Dreaded Winter Season

Winter means the heater is kicked into high gear which in turn will drastically increase flares from the dreaded Sjogren's.  Had a rude awaken this morning nose stopped up, joints flaming, mouth & throat bone dry, and thick mucus running down the back of my throat.

Hoping that the impending move back to the coast will help to relieve some of the flaring, since I seem to have less flares in the less congested coast.  Yes military traffic is bad but you guys haven't lived in Raleigh over 10 years it is far worse up here.

Still have a lot to still do up in Raleigh, paperwork, doctor appointments and more decisions that will effect the rest of my life.  We defiantly have to get out of this apartment no overtime means that my income is significantly less as is like almost $10,000 different and will be a lot less once I either run out of sick/vacation or cash that out and start receiving 50% of my pay on short term.   I have already been emailed paperwork for Long Term Disability, ugh decisions, decisions.   Less pay sadly doesn't mean less bills, I have dreaded logging in to UNC Healthlink to see the bill from the trip to the ER this month, I have a feeling I may break the $10,000 mark with the hospital.  Going to have to negotiate a much lower payment no way in hell I can pay $230 a month, I should qualify for assistance once I start only getting 50% of my paycheck....ugh

Seem to have less flares as long as I sleep during the day and up at night but there isn't much to do, hoping I can adjust my scheduling this December, hoping to spend the majority of that time on the coast.  At least I know more than likely Tonya and Randy will be up in the wee hours of the morning.   Tomorrow we have to go talk to the ding dongs at the apartment office about putting in our moving out notice because she apparently put in the computer our lease ends in March, I don't think so more like Jan.  Hopefully we will also get to go to the movies.

 

Ugh Sleep, Pain, Nervous System Haywire?

It has been a crazy ride trying to adjust to a new combination of drugs once you think yes finally a routine, it gets blown out of the water.  For a while 12 hours up 12 hours a sleep was the routine up and night and asleep in the day time, then sudden you’re no longer sleepy and end up staying up a day and sleeping 2 days.  Then it seems back on a somewhat normal schedule getting up at noon, and bad before midnight.  On top of that I have to eat before I go to bed.  Yes before, I can't sleep unless I have a full stomach, food equals bedtime, strange I know what can I say. 

At my last appointment we discussed the possible need to get my nerves tested because some of the issues I am having in nerve related.   Then it was just an irritation but the latest problem pain medication doesn’t even touch it, lower back pain with shooting pain down the legs when walking and standing.   Before it would do it when I first woke up and went away once I got moving not anymore, I thought I was going to die when we went to the State Fair.  Nerve pain shooting down, legs heavy, if I pressed certain spots on my side/back basically I think I was pressing on the nerve the pain stopped.  I had to take a seat while Carrie got some money out of the cash machine.  Got up didn't hurt 10 steps later and the tightness started again, rotating between left and right then both and heavy feeling.  Hoping it will disappear as mysteriously as it appeared, if it doesn’t improve by the end of this week then I will have to email the doctor. 

My lungs are also acting up had some wheezing and crackling on my last visit you can hear the funny sounds while I am breathing.  When I cough you can hear the wetness/fluids whatever the hell is in there, knowing my luck problem walking pneumonia trying to make another come back.  I would rather have that and not the cancer; I guess we will get the answer at the end of the month.   Unscheduled nose bleeds have also been on the daily or every other day, which can take up to an hour to stop.  Swelling is still a major issue hands and feet some pain in what feels like my bones.  I have a scan date of November 29^th, I also need to reschedule some appointments particular my annual visit with the GYN especially due to the location of the current pain.   I may just see if I can get into to see her earlier.

Funny how I have no pain sitting down, got two pillows behind my back, a chair pulled up close since my chair can no longer recline with my laptop sitting on it.   Wide awake only got maybe 2 to 3 hours of sleep, woke up repeatedly to pee, increased the water to see if that would help.  Yeah that helped all right hiccups and upchucked the water, the stomach was having none of that water crap.   As usual no appetite, no hunger pains, have to force myself to eat, it is hard since my taste buds have changed and some are gone, no fun eating if you can’t taste it.   Carrie laughs since my main food has been the beer sausage, and mac and cheese I eat it because I can taste it.  Right now I am eating the vegetable soup Carrie made yesterday, the pepper is a little strong if though she barley put in any but certain buds are super sensitive.

