A Genetic Connection Part 2

With great pain, mom got in to see her doctor.  In the 70’s, people still had a family doctor, not some medical network that you had to maneuver.

Tests were run and soon it became apparent to Dr. Brien* that mom had Rheumatoid Arthritis.  Fortunately, she was diagnosed thoroughly and swiftly.  Unfortunately, there were not the treatments we have now for such a diagnosis.  Mom’s first medical regime for her new condition was mega doses of plain aspirin.  All she could do is go home and rest.  She was basically bed-bound for a year.

Rest was nearly impossible.  Mom tried sleeping in the bed.  That didn’t work.  She tried sleeping in a chair.  No success there.  Finally she ended up sleeping at the dining room table with her head on a pillow.  She hurt all over.  Even her hair hurt, I recall her saying.  And the aspirin?  It helped very little but was doing a number on her gut and hearing.

“I’ve got to find something better,” she remarked.  “This stuff is just making me deaf and stupid.”  Hence the search for something better began.

Throughout her life, mom tried traditional medicine, lots of natural remedies and probably a fair amount of quackery thrown in.  When questioned why she was on so many different things, she would reply, “when you’re sick, you will try anything to gain relief.”  She even did DMSO for a stint, which is a liniment for horses that she got secretly through our veterinarian, because it was illegal to dispense to humans.  This remedy actually worked to ease the pain and inflammation, but like most of the lotions and potions she used, it stopped working after a time, which sent her searching for the next relief remedy.

Probably the one biggest improvement for her came from a rather non-traditional source.  A doctor, I don’t know whether he was an M.D., was practicing out of Desert Hot Springs, CA.  He was treating R.A. with a mega dose of flu shot vaccine.  As weird as it might seem, that is the one big thing that helped mom to get walking again.  Basically she was carried onto the bus to go to treatment, but came back and stepped off the bus under her own power.  If I recall, she was hard pressed to find a doctor who would administer her flu shots but she did find someone though it was a treatment that was mainly frowned on by the ordinary practicing physician.

Of course, after a time, even this too pooped out and the next treatment was sought after.  It was a life long journey for my mother who suffered so badly from this terrible autoimmune disease.  In those days, I’m not even sure if doctors knew anything about autoimmune diseases.  Fortunately today there is more education on such but unfortunately it still takes our doctors a long time to come to that autoimmune conclusion.  My opinion is  it goes against the philosophy of the American Arthritis Association and the American Medical Association  because they, like most doctors, want to cover up symptoms, and continue to treat and treat, not try to cure or slow progressive  symptoms.  Autoimmune diseases are progressive so if you don’t slow the progress, it’s fruitless to continue with just the ordinary pain pill.  Of course, this is strictly my uneducated opinion, so please don’t sue me if you disagree.

So what does this dialog about my mom have to do with me?  When you go to the doctor, you fill out all kinds of medical paperwork, including a medical history.  Isn’t true that part of the medical history will ask if a close relative has or has had cancer, diabetes or another ailment?  One of the selections is Rheumatoid Arthritis.  Ah!  Genetic connection.  It’s all in our DNA and genes!  So yes, every time I went to a new doctor, I filled out what my mom had, thinking that there may be a connection with my back pain, and stiffness.  Funny or not, apparently it’s practice for doctors to never read the medical histories of patients.  Not one of my doctors ever asked me to take any specific test like the RA blood test.  I had to beg for it myself.  I’m sure all these doctors felt vindicated when this test came back negative.  It was much easier for them to say “if you’d just lose some weight, it will make your back feel better.”  Or “I don’t  see anything wrong with you.  Perhaps a mental health professional could be of some help to you.”

I thought the next chapter I might reveal what I have had to go through personally up until now to get a real diagnosis.  It’s ridiculous but true.  Doctors want their fee for doing basically no research and little examining, physically.  It all started with my first doctor about 15 years ago.

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*name changed

A Genetic Connection? Part 1

My mother was a dynamo.  From gardening to helping dad in tearing out  walls for new remodeling projects in the house and out-of-doors.  Mom didn’t just stand and hand nails to dad.  No, she was right there putting up sheet rock and laying down cement  She would paint walls and lay brick.  She had boundless energy and strength for all five foot, three inches of her.  And besides that, she was always there for us kids whether it was making a dress for my sixth grade graduation or spending the afternoon at the cinema watching a movie.  Mom was mom to all of us but she also was a friend.  She would take me and  wait tirelessly on the sidelines as I went to my square dance club.  She’d even come along for after parties and was friends with all the kids there. The kids affectionately called her Mrs. Fuzzy because not only was our last name similar in some ways to the word, but she treated them all with loving affection.

I could talk to my mom about anything.  She would listen and was never harsh but would offer advice that would appeal to our sense of reason and deeply ingrained morals.  Both mom and dad helped us to grow up with good values and a good work ethic.

