Renewed optimism has reached my subconcious

Last night I dreamt of eating sandwiches in public, being freed from resting my chin in my hand to mask my mouth while talking with friends and kissing my favorite fellow with the passion I feel.

Upon waking and reflecting I realized that I have not truly enjoyed a sandwich since my twenties.  When I was 19 I had a bad dental experience that resulted in my holes drilled along my gum lines.  This began my dental phobia, I didn't go to a dentist until 10 years later.  By age 23 my teeth were deteriorating.  A high sugar intake combined with bad genes and bad experiences are how I got here.  And now with a pair of good dental experiences and my family, friends and strangers rallying around me I can get to a much better place.  All my goals and aspirations seem much more attainable.  Thank you my peeps.

Gratitude at the halfway mark.

Amazing.  I am floored by the rapid rate with which I reached the 50% point with my fundraising efforts.  More than 225 shares!  This is incredible.  I am overwhelmed by the outpouring of love and support.  I have been brought to tears more than once because of sweet things people have said while sharing the link and as messages while donating.  I knew I was wealthy in friendships, but boy howdy, this has all been astounding!!

This is life changing for me.  It is impossible for me to properly thank everyone who made this happen.  So I will pay all of this kindness forward and spread the gratitude outward.  I will throw my head back and laugh loudly with an open mouth when so inclined.  I will nibble on babies' toes and fingers without fear of a toddler trying to pry open my mouth to see what's wrong in there (this has happened far more than once, kids say & do the darnedest things)!  I will get better nutrition which will prolong and improve my life.  

Thank you, thank you, thank you!  

Why I turned down all those invitations to go out to eat...

I realize now that many people were unaware of my dental woes.  After my mother passed many people wanted to take me out to eat and catch up.  I refused many offers and felt uncomfortable during the few meals I did share with friends.  My mode of operation when I did attend was to eat until just after everyone else finished and then get the rest of my food to go.  It took me many times longer to chew my food.  I only had two molars that lined up enough to chew.  Then about 9 months ago while eating with friends at the Corner restaurant I broke one of the two remaining molars while eating toast.

So between no teeth with which to chew and my myriad of food allergies I was reduced to eating only mushy food.  I have gained weight because soft food tends to be full of carbs.  I do not mind the weight gain, merely the type of weight.

I am so looking forward to being able to eat whatever I want (barring allergens)!  Though I must admit, as soon as I am able, I will be eating a steak, screw my allergic reaction!  I figure it will be at least mid-May before I am able to eat well with my dentures.  And then bring on the offers of shared meals!!  I'll be there with bells on!

Coming from where I come from... health edition.

I am a mutant.  I'm ok with it.  I have had a complete gene sequencing trying to discover what ails me.  135 gene mutations, 116 unidentified when I first got the test results.  In 2014 the geneticists at KU Medical Center discovered that one had been identified, Interluken 21 receptor gene mutation (http://www.ncbi.nlm.nih.gov/gene/50615), and it causes me to have a Primary Autoimmune Disorder.  While getting sick all the time has plagued me they do not believe this newly identified gene explains all the health problems I have encountered.  I will meet with them again in 2015 and every year after to learn what new things they find and get referrals to appropriate specialists.  I see immunology in June.  I could be seen much sooner, the department believes I'll be best served waiting until the head of immunology is available.  I am patient and my health issues are not currently urgent and so I am pleased to wait for the person KU feels is best suited to care for me.

I am so grateful for Medicaid and Medicare.  I had private insurance for decades and they never managed to diagnose me while I was having spinal meningitis flare ups.  A single spinal tap and I could have understood years sooner how ill and close to death I was periodically.  Not cost effective for them I am sure. Likely since infancy, I have had recurrent bouts of aseptic meningitis.  No fungal, bacterial or viral cause.  Usually preceded by a CSF leak and prolonged low grade fever.

