ThE BeSt Me I cAn Be..

So I have been thoroughly scouring the internet for information about Ehlers Danlos Syndrome and the people who have it.  I am meeting some new people. 

Learning about things I have been dealing with my whole life but no one would believe or acknowledge. 

You know when you tell people what is going on and they don't believe you.  Or they don't know enough to listen and search, or they tell you that it is just something you will get used to.  Well.  You stop telling people. 

You stop trying to find someone who will listen. 

So I did. 





But now.  Knowing that I've never been "crazy"  That the things I have been going through my whole life are connected, and are things that while I might not like what they all mean together, I have a name for it and I have others I can find information from.

I never really thought of myself as being associated with a specific medical condition.  I mean I've always had the "blonde" condition..  I have had the "girl" condition.  I chose to have the "pink" condition.  Ha Ha!!

All of these things come with being treated a certain way.  So does having a disability. 

While the "Blonde, Girl" comes with good and bad.  Growing up I pretty much got the Bad of it.  I didn't know how to turn it into Good.  But I do now.  It took me years.  Thanks Mary Kay! 

I think part of it has to do with age as well.  But learning that I have value that was not based on what others thought was a big turning point. 

No one wants to live a life of labels.  I would never want mine defined by them.  I want to choose the labels that I believe are worth being labeled by.

Smart
Fun
Interesting
Capable
Friend
Honest
Caring

You get the picture.

Ehlers Danlos is something that I am for sure going to deal with.  It may even speak to who I am for a while.  I have to learn about it and decide what is going to be best for my life. 

I want to be my best feel my best and do my best not only for myself but for my husband and girls.  Don't you?  What would it take for you to do what is best for you?  Best for your family? 

I am going to continue changing and fixing things one thing at a time.  Just like I have always done. 

I have a plan.  It is not perfect.  I am doing what I can do each day and I am going to continue being the best me I can be. 

Blessings,
Pink Doberman

A pReTtY GrEaT DaY!

I've started to feel better.  It has been many days now and I am starting to feel better.  I hope I can start to do more.  I have a sinking feeling that I need another set.. but fingers crossed this will do the trick for a while. 


Today was nice though.. I did a couple things around the house finally.. Not much but something.  I got a package ready to mail.. I hope to have more to mail soon too! 

I also had a surprise visitor, which was super.  My surprise visitor went to the store and filled my fridge with all sorts of goodies!  Which was super, because Jason just hadn't had the energy/time to get it all done.  I now have some more cherries and grapes and pickles..  other things too..

It was also nice to have a visitor.  Since Jason is pretty busy these days, it was nice to have someone to break up the monotony of the day. 

So while I am writing this sitting up still in bed.. but sitting up.  I am happy.  Luka is curled up here and we are watching Home Makeover.  I love watching dreams come true. 

Today was a pretty great day!  Hope yours was too!
Blessings,
Tonja

ChEeSe PLeeSe!

Today has been a good day.  For the day following my injections.  I have mostly slept.  I have eaten, fed Luka, taken Luka outside a couple of times.  Slept some more.  Caught up on my Facebook activities, watched a Netflix movie.  "Freedom Writers"  with Hillary Swank.  It was really good.  So good I cried. 

Took my pain meds, but am weaning myself off of them already.  Iced allot, still doing that, I am still rather puffy on the back of my neck.  Called to try and change a Dr. appointment so I could go out of town to see friends to no avail.  Specialists.  You've got to see them when they want to be seen.  Which in my case is only on Wednesdays.  Which stinks because that falls in the MIDDLE of EVERYTHING!  At least it does right now. 

And I'd really like to leave and go somewhere else right now.  I am sick of my walls. 

Looks like it is going to be a long time before that happens for me. 

Feeling sad for myself, but also know that I will be alright. 

I must be a really warm person as of late as I am going through Ice Packs Like I am the sun.  Weird!


Oh, and Luka seems to have developed a bit of a farting issue.  Which is lovely as his rear is facing me right now.  Ugg.

I've got a stash of Gluten Free Pizza from Sam and Louie's pizzeria that Jason got for me before he left.  He's going to be gone allot so he stocked me up on easy things to fix and eat.  I plan on eating GF Pizza, Isashakes, and Isa Bars.  Not to bad considering.

I might also eat some cheese.  Have I mentioned I love cheese!  I do.  I love it allot!  I like the hard white cheeses, the pungent kind, the kind that have bite, and flavor.  The older the better, the kind of cheese that you get in the special cheese section, not the dairy case.

I like goat cheese, Parmesan cheese, Gouda, Swiss, Sharp Sharp Cheddar, Asiago, Parmigino Regiano, Well the list can go on and on and considering that is all of the cheese names I can remember at the moment, I will stop there.  But suffice it to say I am a cheese whore.  I like eating it with grapes, cherries, apples, avocados, chips, plain, really I just like eating cheese.  I like to also eat fruit.

I am now hungry, I wonder if there are any cherries left to go with my cheese?  Cheese pieces can be eaten while lying flat on my back!  So that is an additional bonus to my favorite food!  MMMMmmmMmmMmm!

