Cold Weather Stinks!

*******First let me say as always...I am not a Doctor nor do I play one on TV but this information herein is based on my MANY years struggling with back issues.  ALWAYS, ALWAYS seek homeopathic or medical advise from a trained person.  I am just sharing with you what I have tried and what is currently going on with me.  There are many wonderful practitioners out there.  Perhaps, you have been refereed to this site by one.  They have the information on latest treatments and also know YOU better than I.  I do however, hope that you can find some comfort and laughs in my words and know you are not alone*********

So many times growing up I heard  "I can feel the cold coming in my bones" to which I laughed.  I should have never ever laughed. Ha!  It in fact is true. Who knew?  I always feel so much worse when it is cold.  I seems like nothing wants to move or work right in addition you get nifty new levels to the ever present nerve damage left overs called Neuropathy.  What little jewel is that you may ask...well I will tell you it sucks.  It is basically nerve damage and you can get it for all kinds of reasons.  Mine is from the damage in my spine. Neuropathy means nerve damage in the peripheral nervous system not the main cord itself. The way this feels is like when you hand or foot falls asleep.  It is not  the dead dead kind of asleep but right as it starts to.  To me things feel "thick" like there is a super secret invisible layer over your skin ad it feels "not normal" but can progress to total numbness. Like when my leg is there one minute then the next it is totally numb and I fall on my face.  Which, I might add is pretty funny but usually hurts like hell. I do laugh though because well...its funny.

I asked one of my many Docs once or twice as time has worn on and it turns out I actually am not crazy and this does actually have a name.

It is called Cold Allodynia. It is real and it really is painful.  Here is some Wiki info for you.

Allodynia (Ancient Greek άλλος állos "other" and οδύνη odúnē "pain") is a pain due to a stimulus which does not normally provoke pain.^[1] Temperature or physical stimuli can provoke allodynia, (which may feel like a burning sensation),^[2] and it often occurs after injury to a site. Allodynia is different from hyperalgesia, an extreme, exaggerated reaction to a stimulus which is normally painful.

The thing is, for some people even a light touch can elicit a great deal of pain.  Even a well meaning hug.  For me, it is an increase of what I normally feel as a sharp burning pain.  What I affectionately call "Hot Fire Pokers".  Now does that sound lovely or what?  It is like someone places a brand spakin new iron fire poker in the fireplace and forgot about it.  Then to their surprise (and yours) once they realized it was in there, they decided they should poke you with it right in your lower back and hold it there a second or two. FUN FUN FUN!

When it is cold this gets worse.  I take medication for this pain called Gabapentin and the dose goes up in the winter.  It is some crazy stuff.  I am in now way a doctor or have gone to medical school.  I do however, know about myself and that is what I speak of here in hopes to help others in my shoes or back brace whichever you prefer.  Now, this drug has helped a lot.  I will list out all the crap I take in a different post but this does help with the Neuro pain and without it I would be in some major trouble.  As the chill fills the air outside I try to stay warm.  I keep close to the fire and have my heating pad going most of the day and night. Keeping it warm helps a lot. When I go outside I try to bundle up and at times I have used those stick on heating pads which they say work for 8 hours.  THEY LIE!  No way have I had one last that long.  They do help though.

The best advise is above KEEP WARM!  Try to plan your activities so that you can be inside more than out but being in the fresh air does wonders.  So don't avoid it just plan for it.  You can be a normal person with modification.  Exercise is good and getting out and doing things, even if you have to cut them short is better than doing nothing.  I take the dogs out and walk around as much as I can.  Sometimes the cold just hurts too much,

Another thing most people forget is your feet!  I have some weird thing going on not one single Doc can explain.  My legs turn purple.  Like dead people purple.  To this day the only explanation was compression on my veins in the spinal cord.  This makes my feet super cold.  More so than normal and way worse in the winter.  Those puppies are super important to look after.  I hate things on my feet.  I am and always will be a barefoot girl...however, in winter I don the fuzzy socks and slippers.  My super amazing grandmother (Nana) got me some warm booties I call my Nana Boots and they are a mainstay in winter.  They can be worn inside and out and are super fuzzy and warm.  They along with some knitted booties with soft leather soles that my bestest friend Angie got me help me survive the winter.  Keep your feet warm!

Well kiddies my spine is screaming at me so I need to go lay on my side.  I sat up as long as I could and just for you.  Do you feel special?  Have a lovely holiday and keep warm.  

See ya soon - Chel

Frustrations with Treatment...or lack of one that works.

Frustrations abound!

As someone with horrible pain and extremely short patience I write this in hopes to help someone…as always.  This is a much condensed version of a future endeavor.

My experience with this has run the gambit of not only methods but emotions.  My journey began without a choice.  I could not walk.  I was a single mother of two small kids.  It had to be done, and done fast.  So, without the luxury and flexibility  of “time” I went through with the fusion at L 1-2.  Which, I am now told was the start of many surgical procedures.  It solved a much needed need and I was able to go back to work and play with my kids but it took 3 months.  Time went on (3 years to be exact) and I began having pain again.  JOY!  I went through tons of physical therapy, water therapy (which I loved best – and still do).  I tired many herbal remedies from better vitamins, tea and pain aids all natural.  Nothing worked.  It turns out I have a few things battling against me. 

Scoliosis - Scoliosis is a lovely condition that causes an abnormal curvature of the spine. Scoliosis is not something limited to one group of people.  It is an equal opportunity body wrecker and can affect children and adults, and may have different treatments.  It is split into two categories. Rotation of the spine or what I call “Twist and Shout” or “The Bends” meaning a lateral curve one way or the other and in some cases both.  Eeeek!

Spinal Stenosis – “the Skinny of It” a condition of narrowing of the spinal canal (the space surrounding the spinal cord and or the spinal nerves).  When these super important nerves are compressed you get weakness and numbness in your limbs. FUN!

