Night 5

So this is night 5 of minimal sleep. One or two hours a night - not sure what is preventing me from sleeping. A lot of it is pain - I fall asleep then pain wakes me, what a lousy alarm clock. I have been able to catch up on some Netflix movies. We do the best we can...it isn't always enough, it is what it is. Each of us moving our pile of rocks from one side of the road to the other. Some folks accomplish this task every day while others are only able to move one or two rocks...either way is fine. As long as you try, as long as you do the best you can-that is all you can do. Love is a fickle partner. Without love we are lost. With love we are both filled up and emptied out...we do not know which lot is ours so we keep on moving. Movement is life (from that movie with George Clooney) Keep moving and you are still in the game. Do not mistake activity for achievement - some people put their life in neutral then give it a lot of gas, only spinning their tires - no movement, a lot of noise and activity - no achievement. At the end of the day I ask myself; "Lisa did you do your best today?" Some days the answer is yes. Some days the answer is no. Either way that day is emptied out so I throw it away and start moving those rocks. In the end, when the meter of our life has run out of time and we've no more quarters what is it we want to be remembered for? I imagine famous people have a difficult time deciding if they want  fame to be their legacy or their life to speak for itself. Either way, our scars become visible - whatever we attempted to hide when we had sight, we get to see all of it. Reckon everyone who knows us sees those scars. This is why I see no need to play "make believe." I am who I am, scars and all. My hands calloused from my daily rock moving. My soul grateful I had the day. My heart humbled because at least once a day, someone has given me laughter, love, faith, hope-either way the meter for that day has expired...moving on. The Serenity Prayer, where does that come from; "the courage to change the things I can." That is the tough part. Finding the courage to make change in our life (without the change we have no coins for the next days meter." That is funny. As Frankie said; "Regrets, I've had a few." Yup, we all have a few. Regrets are not failures. This is a tough distinction! Probably the majority of us are tough critics. It is not regrets which add rocks to our daily pile-it is when we have not tried our best. How many cliches are there about it isn't the times we fall that count, it is the times we get up. Sometimes such simplistic ideology makes me want to puke. Ah the cynic in me...of course there are more days when holding on to simplistic ideology is a gift. KISS-keep it simple stupid. Another good idea often lost somewhere between the white lines. Are there easy days? I don't know. Rock moving is hard work. Simple days, days when we have only to focus on the rocks. Life is difficult, that is not a bad thing - it is what it is, why do we fight so hard. We want the simple days, not because we are weak or lazy. Simple is good. It is better not to perseverate on the rocks we didn't move. It is better to keep our focus on the rocks we did move and marvel at our strength! It would be cool if we could get a mulligan, we can't. We get the day and the rocks - maybe we do nothing with any of it. Perhaps we leave our pile, go work with someone else. There is no correct answer. Just keep some change in your pocket so you can feed the meter-maybe even feed someone else's meter. If you come across the instruction manual could you post it online or mail a jazillion of them to the jazillion people on this planet. Would we then hit the mark with every arrow we shot...I don't think so. Who reads instruction manuals anyway? We look at the picture on box and have at it. More fun that way - ultimately, there is one screw, washer, hook, thing a majig left over. I figure the manufacturer was being kind and put an extra in the box. You should see the coffee cans I have with all those "extra" pieces. I can't throw them away, one never knows when a screw will disappear (insert your "screw loose" joke here) Well the light of day is upon me, best get to moving my rocks or maybe i will just rest my eyes for a few minutes - Peace Out!

August 16, 2012

This was my yesterday...After waiting nearly 3 months for an appointment with the only rheumotologist Wanda picked me up and off we headed to Saranac Lake. The Dr.'s nurse spent approximately 1 hour and 45 minutes logging my medical history and medicines into the computer - before she left to let the Dr. know I was ready to be seen she leaned close my ear and whispered: "Go to Burlington and find a Dr. there." Remember, I waited almost three months to see the rheumotologist in Saranac Lake - I politely smiled & nodded. Then he walked in, THE SPECIALIST DOCTOR! He inquired as to why I was seeking his expertise,(did I mention he is a specialist?) Looking at the notes the nurse had taken, looking at the bag'opills I take he asked me why I was there?