Blessings, 
Pink Doberman

dOiNg SoMeThiNG..

I've been avoiding all of the crafty blogs as of late.  I have also been avoiding my craft room like the plague.  It depresses me.  But I am having some hope.. Maybe I can start doing some sewing or something again.  I really want to. 

I just started perusing the list of craft/sewing/making things blogs.  Who knows.  I sure Have a list of things I need to finish around here. 

What are you making?  At this point today, I'd be thrilled to make Jason a great meal.  I think he'd like that!  I told him the other day that I would love to be someone's personal chef.  I think I'd be good at that.  Well, if I could physically manage it of course.  The only problem I foresee with a job like this is I would want to create all of the menu's..  Hmmmm.. I don't think life works that way!

I am dreaming again.  I like to dream.  Do you? 

I am dreaming that I have a garden planted.  I am not sure if that is going to happen this year or not.  At this point I haven't been able to plant it.  I don't know that Jason is going to be able to get it done either.  

Well I guess that is how life works.  You never know what is or isn't going to be around the corner. 

But dreaming makes things seem more possible.  Keep your fingers crossed that I can start crafting cooking and driving soon!  Woot!  I have mine crossed! 

Blessings,
Pink Doberman

RaDiO FrEqUeNCy AbLaTiOn PrOcEdUre DaY

Hopefully this won't make you queezy.

So the Radio Frequency Lesioning/Ablation procedure was today.  Yuck!  I mean, happy to have it done for sure.

This proved to be the worst one I have gone through yet.  The procedure itself went well I think, time will tell.  He put the needles in a different spot than he had previously, which caused me some intense horrible pain that I could not believe.  It was a radiating burning sensation that was horrible intense and unbelievable.  You wouldn't believe the pain if I could adequately describe it to you.

It did not help I kinda freaked out before the actual procedure.  I had an uncomfortable situation with a nurse.  She put my IV in or tried to put my IV in my right hand while sitting on the complete left side of my body, so I had to stretch my right arm to my left side and keep my face turned the opposite direction. 

For those who follow this, it may be no surprise that this was not the best position to put my body in.  I did manage, until she started telling me to Not MOVE Hold Still, and getting a bit more cranky...  For starters, I HATE IV's!  I REALLY REALLY HATE getting them in my hands! 

My hands hurt anyway, and this is not the best place to find a good vein on me.  She started, the more she poked around in there the squirmier I got.  The more she told me to not move the more upset I got, (thank you PTSD )  Jason stepped in after my vein blew.  

Ugg.. she then proceeded to get a clue..  my bed was moved, I was moved, and she did it the right way and she put it in the inside of the elbow.  That is where I have the best luck getting IV's put in.  I give the nurses two tries and then they have to go get someone else.  I really am not that difficult, I have good veins..

So I already had tensed up muscles in my neck by the time I got to the surgical room.  Oh the joys.  It hurts more when I am tense than when I am relaxed.  But it was over sooner rather than later.  I think I only got three injections instead of 5 so that made it go faster.  They do give you a sedative type thing, that relaxes you.  But they need/want you to feel where the needles are placed so they can confirm that they get the correct spots.  Which is not fun.  They also take pictures of the procedure.  Which is kinda cool, if you want to see needles sticking into your spine..


I got the injections they gave me a topical pain killer, and then after the ablation was over they gave me a longer lasting pain injection..  ( that is the one I really think did NOTHING for me)  I don't know if it was different than before or the same.  But I do know it provided no relief.  The only thing I could think to do once I left that table was to get home and get my medication.  ( I had forgotten my oral medication at home, which was horrible! ) 

I was practically falling out of the room to get out of there.  I knew I was in trouble, and the fastest relief I could get was to get home quick.  I was begging Jason to get me out of there!  Which he went to work to do.  Tracking down the nurses to get things going..  I hurt and it was only getting worse.  My Ehlers Danlos Diagnosis is fairly new and Dr. M and I really did not discuss it allot.  So he is not completely up to speed with it all.  Besides he is not that kind of Dr.. 

We will discuss it more in a couple of weeks have no doubt.  I am not going through another one of those with that same medication.  I am also not going to forget my meds that I know work for me. 

Oh my! 

To top it off, our ride home was in our Jeep, that I love, but is not suitable for carrying a sensitive patient who feels every little bump.  It was a horrible horrendous long ride home.  I was unconsolable and the pain just kept escalating with every bump.  I even had an ice pack but those really do not stay cold very long.  Jason got put through is paces today. 

We got home he carried me in to the house and put me in bed.  THANK YOU ISAGENIX for helping me to loose weight. 

So I have learned some lessons. 
1. Do not get stressed out beforehand.
2. Bring my medication with me.
3. Get a hotel room near the procedure or plan a stay with a friend so there is not a long bumpy ride.
4. Bring lots of soft icepaks
5. As I can not eat prior, bring something to eat afterward.

Yes, we could have driven the car that dad is letting us borrow.  However it still has no air, and when Jason drove it this week down the block to an appointment, he had to jump start it to get home. 