I have also had nerve pain and muscle spasms on my left arm, several times I have pushed up off my bed using that arm only to have a burning sensation go from the tip of my fingers to the middle of my pectoral muscle which would then spasm.  The whole back is sore, being trying to make sure I am sitting and walking proper, no slouching to see if that helps any.  Once it hits 9 am I have to do some errands and get some exercise in, which means window shopping, an attempt to make a couple laps of the Cary Mall, and hit some big lots.   On the hunt for the elusive He Man for my cohorts in crime down in J’ville, also on the hunt to the other half of the Ghostbuster Team.

I have made significant progress on the interior of my RV that I have been remodeling, no its not a real RV, it is my mini me (Barbie) RV.   Still trying to figure out exactly how I want to paint the exterior, also got to figure out the dash what I want to add and how to do it.   I will be posting updates and pictures on my miniature blog.     

Drawing, Sewing, Painting, Sculptures Art, Crafts, Imagination and reading have always played a major role in both my sister and me.  Our mother was all about expressing our selves through art, I remember sitting at my wooden table (which I still have and Skylar has been eyeing) playing with finger paint. I have a vague memory about finger painting at 2 and getting more on myself than the paper. Needless to say I ended up getting an 2 in 1 easel and chalk board, and my happy butt was on the patio with my wooden table and easel, finger paint, water colors, markers you name I used it and gots lots on me.  Most kids know would get in trouble for what was normal when my sister and I grew up.

 I can tell you I would have already been suspended from school, hell my mom probably would have home schooled us, because of ADHD, which we had or should I say still have.  But instead of medication my mom channeled that energy into constructive things; she actually took the time to be a parent unlike many it seems now.   Instead of trying to figure out what will work and benefit the child they are instead doped up.   It is a shame cause creativity and imagination is becoming a lost art to today’s kids especially those under 21.

Growing up my first miniature was my 1/87 HO train set, than my ¼ scale dollhouse, then my 1/12 scale dollhouse, and then 1/6 Barbie/Gi-Joe/Fashion Dolls/Playscale.   

The latter being the largest scale which is the scale I am spending a bulk of my time right now working on.  I hope to get my train back up and running once I get Heidi’s Imagination Station set up.  The dolls I collector aren’t in boxes, (a few are but the majority aren't).  I like to customize meaning taking heads off putting on different bodies, making custom clothing and remodeling vehicles, furniture and houses.  It is amazing what everyday objects you can turn into a use for various scales. 

Thank-full I was raised well rounded meaning I not only learned the girly stuff like cooking & cleaning, I also learned how to use a hammer, drill, saws, etc.  While dad was fixing or building something at home, I was right behind with my tool belt using scraps to build stuff.  Built a dollhouse for my gi-joe, wonder whatever happened to it?  That was a cool ass house, built a boat, actually made a sold one of my sculptures in high school made of scrap.  

Why I am talking about hobbies because I have joined my Uncles many of whom are on the same medications I am in the world of semi or full retired.   My hobbies are my new escape from reality, and there is no schedule I rise, sleep and eat on fluid schedule that is always changing.  From what I have observed Humphrey’s especially the girls are night owls, almost everyone has night jobs.  This works good for my since the sun and I are no longer on talking terms.  I have on and off again relationship with the light bulbs depending on that type and how bright.

I am officially on Short Term Disability, and with how things have been unfolding the last couple of months, Long Term is becoming more of a reality.  If you would have asked me 10 years ago where I planned to be in my mid 30’s, working in my toy shop would not have even been a blimp on the radar unless I had won the lotto.   On the bright side the all have power tools, wood and many other things laying around that can be made into something.  

I lot of hard decisions have been presented to me over the last couple of months, and even more decisions need to be made.  This month I will be finding out when we have to give noticed of moving out of our apartment, my sister will be getting a smaller up here, while I will move back to J’ville for now.  It appears I already qualify for long term disability, so the question of resigning position or waiting in case a miracle happens?  I was told I could resign my position now and get a payout of money from sick and vacation, then my paycheck would be 50%.  I will have to set up another meeting with my case worker to talk that over again to make sure I understand correctly.  I really don't want to but, money wise/financially I need the money for my bills and to get the bathroom in my new pad done. Way too many tough decisions, really need to plan an escape to the mountains, Dollywood and Gatlinburg. 