Mom was raised on a farm and her passion was gardening and animals.  We had goats and chickens, ducks and rabbits, a dog and cat plus other critters throughout the years.  Before we moved in 1975, we had somewhat of a  mini farm that was all in a large yard of a residential housing tract.  Dad always said, “you can take the girl out of the farm but you can’t take the farm out of the girl.”

Mom loved her animals and was up early every morning milking the goats and gathering the day’s eggs.  She would tend her roses and feed the snails to our hungry ducks who adored their Escargot.  Our garden always had fruits and veggies for every season with the best Boysenberries along the back fence of our  back yard.  Eventually we did have to move because our menagerie kept growing.

When I was in the 8th grade, we moved to a house not quite in the country but out of the tracts  with a full acre to tend to all things animal and garden..  We even had a horse corral where we rented out horse stalls to the neighboring kids and adults.  It was just what mom wanted.  A full acre with a place to milk her goats and to keep her chickens.

Do you know that goat milk is delicious?  So creamy.  We had Nubian goats and they’re known for their flavorful, creamy milk.  Never pasteurized, all we did was strain the milk, refrigerate it and then drink it. When a dairy near our home would move or go out of business, mom would ask for their milk bottles.  Our goats gave enough milk that the neighbors would ask for it.  We had a little room under our house that was kind of like a cellar where milk and eggs would be kept in an ancient little refrigerator.  We called this little room the fruit room because that’s where mom’s canned delicacies lined the fruit room’s shelves.   Friends and neighbors would drop by to collect a gallon of milk, a dozen eggs or perhaps some freshly canned plum preserves.    Mom only had an honor jar where folks could leave their coins for her goods.   We had very honest people trying our wares.

In the first year we were in our new home, mom and dad totally redid the old house by moving rooms around and constructing new ones.  My room was small but perfect with my shelves of books and my new radio, record player combo.  It was the first time I didn’t share a room with my younger sister.  It was fabulous!

Excitement was in the air as Mom started training.  She was about to walk for charity, with a group, clear to Tijuana!  Her group would walk for two weeks, covering about 16 miles per day.   All the monies collected would go to help the orphanages in the Tijuana area.  It was quite a feat-pun intended.

So off she went.  Mom was ready to go and go she did.  She successfully walked the hundreds of miles from Santa Barbara to Tijuana.  She felt great when she came home and continued with tending to her animals, minding her garden, which in the new place was as much as a success as in the old yard.  Things ran smooth and our family was happy.

Almost a year to the day from her charity walk, my mother woke up one morning and couldn’t even lift the covers off of herself.  She was very stiff and in great pain.

The Old Crack and Pop

Mark could always tell when I was in a flare by the way my back tried to make out with the chair at the breakfast table.  I would stretch and contort and then lean backwards and sideways just trying to find relief pushing into the chair post.  I was in so much pain and tried all kinds of writhing to find relief.  Ah, but if any relief were to be found, it was only short-lived.  Soon those ripples of muscles spasms would rule again.

I was raised with going to the Chiropractor on a regular basis, whether you needed it or not.  We must have been on the family plan because once a month, from about the age of ten, I remember mom shepherding my older brother and younger sister out the door and piling into the car for our family appointment with Dr. Carnell.*  Yep, soon we were lined up to get our monthly crack and pop.  This was old school chiropractic, by golly.  Doc had down on your stomach where he would first see if one leg was longer than the other.  I never knew how he thought a crack here and a pop there would fix me because I was born with one leg a bit longer than the other.  I’m sure Dr Carnell frowned when he couldn’t get my feet to match up.

The best thing about going to see the Chiropractor was getting an ice cream cone afterwards.  Mom wasn’t a hippie in the least  but she did prefer the homeopathic therapies over medical doctors.  At least ice cream was still on the table along with Twinkies and white bread in our school lunches.  Yes, we had our shots and everything so really I wasn’t raised by nature parents.  Vitamins!  We always had them.   Maybe they counteracted the Ding Dongs and HoHo’s in our lunch boxes.

Speaking of shots,  I remember my dad taking my sister and I to get some shot at the Health Department once.  I don’t remember much about  the shot but I do remember waiting in the waiting room.

My dad started it.  He had a straw probably from a stop for lunch at Mickey D’s.  Suddenly I felt a straw wrapper whiz by my nose.  I was around thirteen and mortified!  My father was acting so immature, in public yet!  What would the other patients waiting think?  My sister soon got into the game.  How many straws had Dad nicked?  Soon straw papers were flying everywhere. Reload!  Fire!  Well, you know what they say, if you can’t beat ’em, join ’em.  Pretty soon it was all out war!  Straw papers were whizzing everywhere and I forgot to be embarrassed because I was having too much fun.  Soon the fun was over though and shot time was here.  I didn’t think to look at the nurse’s face when we were called but I’m sure there might have been a frown of disapproval there. There wasn’t a piece of straw paper in sight when we finished getting stuck as Dad was no slob and had tidied up from our mischievousness.  Still a memory was created, so I hope you don’t mind that I shared it here.

