Morning Ritual

Waking to pain radiating from area’s you didn’t even know existed, slowly roll over and stand up, your feet hit the floor and snap crackle pop fills the morning air.   Slowly climb your way to the kitchen, open the fridge nothing, freezer um no to the pizza bites, instant replay of the previous morning of those coming back up, ugh, into the pantry, then the stand alone freezer.  Damn we really need to stop talking about groceries and go buy some give up and grab the box of captain crunch.  Not good ur body needs more nutrients but the pain is overwhelming need to take meds and need something on the stomach.  Slowly back down the stairs holding on the rail hoping that you don’t lose traction on the last couple of steps.  Grab the blanket from the bed room, drink from the fridge and sit down at the computer, grab the remote and turn tv to criminal minds.  Damn have to get back up one of the pill bottle’s is empty to the medicine cabinet then back, staring at 9 pills, take them all at once.  Pain still shooting up from ur finger tips, pain radiating around ur wrist other pains that can’t really be described.  Forty five minutes past still pain, damn when I am I going to learn that I need to take to pills for the break thru pain especially in the morning.  It usually takes till at least noon before 90% of the pain is under control.  This is my typical morning. 

I need to buckle down and implement what my body needs and not what my brain wants some times.  The biggest issue is basically everyone’s MONEY, a staple meal that gives me energy and is good for me is smoked salmon and either a bowl of mac & cheese or cream of corn.  The smoked salmon has to be a particular one from Food Lion, trust me I tried passing off others and my stomach wasn’t having any of that, problem is its hard to get and $5 a pack…ugh.  I need to increase my calories to 1500 cause right now I get like 500 from food a day if I am lucky.  After the meds kicked in went back upstairs to cook a bake potato got about 6 bites and that was all she wrote.  To ensure it wouldn’t come back up meant a mini 20 minute nap as the increased pain pills make me sleepy as well.   Switched back to the Cymbalta that seems to be helping with the increased back pain that started but the spine still hurts when you touch it or rub it against something.  Tomorrow I will go and talk to the Rheumatologist and get my scan but I have a feeling my tummy isn’t going to be happy with the contrast.

Rest Not..........

Apparently rest isn’t the solution, we can now add the spine to the affected areas, all joints are even more irritated and painful.  You know you’re in trouble win the pain meds aren’t working as well and the tummy is pissed.  Sleep? How about having crazy ass dreams and waking up every hour on the hour to pee or to roll over because something has gone numb.   Doctor appointment is Thursday, meaning I got to list all me symptoms down and download the pictures.  So much that needs to be done but limited energy drags everything out.

The ability to multitask has long past but at least some of my creativity has seem to come to the surface.  Although my joints are intent on preventing me to put my ideas into action, so frustrating having to get others to do something especially when it’s a simple task, like opening a bottle.   I have to quickly sketch out or write the thing down, sometimes I write it down in the wrong book only to find it weeks later.  I am trying to have a couple of notebooks near me at all time, one for arts & crafts, one for my cancer, one for my Sjogren’s & RA, one for taxes, and one for living space décor.

Everyone has their flaws one of my biggest that everyone can agree on is asking for help, which was my mom’s flaw as well.  I even allowed Carrie to drive back to the coast on our last trip, yeah I just heard some dishes crashing on the floor and some jaws being brought back up with a hand.   My mind is about to exploded what to do, right, wrong which way to pass go and collect $200.  When it rains it hails, getting slammed with flares from hell, then a rock cracks my window meaning I got to cough up some money to get it replaced…Yeah money what money, I might as well send my check to the hospital, doctor’s and pharmacy.  I have finally allowed my sister to help out with those; I have to update my info so she can have access to all the bills.  Thank-full UNC has finally got into the 21^st century allowing me to access appointments, make appointments, pay bills and see what was charged.  Got to figure out if it’s possible to cash in the life insurance policy, saw a brochure about it at the Cancer Hospital.

It is official that I just need to hang up eating any processed food from the grocery store or restaurants cause they seem to come right back up.  Thank-fully right now we have an aunt with a huge garden who also happens to freeze a lot of precooked delights and another with chickens galore.  Our goal is to have our own garden for veggies, chicken’s for eggs and meat, and actually the way it’s looking Carrie will be hunting and fishing.  Hopefully I will be able to crab I can tie the string to my arm…although it would have to be at dawn or dusk since I seem to be allergic to sun………   

It seems I am not the only family member having issues; this just hasn’t been the month for relatives that grew up in Humphreyville.  I have an Uncle up here at UNC fighting Cancer, another Uncle with RA like me himself having a flare from hell, then my cuz hanging out in the hospital in Wilmington trying to figure out where the hell is causing her pain.   Hoping the doc’s can find and fix the problem.