Degenerative Disk Disease – This is the deterioration of the disks, as you age they become more fragile.  Some feel it occurs in part due to the disc becoming dehydrated if you can believe that.  Your back is thirsty!  It basically loses its ability to act as a cushion or shock absorber.  I only heard this recently. 

It became clear that yet another surgery loomed in my future. Again, I tired herbal stuff first Willow Bark, Glucoimine (sp) you name it.  I then opted for Cortisone Injections which let me tell you, after the Doc got the right spot was fantastic!  I felt bullet proof and even could do Kart Wheels in the yard.  It was great but it is some really bad stuff.  You can only have 5 a year from what my Doc told me.  I ended up begging for more.  He said most people ask for narcotics and you beg for an “oil change” as I called it.  I felt great.  However, after my seventh one he said no.  So, this time we went with a Laminectomy.  They cut a “window” out and take off the pressure and Junk (yes, that is the technical term – ok not really).  This was great and my recovery was only 3 weeks.  MUCH MUCH better than a fusion any day. 

Time went on and the pain came again.  In the middle I enjoyed what I can now only barely remember as a time without pain and when it felt bad I took some Advil and was fine.  Then with more injections, changing diet, therapy you name it…here came Fusion number two at L 4-5.  That sucked.  I was great for 3 years.  Now, I need another one. GREAT!  I thought the previous surgery was no good and when I went back they said it was actually L3 that was the problem.  In addition to a new thing in the mix. Enter….Sciatica!

Sciatica - this  is a particular fun type of lower back pain , or leg and back pain that comes from injury (I cracked my hip a few years back (NO!  I was not wearing my bubble wrap suit or my helmet) or pressure on your sciatic nerve.  So, I had my nerves microwaved!  ZAP!  That has been great and at Seven months I can feel them coming back. NOT COOL NERVES, NOT COOL….just die already.  This was called a Rhizotomy.  However, before that I was hypnotized, past life regressed in addition to using a product called Zeal (which actually did reduce the amount of Anti-Inflammatories I was ingesting…which can you guess what THAT caused?  An Ulcer! So, I am super thankful for the Zeal which is also for weight loss (more on that later). 

At last we come to some frustrations in treatment.  No doctor here will operate or see me really because I have so much damage and so many different surgeries.  Can you believe that?  NO ONE WILL HELP ME.  I have to go out of state.  Crazy right?  Like I enjoy this crap and I loved having different surgeons.  Whatever!  Now, I am trying to find someone to help me here so I do not have to stay for months in Texas or travel hours away from home for a doctor visit.  At this point I am willing to do it to get some relief and have my life back.  I don’t know call me crazy but the meds I have to take are NOT kind to my liver and no way do I want to get that replaced….I like mine.  It is cute!  This sucks!  So join me on the excursion will you?  Do you have questions because now I am pretty much the expert on all things spine.   

Since it is 4:18 am I am going to try to lay down.  Wish me luck kiddies.

Extra Bonus Update -

As if I did not have enough on my plate with my spine.  I am adding this becasue I may be out of touch for a bit.  I have tons of new helpful info for those with (or caring for) someone like me Spineless!  hehehe  It is 5:53 am and I can't sleep (as usual - only this time it is nerves not just a mean and nasty spine).  I swear God thinks my name is Jobe (sp) or I am the ultimate bad ass.  I can't decide which it is.

So, what is up with me NOW you have asked. Here is the low down. It is long but the short version is I NEED prayers, love, support, good vibes and super juju – my girls stuff is sick.

Some people may find this odd I am broadcasting like this but…since the day I was born I was a teaching prop for Doctors. Ask mama. I figure if I am going to go through this someone has to learn something from it. Your lesson today ladies GET CHECK EVERY YEAR FOR ALL YOUR GIRLIE ISSUES –PERIOD! DO THOSE SELF BREST EXAMS EVERY SINGLE MONTH – YOU KNOW THOSE PUPPIES BETTER THAN ANYONE AND YOU KNOW WHAT IS RIGHT AND WHAT IS NOT. NO EXCEPTIONS! (fyi so people don’t get their panties tied in knots there is no BOLD on FB so I have to CAP it – I am not yelling) I had to talk with family first and now that we have settled in with the possibilities of this journey I am filling you in. Please understand…I have been through the ringer with my back. Some days, I can’t stand or walk long at all much less sit. Laying on my side is about it. I do a little around the house and lay down in between tasks. You all know how hard this is for me though I try really hard not to let the pain bleed through. I mask my worry with horribly inappropriate jokes and laughter. That is how I roll.

Ok to the meat and taters of it. I went for my yearly oil change and check under the preverbal girlie hood. The doc is new to me I might add and I am well, tricky at best. So, she found a tumor on my uterus. A mass of some kind on my ovary. Then two lumps in my left breast. Yay the trifecta! I am scared to death mind you. I go home fearing the worst of course. I have to have a diagnostic mammogram (more in depth) if it is bad they will do a sonogram then go from there. I also had to have an internal sonogram of uterus and ovaries which they did that week as well. I swear all I do is see doctors damnit.

The internal was done and if all was well a nurse would call me –if bad the Dr calls. So, I wait. We all wait. It sucks. I had my support crew with me (sitting beside me not at the main stage) and we watched my innards on a big screen TV super cool! They did some blood work and more waiting. It stinks cause she was kinda a hard arse and would not let me take pics. I did get pics of other stuff. HA! See, all you guys who complain about my pics I take them of EVERYTHING!