Needless to say until that problem is fixed I am not to get in the car and go anywhere in it either, and Jason smartly avoided driving it although the ride is smoother, the last thing I needed was to sit out in the car in the heat, and wait for it to get a jump. 

We made it home he got me in bed, and got me my medication.  He snuggled up consoling me for hours until the medication made a dent in the pain.  I don't think I would have made it through it if it had not been for his snuggling and niceness efforts.  I was in Hades!

My friends and family were praying, Jason was hanging on and I was just trying to keep my sanity in this process.  Trying not to move trying to keep packs and packs of ice around my neck head and back.  Trying to not scream in Jason's ear and trying to stay as still as possible. 

The meds started working and several hours later I was on the road to recovery.  I am currently iced up, medicated, and propped up.  I am tired and grateful that today is over with.  I never want to have another one like it or as bad or worse than this. 

This pain was like being burned, stabbed and shot I would imagine all at the same time.  It is not something that anyone would subject themselves to if they were not desperate.  And when it wears of in six months to a year I will be back at the Dr. M's office begging him to do it again. 


This procedure sucks!  It is horrible.  But it is also my only miracle.  Hopefully once again I will be blessed by the results of the extra pain that I have endured by going through this will allow me to get around better and not be stuck in bed. 

While it won't fix everything it does help in a major way.  I am so grateful for that! 

So here I will be sitting for a while.  But I am praying to God that my miracle will once again happen and this will stop much of my daily neck pain.  Then I can get back to therapy!!

Oh Lordy Lordy please help my mind erase the pain of today! Your broken child.  Amen


Blessings from a grateful heart! 

Pink Doberman

ZZZZZZZZZZ's

So I go in tomorrow for my RFL procedure.  I am happy about that!  I know after this they will also have to do something to my lower back again but hey!  I will be happy to sit with my head up for longer periods of time soon!  It does take a while to work.  But when it does take effect I love it!  Life is so much better.

Now if only I would stop dislocating everything.  ( I will be working on that again soon too!)  Oh joy!

Well, today was the first day in a week and a half or so that I can remember getting out of the house.  Except for a Dr. Appointment.  Jason and I took a drive.  It was lovely!  We took a scenic drive to "tour" the flooded lake areas in our neck of the woods.  He loves that sort of stuff.  I love riding around with him. We had the "lid" off of his Jeep and we just drove for miles.  When we got back to town, I was sure ready to get out of the Jeep.  I waddled to bed and here I sit.  Icing my back and neck.  It was worth it!  Besides it isn't like I am going to really be doing much of that right away anyhow.

I will be waiting at least another week before I start to move around much.  Gotta get those injections sites healed good so I don't start bleeding.  Ick!

Sorry no pictures.  My hands at this point are going to sleep while I type so I need to get off the computer.  Besides it is time to get some ZZZZz's

Please note:  I am not feeling sorry for myself!  I am overjoyed that this procedure is available to me!

One of the blogs I follow Nienie..  Look to the right of this post and you will see her blog.  Read her courageous story!  She is an inspiration to me!  So is Katheryn Wolf read her blog too!  Wow, well actually there are countless inspiring people out there.  Ok I really need to stop now.. 

I will post tomorrow about how it went.  Thanks for popping by!

Blessings!

Pink Doberman

My BoDy is the same as the WeAtHeR... Or is it??

I had made a post a long time back that My BoDy is the same as the WeAtHeR..  I am excited to report that almost six years now after the accident this is no longer the case. 

An earlier Post I was Cursing the Weather and the fact I could not get my RF procedure any sooner.

2005 Some of my thoughts ( This one is a long one folks.  I moved it over from a blog I had started a while back in another format.)   


It used to be with every front, change in the barometer etc that my body would go into a horrible state.  Emergency Rooms Days upon days of migraine pain.  No relief and when some was found, I might have a good 12-24 hours before the next one hit.

I have been better for about a year now I think.  The weather related migraines seemed to have stopped!  PRAISE GOD!  Man oh Man how glad am I.  I can still feel in my limbs a change.  But it is so much more subtal than it has been previously.  I have been testing this theory out this past year as each system came through, my body has had very little reaction to it.  Oh Oh Lordy Lordy, this girl is incredibly happy! 

While I still have lots of things going on that are wrong with my body.  The weather related migraines had made my life HELL.  Had made Jason's life HELL.    I still get migraines.  I get the kind I have always gotten around that time of the month occasionally.  I really do not believe they are migraines, more like bad headaches.  And then I still get the ones that are related to how I move my head. 

So I still have to keep that in check.  Luka can Alert on those rather well so that helps so much! 

Oddly he never has noticed the PMS ones. 


So, here's my plan. 

Once I get my RF procedure.  It will be two to three months at least of PT and daily exercises before I am going to be able to do much.  I am getting a motor chair tomorrow, so that should really help me get places around town.  As it is I do not leave the house without Jason.  This way I will be able to scoot around with the rest of the girls in the neighborhood!  That should be rather nifty.  I will also be able to get groceries at the store!  ON MY OWN!  Yipee!!! 

