It’s been a very rough year… So the tone of the blog is probably changing.

On December 21, 2016, a colonoscopy was done. They didn’t find anything important, but they did manage to trigger “Bile Reflux.” In some ways this is similar to “acid reflux” or “GERT” — but it’s very different in that acid reflux is, well, acidic, while bile reflux is very alkaline. When one vomits or burps, it’s like vomiting or burping lye. And that’s a huge difference. Bile, like lye, eats through the mucous lining one’s throat. In the mouth, it destroys gum tissue and, beneath the tissue, the bone. One’s mouth becomes such a bloody mess that it’s impossible to eat.

I was trying (and, I think, succeeding) to get it under control until I suddenly started vomiting fresh blood, brillant red and full of bubbles. Since I have a positive tuberculin skin test — which only means I’ve developed the antibodies that destroy the tuberculin bacilli — the government decreed I be placed in a hospital’s isolation unit. (Hazmat suits, plastic or cardboard everything. (Including plastic stethoscopes that aren’t cold on the skin, but also don’t work very well, plastic IV stands, food served on plastic plates with plastic utensils, etc.) All this care — yet no one paid attention to the regime I was following to keep the bile reflux away! I’m very mildly diabetic, but I didn’t even get the diabetic diet. They did give me the Metformin I take for diabetes. They didn’t look inside my mouth to see why I couldn’t chew. — instead I got lectured for refusing to use my false teeth! (Not just once, but daily!)  They wanted to try some extremely invasive tests to find the problem.  I kept refusing, since my TB skin test had changed when I was only 12 years old, and I’ve never come down with tuberculosis.  (My skin test was the result of living with my father for 12 years, and my father had an “arrested” case of TB.)  After a week of this, the head of the infectious unit showed up in my room.  Finally!   A doctor old enough to remember the days of “arrested” cases of the old type of TB, tuberculosis before it mutated!  I rather coldly pointed out, that, if they worried about TB, they should give my husband a skin test, since I’ve been living with him for over 40 years, taking none of the precautions my family of origin took around my father.

His argument became, “Well, if it wasn’t caused by TB, what did cause it?”  I neither knew, nor cared.  The bleeding had clearly stopped, and, the hospital no longer had a right to arrest me and drag me back to isolation; if they wouldn’t release me, I’d sue.  “Oh but, until we get clearance from the government run CDC, we aren’t permitted to release you.”  He was old enough to understand, but his judgment wasn’t enough.  The government now had more control over what happened in a hospital than the doctors.  Not only that — he couldn’t even change my diet!  That was Michelle Obama’s “eating healthy” campaign’s contribution to my misery.  I pointed out that I couldn’t eat 90% of what they served.  I either couldn’t chew it or had already proved to my own satisfaction that any type of fruit triggered the bile reflux.  He did telephone the CDC — at least that’s what he said — and I think he did since it did trigger a long, long delay in getting my “official” tuberculin test back from the government CDC.   So there I sat.  Catch-22.  I’ll never know what went on behind the scenes, but eventually I got out of the hospital.  (Obamacare/Medicare did not cover the expense BTW.)  Several weeks after I got out of the hospital that time, the CDC tuberculin report came back as a “false positive.”  I wouldn’t even have known that much if I didn’t check MyChart online.

It’s been a very, very long time since I’ve had decent health care.  I’ve become very bitter about it.  I can’t live without it, but my old GP retired almost 40 years ago.  there simply hasn’t been a doctor that actually stayed in this area for more than a year or two, and I’m not easily transported the 300+ miles it would take to get me to a decent clinic every time I need to see a doctor.  So I went to the local clinic….

Immediately after my stroke in 2006, I had major problems with my endocrine system.  The last time I saw my Primary Care Physician at the local clinic, she mentioned it was time to have my kidneys checked out again, and she scheduled the appointments, which I grudgingly went to, and, as usual, those appointments led to more appointments, more tests. and so it went for a couple of months, until, very suddenly, I got a phone call from the local clinic.  My husband had telephoned them to get a prescription refill for a drug (Valium, which I officially take for my PTSD, but actually take as a muscle relaxant.)  The phone call came in on October 18, 2017.  I remember the exact date and time, only because I wanted to be completely undisturbed that day, and had my cell phone on (usually I just keep it turned off) and the clinic called my cell phone!  I’d given them my cell phone number (cell phones are now essential you know, and if you don’t have one, the government provides you with one) under protest, emphasizing that it was never to be used.  Some nurse I’d never heard of, informed me my valium couldn’t be refilled unless I came in and signed a a drug agreement, and, BTW, my thyroid needed changing.  I said, “There’s no way I’m letting you change my meds!”  My thyroid is a touchy subject, and it had just been changed by the “endocrinologist” who was actually a DO, and thus knew absolutely nothing about anything other than diabetes…  The American Medical Association only let DO’s call themselves endocrinologists when too many people needed help with diabetes, and all the actual endocrinologists (with nine years more training, and two more residency’s).