My breast appointment was rushed in (which adds to the fear factor) and they proceed to smash and mash me. Fun stuff – a man totally invented this test. Then the nice lady came in and said “we need to do a sonogram honey” Grrrrrrrreat! I am already wondering how I would look with a Mohawk (I am totally doing that by the way if this goes south so get over it). They do a sono and the Doc comes in and re-does it….Grrrrreat. We sit down and he shows me the mamo. I have very little fatty tissue at the top and bottom, the rest is all thick breast tissue. I have dumb breasts (they need dunce hats – hey I can have Madonna cones) what that really means is I have dense (get it dumb breast dense get it – come on that is funny, only me) breast tissue. The main breast area is totally white. The Doc says “here is the problem”…and pointed to the thick white area, saying “guess what cancer looks like?” Me (with my under achieving breasts) “uh….I don’t know….black?” He laughs…”no hun white, so you see my problem is I can’t tell because I can’t see, you need a special test and genetic counseling to determine where we go from here.” I called Taylor in to see and hear the rest. She is going to be one hell of a nurse with all the info she gets off me for sure. She probably should get extra credit for having me as a mom! I am awaiting the appointment on that which was delayed due to the other issue.

I get a call….from the Dr. himself and he wants to see me. Grrrrrreat! We go in and he says I have a mass on my Ovary the size of a grapefruit/softball. No wonder my tummy sticks out and hurts. He wants to remove it and my right ovary and tube. Fun stuff. We plan the surgery for Oct 17th.

Back home we just are still reeling but feel ok about the mamo I mean I know my puppies and they feel like they always do. YES, I CHECK THE ALL THE TIME most of all after being beside my Smelly. The phone rings and it is guess who? THE DOCTOR! It seems my blood work is extremely elevated and he does not feel comfortable doing the surgery and he refers me to…wait for it….an Oncologist! Wooooo hoooooo! Crying, I go over everything with my family yet again. The hits keep on coming!

We go to the Oncologist (who looks like he should work at Home Depot) but is supposed to be the best in the south. Dr. Ivy. He explains they will go in Da Vinci style and remove the tube and ovary. While I am under they will biopsy it and other areas and if they find cancer they will remove everything. My surgery is sometime Monday the 7th. So, as stated in line one of my manifesto here…I need some help. A lot of help. I NEED prayers, love, support, good vibes and super juju – my girl stuff is sick. I will keep you posted but please bare with me. My head is not in the game. Heck, it is not even in the ballpark right now. If I have not called you back or I have not kept up with things it is because I just can’t right now. I am on overload. I am so thankful to my supporters. I have some amazing people in my life and family is about more than blood. I am blessed and thankful for everything. For the rain that came yesterday while the sun was out. To the smile on my daughters face. To the movie time with my sweetie and nighttime phone calls from my son. I am just thankful for everything and I know nothing is guaranteed and I try really hard daily to see the good in things. Thank you in advance. Light love healing and happiness. Love, Chel

YOU can DOOOOOOOOO it Waterboy!

THINGS YOU CAN DO AND HOW:  Today kiddies, we are going to show how you can do something and not nothing.  :-) I can't sit, not long anyway. Never have been able too. ADHD overload right here folks.  So, having this hella horrible spine thing makes life uh...challenging, yeah that's it challenging! That's a good word for it! The spine just adds to the mix.  Standing a lot becomes very difficult as well so, the lesser of two evils is sit a bit but get it done as efficiently as possible and on to a better place to be more comfy with a nice fat ice pack!

So, laundry.  Seems hard right?  I mean, how can a handicapped person do their own laundry, much less a family of four?  Well, depending on your set up it can be easy.  Keep in mind everything takes twice (if not more) as long.  Just accept it.  It is what it is. What you use to get done in a day is not happening.  So, suck it up and get busy.  Explain to your family that you want to help and not put everything back on them but you do need help.  Once they see that you are safe and able they will be so proud of you.  Even better....YOU will be proud of you!

So for me, I can't do many things but this girl can rock out some laundry.  Let's start with the basic tools you need aside from detergent and super smelly good fabric stuff.  As I have mentioned, a grabber is a must and I love me some grabber.  They come in MANY styles but mine is THE BEST!  I got mine after my first operation in 2000! The suction cup model I got after surgery number 2 did not even last 6 months.  I use the grabber all the time for so many things I would be lost without her.  Her name is Sadie.

My sweet Sadie is a featherlight and can be found online at Amazon (see below)

http://www.amazon.com/Duro-Med-Aluminum-Reacher-Magnetic-Tip/dp/B0009STNME/ref=sr_1_cc_1?s=aps&ie=UTF8&qid=1380611921&sr=1-1-catcorr&keywords=reacher+grabber%2C+featherlite

She has many features:

A little magnet (which I have used a lot).
A little peg (that is super fantastic to put on socks with)
A hand trigger that works the grabber end (do NOT attempt to pick up a soda can with this model - it punctures it and it sprays all over before you can drop it and knock it out of the way - HA) Or you can get the suction cup kind if you pick up a lot of soda cans!

Such a simple design but works better than any others out there but there are many so find one that fits you and your needs!

This is another option:

Amazon rules!

http://www.amazon.com/Mabis-Reach-Extender-Magnetic-640-1762-0000/dp/B0046IMSOS/ref=sr_1_10?s=home-garden&ie=UTF8&qid=1380613119&sr=1-10&keywords=reacher+grabber


Now, a stool is buneo nacho.  You need to be able to sit to sort.  I have a small stool I stole from my daughters art table.  Shhhhhhh!  Don't tell.  Nothing crazy, just a stool but any place to sit will work.  Again, Amazon has tons and delivery is easy.  This beauty from Amazon listed below folds up for easy storage.  Mine sadly does not fold up.  I use my stool in the kitchen to cook as well.

http://www.amazon.com/TG-82-0827-24-Inch-Cushioned-Folding/dp/B006H0XEIW/ref=sr_1_2?s=home-garden&ie=UTF8&qid=1380611639&sr=1-2&keywords=stool

This is just a simple one but you can go all out - even get wheels....wheels for me might be well, trouble....or a whole lot of fun! ;-)  My family tells me I need a suit made of bubble wrap and a helmet but whatever!  you think Amazon sells bubble wrap suits - let's check...nope :-( Sadness.  Oh well.