I am hoping with a month or so of therapy under my belt I could start driving myself again.  FINGERS crossed!  That would mean I could get myself to my own therapy appointments.  Of course I will have to carry my cooler of ice packs in the car as it does not have air conditioning..  Ha Ha!    Dad offered to get it fixed if it was not much money.  But, I feel guilty getting it fixed.  I mean it does work.  So we will just have to see how it goes.  I may have to break down and take it to the Excellent Ford Dealership to get fixed. 

So..
Radio Frequency Procedure.. Week 1  REST and don't move my neck so I do not do something and bleed.
Week 2 Start Back to Therapy!  WOOT
Week 3 Continue Therapy Start Doing what I can around the house SLOWLY
Week 4 Continue Therapy Evaluate what I am doing and see if I can do more
Week 5 Continue Therapy.. Can I drive yet?
Week 6 Continue Therapy.. What can I do outside?
Week 7 Continue Therapy..  What else can I do?
Week 8 Hopefully driving myself to therapy by now...
Week 9 continue..
Week 10 Can I also run errands?
Week 11 Maybe I will be holding myself together better by now?  Keep on Keeping on..
Week 12 Work Harder Start Pushing myself more.. What are my boundries??
Week 13 Get those projects done that have been sitting around piling up.
Week 14 Stick with the Therapy, Do as much as I can Where Ever I can!!

I still have hopes and dreams you see!  (They are in my head somewhere.  I'll be dusting them off now..)

So this is my plan.  I really hope this works.  My limbs are so much more unstable that they have ever been before.  This winter really did a number on me and the last RF procedure started to wear off in late November early December..  I've been a mess ever since.  So now it is almost July and I will finally be getting some relief.  I hope my doctor now has the willingness to do my RFL closer together like before. 

My RFL Typically lasts anywhere from six months to a year.  So I just have to be paying attention and be prepared to slow myself down before I get into trouble.  Until I can get my next procedure.  I have a window that is about to open where my pain level will be reduced greatly in my neck and I will have opportunities not afforded to me in the past six plus months.  So I do not intend on wasting a moment.  

I think he almost wanted to start crying with me when he was in the office examining me.  At least he has feelings.  Better than a doctor who has no empathy.  I guess that is a reason he makes a good pain management specialist.  Although I think I am about his youngest patient.  Everyone else in there is around 70+ years old. 

Oh well, it works and I am not about to complain.  My body feels like it is 70 but my mind feels like it is 16 and just wants to go dancing with my friends!  I am quite the contradiction. 

Well fingers crossed that I can pull this off and my body will cooperate.  I am not going to get my hopes up about working just yet.  But I am definitely keeping that in mind!   Right now I am soaking as much information in as possible, trying out possibilities and learning and researching all that I can.  I hope some way some day I can do something that not only provides an awesome income but is also fulfilling and gives back to others. 

Thanks for following me on this journey.  Miracles happen!  I am so grateful to have concrete improvement in my situation!  Between the weather not causing migraines every day or every other day and my getting another RFL procedure.  I feel as if I have some potential my neck has been the largest source of pain since the accident.  And it will be so great to be able to hold it up on my own at least sometimes. With out the fear of so much pain.

I know I know I am going to be careful.  I hear Jason's concern in my head.  I will really try to not do anything to mess myself up more!  I won't over do!  I will just proceed slowly and safely! 

Ugg!  That is so not my personality!  Can you say Bull in a China Shop?   Here is a Bull Elk that Jason took a picture of near our house the other day. 

Yup.  Today is the best day I have had in EIGHT DAYS!  Thank God!  I am still resting in bed.. But today I have hurt the least, and I even sat in a fluffy chair in my living room for a bit this morning, and had a chat with a neighbor.  Life has been nice! 

Well.  I am off to watch some more from CreativeLive.com .  We bought the training session!  It is so worth it!  I think I will watch it until I have it memorized.  Jason is far better at the technical stuff, I am better with the creative stuff, so we make a great team! 

Speaking of Creative!  I managed to make a background for my twitter page!!  Woot!  I have to admit I was a bit nervous about doing it but now that I have done it I think I could do it again and again!  What I made totally features Luka!  I've been adding followers on Twitter too!  It is so fun to have new friends! 

Now if I would just learn what all of the tweeting abbreviations mean.  ( I have been studying that too! ) I love Google! 

Well, that is all for now.  Blessings!
Pink Doberman

PoSt TrAuMaTiC StReSs DiSoRdEr ( PTSD )

I am not going to talk about me or that part of my life.  Not here.  If you know me and you ask me in person I may.  It isn't that I am not willing to share.  I am just not willing to share with EVERYONE.  I have strict criteria.  Criteria that keep me sane and keep me functioning at a level beyond crazy messed up and unfunctioning.  Yes I have been there before.  I have no intention of going back.  I avoid at all costs the things that will reintroduce me to that life.  It is an unsafe life that is very difficult for me to pull myself of it, and go on focusing on the future instead of moments from the past.

However, understanding that many people do not understand Post Traumatic Stress Disorder ( PTSD ) I feel an obligation to share something about it.  I do understand it.  I understand it all to well.  I wish I did not.  I wish I could look at people with an innocent a wondering gaze and innocently go on with my life as if the thoughts had never crossed my mind.