The loss of my academic career is the worst part.  With a diagnosis my private schools would've been more cooperative about allowing me to learn from home, or my folks could have saved the thousands they spent every year and home schooled me.  As it was, I was removed from high school my junior year because I always had a fever above 101º and only attended 27 days out of 90.  I really would have enjoyed having had the health to pursue a college degree.  I did try repeatedly.  It's never too late, I may be able to yet!  By next year the geneticists out there may have discovered what a dozen of the mutations mean.  I am hopeful.

I am

I am who my mother hoped I would be.  My mother, Sandra Kay Rose aka Sandra Catherine Kuhn, always helped others.

After mom's death, my grandmother talked to me of my mother's propensity to bring home stray people and animals when she was a child and young adult.  It made sense to me because she did the same throughout my life as well.  We always had an extra critter or person that we were fostering and helping to get on the path of their destiny.  I cannot count how many she rehomed, so to speak.  She taught me how valuable a single individual can be.  During my early childhood I can remember animated discussions in which mom would lay down some wicked wisdom that would floor those present.  I remember watching as people listened to her enthralled.   With wit and humor she would decimate people's biases, challenge folks to think more deeply, insist peeps delve within themselves and discover their own empathy.

When I was an infant she would treat me with the same respect she did everyone else.  Once a friend of hers was passing through Kansas City, they arrived late at night but had not met me and wanted to see me.  They told me that mom took them to my crib,gently rubbed my sleeping back and asked me if I would like to wake up to meet her friend.  I opened my eyes and smiled and reached up to them.  She then thanked me for getting up and we played for awhile.  This had an impact on her friend's parenting and perception of human respect.  I was preverbal yet still she talked to me as if I could understand; and so I did.  These experiences were the norm for me.  Being treated as a person worthy of respect from birth taught me to recognize the intrinsic value of all other people whether I liked them or not.  That to the best of my ability I should treat others with respect and acknowledge their worth.  I talk to infants and wee ones in a sing song tone, but never baby talk; I use real words and plenty of them.  Their brains are sponges and I have always felt the more words I can expose them to the more they will learn.  She talked to me non stop as I grew, answered any questions I asked to the best of her ability or if she did not know we would look for the answer together.  Words are power, respectfulness costs nothing, share smiles at every opportunity, curiosity takes you new places. These lessons were cornerstones to all other lessons that she and life had in store for me.

Once I was upright and ambulatory, my mom conscientiously taught me empathy.  If stepped on bugs she would make me imagine being one of them and how awful it would be to be smooshed by a thoughtless, uncaring giant.  She painted an image in my mind of their lil bug friends coming to look for them and finding a splat that was once their buddy.  Sandi spent her teen years in Manhattan, KS near Fort Riley.  She had many friends who were disfigured physically and psychologically by the conflict in Viet Nam.  By embracing them, by exposing me to them she taught me not to stare.  Make eye contact and smile warmly, ask how this happened if I was curious instead of looking away or being afraid of what I did not understand.  That most people would rather talk about their experiences instead of feeling like an object of pity.  That engaging others reminds them of their own value when they may have forgotten.

Sandi Rose spent a great deal of effort to step outside of society's comfort zone to expose me to as many diverse experiences as possible.  The love of her life was Dale.  It was a biracial relationship that began in the 1960s and never really ended though their romantic relationship did end in my teens.  They were mismatched in so many ways.  He was married, she never would.  He was a businessman / entrepreneur; she worked as cocktail waitress, dog groomer, heavy labor construction worker, small newspaper editor, resume writer, social worker and Pinkerton agent.  He had a fleet of import cars, she usually drove a car that cost under $500.  They met while he was attending K State.  She was skipping high school and hanging out at K State's library.  They did not become involved until a couple of years later after he had married and she was pregnant with me.