My DREAM stool....maybe Santa will see this.  Santa, you can get this on Amazon too and you won't have to cram it in your sleigh! 

http://www.amazon.com/Boss-B16245-BK-Caressoft-Medical-Drafting/dp/B004I3ZRQM/ref=sr_1_6?s=home-garden&ie=UTF8&qid=1380611639&sr=1-6&keywords=stool

Something like this gives plenty of much needed back support but for me it does not take too long so I am in and out.  If you have piles and piles this might be the better way to go.

Next, you need a pushable basket!  These are soooooo cool!  Right now, I have someone carry the standard laundry basket for me but would I like one?  Ooooooh yeah!  Uh....Santa?  They have other uses too groceries or just moving things you need moved.

Amazon (of course)  

http://www.amazon.com/Cart-Wheel-Jumbo-Shopping-Laundry/dp/B0019TWSMO/ref=sr_1_3?s=home-garden&ie=UTF8&qid=1380612657&sr=1-3&keywords=laundry+cart+with+wheels

But if you want to go all fancy....you can get one with a hanger but, I have yet to find one with a big enough basket to eliminate muli-trips. 

 

http://www.amazon.com/Organize-It-All-Laundry-17167W-1/dp/B004YL2EDW/ref=sr_1_18?s=home-garden&ie=UTF8&qid=1380612657&sr=1-18&keywords=laundry+cart+with+wheels

Now that you know what you need....see how I do it.  Cause this my friends, is how I roll.  I have someone dump out the laundry on the floor.  I sort my little cripple heart out (yeah, I said it and I CAN because I AM so don't get your undies in a knot). You can make all kinds of games out of sorting.  Flinging things with the Grabber Ten Thousand (aka Sexy Sadie) is fun.

Then when you are done use a cart or child labor whichever you prefer and bring it to the "folding station" (aka laundry board set way low) as shown below! Notice the pillow for extra comfort. :-)

Viola! Super laundry challenge accepted and conquered!  Level up!  The key is modification.  You CAN do stuff as I have said, it just takes some creativity and the want to not sit on your butt and be useless.

Now get out there and get that laundry done! 

RANT O RAMA!

RANTS - Not for the faint of heart. Don't screw with the disabled.  We are not totally helpless and some of us can still kick your arse (we may meet you in the ER after but we still won't take your crap and you NEVER know which one of us you will get.  Maybe, someone with PTSD or a mental condition. So be very very careful!  Also, some of us have some mean back up.  ;-)

NOTE*** Now and then you just have to be more than honest.  Sometimes, it is not so bad other times BRUTAL.  People complain when I use caps, thinking I am yelling.  Well, note to those: when you do not have the ability to use Bold or Underline or Italics, you work with what you have.  Or maybe you are in a rush and just do it for emphasis.  Here in this lovely blog, I have the benefit of all those fancy items so I will use them.  If I use caps here - yes, I am yelling.  Thank you for your attention.  On with the show.

One thing I hate most, (well there are a few) but let's start with this.  People on disability who CAN work.  I hate that.  FYI, so does the rest of the working world of tax payers!  They sit and watch TV all day, get fat (because they don't have Zeal - http://eurekasprings.zealforlife.com) and suck off the system because they are LAZY!  Here I am, wanting to go to work more than you know and I can't because I can't sit for more than 30 min at a time, forget about standing.  I have to adjust and lay on my side etc. There are so many people in my area that just make me sick.  I worked all my life.  When I was really small (under legal working age) I swept at the shop.  I helped Mrs, Pat file things and got her coffee.  Then I worked while in High School and never stopped until forced.  To spite having three.  Count em, THREE major spinal surgeries. Everyone told me over and over, get on disability.  I refused. Get off your lazy butts and go back to work.  Don't make others pay for you to sit on your arse and get fat.  I fully intend to go back to work once I am fixed.  Being here all day stinks.  I have no outside contact with the world.  No watercooler gab or a drink after work with your co-workers.  NOTHING!  I am so thankful Taylor is here.  She keeps me sane (ish).  Stop sucking off the system and people who actually contribute!  It is enough!

Next, we have the people who look at you like you have four heads and tail when you park in a handicap spot in a nice car.  Excuse me?  Handicapped people do not have the right to ride or drive a nice car?  REALLY?  Did you ever think that MAYBE we worked for it and made excellent money BEFORE we got damaged?  Or MAYBE we actually worked and SAVED money?  I don't know call me crazy but I DID!

The rolley car carts at Wal-Mart.  See, I can not walk far.  I need them.  Most of all when I shop once a month (I get a lot, my kids like to eat).  People look at me like I am playing or taking a cart that someone might actually need....GUESS WHAT?  I NEED IT so back the hell off!  I swear next time I get the "eye" I am gonna go off and Heaven help that poor soul.

For now that is all I have encountered as problems with my disability.  Sad really, how people treat each other.  Personally, I could care less but the fight I have is for others.  NO ONE  wants to be disabled or deserves the evil eye (ok some people do but that should have nothing to do with anything related to a disability).  You have no idea how hard their life might actually be.  You have no idea how your actions affect them.  That look you give them may be the last nail in their coffin.  Chill out.  Worry about yourself.  Be kind.  It is not hard to smile or to help or to just not be a whack off.  Remember, the world is ugly. Don't add to it.  Be considerate, compassionate, caring and most of all HUMAN!

Have a wonderful day - end of RANT - thank you!

Excellent yet difficult day.

Hello good and faithful Blog readers!

Today was amazing on one hand and super difficult on the other.  My son was coming home for the weekend from college.  I did my usual light pick up and washed his sheets and comfoter so he would be perfectly at home...at home.