I hide it well.  I learned that in my Mary Kay life.  Shutting off parts of your soul and you mind so that others have no ability to see inside.  Unfortunately what is inside still is there.  You still have to deal with it.  You still have to have the energy to control it.  You have to be proactive with your life and keep yourself safe.

I have learned.   I have not mastered anything.  I have not overcome it.  It is still here.  It may never go away, although I wish it will.  My husband has suffered for it.  Physically as well as emotionally.  It is apart of who I am and we live with it.

My PTSD was not caused by a traditional "War Time Event".  But knowing that many who are coming back from places like this struggle as well as many others who have never been to an over seas conflict are also plagued by it.  I want to share a couple of blogs.  A very special very candid blog written by Ray at Cold Steel Rain  or John as found at The Enemy Within  .  The two sides.  Reality and Former Reality which has a distinctive way of sneaking its self into the current reality.


Oddly enough Cold Steel Rain is ending, and it looks as if The Enemy Within is just beginning.  Check them out.

I have never of course met John or Ray.  But their writings are so similar to what goes through my mind what I fight with and he is able to describe it so succinctly I thought I would share.

It is a pervasive problem without a real solution. 



Blessings and may all of your thoughts be happy ones.

Pink Doberman

ThE MiRaCLe ArOuNd ThE CoRnEr.. He wished to never wake up.

Sometimes we are one expert away from relief.  In some cases that initial expert may be a health care practitioner, neighbor, family member, newspaper article, etc. that person/media introduces you to the source of the relief.  You then are informed and can seek the actual experts. 

But contrary to my former beliefs.  Doctors do not know every problem that can arise with our bodies, it would be an impossibility for one person to understand everything. The best of the doctors will admit that they do not know, and research it as well as continue with ideas and referrals for you that may connect you with the person who does know. 

Older doctors were taught certain things in medical school, seasoned doctors were taught much of the same but also were exposed to the latest things during their schooling.  Newer doctors are being taught a mix of the discoveries prior as well to the latest discoveries and techniques. 

Our "daughter" who is in school to become a doctor.  Is quite worried and quite stressed by the pressing need she feels to understand and know it all.  She is constantly studying and researching, as she feels a complete all encompassing need to absorb everything fully that she is being taught, as well as research what is being left out, and the latest medical news as it becomes available. 

She is going to be an excellent doctor.  She will be excellent, because she cares.  She will not be excellent because she knows it all, although if anyone can learn it all I believe she could.  She will use what she knows and research what she does not know. 

I think with any of us this can be a true statement.  Do the best with what you have be honorable be intentional be honest. 

This next story is exactly like that.  Like so many of our stories are.  This the story that has inspired this post.  Might I add that I LOVE my latest resource of Twitter!  I learned about this miracle from the BBC on Twitter!  He wished he could go to sleep and never wake up!  The story of Bill Attew. 


If you feel like giving up.  If you are struggling.  I have been there.  I will probably be there again be for this is through.  The thing that keeps me going is the miracle around the corner.  Right now I am holding on for the My RFL Procedure  I am counting the days...  I want out of my prison! 

While it won't solve it all it will provide some relief.

I hope you find the miracle you are looking for!  Pass Bill Attew's Miracle along.  You never know who needs this miracle!

Blessings,
Pink Doberman

OtHeR eLheRs DaNLoS PeRspEcTiVes...

So since I am still here... waiting for the date of my RFL  I am just taking the opportunity to get to know more about what I am going through.  I really do not have anyone in my family that has ever gotten this bad.  I am sure others in my family have this.  Positive actually.  Their bodies have not been subjected to the same trauma that mine has been subjected to.

I am happy about that but also concerned that they would not suffer like this.  I do not know what my future holds but I am determined to tread as lightly as possible where my body is concerned.  Not that I wouldn't love to go out and bat a volleyball around or even go for a run with Luka.

But I am learning that those things are not going to make me feel any better.  What will, learning more about what I can do what I am still able to do and getting myself in alignment for that.

Whatever it ends up being.

Here is an article about a family who has EDS.  They live near each other and have learned to work together to accomplish the tasks in their lives.  The help of neighbors and friends also plays and important role.

This article written by Nicole Mattke shares a little about the signs of EDS.

15 year old Sarah Sickles shares about her life with EDS.

I had no clue what Ehlers Danlos Syndrome was.  I have learned allot on my journey so far, not just about this but about many things.  I realized that people with disabilities had limited lives.  I truly believed that their needs were being met by the organizations out there.  Wow was I wrong.

So I am going to work to continue to educate others about people with differing abilities and what they go through.  Through my eyes and what I personally experience as well as through the eyes and thoughts of others and their experiences.  I hope you will continue to follow me on my journey.

It has been an eye opening one for me that is for sure.  I think many people who have this happen to them give up.  I know the thought has crossed my mind a time or two.  But there is a reason that I am going through this and I am determined that it will not be in vain.

