April 18: more food restrictions, lack of sleep

Trust me when I tell you that not one day has passed in my 'retirement' that I have been bored!  There is so much to do, so much I've been putting off, so many people that I haven't seen or socialized with.  I'd like to say that my house is being organized and cleaned, but that would be lying!

Since the last post I've started another dietary restriction:  nightshades.  These include tomatoes, potatoes, peppers & eggplant.   Non-nightshades high in solanine are goji berries, blueberries & artichoke.  All but the goji berries have been mainstays of my diet, especially as a vegan/vegetarian.  Peppers includes not only bell, red, yellow but also cayenne & paprika, which are frequently present in most prepared foods if only for color.  Potatoes can be replaced by sweet potatoes, but potato & potato starch are in virtually all gluten free replacement foods, ie GF flour & pretzels.  Eggplant I actually really like, as well as artichokes.  Blueberries are a real favorite. The recommendation is to be totally nightshade + (the high solanines) for 2-3 weeks as a wash-out, and then start re-introducing the foods individually to see if you have a reaction.

Here's the good news (which is also more than a little scary when you think of  the wider ramifications to everyone else):  within 3 days of cutting all those foods out my omnipresent lower back and left hip pain were almost totally gone.  Seriously.  As anyone who was in EMS can tell you, back pain is a given.  My back was shot by my mid-20s--it was a major factor in my decision to go back to school.  I have advanced degenerative disc disease (DDD) in my lower back; if you remember when X-rays were taken during the prolonged first foot fracture the orthopedic doctor walked in with my lumbar spine Xrays and asked me 'How do you walk? '  because my discs were apparently ground down so badly that my vertebra are bone on bone.  I can't remember not having almost constant lower back pain, or at least frequently, for decades.  My left hip pain has been off and on for decades as well, but worse in the last couple years.  I can't believe that this dietary change made such a difference, some websites claim that nightshades are the source of 85% of people's pain, which seems hyperbolic, but it's clearly a major factor.  Rather than my rambling on, I encourage anyone with arthritis pain to Google and check out for yourself.

So, a huge amount of my time is spent cooking, because when you are gluten free (GF), mostly vegan and now nightshade free there is nothing you can buy pre-made.  There are some helpful tips out there for replacing tomatoes and the spices, which helps.  Feeling better, however, is a huge incentive.  I'll try adding blueberries back first, then artichokes.  I already know the tomatoes are an issue--had been getting increasingly suspicious of them.  At the time I learned about the nightshades I'd just made the most delicious roasted eggplant & caramelized onion dip, started gobbling down in order to go ANS (my abbreviation for anti-nightshade) the next day and felt worse and worse, so I guess that's a guarantee.  I'm hoping that once I'm 'detoxed' maybe a little potato flour & spice will be OK, but will have to see.

Why am I willing to go through all this?  Because I am desperate to get off the prednisone, and would love to get off the other autoimmune drugs as well.  But I figure I can't complain about the medications unless I'm doing everything possible to heal in other ways.  My thought process is this:  if there is any inflammation going on in the body then it will exacerbate any autoimmune issue, regardless of the cause.  So maybe if every possible inflammatory causing agent is eliminated my body will begin to calm down.  I'm going to ask the rheumatologist for a recommendation for a nutritionist/naturopath to see if there is anything else I can do.

Of no small aggravation is that despite all these diet changes, and a massive decrease in sugar consumption, my weight has stayed the same, and is currently the heaviest I've ever been, taking into account my shrinkage of 1 1/2 inches in height  over the last several years (was 5'4 1/4", now down to 5'2 3/4").  I'm trying to console myself with the thought that at least my weight isn't increasing with the prednisone and definitely being in early menopause, but it's very discouraging to still be feeling fat after making all these eliminations and eating healthier than I ever have in my entire life.  Again, maybe if I can get off the prednisone & other autoimmune meds the weight will start to drop.....

I'm going in to the office an average of 2x/week for 4 hours each time, doing charts and therefore not paying for the health insurance.  Every one's happy.  I'd love to work two half days a week as a PA (would be paid more than I'm getting for doing the charts), but as referenced in my prior post that isn't possible at my current/old job as the hours were replaced.  At some point I'll start exploring other possibilities, but quite frankly, at this point, I'm OK with making the financial sacrifices to have this time to recuperate and try to get healthier, which, obviously, is the main goal.  I want to do more with my beading, and find an outlet for selling so that at least my costs are covered.  I want to do more meditation, more yoga, more spiritual stuff, more reading......  None of that can be accomplished while pushing myself, because everything I do requires frequent resting.  The breathing is not getting any better.

The other huge frustration is my sleep.  Despite going to bed earlier, sticking to bedtime routine, and everything else recommended (only one cup coffee in morning, no eating within 3 hours of going to bed, no TV for 1-2 hours before bed, no computer an hour + before bed....), a solid night's sleep eludes me.  A couple nights ago I realized that my CPAP machine hadn't had all the tubes & filters changed for a while, because the company stopped sending them automatically when the insurance changed at the beginning of the year, so I thoroughly cleaned and changed everything, having squirreled away replacements when they were coming regularly.  While I fall asleep easily and quickly, I'm still waking 2-3+ times a night with the dry mouth, although after months on the Restasis the eyes aren't as much of an issue.  I've tried everything: Biotene wash, Biotene gel, Xylimelts lozenges, humidifier set on high at foot of  bed, humidifier on CPAP set so high there are droplets in the nasal pillows, and have done all those things every night.   The longest period I sleep is 3 hours; every morning I wake still tired, although feel a little better after being up an hour or two. It's just so frustrating, because, again, I'm doing everything 'right', and my suspicion is a combination of the Sjogren's and prednisone being the causes.  But not feeling rested is throwing everything off.    I may make an appointment with the pulmonologist and ask if another sleep study could be done to see if anything has changed.  Wondering if the pulmonary hypertension (PHTN) caused by the valve is exacerbating things, which means nothing can be improved. That's depressing.

While none of this is particularly deep or spiritual, my goal has been absolute honesty in documenting the realities of chronic illness.  Some of this, of course, may just be getting older.  Of all the crap my father said to me while growing up why did the one truth have to be 'youth is wasted on the young'?!

Last  night was spent cooking a delicious batch of sesame noodle salad (first time replacing the chili spices with Tamarind concentrate and tomatoes with under-ripe mango) and then a tofu based vanilla cream  for over strawberries, going to BuxMont tonight for a vegetarian pot-luck and climate change discussion.  Will watch TV now while cutting up strawberries.  I miss the easy days of pizza, burgers, bacon & fries.....

Thanks for checking in,  Laurie