Rheumatoid Arthritis ugh...................

 There was Cancer, then Sjogren's now lets welcome to the party Rheumatoid Arthritis....ugh swelling no matter what I do rest, exercise. frustrating isn't the right adjective.   I have been forbidden to go outside since apparently I am photosensitive, yeah you know like in the movies when the vampires go outside and start burn....yep that is it..............Apparently not much to do since I am already on the medication available, had more blood test today, still got the scan on the first.   I have realized that my body apparently requires 10 to 12 hours sleep, then it takes about 4 hours for the medication to take affect so that leaves about 6 hours to do stuff, but after 3 of that the pain and swelling start up..........Below is some pictures of my feet, no need to know the left may be more swollen but the day isn't over the right side just takes a little longer.  I am damned if I do and damned if I don't, all the joints, ankle, toes, wrist, fingers, elbows, and shoulder's all getting in on the action, as if I didn't have enough on my plate.

What to do?

Just when I thought I was getting everything under control I was slapped with the latest disease.  When I was dx in 2010 with Sjogren’s the test result showed I had the RF aka Rheumatoid Factor.  The doctor said this doesn’t mean you will get it but it’s a possibility.   Should have known then with my luck, I would get it and what do you know, BAMMMMM.  First it was Raynaud’s flaring its head on a trip to Boston in the spring, and then the first sign of RA came after working the Raleigh Relays.  The Sunday after I awoke to severe pain I hadn’t felt since I had torn my ACL and tried to sleep with only Tylenol.  Then a few weeks later after the ACC Track & Field Championships it hit again this time worse, it wasn’t till I went to see my Oncologist did I realize how serious it was, the Resident was oh my.  Then my Rheumatologist was like why did you call me, my Oncologist knew why, I already had an appointment scheduled.  I knew it was good, I have gotten good at reading my Oncologist the sadness look on her face, and apparently I was in the middle of a major RA flare.  That brings to where we are today.

Why is it I have to get the extreme with everything, not just Breast Cancer, the aggressive kind that you can only treat with Chemo, oh and u inherited it, finally get it under control after 2 years.  It was after my 3 month scan in December of 2009 when I breathe a sigh of relief thinking yes back to normal.  Yeah right, strange things where brewing affecting several different areas, thank god for being assigned to a Oncologist that was Multi-Disciplinary instead of just breast, and her love for googling things like me.  She narrowed it down to an autoimmune, actually to 2 which both the Rheumatologist and Dermatologist agreed in, then the test.  I learned over the phone that I had Sjogren’s only thing I really heard where the dreaded words incurable but hey we can treat it.  It took another 1.5 years to get that half way under-control.

Now we are at another cross roads, yet another attack, each time something new is added it is worse then the previous.  I guess I was forewarned either last or 2 years back when my eye sensitivity acted up and I had to stay in complete darkness while wearing shades to watch TV.   Now I am breaking out from either the sunlight or heat, will not learn that until you guessed more test like I haven’t had enough already.  Bruises everywhere just appearing over night, purple splotch with purple/red dots on my leg near my knee, heavy legs, swollen knee’s, wrists, feet, ankles, hands, fingers really every damn thing.   They tell you to rest when swollen and to exercise to keep the joint loose, yeah guess what both those make mine WORSE.  I walk everything swells and hurts, I sit down pop them up oh Shit hurt like hell so what am I suppose to do?  Apparently my feet look like sausage according to Carrie.

A lot of things I just kind of ignored not complaining or pointing them out to the doctor’s cause if I did it would be real.   Insomnia, Fatigue, Memory Issue, Forgetfulness to put simple it is like having the Flu for the last 5 years, what people don’t understand is that I have little energy which a have to allocate to daily needs.  Currently all my energy during the day goes to work, and I can’t even do that for a whole day.  It can range from 3 to 10 and when I get home I am exhausted sometimes I fall asleep waking up in a few hours or the next day.  Life is speeding by outside, weekends allow for a little of Heidi time, trips to the Flea Market where I get my exercise walking around 2 to 3 hours window or I guess tent shopping.  Something that takes a normal person 1 hour to do, could take me a week. 

I will be honest I have tried my best to live in denial, like the position I was in when Mom was sick, Carrie is now in that role.  Like me she figured and began to prepare for change, I really don’t want face reality.  That means changes, paper work, sort a like given up, deep down I know it’s not giving up, nervous and stressed that somehow I want qualify or like others go round and round with the system.  Seriously don’t know what to do, what I do know is my body has thrown in the white towel.