Besides the friends I have left around me are great, even though none of them live that close to me.  I am grateful so grateful that I made the kind of real friends that don't disappear when the going gets tough.


If you are out living your life and things are all going great for you.  Please consider that making real friendships can be one of the utmost important things in your life.  Be the kind of friend that you'd want a friend to be to you.  Treating everyone as you would want to be treated is something that has served me well.  I hope it is also something you can take to heart or already do.

It was one of the things that I was brought up doing and then my career with Mary Kay reinforced it.  I have very few regrets.  The regrets I do have are mistakes that will never be repeated again, so they are now learning experiences.  They are worth their weight in gold to me.

Some of the lessons I have learned have been hard.  Actually most of them are.  Being such a stubborn person, I seem to have to hit my head pretty hard to actually get something knocked into me.  ( Pardon my similarity to my physical condition.. )

We all go through things one way or another.  I just hope to have more grace than I have had in the past when I go through things.  It seems though that all of the tough things that you go through just prepare you for the even harder things yet to come.  At any rate I'd rather be prepared.

In the meantime.. I am trying to talk Jason into making our living room that we never use into a place to shoot more pictures.  We do things on the shoe string plan so if he goes for it we will be very inventive with our setup!  Hey, what ever works!  We did watch a great class on how to set up a photography set in a studio environment, and learn about lighting.  The budgetary things that they used in their class are now being added to  my wish list!   Right now I am just excited I get to continue learning!  Thanks CreativeLive.com !!  Check it out!  I think you'll be impressed!

I hope you have also enjoyed some more of my feathered friends that come over to eat!

Blessings,
Pink Doberman

GoRdoN SeLLeY

Happy Father's Day!  A Father important people in a a person's life.  Thanks to all of the great fathers out there making this world a better place!

So I was searching a bit online.  I try to share my story, as well as perspectives from others as I can.  I have discovered You Tube...  My husband loves You Tube, he finds hours of hilarity online.  He loves the funniest things and likes to watch them a few times laughing his heart out each time.  I wish I had his personality.  I am a bit to stuffy and have a very dry sense of wit. 

Anyway, this is an educational video not a funny one.  Sorry, I will try to find something I think is funny to share as well.

Gordon is a person who deals with pain, and he does a good job of explaining how having chronic pain works...


I hope this works.  I am hoping to add the actual video to my site so you can see it with out opening another link.

Fingers Crossed.

Pink Doberman

PiNkDoBeRmAn iS oN TwiTTeR =)

So I am working on updating things around here.  I finally have posted a picture of myself on my blogging profile.  I have also updated what was written there to better reflect the situation.  I am trying to figure out what else to do as well..  I am mid process shall we say.

One other thing, if you are so inclined you may also decide you'd like to follow me on Twitter.  I am rather new to tweeting but I have been reading up on it so not to be a total twit.

You can find me on Twitter:  PinkDoberman

I am finding twitter to be a great place to learn about things!  So that is my two cent plug for Tweeting on Twitter.

I have gotten the good news I was hoping for so now it is just a waiting game until the actual procedure happens.  I am counting down the days.  As I hate taking all of this medication and I hate all of this pain.  I also hate not being able to sit up.  I want to be up and moving.  I have only been able to drive the car downtown one time this whole year!  I so want to be able to move my head again.

That will hopefully happen soon!  I can't wait!  I hate feeling like this it does bring back the memories of how I ended up this way.  My car accident.  Ugg.  I was this way for YEARS!  Until the Radio Frequency Solution was finally figured out. 

It has not been until recently that Ehlers Danlos Hypermobility Syndrome was being told to me for the reason I was never going to get better like other people do.  Three medical professionals have agreed that I need to go to a geneticist.  I have the appointment, and then I hope to find some doctors that are more "expert" in dealing with this.  I am hoping that I only have the Hypermobile version.  I have already been poked positioned pulled, etc in ascertaining this.  I wonder if I couldn't just make a video of myself doing all of these contorted things and then be done with it.  So I don't have to go around stretching my parts more.  I understand that that is bad for me to do.

In Fact there is an opportunity to support people with EDS by clicking!  There is a contest for money to benefit a non profit group.  So far The Ehlers Danlos Network is in the top percentage of those to get the funds.  More votes are needed.  The contest goes until July 15, 2010 or so.  Click to go to the page anyway even if you are reading this post after that date.  It will connect you with The Ehlers Danlos Network and you can learn more about EDS there as well!

I hope this makes sense.  Per usual I am writing this in pain and on medication.  Lately I have had particular difficulty gathering my thoughts.  So frustrating.

At any rate I am proud of myself for getting this post finished.

Hope your day is going great!  I am counting down the days until I get my Radio Frequency Procedure.

Possibilities Abound!

Pink Doberman

RaDiO FreQuEnCy LeSiOniNg ~

While I you read I thought I'd toss in a little of my "eye candy"  The pictures are of no relation to the post.  They are of my "pet" birds.  That feed outside my window.  Enjoy!