As I have mentioned, things are more difficult for me and it takes me longer but I can get some things done on my own.  Tay helped me by making his bed (it is very difficult to bend across since there is a wall there.) you can't walk around it. After all was set. I asked him what he would like for dinner.  I wanted him to have whatever he wanted and to be happy to be home, so I started cooking.  I use a chair most of the time. A rolly office type chair works great for me since I have a linoleum floor in the kitchen.  Sometimes, I use a stool.  You can still do things and not feel quiet so worthless, you just have to modify how you do it.  I will tell you up front, even with all my aids to help I am hurting pretty bad right now.  I am in my eternal spot on the couch, legs up 4 pillows and my trusty heating pad.  I want to sleep but hurting changes everything so I wanted to write it all out now while I am feeling it...just for you!  Feel special!

He wanted chicken, green beans and masted taters.  I also made a patented "stuff" recipe Jeff once taught me (kidding on the patent part - but it should be) for desert.  The process of dinner takes a long time when you have to do things in a handicap fashion.  However, it all got done.  I have to sit and lean over to cut all the yucky fat off the chicken and that really strains your lower back.  My suggestion to those who can would be to have a moveable island that is the height you need while sitting.  I don't have much counter space but even that is too high for me.  Little things like making dinner are such a challenge.  Most would not think so.  I mean it is just dinner right?  For those of us in this condition it is really hard.  I do love to cook so it is one thing I fight to hold onto.  However, when you are done, you are toast.  I have a really hard time after I cook but keep it to myself as best I can.  They see me walking funny or going to sit down with ice or heat but I don't think it really sinks in.  Sure, they have all had back pain at one point or another.  Only mine is a million times more intense and never leaves me.  We all forget exactly how bad it was after it has been a while.  I don't blame them.  Not at all, but it is frustrating to not have the words to be able to get the point across. Or if they have never felt what you feel. Sometimes, after I am done I go take a blazing hot bath with Epson salts to help the muscles that strain to compensate for my back.  Little things, tiny and minimal things hurt.  Those small hurts get together and say "hey, let's party" reeking havoc on all that is left of you.

Let's face it, I am getting worse.  I don't like the idea of more surgery but when you have tried everything....and I do mean everything.  I have even gone to hypnotherapy.  Ate, drank every herb known to man.  Thought of the "white healing light." Even had my nerves microwaved to take the edge off of just one part of my problem...you name it.  I will keep trying.  Someone tells me something and I save for it and try it out. I want to get better!!! You get so worn down.  Not only with failed attempts but the huge physician bills and your checking account permanently attached to the largest Hoover vac on the planet.  I worry constantly, over my health, my family, my money (or lack of) it just fills you with such distress.  I am tired.

Normally, I am happy and smiling, ready for whatever comes my way.  These days I dread each day.  When I do sleep...I want to stay that way.  I am just being honest.  You will not find fluff here folks.  I am depressed and alone to spite those around me who love me.  You get locked inside yourself.  Something so simple as dinner can wipe you out.  If I say anything, my family will take that chore on as well as the countless others and end up (even though they don't mean to) being bitter.  No one wants that.  Most of all me.  I want to do things for myself, my way.  As it stands, I have rules.  I can't even go to the horses alone.  I understand.  I really do but wow.  I just want my life back.

Me taking the time to write this, is at least one way I can maybe help someone else.  I can maybe help the caregiver know the real truth.  What the person you are caring for does not tell you because they don't want to scare you or make you feel bad when you ask too much of us.  The way we feel is more than awful.  My whole life has been a teaching experience for others.  I am so not kidding.  While I do my best to have a positive attitude, to smile, laugh and be the goofy gabber I am, it is so hard.  So, why should this be any different?  It is okay, I guess but a little break would be nice.  If you are like me, I want you to see what your caregiver goes through as well.  It affects so much.  We have got to work together.  To be honest, but in a loving way.  It is so easy for feelings to get hurt or things to be misunderstood.  This is all I know to do at this point.

This simply can not be for nothing. 

Lessons In Pain

This week has been busy already.  The weeks before as well so I am sorry I am a bit behind.  Travis, my son just started college at the University of Arkansas.  Getting him ready, as well as myself has been a challenge.  We did it and he is very happy.  Happier than I have ever seen him and that makes me happy.  However, I miss him like crazy.  When you hurt every second of every day, little things seem to pile on you like heavy bricks.  There you lie buried underneath it all wondering when will be the day the pain ends or the pain ends you.  Either seem welcome and that is a bit of a worry.  My reaction to my sons move made me think that this is something that should be written about so here goes.

Pain is a strange monster.  It changes everything!  Who you are, how you feel and what you will evolve to.  I have been told at the height of my pain I am...mean.  Most who know me, know I can be though I fight it constantly.  When people see you, they feel sympathy simply because you hurt.  They don't take into consideration the depth of your pain or your ability to deal with it.  If you are irritable, most people don't think that the battle you are fighting so desperately actually has more than one part.  Yes, it hurts.  It is a hurt nothing can compare to and I have some glorious accidents.  I am constantly told I need a helmet or a bubble wrap suit.  I know what I am talking about when I talk about pain and what it can do to you and those around you.  So, let me spell it out for those who don't know.

It happens so quickly.  What I can compare it to is this.  Think of a wonderful day at the ballpark.  The sun is shining through the leaves on the trees and a comfortable breeze is blowing.  It is a perfect 72 degrees and everyone is laughing and having a great time.  You and your dearest friend, partner or child walk to the vending stand and get a perfectly chilled beer and a hotdog.  You are walking back to your premium once in a lifetime seats that you won in a contest.  Life is good!  Then as you take your next step a World Series Hall of Fame slugger mistakes your lower back for a ball.  WHACK!  You drop to your knees and your world spins not to mention you dropped your perfectly chilled beer and dog in the dirt.  In that moment, if someone asks you anything, do you think you will (after you get your breath back) be pleasant?  No.  Not if you are human anyway.  This is what it is like for the person in pain.  Any good moment is shattered and you are left reeling from the pain.