I guess my body wanting to sleep during the day and awake at night was a warning sign to the impending flare that occurred over the weekend.  Then there was the bright light issue….hmmmm  I need to step back and do what I did when I was on Chemo, no alarms, listening to the body, waking when it wants, sleep when the eyes are heavy….ugh…….too much thinking to do.

Quality of Life

Going to sleep whenever the body likes, rolling around the bed without a care in the world, no clocks, no cares, rising from bed or the lazy boy whenever I care,

meds meds and more meds hopefully a combination that works is within reach, scans scans x rays and more scans, blood work, urine test and so many more just to make it day from day.  Daily struggle with fatigue, cognitive memory, pain, inflammation, aches like u have the flu but it doesn’t go away.   It can be a struggle just to make it thru a day, to the outside world you look normal but underneath those clothes are scars from several operations, hidden above the breast and below the collar are three little dots marking the port.  The port which basically poison is injected into the body to fight the cancer which for me was hereditary.

Welcome to the world of Cancer with Auto Innume Disorders on the side, your world rolves around doctor appoint 

Camping, Whitewater Rafting, Learning to Snowboard, Visiting England, France and Germany, fly to Japan just so I can go doll shopping a stopover to Korea and Hong Kong for some even more, than a stopover to  Hawaii, visit North Shore maybe learn how to surf, than California jump a train or car up the Ocean Hwy stopping off at beaches then Alcatraz, up to Washington and Alaska than back to Victoria Canada then over to Quebec, swing by Maine buy or rent a camper, off to  Philadelphia, Boston and New York, West Virginia for some camping and rafting, swing by Tennessee to Dollywood, Cherokee, on the way to Louisiana onto the air boats, and off to Florida to NASA then on to Disney and Universal and back on the way to NC for a while and then maybe visit the states we have not seen.

Scans

Bloodwork

Pains

Ache

Swelling-Literally lose the swelling lose 20 pounds

Fatigue no matter the amount of rest or the sleep you get your body still feels like it has been thru the ringer and finished off with a hit from a big mac

Sleepiness yawning, eye lids struggling to stay up yet can’t sleep

Forgetfulness damn keys always growing feet and walking off

Inflammation all over

Dry Eyes, gritty and burning

Dry Mouth, dry as the Sahara or a cotton ball

Teeth crumbling even with proper maintenance

When you think you have gotten under control and suddenly you have several days of limited to no pain you forget your limitations and overdo it sending your body into a tail spin.  Then you have to start all over again trying to get the pain under control in an attempt to live a normal life.  But what is normal?

There comes a time when you must let go of part of your dreams and make a change.  Family and friends are the most important as well as following other dreams one has.  Struggling to maintain what one had before nature decided to throw your life in disarray is admirable but there is a time when one must realize what is right for now and the future.  

The biggest thing I learned when this battle began was listening to my body when it said sleep I slept when it said eat I ate, when it said soak, I soaked, when it said nap, I napped.  Sometime after I reached NED (No evidence of disease) I relapsed into pre cancer thinking choosing to play the denial card acting as though I wasn’t Stage IV and resuming my life acting as though my body hadn’t been thru the ringer.  2 years of Chemo, a dozen surgeries, a month of rads, a two day stay in the hospital with an infection, then a dx of a brutal autoimmune disorder.  I resumed my seven day a week almost 24 hour job, that I loved, trying to bury deep the fact of my cancer an autoimmune.  For a while everything was hunky dory, but all good things come to an end.

Struggling to sleep, struggling to wake, walking thru life in a daze, a simply task of driving 30 minutes up the road is exhausting resulting a need for a nap, but there is no time for one, and if there was a little nagging voice want allow a nap afraid once the eye’s close a day could past, and u have some important to do shortly.  One day it’s a knee aching, the next day it can be all, your body, pains that in order to relive means  there is no way one can go to work because the amount of meds it takes to relieve the pain means a nap is order can’t work if your asleep or sleepy.  Taking medications to get a little time to live life and to pay medical bills, the little time it provides has to be divided into work, recreation, shopping, family, rest and sleep.   The frustrating thing is right now I really don’t have time for very much work and sleep Monday thru Friday with little or no time for anything else.  The weekend is an escape where I literally block out the world and attempt to rest and relax, no time for anything else because sometimes I have to sleep all day to recover from working which for over six months has even been a 40 hour week the majority of the time.   Struggle isn’t quite the word for it the doctors are running test changing medications trying to improve my quality of life which even my Oncologist called very poor this year.  