So back to Chiropractors, I’m sure I probably saw at least one when Mark and I lived in Santa Rosa when I had a back flare up but I honestly don’t remember who it was.  Seeing the back quack never hurt me but they never helped me for too long either.   Over the last fifteen years or so, I’ve even quite a few, some better than others.

I had one Chiro guy tell me that he could make all my pain go away if I got on a plan.  Something like if I saw him every day for the first month and then every other day for the next month, and take away a day per month and I’d be just fine.  Oh for my convenience, he even had the total cost of this healing plan right there with my name on it, ready for my signature.  Um, thanks but no thanks.

After that for future treatments, I would only see chiropractor if I could see them until they unwound me or 4 visits, whichever came first.  Oh, and no more crack and pop for me.  I favored the newer gentler chiropractic with electrode machines that relaxed the muscles and massage before the gentle stretch adjustment.  Sometimes the wily doctors would sneak in the crack but  my neck was off-limits.  By this time, my shoulders and neck were resembling cement, not to mention the original flare was still there staying three months or 90 days, whichever came first.

Frankie Baby

Now I’ve had stiffness for virtually most of my life.  When I was a little kidlet, I remember my mom stretching my feet upwards and back to stretch my Achilles’ tendons and calf muscles, which until this day remain pretty much rock hard.  I would cry because those “exercises” hurt like the devil.  Imagine trying to bend a piece of hard, stiff rubber hose.  Yeah, pretty much like that.  Unyielding to say the least but mom still pressed on, torturing her young daughter in the name of “therapy.”  Uh huh.  It was a real riot while I just knew and waited for my little legs to break off at the knees.

So I couldn’t claim that I was unfamiliar with stiffness and pain.  Still, when I felt that first twinge in my mid-back when I was about 30 years old, I didn’t think much of it until I bent to tie my shoes.  Holy cow!  That HURT!  I quickly straightened up and I’m sure I must have howled loudly too.

What’s with her, Mark must have wondered.  Little did either of us know that this would be a pattern, once about every six months for the next twenty some years.  I will say right here, while at first it was confusing to him, Mark has always adapted to my aches and pains and has pretty much been my rock down through the years.  Oh there’s been whining here and there but generally he GETS IT.  Even now, sometimes, I feel he’s the only one that truly understands and I love him for that.

Describing the indescribable is always a fun thing.  All I knew at the time during these flares was that by the time my back got good and wound up, I was walking like Frankenstein.  Rigid and straight.  Spasms across my middle back sent me into howls of pain.  As long as I didn’t have to bend, I mastered a straight up Frankie walk that would, somehow, get me through the work day.  I didn’t miss much work in those days.  Just suck it up with my chin held high…literally.

I have never driven a car due to low vision so walking to the bus or just walking was my main mode of transportation.  I can imagine people’s thoughts as they snuck a glance as they sped by me during any morning or evening commute.  That woman walking looks like she’s got a pole up her back.  Straight as a statue.  Wait!  Maybe she is a statue on a holiday.  Or a mannequin, like in my favorite episode of The Twilight Zone, The After Hours, where Anne Francis is a mannequin allowed to sample human life for one week out of the year.  Even as a “human” her character, Marsha,  has that stiff formal quality as she wanders aimlessly through the department store from where she came from.  That was me.  I was a mannequin on my week off.  Only I was more statue-like during my “weird back” episodes, as I came to call them, and usually  was a mannequin for about three painful months.

 

Alrighty Then, Let’s Get Started

Again welcome to anyone starting this journey with me.  Jump in any time.  I would love to hear from you, whether it’s sharing your own experience or just saying, “Good job!”  I would rather not be slammed in any way, as then I may cry and you wouldn’t want me to turn the waterworks on, would you? Remember the adage, if you don’t have anything nice to say, then don’t say it at all.

This blog will contain incidents and experiences in my journey to get a real diagnosis for the chronic pain and illness that I’ve probably had for a very long time.  It will also be a place for me to come and share other things in my life that I hope you will enjoy like recipes, other things I do in the day and, of course, stories of my cats, Emily and Victoria.  That is if I can get them out of bed.  Really!  They are the laziest cats I know.  But we hoomans live to serve and they are well aware of that policy.

 

Welcome To My Blog

Hey!  I’m glad you found me!  I’m working at a 🐢 pace to get this up and running.  Please be patient.  It’s all new to me.

Keep checking back as I turn my head inside out trying to figure the ins and outs and ups and downs of what the heck I’m doing.

While you wait, relax and have some tea.  One lump or two?