The way I see it my second childhood since I will be spending weekends with some crazy ass pre-teen and teenage 2^nd cousins.  Someone has got to show them how to effectively use there imagination and tap into that creativity that runs in the family.  Movie marathons with my cohorts in crime, it has been a while since are last Harry Potterathon, we really need to do a Halloween Marathon.  My plan was to drive both cars down but at this rate I will be a passenger this week as we go down to spend Halloween at home. 

Whirl Wind

Your world went from riding the horse on the carousel to your back up against the walls of the Gravatron, faster and faster your world seemingly spiraling out of control.   Then you see the red button in the center you struggle to get to it and hit slowly the world stops spinning.  Now you stand in the middle looking at 3 exits which one are you going to take each one holds a different road?

The door you really want is not an option that shipped sail over 5 years ago, another you can take isn’t in your best interest, which leaves 2 now the question is which one is more financial sense?  That is just the financial doors not even the medical ones which are way more grim.

Funny how it takes poison and some drug called Leflumodie is now waiting in the wings in case round 2 of methotraxte doesn’t go well, as in if I get the Rash again metho is doneso……..Just a little info apparently leflunomide,  has a half-life of 2 years, meaning in order to get it out of your body you got to take another set of drugs to flush it out of your system before going you can start another drug…..which by the way they have no clue what drug that will be….on top of that the Leflumodie has yet to be approved by the oncologist.

As usually they can’t figure out the swelling in my hands or why I can’t make a fist with my left hand, apparently the swelling isn’t normal and apparently not sponge like it is supposed to be?  Great like usual I don’t follow the correct protocol of symptoms nor due the drugs work like they are suppose too………..ugh At least this could have an ending like a freaking Marvel movie and I can become a super hero that can fly and lift heavy objects, really is that too much to ask for?

4 years NED and the reality of disability

This October will be 4 years since I started my Chemo Holiday which I was told originally it would be for a short time.   I have blissful lived in the land of denial over the fact I have cancer and an autoimmune disorder but my body had finally stated enough is a enough.

I am officially on FMLA and in the process of filling out short term disability paperwork.  Which has made my family really really happy since they wanted this done 5 years ago.  I have also rolled the dice with taking a new drug that could possible open the door for the cancer to spread like wild fire.  I may be a little paranoid but I don't like how the liver is feeling, since the drug I am on is actually a Chemo but is used for autoimmune disorders but can damage the liver.

Will it be my friend or enemy only time will tell, guess I will find out at the end of Sept. when I go see the Oncologist.  My schedule is still crazy apparently my body wants to stay up the exact amount of time I slept on most days, sleep 14 up 14 hours.  Then there are days 1, 2, & 3 after taking the Methotraxate that is taken once a week I will sleep a day and sometime a day and half.

Now I got to figure out money, since normally I am getting overtime in the fall, so that means a lot less money while my medical bills continue to grow leaps and bounds.  One of these days this month I will have to figure out long term financial issues, applying for social security disability, we sorta got a handle on the amount of money from work disability.  Luckily one of my credit cards that I have had to use for medical bills has a medical hardship so they are processing my paperwork, now I have to figure out if the rest of them have this too.

After FMLA will be short term disability as we try to put a cork in the damage the Sjogren's is causing, it has been a frustrating year, with the inability to sleep, not being able to open a bag of chips and having to use scissors, dropping things because the dexterity has become hit and miss, pain from the ridges on a bottle of steak sauce, not realizing you cut your self until you or someone else notices the blood, swelling of joints that want go away just a few irrations.

On the bright side I think I am catching up on my sleep, only time I set an alarm is when I have a doctor's appointment which are now in the afternoons.   Hoping to get back in some sort of shape when I get back to J['ville so I will be ready when the cancer decides to go on to round 3, got my bike put back together, but I think I will be during a lot of night swimming since it is less stress on the joints.

This is definitely going to be an interesting ride over the next couple of months.