When I think take 2 steps forward I am smacked 6 spaces back which is frustrating. Especially when your use to be able to leave on a Friday to spend the week on the coast like you have always done since the first trip up to NC State Campus in the Summer of 1996, even when on chemo in 2008 and 2009 you were able to escape and come back refresh.  Yeah that ship has long since sailed, I literally needed a vacation from a vacation.  Several people have mentioned taking some time off to get the medications right and improve the quality of life.  I would be lying if I said I had thought about to tell you the truth it has always been on the board but as a last resort.  For a long time I saw at as given in or declaring defeat to the cancer and autoimmune but after seeing one after another of ladies dx before and after me be fine and suddenly they are gone.

I fell D day may be coming faster than I anticipated, each day the pain increases, the joints are aching, bruises appearing out of no were, swollen hands, inflammation, among so many other things.  It is time to roll the dice this is year 5 which could be good or bad.  The 5^th year is when my mom’s cancer took the upper hand.  In a few weeks I will learn which and how much Chemo I will have be it the Abraxane to fight my Triple Negative or a low dose of Methoraxte in a last ditch med to get my Sjogren’s and Rheumatoid under control, I seem to be plowing thru meds desperately trying to find something to relieve the pain, on the bright side it’s the auto immune and not the cancer like some many of my Cancer Sisters who are themselves plowing thru chemos in an attempt to stop the cancer from eating there life away.

Strange things go bump in the Night

I believe it is time to install some camera's!!!!  Why you ask?  Cause strange things are afoot.  First things are thrown across Carrie's room upstairs, problem is YEAH she wasn't here!!!!  An action figure more specifically Mr. Donatello the teenage mutant ninja turtles does a flip off the shelf 3 levels up on my desk and lands on his feet on the desktop and the railroad spike which was on the other side of the desk ends up on the floor below him, Mind u both Carrie and I where up stairs doing this epsiode. I even shook the desk jumped up and down on the stairs and even bloped in the computer chair um nothing even moved....hmmmmmmmmmmmmmm..

Barbie, Ken and the Joes moving locations around the room, the fridge door left open in one of the kitchen displays, toys strung around and various things moved, then there was dolls moving from one room to another in the  dollhouse, and foot steps in any empty apartment above us...Then..................

Then we have unexplained markings scratches, bruises and skin peeling........I go to bed and when I awake I have a bruise, scratch or other strange markings and I don't remember hitting anything.....At this point I can hear my coworker laughing cause I usually forget alot and our student would second that since he is always looking for my keys but back to the topic at hand.   I go to the Dr. R and he looks at my arms how did you get the bruises, What bruises I look down...ummm beats me, I try to think, don't remember hitting anything and it kinda looks like bruises at located where some would grab you...then I was changing shirts to go shopping and I hit my side ouch.....so I look down Holy Shit where in the Hell did that come from a bruise the size of a lacrosse ball right above my hip..really...that is basically what my Onc said.  She to asked where the burises was coming from, I was like doc I have tried to duublicate them I knock my right arm purpsely on the door frame and handle next no bruise, but two days later I have a dime bruise on top of my left fore arm.  Now some of the brusing could be do to the fact of low White and Red Blood count along with low plaleets, like barely over the minimum kinda of thing. Dr. C was like its from the medicine, Dr. R gave...and I in my head is like um dude its always low, been low since I stoped chemo....Dr, R can't explain that is why he ran an Aids/Hiv test to rule out (which he did) in an attempt to explain why those counts are still low..........so in his book its the auto immune disease causing...really he has no freaking clue.....


That brings me to today, I get out of my car at work take four steps and then the light fliped on damn't I need my work keys, look down at my hand to press the unlock the door button there on my left index finger what the HELL...you know when you get burned or have a blister that pops leaving new skin and the a jagged area surroned in with the old skin...or when u are pleeing your skin after your white ass fail asleep outside and you now look like a crab...yeah that look.........The finger was fine the day before.......

so what the Hell is going on?  Do I got a Ghost, am I going crazy or do I have a secret life with a split personality?  I bring up the secret life because several people claimed to have seen me at such places as the mall, parties, and events I knew I didn't go to but they swore on the bible it was me....yet that was the days of new cell phones, facebook, instagram, flickr or twitter....oh and the now defunk myspace (sorry if you still use it)......