The comedy of her pregnancy and my birth are a tale for another day, suffice it to say he was there throughout.  Dale raised me as his own and after their affair ended she never kept us separated and always respected our bond.  Their love was absurd.  My folks would be so absorbed in talking that they were oblivious to the racist treatment we received in public early on, which taught me to master the stink eye at a very young age.  As my mother's only child and innately quiet their conversations taught me that great love is a blinding mix of biochemistry and cerebral compatibility.  While "All you need is Love" is not entirely true, it sure is worthy of pursuit!  That love is what you choose it to be.  After my pops moved out of state, my folks still spoke nearly every day until his death.  She loved him until she died.  His greatest lesson to me is that, "You'll never know what you'll get unless you ask."

Mom always encouraged my individuality and fostered my inner strength.  She always confirmed that my thoughts and feelings were valid.

Words are power, respectfulness costs nothing, share smiles at every opportunity, curiosity takes you new places, don't bother to lie it forces you to remember too many realities, you don't have to walk in anyone's shoes to imagine where they've come from. These lessons were cornerstones to all other lessons that she and life had in store for me.  I miss her badly.

Dental Odyssey- Minor setback

Well one problem with using two facilities to get my dental woes resolved is that I have not been given a clear view of what to expect when.  At my TMC oral surgery appointment last Monday to get antibiotics for a minor infection that was setting in I alerted them that they had not removed all of the lingual tori (boney growth) on the left.  It was below the area swollen by the infection.  They told me that they would attend to it after the infection was gone.  By Friday I had finish my course of cleocin and all of the swelling had gone.  The same day TMC called to confirm my appointment for this morning.  I had been told this appointment would be cancelled and so I explained to them the situation with the tori and they said I should keep it.  I did.

The dentist tells me that I need to heal enough to begin fitting for dentures and then that dentist needs to give a referral with specifications down to the millimeter of what still needs to be removed before TMC can do more.  This second surgery will require an additional month or so of healing.

A bit of a disappointment, forward progress still... 

Monday I had a follow up appointment with Truman Oral Surgery.  They prescribed 2 types of antibiotics and Tylenol 3.  They are pleased with my healing process.  Today after four days with antibiotics I awoke with minimal pain.  I am so relieved.  I wish they or my primary care doctor had listened when I told them I was already fighting an infection and given me a round of antibiotics in conjunction with the onset of dental treatment.  Ah well I am getting them now.

In my imagination, I had thought by now I would be well into healing and started in on the massive task of Spring cleaning.  Instead, I find I am hungry all the time and still unable to eat anything substantial.  I made my lovely homemade cream of mushroom soup and it is still too chunky even though I put it through the food processor.  P'raps by this weekend?  I can hope!

Also on the downside, Maggie the English Mastiff has a swollen paw with no visible sign of injury, so off to the vet tomorrow!  I am so thankful for my vet Dr. Goosens at Prospect Animal Hospital.  He frequently charges me only for the medications I need for my critters.  I think the last office visit I paid a fee for was $18.  What a great vet to keep his location in the ghetto so that all us poor biddies can stay pet owners.

Dental update

Trying to get to sleep.  Out of pain meds.  Jaw is swollen on interior, think it is infected.  Have an appt in am.  Hoping I do not need more surgery.

Dental Odyssey Part 1

Monday I went to Truman Medical Center's Oral Surgery and had my remaining 16 teeth removed.  They also removed four lumps of superfluous bone from the interior of my lower jaw.  My treatment was excellent, they put me at ease.  They were sensitive to my high level of anxiety based upon my prior experiences.  It will take about two months to heal.  Thanks to my friend Chad for driving me to and from the appointment.

This was the culmination of a long series of unfortunate circumstances.  I come from poor genetic stock... My maternal grandmother had needed a full set of dentures by the time she was 26, my mother made her own replacement teeth out of nontoxic sculpey starting at age 40, I am now 45 and not nearly as crafty as was Sandi.  I suspect one of my 115 unidentified gene mutations may be related to my dental woes.  