Well today has gone like I had hoped and not like I had hoped.  It is very evident that I am not ready to go to work yet.  I look like I am dying.  Whether I am taking medication or not.  I think it is bad either way.  The pain seems to not be able to get under control unless I am lying flat on my back with ice and meds.  Then it gives me some "control" but it does not remove the pain.

So I am only going to talk about the good points of the day.  I am going to completely leave out the worst things.  They just make me furious.  But then several things can get me going lately.

I made it to my appointment with my doctor today.  I did not see his PA this time I saw him!  Glory be to God!  By the time I got to the doctor's office.  I was a wreck.  I woke up a wreck really, but I did get a bath with Jason's help and he did get my hair brushed out.  Thank goodness for that as well.  I really think that I may be due for a hair cut.

I must have looked horrible.  We got to the office about 20 minutes early.  Any chair right now is  considerably difficult for me to sit in.  There is no comfortable way for me to be.  This last bout of my body wreaking havoc on my life... well each time I have good days the bad days following are lasting longer and longer and the pain is becoming more an more intense.  I am so frustrated.

The wrong moves or chairs or whatever are making my pain intense.  The good news is that my doctor saw me, inspected me, asked me questions and then agreed that the Radio Frequency Ablation or Lesioning (Click to SEE the actual procedure)  was indeed the best answer for me.  I will get four or five needles again.  I can expect to do this for the rest of my life around once a year.  At least that is the way it stands now.  I am so grateful.
( I just found this video online that describes the procedure.)

For as horrible as this procedure is.  This will be my 4th or fifth time getting it.  I love it.  It helps so much!  I also hate it.  But it is the only thing that helps short of killing myself with narcotics and other pain killers over the rest of my life.  I still have to take those to but not nearly in the amounts as when the ablation procedure wears off.



Jason has been absolutely wonderful today.  He is everyday.  Today was a hard one.  I have been in bed for about 6-7 days now.  While I was out and about today, it was not a pretty site.  Luka stayed home, I am not well enough to use his services, so Jason was on Super Duty!


Jason spoke up when the doctor asked questions and he made the appointment go so much smoother.  He got me some water for me to take my medications with and helped me all around and in and out of the places we had to go.

My phone has also not been working AGAIN..  But Sprint stepped up again today and traded my phone out for another.  I now have a newer version of my phone.  Thank goodness for phone insurance.  I drop everything.. so my phone is pretty abused.  I am getting the better end of this insurance deal than they are at this point.  Phew!  One thing insurance is good for!

Well at any rate.  The day turned out better than it started.  I am tucked back in bed and resting with my ice packs and am not planning on moving much.   Hopefully I won't suffer for my actions today when tomorrow arrives.

The doctor even is squeezing in my procedure next week.  Phew!  I am so grateful!
 
On another note:  There is now an actress Cherylee Houston in the United Kingdom that has and portrays a character with Ehlers Danlos Syndrome!  How cool is that!  Here is a link to an article I found about her.  Another blog that I like to read shared a video link about her, sadly that link is only available to be watched inside the United Kingdom..    You can read the post at the very least at:  Benefit Scrounging Scum

Go Cherylee!  How great is that!

I have not been talking about the disaster going on in the gulf with the oil spill and the British Petroleum Disaster.  I am aware.  I am just to saddened by the entire ordeal to even have a comment on it.  I am sending prayers for all of the wildlife and people who are being affected by this.

In addition in our own lovely state of Nebraska  is flooded as well as many other naturally occurring disasters all over the planet these days.  At one point in my life I was one of the people called upon to help in these instances.  I feel quite helpless and useless these days as I hear of these events happening and my inability to be of any help.

My cousins are even in one of these areas as well as several friends.  Life sure does toss curve balls out.

So saying lots of prayers for lots of folks and lots of cares.

Hugs Blessings, and Strength.. with a Faith that we will all make it through!

Pink Doberman

cLiNk!

I am trying to focus!  Focus on the future.  Not all of the things I have missed in the past!  The past being even 5 minutes ago. 

I do realize that I am a huge whiny baby.  I hope to put this chapter behind me here soon.  I am hoping that by going to a different Vocational Rehabilitation facility that I will achieve different results.  I am planning to leave Luka home.  I have an orientation meeting.  I also have an idea of what I can do!  As last time the case worker had absolutely no interest in even thinking of things I could do.  She handed me the paper and said to call the 1 800 numbers and stuff envelopes.  (That just pisses me off to no end!) 

So I have been doing my own research.  My own learning.  Which of course I don't mind, but I thought that is what their jobs were to help me figure this stuff out.  

Well I have, and I am in hopes that they will agree that it is something suitable for me. 

So here is to the past being in the past and the doors to the future cracking open!  Clink!

(Still resting in bed.  It is helping.  Still hurting lots.  But plan to make it to my appointments tomorrow! ~one of which is with the Dr. who can stop this pain! )

Blessings,
Pink Doberman

FrEsHeNeD uP

What I thought was improving I am not sure that it is.  I am having problems sleeping and the pain has been increasing.  The meds have not yet been able to take the edge off for me to fall asleep.  So I am writing in hopes that doing what I can to stay busy will help me sleep.