That started a huge change in my life.  My endocrine system has never been “normal” — and I’m not going to let myself argue about what “normal” means.   Changing my thyroid according to the “normal” tables doctors use makes me extremely hyperthyroid — last time someone tried changing my thyroid following “normal” procedures I lost 40 pounds during an incredibly uncomfortable month, yet going without thyroid hasn’t been an option in the past.  I won’t put myself through that again.  I really loath pain.  Pain frightens me.  So I’ve been trying learn the way through current procedural healthcare as I rapidly become sicker with whatever is causing the bile reflux.

Finding a new primary care physician is essential to obtaining and paying for any type of medical care.   My husband and I are old, retired, living on a fixed income just like every other senior.  We’re better off than most, since we own land and our home.  I’m unwilling to sell our land to obtain really good health care — though I’ve known people that have chosen to sell their home to go to some of the better clinics.  They die in nursing homes eventually.  Or they live without a home.  Or they, like everyone else, live with the consequences of any choice one is still permitted to make.

I’m not going to let myself go into a long, complex political rant.

As Americans are discovering that there are too many people and not enough basic resources — a situation which has existed forever — the seething mass of humanity has struggled to find solutions to that particular problem.  Having too many people who feel “entitled” to such basic human needs as security and American values leads to squabbles in politics, multiple violent outbreaks, and a tremendous anger.  I made my personal choices long, long ago.  I choose what I call “freedom.”  That means I live or die making my own choices.  Literally.

At the moment I’m as close to death as I’ve ever known.   An unknown autoimmune disease (ie, my body immune system is attacking rather than defending my body.)  My body repulses me.  I’m surrounded by a new smell that’s coming from my own body,  my hands hurt so much that typing is hard to bear.  It’s very difficult to think clearly.  The kidney specialist’s tests show extremely high protien in my blood and/ or urine.  The amount of pain in not acceptable.  I might be able to help control the pain by limiting stress.  How does one eliminate stress when one could be dead within the next week?

My current solution to simplify my life, to do what I still enjoy doing.  To fully appreciate the beauty that exists outside my window.  To celebrate the fact that God is essentially good.  To enjoy moments with the people I love.  No longer a teacher or a student, I try to maintain my own level of joy.  That’s all.  Nothing more.


Still Sick…

And it looks like I’m not going to be baking bread for a long, long time, if ever.    I have what’s called “bile reflux.”  Which means I have massive amounts of bile leaking into my stomach.  Bile is extremely alkaline.  Gastric juices are extremely acidic.  This creates the usual reaction when alkaline and acid are mixed.

Supposedly the “best” diet for this fruits and veggies.  True to form (my digestive system has never been “normal”) fruits and most veggies are precisely what I can’t eat.  And grains, other than cooked oats, aren’t working either.

Yet to keep reading and commenting on what others write, I have to blog about something…

A few weeks ago there was a silly question on the TV game show called “Family Feud.”  The question was, “If dogs could blog, what would they blog about?”  The things my husband and I came up with were as silly as the question!

So what say you?  Shall I start a new blog, written from my dog’s point of view?  Our dogs (we have two) are our children, and are very different from each other.  Both are “found” dogs.  Daisy arrived at our door about 10 years ago.  She’s a devout hunter of rodents, is always alert, and very particular about sleeping under the covers of our bed.  Jack is definitely not a hunter — he likes to chase and be chased (something even the squirrels have figured out.)  It’s not at all unusual to see him being chased by a squirrel — or even a big rabbit.  Jack arrived when a man threw him out of a pickup truck, fortunately he was young enough to survive and not break any bones — Jack is now almost 3 years old, and tries to live within 1 foot of my husband at all times, unless he’s gotten a thorn in his paw, in which case he want me, and only me, to fix it.

So what do you say?  Shall I start another blog as a dog?

The Day After Christmas

Again I’ve been gone a long time. For the same reason: I’m sick. I had a colonoscopy and endoscopy on the 22nd, and, as per usual, they didn’t find anything they expected to find. Instead they discovered my stomach, duodenum and the upper part of my small intestine is full of ulcers caused by bile (AKA gall). Interesting since I had my gallbladder out almost 3 years ago…  So there is more to be done, and, in the meantime, I’m supposed to avoid grains…  Which puts a damper on my bread baking.

Though something else happened this Christmas.  I found myself missing my family of origin, and the way we celebrated Christmas — without being in denial about the hell that was then, and without dreaming that “this time it would  have been different.”  Christmas was both a time of great danger and of great joy in my original family.  It was dangerous because my father and mother could both be quite violent.  The joy came from all the new stuff, and the old traditions.