Trials and Tribulations

Trials and Tribulations of life, we have had childhoods that are hard to come by these days, being from a big close family for some of us both sides are huge, we had opportunities and experiences others have not, for that alone we should be thankful.  There is a saying it takes a village to raise a child and that is what we have experienced and that is what the next generation should experience.  We have learned invaluable lessons from not only our parents, our aunt’s and uncles as well as each other but from our Grandmothers for myself, Carrie, Rene, Tonya and Asheston we had two very strong grandmothers.

Being from a large family marriage, births and deaths are the norm sometimes yearly and sometimes in clusters.  We have seen the gambit of tragedies, injuries, and disease range from cancer to ALS that has taken the young and the old.  For some it was quick for others it was a long battle, luckily we were raised in a tough nonsense way and we are stubborn among other things.  Each and every time we face adversity we rally together lifting each other up and holding our head high. 

I often wonder why I was the one to get nailed with every screwed up gene both the Parker and Humphrey Family had to offer. ( For those friends of my family I was diagnosied in 2008 with Stage IV Triple Negative Breast Cancer that is extremely aggressive as well as an auto-immune disorder called Sjogren’s.)     Might be for the reason I am stubborn as hell just like my grandmothers, my mother, Sabrina (our cousin passed away from ALS @16) and Uncle Roland.   

I have come to realize that I have somehow became the person everyone turns to with health scares and questions and I reminder for those cousins on the Parker side of the importance of finding out if you carry the BRAC1 gene that causes Cancer on the Parker Side.   I first came to this realization of why I was still kicking when my preteen 2^nd cousin Sabrina asked me if her mom suffered when she passed and if it would hurt when she died.  I guess in her mind it was easier to ask someone that was going thru a terminal battle.   That was one of the hardest conversations I have ever had to have.  We find ourselves once again waiting to hearing the trumpets, I have a feeling just like when my mother passed and when Sabrina passed we will know instantly we didn’t need a call, you just knew.  I remember with in less than 5 minutes every household porch lights flicker on when my mom passed, for Sabrina I was in Raleigh when I woke up from a dead sleep went to the living room turned on my phone and Tonya called to let me know her suffering was over, her pain gone. 

Now we face a 3^rd “Boss Man” Uncle Roland who has been fiercely fighting cancer is at home in the neighborhood where he grew up surrounded by family and friends.  Kimberly, Bobbi and Kimberly are now in the position Carrie, Dad and I where in 2006 and where Noland, Zelma, Asheston, Rene & Tonya where in 2010.   There is no way to describe what it puts you through, caring for and watching your love fighting for there life.  But I can tell you that you will become even stronger when you reach the other side. I know Uncle Roland is proud as his daughters pamper him and shower with love, Aunt Bobbi as she has always been by his side thru thick and thin, and all his grandchildren as well as great-grandchildren.

Something to remember is that you may physically lose a loved one but you will never lose the mark they have left not only on the world but to indivudials hearts, mind, soul, and memories.   The strangest things will remind you of them, a smell, a touch will trigure a flood of memories and you know they will be watching over you.

As we rally yet once again this would be a good time to think about providing everyone’s children and grandchildren with some of village raising that made our generation what we are.  Today’s generation is too focused on technology and somehow common sense, creativity, reading, writing and artistic ability has disappeared.  The more kids learn about the different ways of doing things, different thoughts the better off they will be later in life.   As I look around the neighborhood it is kinda of funny we claimed as children we were not going to be living in the neighbor when we grow up.  Then we grow up for some of us explore college, other’s military and those that didn’t quite make it out, as time passed we realized how good we had it and we find ourselves slowly making our way back.  The best part of neighborhood is the woods, creek, fields and pond that provided us with endless hours of fun.   As Christy stated a few days a ago any beef or wrongs we may think a cousin/familt/friend has done it is time to forgive and forget.     Friends will come and go but family will always be there for you thru thick and thin.   

Back to the Basics turning back the clock

I have finally realized that the approach I took with my Cancer is NOT the approach needed to grasp and get the Sjogren’s under-contol.  Being stubborn and strong minded that for me happened to run in both sides of the family, I ended up pushing my body far past its capacity.  It became apparent in the middle of the Fall 2012 (October) that my body hit the wall.  I tried different things to get back to what I thought was normally or what I was before 2008.  Living as close to normal as possible got me thru the Cancer dx and initial treatment, but the problem is I was in denial (a blissful denial) of the cancer and attempted to live like nothing was different.  Problem, it was different my body needed doesn’t respond like it used to, pulling all-nighters, working 100 days straight was normal, staying up late getting in work early.  I tried desperately to hang onto life pre-2008 but that chapter of my life has been closed.  