There is another part of this equation of pain, the person on the other end.  The one caring for you.  Think for one second about the reaction you send full force in their direction.  All they wanted to know was how you liked the great seats.  You proceed to take their head as payment for the intense pain you feel.  You don't mean to but...you do.  In that one quick moment you crush them as well as the amazing day you just ended.  I know you hurt, I really do.  Heck, I feel it too but if you let it out, you can't take it back.  Once you learn this lesson you are seemingly faced with two options.  You can let it out on whomever may be in your line of fire or you can hold it.  If you hold it, you just get quiet and they wonder what they did to make you mad or it comes out later with the other 50 things you shoved down. Again, your caregiver pays.  Those of us with chronic pain need to realize that our pain is not just our own.  We share the love.  This needs to end.  For those caring for us please know we do not mean it and we don't know how to control it but we can learn together.

What I am trying is simple but seems to help sometimes.  However, when you hurt and someone else is feeling sorry for themselves it is a deadly combo.  They can't see you and you can't see them.  You just end up in a bitter match of wills.  No one wins.  I will get some feedback on this but it helps me at least put off the problem a bit.  When I am intense pain, I keep quiet.  I try to avoid deep discussions with high emotional content.  I try to keep a clam monotone voice.  Tone seems to mean everything.  You can say I love you with a mean tone (sarcastic almost) and totally feel the other person does not mean it.  You can say the exact same thing with a loving tone and it is perfect.  Same words, different tone.  So, watch the tone like a hawk.  I say "this is a bad time for me right now or  I am really hurting now can this wait" and hope that it can.  I also say "I am not mad at you but this is really bad right now." I try to let the people who love me know it is not them and I am struggling.  I sometimes post it on Facebook because people will email me or try to chat and I just can't.  I can't even form a complete thought.  I grit my teeth and do my best to make it through.

The thing you have to remember is while yes, we get the crap end of the stick it is also a problem for those around us.  Sadly, it puts more weight on us because we do not want to hurt or disappoint anyone yet, there are simply some things we can not do.  It leads to a depression like no other and a deep feeling of worthlessness.  We want to bring smiles and laughs but sometimes we can't.  We may see your lack of attention as us failing in some way.  For us, failure stings more than the average bear.  We want to please  I think if more people truly understood what pain can do things would be easier on us all.  Hopefully this helps a little.

Have a great day and remember, be nice.  You never know what someone else is dealing with or who we might punch next.  :-)

A give up kinda day!

Well, right now I am not sure anyone should read this.  However, this is to help people who ARE LIKE ME so I am sorry if this hurts anyone.  People going through this horrible briar patch of hell need the truth.  Not sugar.  It has occurred to me that being "honest" may not be the best policy when it come to friends and loved ones.  Today was a quiet day, at first.  Then it became a nightmare.  People who care about you and what is going on in your life will ask how things are going.  Some, may do a quick check up on Facebook or a text.  If you reply happy or "act" happy they assume all is well.  I say my "good" days would send most to the ER screaming.  This is my new normal.  It amazes me that people who know you and know how bad it really is (as you know, I have now broken 3 teeth in back from gritting them with pain) still expect so much from you.  FYI a "true" disability is not a vacation or a party party time.  IT SUCKS! There is not anything good about it.  I fought it for as long as I could.  I worked even when I was told not to.  I did things I was not supposed to because I wanted to work.  I am not an idiot or incapable of work and I am not lazy.  I just need to lay down sometimes.  Like smoke breaks....only back breaks.  That does not go over well with employers.  They also don't like the risk of being sued if you injure yourself further on the job.  If you are sucking off the system and CAN work - you suck.  This is why people don't believe us.  Also, just because we are disabled does not mean we can't have a nice car!  I rode to the store in the challenger and got all kinds of looks because we parked in the handicap parking.  Don't be a hater!

People who know me know I push harder than I should.  I do way more than I should.  I do it because I feel dead inside.  I feel worthless.  I need to do something!  I have worked since I was 11 in some way or another.  I have had three spinal surgeries and gone back to work after each one. Others would have tossed in the towel then.  They did a study my Doc told me about.  They said that less than 5% go back to work after one spinal surgery.  I have gone back 3 times now!  I fought it hard.  Maybe too hard.  The way I see it is, if you can give or do...you should.  When a friend or family needs me I am there.  I do whatever I have to, even when I should not.  Then I get to a point where I just can't do it yet, I am expected to do it and more.  My fault there, I always have so there is little to no grace for me it seems.  Expectations suck too!

I don't think people really know how bad this pain can be.  I don't think they can even comprehend what I actually live through each day.  They see me "faking it"  (so my loved ones don't have to worry so much) and think there is nothing that wrong with me.  Because, I keep trying to do things and I smile, laugh and joke while gritting my teeth.  They see me post a pic and think I am just having a ball when it is actually therapy (swimming) and the only thing I can do exercise wise that does not hurt.  Sadly, to date I have only gone 3 times.  Just too many other things to do.  I am so depressed right now I can't even think.  Yet, I put on a smile and do my best which never seems good enough.  I have never felt so worthless in my whole life.  

This curse is killing me slowly and honestly, I wish it would hurry up.  I know, I know, don't say those things.  I CAN'T HELP IT (yes I am screaming).  I am tired, worn out, sleepless, uncomfortable and very alone.  I have scars on my back from ice burns!  Bet you did not know you could actually burn yourself.  Yup!  You can!  Only use ice for 30 min at a time with a cover on the ice pack.  You know what I do?  I am so desperate for even the smallest break I put it on and leave it because it hurts so bad freezer burn feels better!  Now, that is sad.  I need to up my meds (even though I am nowhere near what I was on the last time before surgery) but I keep refusing because I don't want to be a junkie.  That is for another post though.