The old traditions started long, long before the Christmas season began.  I had two much older siblings, and the three of us had a rule that our Christmas presents to each other had to cost less than 10 cents.  That took a lot of planning and imagination.  One year my brother saved Coke bottle caps for a whole year, punched a hole in each one, and threaded it onto a heavy piece of string.  By the next Christmas there was a 8 foot “necklace” of Coke bottle caps for my sister.  Another year he made me a Viking War ship (that I still have) out of a 10 cent sheet of thin balsa wood, with carved sticks for the the dragon front,masts and shields, and braided white thread for the ropes.  (His gifts were always the most creative.)  I made my sister beaded jewelry (that she never wore) except one year when I raided a wild goose nest in Spring and carefully cut the eggs in half, waterproofing the eggshells with melted wax crayons inside and out and made a hanging “garden” mobile out of them.  Unfortunately one of the plants I put in the mobile was poison ivy from the woods, but I also had marsh marigolds in bloom, and several others.  Everyone else in the family was allergic to poison ivy, so my mobile was banished to my room.  But I liked it.  Anyhow, sometimes our Christmas gifts to each other didn’t work out very well, but we all put a lot into making them.

On Christmas Eve, assuming there were no implosions from my parents, we always sat in front of our fireplace, with the Christmas tree behind us, and my father read Charles Dickens’  A Christmas Carol aloud, all the way through.  We had a rare and wonderfully illustrated copy, though I don’t remember the illustrator.  One year my siblings rebelled and we read The Other Wiseman by  Henry van Dyke.  And that year my mother, rather than my father participated in reading.  (My parents avoided each other as much as possible, even just reading Christmas stories.)

Actually everyone except me, and sometimes my brother,  avoided my father as much as possible.  In many ways we were two separate families living under one roof; Dad and me, and my mother, brother, and sister.  In the half century plus, I learned why this was so.   And yet, thinking of Christmases past this year, it didn’t hurt to remember.  I loved my father, no matter how many times he literally tried to kill me.

And, in a very strange way, that was my Christmas gift this year.  One of my friends who was also severely abused, calls one of her perps, “my favorite perp.”  I’ve finally admitted my father is my favorite perp.  Yes, my body is covered in scars he inflicted, but, contrary to belief, “stick and stones will break my bone, but words…”  Words seem to live on forever and hurt much more…  By some miracle, I’ve learned to truly forgive my father.  Yet, at the moment, I only feel very sorry for my mother and sister.

I’ve always loved my brother, and he’s the only one alive now, thank God!

A long pause – for a variety of reasons.

It’s been a while since I baked any bread, but I definitely haven’t given up!  I’m pretty sure I’ve mentioned my health isn’t the best, but recently it’s been one thing after the other. First I started coughing blood from my lungs, which instantly means the Center for Disease Control automatically takes over your life. Even if you only cough blood for 6 hours, if you go to the hospital the CDC will force you to live in total isolation, complete with precautionary Hazmat Gear (even plastic, disposable stethoscopes!) until you can prove you aren’t contagious. It’s awfully hard to prove you don’t have a contagious disease. And, it turns out, insurance doesn’t cover most of it…  Thanks to some help from my family we aren’t quite broke, but financially we’re stressed, which leaves me quite depressed.

When I came home from the hospital I was very weak from the testing, and all four of the major veins in my arms had “blown” (broken, popped, or had too many needles pushed through them.)  Which left my hands hurting and numb from lack of blood flow.  It’s happened before.  I have very poor blood flow from a genetically based disease called “peripheral arterial disease.”  Usually the problems caused by a blown vein goes away in just a few weeks after the last IV is removed (at least in my arms…  My legs already have so little blood flow my legs and feet are always extremely painful.)  This time it still hasn’t gone away and both hands are so full of pins and needles it makes typing a problem, still I was coping, more or less – until my Crohn’s disease started acting up, and I need a CAT scan with contrast … contrast that requires a very good vein that I don’t have, so it suddenly became necessary to at least discuss having a permanent shunt installed, but who’s going to install the shunt, how can they put me asleep to do it, and what specific type of shunt to install?  And the problems go on and on…  Various doctors have said they’ll get back to me – but no one has, and I’m in no mood to push anything that will cost us more money that we don’t have.

Which, when I think about it, means I’m the cause of my own misery.  So it’s time to kick myself in the ass and get up and do something!  It’s time to get back to baking, back to living.  And it’s definitely time to quit feeling sorry for myself.  Enough!  Enough!  I intend to live as fully as possible until I die – and I’m not dead yet!

Thank you for permitting me to whine on your shoulder.  I’ll be back!