The after effects of the aggressive treatment I went thru with no time off except for the 3 weeks off with my bilateral mastectomy and the diagnosis of Sjogren’s Syndrome has played a role into where I stand today.  In the past Christmas break almost a month is when I re-energized just like the summer to prepare for the upcoming Season.  Spring 2012 I was nailed walking pneumia and basically had to call work then to take the next four days off, before my doctor’s would allow me to live.  They knew I pushed things to the limit.  This spring my body basically checked out after 3 to 6 hours, I never recovered from the Fall.  As each month passed it got worse, extreme fatigue had set in and doesn’t seem to want to part ways. 

I have been battling within on disability or thought it cause if you don’t it is like your giving in, thrown up the white flag, dug your grave, well you the point.  My body went a little over board in convincing me it was time to apply the brakes to the Nascar and get into the horse and carriage.  I had a skin reaction and the swelling got really bad, before I was just a little puffy but then my joints became inflamed decreasing my mobility.

Since 08 Carrie and I have often discussed how we would like to live our life, well it looks like we are very close to beginning his New Approach on life.  I guess it is really more of turning back the clock to how our grandparents lived when it comes to wear our food comes from.  There was no Wal-Mart just a general store, food was grown by the family, eggs came from the roster house, milk from a goat or cow if you happened to have one or delivered in a glass jug, vegetables came from your garden, fruit from the trees in your yard and berries from the woods or from a nearby farm, and meat came from hunting or fishing.  When one did go to the store it was to pick up flour, sugar, rice and other base items.  One would also trade other items for things they needed kinda like the show on Nation Geographic Life Below Zero.

Growing up my job was to feed the chickens and collect the eggs.  My dad wasn’t a hunter he often worked night shift and did odds and end jobs to make ends meet.  My mom raised the chickens and killed the chickens as well as maintained a huge garden, canned, maintained the yard while teaching her children.   In the summer time she took us fishing and crabbing, we didn’t have a boat so she would have to buy the shrimp.

Carrie and I have decided are goal is to go back to the old ways, deer meat, seafood and our own garden vegetable.  Trips to the farmer market or farm to pick are on fruits and vegetables.  Processed food and our bodies do not see eye to eye majority of the preservatives and pesticides used on mass produced food aggravates are digestive system.  I can hear the yeah right, yes I may occasional eat at my Favorite sub and a steak at least once a month, but no more since it really hurts when I do but damn if it doesn’t taste good.

Never really hunted as a child but I am a natural left and right hand with the bow and arrow, Carrie on the other hand did hunt squirrels and birds in her prime youth.  I do remember going hunting a few times for squirrels and rabbits with my dad when I was little.   It shouldn’t be too hard to shoot and aim but one must learn the art of hunting which shouldn’t be hard especially since I know several expert hunters. (um yeah Boo, might need some lessons).

I figure we want having any problems keeping the garden weeded and the eggs collected, I have 2 workers in mind under the age of 18.   It will be fun rounding everyone up to crab like the old days at the end or the beach.  Saving money to get a Carolina swift boat to fish, crab and maybe learn how to shrimp.   The hardest part is I will not be able to as much as I use to do, but I have a few candidates in mind a few houses down to help.  

Besides hunting we can also go in together with some other cuz purchase a pig at the market, bring it home and have a pig killing.  I can hear some laughter coming from people, but that among other get together is what I remember in my childhood

·       My mom and Grandma P wringing the neck or chopping off the chicken head, the one I miss the most was the Roster with the Talons from Hell, Boo should remember him the one we took to Farm Day at school, mean SOB had to take a frying pan when I went to get eggs, had to knock him hard twice going in and twice going out.  Boy did he put up a fight, wringing his neck failed, and the ax wasn’t much better, damn thing ran around like 10 minutes blood squirting everywhere and he looked like nearly Headless Nick from Harry Potter…lol before he finally dropped.