The one thing we do know is I ain't right, I am half ass backwards, if something is suppose to do one thing like a medicine it does the opposite for me.  For example they give you a bunch of pre-meds before chemo one of them anti-nausea medicine you take before and after chemo, yeah it made me throw up, so Heidi didn't use any pre-meds.......Then you have caffeine for most people it makes them hyper for me it calms me, and water, yes water makes me hyper....I have done several studies and have proven this fact to several people they just shook there head u weriod.

Frustration yearning for releif or a holiday from pain.........

I have got these medical issues under control I am not sure how much more my body and mind can take the yo-yo affect that it is going on.  We get one thing under a control then either something else rear’s its ugly head or the side effects of the medication is worse then the pain from the ailment.

Today I did a lot more than I have had in a while by 6pm today I was struggling to keep my eyes open at 7pm I decided to take a quick nap.  That nap end at midnight, when I woke up to painful joints fingers, hands, wrist, elbows, knee’s, ankle’s, toes and spine.  I got up to stretch, got a glass of water, still the pain radiated, took a pain med then crawled back in bed, no change.  I decided to follow the advice of several websites about Sjogren’s not to lay in bed if you can’t sleep but to get up, so I rolled out of bed and went into the den at 1am messed around with the computer played with some toys for an hour and went back to bed.   Yeah not happening tried to change positions no luck, I can really only lay on my back, I tried stomach and sides but everything goes numb fast, laying on the back does as well but not as fast or bad as the other three ways.  I went ahead and took my other pain med that I am suppose to take at 9ish at 330 it is slowly kicking in and the meds are finally making me sleepy.  I am hoping to get a few more hours of shut eye, I have a lot that needs to get accomplished at work in the morning and I need my mind clear and able to concentrate on the task at hand.

I have been doing more research to create a better diet to hopefully help curb the pain and inflammation that is ravaging my body head to toe.  A lot of the foods I have been eating are actually suggested in the several different articles I have come across.  Trying hard to keep the stress down as I mark down the days of the CT Scan to see which meds I will be on for August a low dose Chemo drug methotrexate that is supposed to help control the RA and Sjogren’s or if I go back on more than likely Abraxane the last chemo I was on that helped keep me NED (no evidence of disease).  My doctors are working tirelessly trying to get my quality of life from poor (crappy) to good, at this point I will even take fair. 

It is hard to explain to people because on the outside I look normal but that is far from the truth.  As the say the apple doesn’t fall far from the tree, many had no clue my mom was Stage IV when she passed.  It was a shock to many, because she liked to keep things to herself and on the outside looked and act healthy around people, but that was far from the truth.  Like my mom I want to do things on my own not leaning on or allowing other’s to assist although I have allowed my sister to do things, shocking I know.  I feel if I ask for help I am giving into the disease and it has won but that thinking which got me thru round 1 in 08 with the cancer, is not doing so well against the latest battle.  And unlike my mother my health is far more complicated and is challenging to the doctor’s.

It is frustrating and hard to explain to people what it feels like to have your immune system that is supposed to help fight off sickness is fighting and attacking healthy cells.  My teeth are literally crumbling due to the severe dry mouth as my glands have been pretty much destroyed, as has the tear ducts in my eyes which are now operating at like 23%.  My joints ache sometimes one; many or all the muscles ache, and fatigue ravage my body.  I could sleep 10 hours but when I wake the body is stiff, the joints ache it takes hours for the body to loosen but the fatigue lingers hampering whatever plans I had.  A fog often clouds my mind, making it harder to focus and having a memory that is not as sharp as it use to be.  For a while my creativeness and organization was adverse affected from the disease and meds but the predisone has given that back to me for now.  

A simple trip to the grocery store can wipe out all energy I have for the day.  I literally have to map out what I need to get done in a day something that seems menial or easy to the average person for me can be time consuming and hard for me.  Even climbing the stairs is a task in its self.  There is so much I want to do but I literately can’t and it aggravates the crap out of me.   Slowly starting with my chemo I have finally let some family help, by coming with me but there is sometimes I just want to do it myself.   What many don’t understand and some do that in order to recharge I like to close myself out and not think about anything but what I am doing playing on the computer, working my hobbies or watching tv.  I do like mingle with family and friends but I also like solitude.  I guess it comes from being the youngest in the family, while everyone was at school I was the only one home, luckily I was creative and had no issues playing by myself or reading the entire Encyclopedia Britannica in the closet.  Yes I actually read the encyclopedia A thru Z, I was the kid who got her license and take a guess at what place I drove to the most…..the County Library I think I hold the record for most books checked out, back then it was the only place that you can rent VHS movies. 

off to see if I can get a few more winks since the pain has been corralled for the time being.