I know I can't off myself because I am not that selfish but wow...I just wish this was over.  I wish I could go to sleep and just not wake up.  I could float around in the heavens and look down on everyone going on being happy and not worrying anymore about me.  I would not be a burden to my family or friends.  Those are real thoughts and real feelings I can not share with them.  It upsets them and I don't want that but what about me?  What about what I feel?  When is it enough?  I have to ask for "favors" all the time so I don't have to get up because it is hard not because I am lazy.  That annoys everyone.  I hate to ask for anything.  I wish people knew how that felt.  Even though I would not wish this on my most hated enemy, I do wish they could feel it for just ten minutes.  Try and move any muscle and want to drop because of it.

As you can see, tonight is a bad night.  I have them all the time now.  The grinding is worse than ever I hear it in my head (grind grind grind - more like a creaky chair) with every step I take, when I sit up or down or move and it is making me crazier.)  The creak is like, when you are driving and something is rattling in your car but you can't  find it.  Lovely!  Now, it does a cool trick (NOT) where it pops really hard and I just go to my knees.  I got that gift tonight.  I had to get help walking back around the couch.  Lay down on ice (again) and wait for the spasms and pain to ease up enough to breath normally.  This was my night.  I am still on ice (I know bad dog - but I can't help it) and have my legs up.  I can't get comfortable in ANY position so I am writing it now when the pain is deep and fresh just for you.  It is the middle of summer and I have to keep socks on my feet because they are like ice and hurt because they are so cold (lack of blood flow due to compression in my spine.)  There just seems to be no end in sight and new additions are added daily.

I am tired.  I just don't know how much a person is supposed to take.  Yet, here I am still trying to help someone, still trying to be happy, still trying to be human.  Does it count?  Nope.  If you feel like I do.  As bad as it is, no matter how much pressure you are getting from the outside world...you can't give up.  You just can't.  Hang in there.  I am trying.  You can too.

Frustrations

Why you may ask?  Well, lots of reasons. One being my back hurts.  Not just the usual either.  It is really mad and I have no idea why.  I did nothing to anger it so.  It is like this some days.  So bad, it makes my stomach twist and turn.  I did light clean up today.  Made two beds with the help of my "reacher" which if you do not have one they are invaluable. They are like a really long arm with an end that grabs things for you.  However, they do not work at picking up soda cans.  Ask me what happens.  They puncture a hole in them that sprays you can you can't get away from it.  :-)  Ok well, maybe that only happens to me.

I put two dishes in the top tray of this dishwasher (I can't reach the bottom one unless I am in a chair).  I folded 2 blankets and realigned my pillows on the couch where I spend most of my days and evenings.  Trav carried the laundry for me so I sorted it with my reacher and stool and then put in two loads.  I payed the bills from my couch O' plenty pillows and heating pad.  That was it.  Why is it being so mean!  I hate being me.  I want to be someone else.

It's Raining It's Pouring

The old man is snoring...yup just did a check of that myself.  So, it is actually raining.  Know what I miss (the list is so very long now)?  Running and playing in the rain.  So, if you can do those things you love still.... DO THEM!  Don't waste your life thinking about any reason to NOT do them.  Excuses are easy, real fun takes commitment.  So, since I can't run and play because, that would end badly. I will just to prove I live the life I preach.  Not looking very Faaaaabulious but that is not the point.  The point is to enjoy everyday the best you can.  Nothing is promised to us but death and taxes so...the rest is up to you.  Tonight my spine is so mad a swollen yet I got up and made a point to let the rain fall on my face. It has been a really really long time with no rain. 

My big feat each day is to turn the sprinkler on the garden on my own!  Wooooo Hooooo!  Folks, be GLAD you can do those jobs most complain about.  I would give so much to be able to get the trash out of the can on my own.  Taking in all the joy where you can find it works for able body people too.  If you hate your life....FIX IT!  Stop complaining!  Make the changes you need to be happy.

I won't lie.  I have dark days which, will rear their head here now and then but not for long.  I can NOT or will NOT let that be all there is of me.  Life is short.  There is a whole lota crazy in the world and most of it is around me...do I let them suck me in to the black hole that is their existence or do I rebel a little? What do you think?  Oh, I pay for it, but you know, somethings are worth the trouble you get into for doing them.

Also, side note if someone is happy and you are not....don't kill their joy.  Let them be them.  Simple happy and silly if THAT is what THEY chose.  They are not odd for wanting better you are for not.  Would it be so terrible if you joined in the silly?  Try it. 

That is all. 

Just another day

This week has been a good week.  It is Friday night and while most are out on the town having fun, I sit here writing to you.  I don't have many good weeks these days as I seem to get worse as the days go on.  I have had three spinal surgeries to date, awaiting yet another.  The first was in 2000.  I was 28 years old.  Far to young to go through what I did.  I was a single mother of two amazing little ones struggling to meet the demands of motherhood and life.  There never seemed to be enough hours for all I had to accomplish yet, I pressed on.  When I found out I would have surgery I was scared I would never find my way back to the only peaceful place I had known, the back of a horse.  I was told I would walk, but never ride.  This is me last August.

As you can see, I don't do "never" or "no" very well.  Some of the bulk you see is the back brace I wear almost constantly along with about 50 lbs. I would very much like to part with.  When you can not move...you can't do much.  I can't walk very far at all these days.  Being on the back of a horse has long been proven good therapy for those who are disabled.  The motion simulates the hips natural movement of walking for those who can not.  I had to get help to get up of course and I can't ride long but, I can ride.  The horse really does all the hard part. 