·       Sitting on the back porch plucking feathers off

·       Scaling fish

·       Deveining and taking the head off shrimp

·       Cleaning Crabs that we caught

·       Watching the uncles gut the pig

·       Sitting in at the kitchen table with Rosie making sausage

·       Learning to make biscuits with Grandma P

·       Watching Grandma H walk at her back door with a gun and take out a couple of squirrels and skinning them on the back porch

·       Being scared for life when I looked in the pot at Grandma H house and eye balls popped up..ugh

·       Shucking corn

·       Stomping grapes when dad decided he was going to make wine…..Instead of wine Carrie will be brewing some beer.

A slower and more simply way of life, sitting on the deck listening to the chirping and croaking, feeling the wind rustle past you off the water, seeing trees, smelling pollen and actually seeing starts, spending a lazy day fishing at the pond, riding in the boat at night, a midnight swim in the pool, hopefully will help to get the body back in line and make it easier in dealing with my Sjogren’s and my overall health.  I have to figure out how to get back on track before the cancer returns so I can have the strength to fight just as hard the first time around.  Looking back the doctor’s and I have determined I had the Sjogren’s in elementary school, around 3^rd grade was the beginning. There is one Summer that I had no issues, it was 2000 when I was a camp counselor at Camp Seafarer, best summer of my life.  Yeah it was work but it didn’t feel like work, my skin issues cleared up, had absolutely no digestive issues, and limited to no stress.  I also can’t even recognize myself when I look at some of the photos, damn I get dark spending every day outside.

 

 

Medical Leave and Sleep

Apparently my body is still trying to catch up on sleep, cause that is basically what I do especially after taking my new meds Methotrexate.  I take it once a week on Wednesday, I picked this day cause I like to take walks at the flea market on the weekends and that is when most everyone has off so if I want to visit weekend I would have some energy.   For those that don't know I have taken medical leave from work in hopes of getting my Sjogren's under-control.  All the medication we have tried so far have not been able to keep all my flares under-control.

What is a flare you ask?  A flare is when my white blood cells attack my healthy cells, it can range from swollen glands on the neck, to inflammation of joints and soft connective tissue like your ribs.   For me I have been fighting extreme fatigue for over a year that has gotten progressively worse, swollen hands, feet and ankles, random itching fits, light sensitivity both eyes and skin just to name a few.   It has become apparent that my body prefers night owl status, which last night it became apparent that most of my cousins are all night owls.  No wonder like 6 that I now of work the night shift, it was nice to be able to chit chat at 3am, although a few of you have day jobs how u manage to say up all night then go to work, I have got to give you props.  Back in the day I could pull that off, but know that isn't going to happen.  Cognitive issues and memory has also taken a hit, I have had to turn some things over to Carrie to handle and have had to come with some spreadsheets to make sure I get everything done and keep track of symptoms for the doctors'.  It is frustrating I have everything written down and forget to tell the doctors...ugh

It was a tough decision to step away from work, but I know that is what is best medically.  What the future holds no one knows, but I do know I need to get back in shape, especially with all these drugs that can cause weight gain.  It is time to look after Heidi, it has been frustrating as the days, weeks, months pass as more issues have risen and the one that scares me the most is losing dexterity in my hands.

Things that would normally take like 5 minutes takes 30, carpel tunnel, sensitivity to touch/heat/cold, locking up, dexterity just to name a few.  For those that don't know creating crafts and scale building is something I enjoy as well as drawing and painting.  I have not been able to enjoy this past time as much due to limited energy and pain.swelling in my hands.  It has been frustrating but I have learned I can do it, its just going to take way longer, and I will have to take lots of breaks.

Whether my leave will be short term or long is still up in the air just like when or where my cancer will rear its ugly head.  It is hard to explain because many think because I am NED that the cancer is gone, its not it is just to small for current technology to see.  I like many other women and men with Stage IV breast cancer live life in 3 months increments.  Every pain or strange feeling can make you stomach drop like your on a roller coast, is it cancer, will the next chemo keep it under-control.  Then there is the ever mounting bills, pharmacy bills, just to name a few.