"Well," I responded,"I am going to spend more time in NY so I will need an established relationship with a rheumotologist." He asked me who my primary care Dr. was? I explained the difficulties in finding a primary care Dr in the Malone area...there are 4 doctors from which I have to choose. 2 of them are not accepting new patients, the other  2 doctors felt my medical history was too complicated and they did not wish to interview me for the position of patient in their practice. Unfortunately, I have heard that phrase uttered many times since arriving in NY. It is my humble opinion that this particular "specialist" failed or missed the bedside manner class because he then tells me if I did not tell the Dr's. about my medical history one of them would accept me as a patient!! I might be wrong, however, isn't it mostly sick people with medical needs & histories whom seek medical care? By the way - those angels God sends down here to look after me, Wanda is one of those angels. Bottom line with the specialist - he does not know shingles, in adults, is caused by the herpes's virus, he does not know about Bynlesta, the first drug in a coon's age developed for individuals with SLE, seriously I mean it! Here is  a new treatment or SLE & the specialist does not know about it. I showed him the rash on my midsection, which I typically get prior to a flare up - he told me it wasn't  a pre-flare rash.  I told him about my recent bout with extremely high blood pressure - that is not his speciality, he didn't want to hear it. When we began to discuss the family tree I told him my mother died moments after  I was born therefor I could not provide any information about the maternal side of the family trees' health. He inquired as to the cause of her death, "I mean other than having you." Oh yes he did!

He then began asking the checklist questions, the form I had already filled out and his nurse had inputted the data into the computer from which he was reading - "Any history of heart disease in your family?" "Yes" I replied "My paternal Aunt and Grandfather had medical histories concerning their hearts." Want to know what he said? Come on you know what he said - "What about on your Mother's side?" Oh yes he did! I did not notice noise cancelling ear phones in his ears, I sure did want to ask him if he even had a heart. After about the third question he told me, I really just want you to tell me yes or no, I don't need to know the history behind the answers...this was the family history questionnaire, which Eileen had already filled out, the family history questionnaire I had just spent almost 2 hours going over with his nurse-just answer yes or no.

But wait it gets better! He orders a bundle of blood tests, something I expected - I asked him why he was doing a thyroid function test; well he said because your the area around your thyroid is tender and swollen. I don't suppose he could connect the dot between synthroid as one of my medications with the fact I had a thyroid disorder - in this condescending tone he said; "you could have told me you had a thyroid condition." In my head I'm thinking I assumed a specialist can read-silly mean...reading is not for "specialist"

He ordered an xray of my right hip. Fool I am I asked him why. Apparently, upon his physical examination of me, when he applied pressure to nerve pockets around my right hip I flinched. I have SLE and fibromyalgia, all my nerve pockets are sensitive (even the pockets in my favorite pair of pants) Again, fool that I am I voiced an obvious medical fact...Xrays reveal nothing relating to nerves, I mean it, xrays reveal nothing relating to nerves!

Off to lab where they draw a quart of oil, and a pint of urine - then to the xray machine which will provide no medical information about the nerves in my right hip.  Finished with xray, get dressed - Passed out, fell out - the young woman who had taken my xrays caught me, thank goodness. Then it is off to the ER - I was fine, my BP is high - So we now know the secret for prompt, efficient, and timely discharge from an ER...be sick. While in the ER they brought me a plate of food, a hospital administrator kindly cut the chicken for me.

You never saw a hospital want a patient out of their ER faster than Saranac General Hospital wanted me out of the country.

It was some day-yesterday was one for the great stories to tell which no one will believe. Unbelievable!

