takes almost half an hour.  Doing yoga almost every morning, try for longer sessions 3x/week.  Would like to take classes, but those cost money and, frankly, I haven't looked for one since Gael stopped the ones she was doing.  Got spoiled: her house, only a few people, personally tailoring routines and only about a mile away.

Continue to go to office to do  charts twice a week, catching up from the months of feeling worse and the weather being bad.  Once I've worked off the current amount, which includes the monthly cost + deductible, it will be down to only once a week, which will probably correlate with not as many charts needing to be done.  Only doing 4 hours 2x/week sounded easy, but it requires more than 6 hour time commitment between driving, etc. 

I remain SO tired, was really hoping to start feeling better.  Honestly, I've felt quite overwhelmed.  Autoimmune disorders are sneaky like this: you don't look really sick, but you feel lousy. Gets annoying to hear 'you look great!' when you don't feel all that wonderful, but that's been the case for the last 10 years, because I rarely look very sick.  I may be the only woman alive who says 'Thank you!' when being told they look tired/not well.  My lacrimal glands are still swollen, just got them injected with steroids again on Wednesday, trying to decrease the swelling and foreign body sensation.  The Sjogren's also has affected my sleep, with the dry mouth causing frequent wakings and the prednisone probably worsening the issue as well.

Everything gets me tired: cleaning, laundry, stairs, grocery shopping, cooking.   It is awesome, however, that I can plan my week out better with not working 3-4 full days a week.  I'm wondering now how I continued working that much for as long, but ya gotta do what ya gotta do.  Glad that the choices I've made throughout my life gave me more options, even though things didn't turn out as planned.  But that's true for a lot of people.

Dealing with the diagnosis of the PHTN has been more difficult then I've been admitting, even to myself.  To have gone through so much, to have kept hoping that after each setback better health was around the corner, to stay positive, and to then find out that despite all that I will continue to deteriorate, is a lot to cope with.  The best that I can hope for is to stay stable, hope that the lung pressures will not get any worse.  A big positive is that my BP has drastically fallen by 20-30 points, with no  medication, and this can only be a benefit.  May be due to the diet change or not being as stressed with not working, or a combination.  Now running ~ 106/60, down from ~134/88. 

My friend Rose, who is a PA in the Heart Failure Program down at Penn, suggested seeing a PHTN specialist, which my pulmonologist enthusiastically supports.  So, I have an appointment next month and will be getting pulmonary tests and starting pulmonary rehab to get an idea of my current baseline, giving him more information.  There may be some medications which could improve my lung pressures.  My secret hope is that if the PHTN was less of an issue maybe I wouldn't need the CPAP, wouldn't be waking as often and might get a decent night's sleep.   And, of course, it might increase my functional abilities.   Trying not to  get my hopes up, however, because that can be more difficult to deal with when disappointed.  Rather get a happy surprise if things work out well. 

Have a jam-packed weekend, chief of which is my 3 hour lecture for Drexel tomorrow morning.  But I can plan on Tuesday being a day at home to recover from everything.  That's nice.

Sorry to not be quite as perky as usual. 

Thanks for checking in,  Laurie