I have not been up since last August and it kills me but I need a better set up now (which I am working on).  Today was quiet.  I can do things, I just need lots of help and this week I am here with Travis (my son) who has to work in the evenings.  This means that anything big has to happen before he leaves.  I am usually never alone long.  I remember the days when I could be.  I remember wanting to reach something on a shelf or carrying laundry and I just did it.  Those days are gone...for now.  I still have hope one day I will be "fixed" for good.

People take for granted all the things their spine does for them.  Everything you do depends on those bones being linked together and functional.  Sometimes, even the smallest movement sends me over the edge.  I often get "locked" in place and can't move in or out of the pain I am in.  I have to get help.  Sometimes, it is so bad I can't even say anything.  I just make noise and hope someone will help me.  Everyone here knows the drill, sadly and come to my rescue like it is normal.  It is far from normal...or it should be.  When I am alone, I have to force myself onto the floor then crawl back up.  Sometimes, I don't make it up for minutes, hours even.  Those times I feel the most desperate.  I don't tell my family about those moments because I feel helpless enough.  No one is there to help me and I grab for whatever I can to pull me back.  Life has taken on a whole new meaning and I try to find happiness in the little things everyone takes for granted.  Things, I once overlooked.  Perhaps, it is that fight in me for a better life that has kept me alive this long.  Most days, since we are being honest, I want to give up.  I cry and wished with everything I had my life was normal again.  It's not and may never be again.

Hi! Intro and why I am doing this.

My name is Michelle.  I am struggling with one of the worst things on earth.  Back pain, it is not something that you can just say is annoying.  It is massive and has almost destroyed my life.  Well, it actually has to some point.  I am doing this because, I know there have to be others who are struggling with this very same thing.  People think it is a cop out or perhaps just a little pain but folks, your spine controls everything and it is not something to mess with.

What I hear most is “How did this happen” and “what a pity you are so young” became almost, an everyday occurrence. I was no longer Michelle.  I was the girl with the horrible back problems.  People would watch me as I walked down the limestone hill filled streets of Eureka and wonder what was wrong with me.  Those who live in our small town know the story; because one of the drawbacks to small town life is everyone knows everything (or thinks they do). 

It began when I was little I suppose.  I had an awkward and remarkable birth so I am told.  I was a rare child and that theme has followed me all of my days.  The word rare for me is almost a curse.  Some of the things that have happened in my life were written up to that very word.  The strange things or events were always wrapped tightly with a pretty bow of rare.  My birth was viewed by many doctors and nurses in an oval observation room.  I was full breach – meaning my back was coming out and not my front.  I imagine it was quite a shock and very painful for my mother (sorry mama).  With the world (seemingly) watching on I was born.

As I grew, I had horrible leg pains my father called “growing pains” he would faithfully rub my legs with Ben-Gay almost nightly.  My mother took me to the doctor concerned about my coordination and the fact I ran into everything.  Graceful, I was not.  She enrolled me in dance lesson to try to combat my ever so dysfunctional ability, or lack of ability  to walk correctly.  I was later tested for Scoliosis which they said I had two minor curves.  My father said “they will straighten out” and that was the end of that.

More years past and I began my obsession with horses.  I wanted to ride more than anything,  I rode the propane tank for a year to prove I would actually “stick with it”.  My father was doubtful to that but agreed to let me take lessons.  I began with Marty Allen Wernle when I was 11 years old.  He placed me on an old reliable western rental horse from Brackenridge Stables in downtown San Antonio.  I had been riding no more than a month when it happened.  I heard the sound of hoofs behind me in the ring.  In an instant I saw her pounding by, with all the power and grace of non-other than a Saddlebred.  I turned to look over my right shoulder to see the most amazingly beautiful thing I had ever seen.  Julie, riding Sea Story.  The pair was more than majestic.  They moved as one, with her arms and head held high, his hoofs chest level with each step and head raised high and curved like only a Saddlebred can.  It was as if time had slowed enough for me to “know” this was what I wanted.  She passed me, hoofs pounding in unison and I turned my old cow horse into the rail and headed straight for the middle of the ring.  Marty looked puzzled.  He said “is everything ok baby”?  I pointed at Julie and Sea Story and said “that, that whatever that I that is what I want to do”.  He smiled and said “baby that is harder than it looks are you sure about that, your daddy wanted you to learn Western.”  I smiled “I don’t care, that is what I want, teach me to be like that.”  You see for me, the ever clumsy awkwardly tall girl who never could be “good enough” wanted that grace and beauty more than life itself.  The very next lesson I was on Harvey a gray Saddlebred/Trick horse.  That is when my love really began and to this day one of two things I am untouchable at.

This intense pain has taken away so many things.  Right now, I am at risk for a disk blow any moment.  When the vertebra at L3 basically explodes.  I have no warning, no date to worry about as it could be any time now.  Which limits what I can do because in part when it does explode it is a nightmare. I am scared to death.  Horrible pain and sometimes the loss of feeling in extremities (that happened the first time and wheelchairs suck).  

 My life, if you can call it that is full of so much pain I can’t even begin to tell you yet, I fight.  You have to ya know?  It is so hard some days and my “good days” would send most to the ER screaming.  I have broken (now 3) teeth in the back from gritting through the pain.  First of all I don’t like being operated on (it scares me) and second it is very expensive and I am not a rich girl.  I struggle with everyday things but once in a while it is not as hard to do things without assistance though, the list grows shorter each day.  Every move and every breath you feel it.  People think “oh yeah right, your back hurts” well let me tell you it makes me want to hit things it is so bad.  It is not a minor thing – it is huge and is consuming me.  I am doing this to maybe explain and help others who are struggling with this issue.  I hope what you read here helps you.  It will be what I am going through but also my family.  You see chronic pain of any kind not only takes from you but from your family as well.  Also, this gives me something I can do without help.  I will work on it as I can so please be patient.  If you need me or have a question I will post my email address shortly.  So, sit back put your feet up and enjoy the horror that is my life….just kidding (sorta). J