I plan on spending more time on the coast the remainder of the year, my sister and I are finally getting are pad fixed.  Since we own means we can design it any way we want too.  This has sent my creativity in over drive, it has been a long time since my creativity juices has flowed...Why you ask?  Simple I have been listening to my body, I pay no attention to a clock nor do I set an alarm except if I have a doctor's appointment...lol  With those in the past I had them in the morning no more they are late in the afternoon....It takes at least 12 hours for me to get 8 hours of sleep due to me having to drink allot to keep hydrated.  I get up between 4 to 12 times a night and sometimes I get hungry have to eat then go back to sleep...lol  I am still fatigued but not as bad also my need for pain meds has decreased slowly as my body is trying to readjust to its new reality.

It kills me that I went to sleep at 5am got up at 230pm, ate a little took my pills, its strange I can't eat a meal until 2 to 3 hours after I take my pills.  So at 3pm I go out to get a little exercise in, window shopping as I call it and then picked up some food.  As usually a short drive to Cary Towne shopping Center exhausted me I was sleepy as I returned back home, just finished my meal and it is time for a nap but that is going to have to wait....My plan is a midnight bedtime so I can get my power-walk in at teh flea market early in the morning before the sun gets bad.  As usually shades and a long sleeve shirt and 50 sun tan lotion is the required items to adventure outside.  I have to limit my time outside too much sun not good.

This year is shaping up as a tough year for the family in general, I have an Uncle like me that has been battling cancer he has not been as fortunate as me, another uncle who has been in and out the hospital as they try to save his foot, a cousin a few years older than me fighting an infection.  Thank-full all three are at home with pain under-control, sadly for one the future isn't as bright as he fights daily to see the next sunrise.  Strong headed and stubbornness is characteristics we all have and statistics don't mean crap to us we cut our on unique path. 

It is funny how as children us cousins talked about how we were getting the Hell out of Jacksonville and never looking back.  Many of us got out, went to college, moved to Wilmington or Raleigh, now slowly we are all somehow ending up back in the neighborhood we swore up and down we wouldn't. 

Waiting Game....

We are now waiting for the results of the CT Scan to determine if we will be treating my cancer or my Sjogren’s with some new medicine combo.  The goal has been since Summer 2010 when the doctor’s finally figured out the problem an autoimmune disorder we have been trying to get it under control.  For a while it was under control until Dec 2011 when it flared up the first of the year I was smacked with walking pneumonia.  Ever since then my immune system has been in over drive given my body a beaten since then more and more drugs have been added.  Now we are looking at only one being dropped and like five being added if the cancer isn’t back.  The question is how many more side effects from drugs will there be. 

Physically and mentally my body is totally exhausted, as my sister stated today I am always tired and sore.   The pain and exhaustion during the busy part of the year, zaps all my energy, it becomes a task getting out of the car good day not that bad, on a bad day literally have to pull myself up by the door and slowly make it to the front door.  Make some food and get a late night snack so I don’t have to go back up the stairs.  I sit down in the lazy boy with Mr. Turtle depending on the day the pain gets under control if not have to take another pill before slowly climbing in bed.   Before I would take weekend vacations visiting family at the beach or the river but I haven’t been able to do that for almost 2 years.  The drive itself is exhausting leaving no time really to do anything, then I need 2 days off to recovery from it..lol  Mostly I have been using the weekend to make up for the lack of sleep during the week, 24 to 36 hours of sleep on the weekend and sleeping in on Monday.   The pain has also increase which means an increase in meds that has the side effect of sleepiness.  No pain means being drowsy and possibly taking naps, my sister said she doesn’t know how I do it, wait till she reads all the possibly side effects on the bottle…lol

Mentally it takes me longer to do simple things that before was easy, distraction and literally forgetting what I am doing in the middle of doing it…lol……….Having days where you don’t have the strength or dexterity to open a bottle of steak sauce, having the ridges in the cap send pain signals thru out your body, unable to use the can opener (the one your sister bought because it had a bigger handle meaning less of a struggle to use).   Also get nauseated and eyes start to get blurry after 20 minutes looking at the screen, which is why it took all day to type this. 

Tomorrow I have to schedule more appointments and a few more test.  The big and painful one is a nerve test; it is highly likely the Sjogren’s is attacking my nerves.  The Neurologist, Rheumatologist and Digestive/Nutrition, all mention the possibility of nerve involvement.   Digestion thinks there might be some miscommunication or misfire to the stomach, the Rheum and Neurologist think the tingling and numbness at night is the nerves getting attacked.