Mar 31: Lots of news!

-The rheumatologist has decreed that I am not just gluten intolerant, but a celiac.  There is a high cross over with other autoimmune disorders, so this whole thing raised red flags.  I've proven to be incredibly sensitive to gluten, even reacting to vodka, which most celiacs don't react to as the distilling process removes almost all the grain/gluten, yet I reacted. While the blood tests were negative when done several years ago they are not guaranteed.  The definitive test is small bowel biopsy, but no one wants to do that on someone taking Coumadin.  But with a real celiac diagnosis it means that ANY gluten is damaging my intestines, permanently destroying the tiny cilia that are in the lining and move things along.  The treatment is the same, complete avoidance of gluten, but it makes me feel less as if I'm imposing on people when telling them of the need to accommodate me.

-Turns out the vegan is making a difference!   After about 2 weeks of going vegetarian, adding dairy & egg, the lacrimal gland swelling got worse, waking up every night multiple times with painfully dry mouth--which kinda defeats the purpose of the CPAP in trying to have a full night's sleep.  So, back on gluten free vegan diet and within a couple days I felt back to what has become baseline.  It's going to be difficult, but at least I know for certain that all the work makes a difference.  That leads to.....

-Seem to be reacting to something else.  Currently trying to figure out, but the top of the list is tomato.  This would stink, not the least of which would be eliminating most pasta sauces and making eating out even more difficult.  But I'm wondering if this might have been why the autoimmune systems got worse? Maybe it wasn't the cheese & dairy?  I was eating out a lot, and mostly pasta & pizza (easier to find GF versions now), so there was a corresponding increase in tomato/sauce.  While I'd miss tomato very much, it would be much easier (and tastier) to have dairy & eggs back.

-Still waking 2x a night with the dry mouth, but after months on the eye drops they are much improved.  Hoping that when I figure out the rest of the dietary issues it will lead to better sleep.

-The asthmatic exacerbation resolved nicely.  It was never infectious, which helped.  Not having to push myself to go back to work was a real relief.

-Beautiful weather and walked today, looking forward to spring finally being here.  Thigh muscles and left hip  were painful, and I know walking regularly will help.  With all the ice and snow I just couldn't risk falling, even on the days the weather was better.

-I can work on the long term disability (LTD).  This is terrific news on several fronts, but I wish it had been clarified before I cancelled being on staff at two hospitals, wrote a letter notifying the PA State Board of Medicine I was no longer going to be practicing, cancelled my DEA number with the DOJ and had all my shifts filled at work, which involved bringing back a PA that used to work with us and hiring a nurse already trained in cardiac stress testing.  It probably won't make sense for my group to pay the malpractice for the amount of  time I could work filling in covering sick or vacation time.  So the hunt begins now to find something that doesn't require malpractice, which probably means no patient contact.  Will see....

-I have been going into the office and doing charts, fortunately no one else has been able  to replicate my abilities in that department.  In exchange my boss has continued to pay my expensive health insurance.  But between weather and illness I owe them about 61 hours!  There may not be that many charts left to do, but it has saved me about 5-6 months of payments.  I did not want to enter the fray of the new ACA with all the issues, felt it was better to stick with the expensive plan which is excellent. Maybe in another year or so I'll investigate other alternatives.

-My 'request for appeal' on the SSD has been received, no date given for the hearing, which will be before a judge.  The LTD company will pay for a lawyer if it turns into an entirely new round #2.  They have a vested interest, because once I'm on SSD then they only pay the difference between SSD and the private policy, dramatically decreasing their outlay of money.

-Mom told me yesterday that Tabitha's weight is down to  6 lbs, she used to be 11 lbs.  She is still comfortable and as long as she is things will stay the same.  I am so glad that Mom has had her for these last few years so that she could be the only cat that she always wanted to be.

-I have finally yielded to the monster:  I joined Facebook on Friday, with a great deal of help!  So you can now get to me by looking for Laurie Brooks.  Warning: I didn't want to put my real birthday in with all the security issues, so made myself 2 years older--what woman does that?!  It certainly isn't the right place for long updates like this, I look at it as superficial, so will continue to go on and on and on and on here!

OK, time to make tofu scramble for the morning.  Thanks for checking in,   Laurie

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