Cages

Its all about the cages. Society picks labels, boxes, and cages - we even choose, at times to live in the cages others put out there for us. Zuko, he had a cage, we had to put a lock on it because he could get out by himself. So I'm thinking if Zuko can figure out how to get out of the cage we all can. Life is too short, which is a boring cliche', yet none the less true. My 83 year old father says life is too short - 83 years a good long life - still it is too short. 48 years & 17 days, well that is way too short.
We really must find a way to break out of these self imposed, or society imposed, or family imposed, or expectation imposed cages! At present my cage is medically imposed - but the cage is in the garage. I refuse it. Past few days I have! paid a price for refusing the cage.  Good for me! Today is the last day of Harness Racing.  Reckon the last time I will stand next to my Dad and watch the horses through turn 1 & 2, then sprinting down the backstretch. I have been in bed the past couple of days. Got out of that cage and really tore up the town! I cant miss this day.  It is going to rain, Daddy will know what horses are mudders - he picks the winners.  I pick the horses with the nice names...or the horse Mr. Smith is driving - he seldom loses. If he loses the first heat, he won't lose the second heat, guaranteed - well, unless his horse breaks.
Yes I will get down to the fairgrounds today, stand next to my father and marvel at how far we have come...and how far we need to go - though I have come to realize this is as far as he can go. He loves me in the way he can. That is it!
Oh, and the other day I saw the "bastard" he was walking towards me and I towards him - there was a brief moment of eye contact, the question hung in the space between us "Are you going to speak?" Hell no, I said that with my eyes - we passed without a glance. He sells insurance and financial planning things - I want to take out a full page ad in the local paper telling people not to buy anything from this rapist, child molester, thief of innonence! Could I be sued for slander. I am telling the truth. Paper probably wouldn't print it anyway, oh but a great cage to tear to shreds, wouldn't it be.
The elephant in the blog - my medical cage sucks! I am sorry, I am no longer able to just smile and say "fine." I am going to be fine! I am going to do everything on my "Bucket List", it is a mighty long list! Shari, I am coming to Hawaii! However, I have to vent more. Get some of this frustration out. I do that through writing - don't take it all serious...and do not feel sympathy for me! There are many people with far heavier crosses than mine. I don't know, maybe a peek inside the window of a spirited woman who happens to have this blasted medical cage, well who knows, maybe it will help someone else or provide a bit of insight. If nothing else, it will help me lighten my load - and it is my blog! I don't mean that. I don't want to burden anyone, don't you go worrying about me...God made one tough cookie here...oooooh, I have Grandma's Peanut Butter cookies in the kitchen, mmmmmmm!
Had fried dough last night, not a good night time food - but man it tasted good.  Frenchy's Fried Dough, its delicious - absolutely bad or you, but so good for you - thats another cage - the whole eat this don't eat that, your too fat, your too thin (yes you can be too thin) this causes cancer, this causes your hair to fall out, this will help you live longer...PLEASE!!!! Moderation, fried dough I eat once a year, with a couple hot sausage from JO JO's (man are they good) you know what, if that is going to kill me, the joke is on those Drs. at Cedars! Ha, that would be funny! The whole weight cage and food cage, it is all propaganda put out by prescription drug companies so we get more prescription drugs.  Insurance companies and Prescription drug companies, they run our country.  It is not the President, or Congress - nope, Drug & Insurance companies decide what happens - oh and China because they pretty much own us - Who has the most Olympic Medals? Coincedence? I think not!
Until then - Peace Out

Therapy

I think I was around 9 years old when I began writing my thoughts. Not coincedetally, this was also when I began to comprehend I was "different." Inside, how I felt, that was different - I did not have a word for it, nor any understanding of it - but I felt it. Many of these "journals" I have been able to hold on to.  When I go back to look at some of the things I wrote I laugh my butt off. When we are young everything is so serious. Always and Never cross our lips a hundred times - only with experience can we begin to comprehend few things are always or never. Writing has been a great source of comfort for me. It has helped me through many a difficult time. It has made me laugh. It has provided insight into many of the twists and turns of my life. Writing has been a means of expressing my feelings toward others, and hopefully, been a gift to others. It has not always been pretty and my grammar is poor.  I use a lot of - marks because I don't really know what punctuation mark should go where. And yes, writing is, for me a means of letting out feelings which scare me, or confuse me, or anger me. Through my 48 years & 18 days of life putting my thoughts and feelings on paper, well, it normally makes me feel better. Purging I reckon - put it down, get it out & its done.
Yes, I am going through a particularly difficult time right now.  4 years of a difficult time - ever since that child fell into my leg, it seems my life has just been a slippery slope in the wrong direction. Human as we all are I get frustrated and angry. As much as I would like to be a brave soldier and not complain - sometimes we all need to let it out. When I started writing this blog I did so for all the reasons I write, and I thought it would be cool to share some of my silly thoughts and foolish rants. And it has been. Even though a post from the other day upset folks it was a blessing - because it reminded me how much I am loved! Isn't it amazing? Losing my mother at birth and yet I have the most amazing family anyone could ever ask for? This is also my core truth - for every cross I bore I never carried it alone. Every single moment of my life, God has blessed me with people whom loved me without condition, expectation...just love! It is so humbling knowing how much I am loved - with my flaws, foibles, idiosyncricies - even these stupid red puffy cheecks, (goodness they bother me) I am loved.
Yes, right now is a difficult time for me. After 20 years I left CA. The person I was in love with fell out of love with me. My little girl Emily, she is growing up & I am not there. I came home because that is where you go when the chips are down and you need others to help you stand up - since I arrived, that is exactly what I have received - In Texas with my Poopy Sister & here in Malone. Yup I cry, and darn I hurt. It is not over though! I don't quit. Asking others for help is not my best skill, I am getting better. I know whomever I ask, they would drop everything and be right here for me. Isn't that amazing? It is, really, trust me...it is!
No, I can't always put on a smile and march on bravely. Right now, there is an ice pick piercing my right temple, forcing my right eye closed, and causing a pain like you wouldn't believe - I will go lie down now. When I wake the pain will be gone. I miss not being at the fair today. I love the fair. Pushed myself too much this week. Reckon I wanted one week of being "normal." I have to change my perception of normal. It is time for reflection, introspection, and a reality check - this is why I write. Please do not be alarmed. I share because I know the people who read what I write, all 4 of you, I know you care - writing helps me let things out or express feelings I can't speak. Fear not, this young broad, has a lot of living to do. Today I need to rest - but tomorrow is a new day, I will fill it with harness racing, hot sausage, fried dough, walk around ice cream sundaes, friends, laughter, maybe even a Tilt a Whirl ride. (maybe the spinning of the ride will balance the spinning in my head) Speaking of which I need to go put mine back on its pillow.
Peace out my Peeps - keep on keeping on, I will & so must you!
And would somebody have a strawberry daquiri for me? I love those drinks. Suppose I could get a virgin one. We use to order those at the Lakesider Restuarant when we ate there with Chickie - Now its a camp, Monettes bought it and made it a camp.