When I was six months old I had pneumonia accompanied by high fever.  I stopped breathing and turned blue.  My mother slapped me, I began to breath again and she transported me to Children's Mercy Hospital where I had febrile seizures.  I was given penicillin, I was allergic.  I was given tetracycline in its place.  I was treated with tetracycline for nearly every ear, nose and throat infection I had throughout my childhood and young adulthood.  I have heard anecdotal stories associating early tetracycline use with poor dental development.  I was later prescribed dilantin for epilepsy resulting from the same episode at 6 months old.  Dilantin caused sore gums and a reluctance towards proper oral hygiene at a young age.  Add to the equation rampant consumption of coca-cola from a very young age.

At age 19, after a childhood of less than adequate dental and health care I went to a young enthusiastic dentist who had just graduated who drilled holes in my teeth along the gum lines in order to have me as a return customer; the result was that I did not return to a dentist until I was 29.  In the interim I had pulled two molars myself at home because the pain was unbearable.  Good friends, funding from my father and anti-anxiety meds got me in to a new dentist who was very kind but my health and finances gave out before I could complete the treatment plan.  The pain had increased steadily over the years.

Last year I went to a Comfort Dental to get an estimate on getting dentures and was quoted $4,300 for extractions and their "premium" quality dentures.  They recommended same day dentures even though I explained that I have genetic autoimmune and inflammatory issues.  I had asked that they give me estimates for each quality of denture that they make yet they only gave me their highest priced option.  After a lot of research I discovered that Comfort Dental was like many other chain denture places in that their highest quality dentures last 5-7 years and that same day dentures are temporary and need to be replaced at 6 months to a year.  Many of these chain denture shops include the replacement of the initial same day dentures as part of the package price, however, Comfort Dental never clarified this point for me, it appeared their price was for the same day temporary set only and that they would charge to reline them.  My mother had gotten dentures through Affordable Dentures at age 62.  Her experience was horrible.  Her dentures snapped in half on the way home from her final fitting and even after the repair and multiple fittings they fit so poorly that she could neither eat nor shut her mouth with them in.  My beautiful mother looked ridiculous with horse teeth.  This is my worst fear.

My oral surgery was free at Truman based upon my income.  Unfortunately, even though I have both Missouri Medicaid and Medicare, there is no coverage for me to get a set of dentures made.  It is considered cosmetic and not a necessity.   I have contacted this wonderful dentist, John Goodman, DDS, who will give me a $1,500 discount on much higher quality dentures; instead of his normal $4,000 for both upper and lower plates, it will cost $2,500.  This is an estimate and not a firm price and so I am going to try to fundraise for slightly more, just in case.  $2,500 is more than 25% of my annual income.  While there are those cheaper options out there, they are just that, cheap.  The ones I talked to Dr. Goodman about will last up to 20 years.  The ones that cost half as much typically need to be replaced every 5-7 years and are more likely to break, as my mom's did.

I want dentures for the obvious reasons.  I want to smile again without fear of rejection.  I want to be able to throw my head back and give a full throated laugh without fear of killing the jovial mood.  I want to speak my mind with the exuberance that I feel instead of tight lipped so that no one can see what is missing, especially young children who have grabbed my mouth and tried to open it to see what is wrong with my teeth.  I want to eat food other than soft carbohydrate loaded foods that I can mush up, I need solid nutrition to combat my IL-21r gene mutation which causes autoimmune issues.  I want to be seen for the person I am, not other people’s assumptions, so many people assume drug usage is the cause of all bad teeth.  So much of my personality has been suppressed by my dental issues.  If my health ever improves enough for me to resume working teeth are a requirement.

Today the swelling has been at its worst, I am afraid I am getting an abscess.  My face and jaw are bruising.  From my eyes down to under my chin I am developing a multitude of pimples, all the toxins are trying to escape.  I have reduced my smoking to one cigarette a day since the extractions!!  I have a follow up appointment at Truman on Monday the 16th.  More updates to come.