Core Truth - read at your own risk

1. Purple is my new favorite color!

Beyond here I have to do some mental housekeeping. I have not written in a long time - does anyone else have a running conversation in their head they mean to write down, just never get around to it? All my health woes are well documented...blah, blah, blah, Lupus sucks! I can feel pain in my eyelashes then someone says how healthy I look.FYI-that is the medicine giving a bright red fat face. I do not like a fat red face! When a person asks; "How are you feeling?" it is nice, polite, social - can I scream? "My bones are on fire, my head is going to explode, everyday I notice my eyesight lessening, and if I had 10 Percocet i would take 5 !" and that is another thing...NY laws regarding prescription pain meds are barbaric. I bet inmates have an easier time getting pain meds than regular folk. Am I addicted to pain med? Uh yeah, because i am opposed to pain! It is a quality of life issue-no I don't want to be addicted to anything, but I am. I have SLE 20 years, cuts in my brain leaking brain fluid, white matter in my brain which is inoperable cause I coded the last time & Dr. Brainiac says I won't survive another operation. I have vasculitis, fibromyalgia, CNS Lupus, hypo thyroid disease, secondary Cushing disease 

high blood pressure (like 135/107) injured at work there is a nerve impinged between my tib/fib head joint, C4 & C5 are    compressed and impinging another nerve, T3 was moved right of my spinal column, T2 slid to the right. That'sthe big stuff...do I require medicine to help ease my pain? Heck ya! Does this make me an addict? Do I care? With the appropriate regimen of medicines I get to participate in life-without them I am a spectator. Those of you who know me, know I like to participate-Tiddlywinks, cards, maybe even swing a golf club again. This menagerie of illnesses forced me to retire on disability...50% of my previous income & Medicaid. I know I am 48'years & 20 days, this is not where I ever thought I would be. My home is the kindness of those who love me or i would be homeless...just Zuko & I living in a pickup! Good country song in there somewhere.  I don't have any sense  taste, brain Dr. Took that. The upper quadrant of peripheral vision in my right eye is gone Sometimes i fall down. Standing one moment, 

 

next thing I know Zuko is licking my face. When I was staying at Poopy's I apparently slept for several days-we affectionetly called them "coma sleeps." my Jessica Rosemis 10, she need not watch Aunt Lee Lee "coma sleep."  i write all of this as background to th core raw...i do not live more than any 5 minute span when either the physical pain hits or the emotional reality hits. I cry myself to sleep. (which does not help under eye bags or dark circles) I avoid mirrors for i find the red bloated cheeks hideous! They are, they aren't healthy robust cheeks they are damaged forever so I don't look in mirrors. I am fat. For my comfort I am fat, an athlete all my life reduced to a comfy chair and blanket. Have you any idea how much that sucks? I know, I know, I am luckier than so many others...we all have our cross to bear-I am so tired! If I could take away a child's cancer or a soldier's PTSD'i would. Right now, here tonight, i am dishing my core truth...I believe I should be like a wounded animal & go off alone for this leg of my journey. No matter how much someone wants to see you through, that is too darn hard & too much to ask. And sometimes what others believe you should do is not whatmy