I just finished watching a french movie called Priceless from netflix!  I stayed awake and read the subtitles.  I thought for sure I'd doze off being I had to read and all.  Nope.. pain worse wide awake, more ice more meds the aggravation sets in.

Tomorrow I had hopes of doing things.  Sitting up being first on the list.  I'd also like another bath, although I never did manage to get my hair brushed out from the last one.  I think I just have one big rats nest. 

I do have a doctor appointment next week.  But it will do nothing for the pain, at least not instantly.  I will have to schedule again for that as well if the doctor thinks I am suited for the procedure again. 

I really hope he agrees that I can't go on like this.  It has been over six months since in my opinion the procedure should have been done.  Partial my fault and partially schedule difficulties. 

I am trying to keep the fact that I am seemingly nauseated out of my mind.  I am going to take a pill for that too I guess since I would not be able to handle getting sick like that with the way I feel physically in my neck and back.  Oh God Please make it all stop!

Well that is done.  Those pills are NASTY!  I avoid them like the plague.. Which is probably what I would feel I had gotten if I hadn't taken it.  I'd be praying to the porcelain god of kill me now!

It is a special day for one of our girls tomorrow as well.  Her wedding. 

Things just don't work out like we'd like to sometimes.  I am not needed of course, but giving her a squeeze would sure be a great thing to be able to do.  I guess it will have to wait for another day.

It won't be the first special day we have missed because of this and I am sure it won't be the last. 

At any rate.  Life is like a box of chocolates.... (from the movie Forest Gump)

Well I am going to try this sleeping thing yet again. 

I am all freshened up.  Fresh Ice Pack, more meds, pillows appropriately arranged, Luka settled.. 

Other wise I guess I will just be messaging my friends on the other side of the globe all night via Facebook.

By the way the movie was a very good one.  You should watch it.  It was a complete chick flick!  Thanks Netflix! 

Blessings,
Pink Doberman

CrEaTiVeLiVe.CoM = LoVe

Well this has made the fourth day laying down in bed.  I can tell things are relaxing back there.  I do not know what I did.  But finally things are getting a bit better.  I leaned up for part of today which was nice.  I am icing like crazy and I hope it is helping.  I have a soft pack on my neck and a hard ice pack on the pillow next to me for when this one warms up.  In an hour or so the other pack will have started to soften and I will add that to the back of my head neck and back.

The ice does help.

Luka has been my constant bed mate these days.  He just finished a stuffed animal he'd been lovingly carrying around.  It is now scattered delimbed all over the bed.  He is feeling quite proud of himself.  He does not rip up his boots.  He knows better but his lovey baby is now history.

This is a short post.  While my arms are hurting still they are not as bad as they were.  I am just quite tired tonight and need to get some sleep.

I guess if I had to be stuck in bed this was a decent time to be laying here.  There have been some FREE online photography classes that I can watch at www.creativelive.com  .  Of course by the time this posts the class I am watching will be through, but you can sign yourself up for some other classes of interest in the coming weeks.  They are 100% worth the value.  In fact they are an AMAZING value!  I do hope you will check them out!

This is my plug for www.creativelive.com  this online training system is the best thing for me!  I can learn a bunch of things for free, taught by experts, without leaving my bed!

I feel I have been a very lucky girl to have come upon this stash of great information and generous instructors and crew!  Check it out!  You will be impressed I guarantee!

I am in love!  I am also a big Dork!

Blessings,
Pink Doberman

My Relax The Back Strategy

So I have seemingly over done it again.  I did not do anything except for sit up all day one day in real chairs.  Oh I am so frustrated.  I have spent the past two days on my back.  Medicated out of my mind.  I have yet to take the pills today.  I am sure that when I do I will hopefully be able to get a bath.  Going on Day.. 4 without one.  YUCK!  I am scarred to get stuck in the tub.  I have no intention of getting in to it and have to call for assistance to get out. 

Otherwise I will get one on Day 5.  Jason will be here then. 

Not much else has really been happening I did have a great opportunity to see some friends.  It was fabulous!  I had such a great time!  So did Jason.  My father is back right now and that has been nice to see him as well. 

In fact we have seen several members of our families as of late.  Which has been just wonderful.  I am thankful for that.  I miss not participating more with them but I am grateful for what time I do get. 

The rain has been incredible as of late as well.  Rather timely, just when it starts to dry out it comes again.  It would be fabulous for me of course if I had my garden planted.  But that is not the case. 

I spent $150 on plants and gardening seeds and stuff or so...  It makes me sick to think I may have wasted that money.  I was investing in our future harvest.  Hopefully I will have time yet to get things planted.  I may not have time to get the seeds going but I can put them in the freezer and hope that they will be good until next year.

Today has been thank God for Netflix!  I can watch movies online.  My computer is on a tilt tray that extends over my bed!  Thank You Jason for this great gift!  And Thank You G for my great computer!  With out which I would be only able to get a few channels on the television. 

My legs have been slipping around in my joints I wish what ever is causing all of my pain and discomfort in my upper back and neck would start slipping around and stop pinching all of the nerves and making my muscles so painful.  So it is laying flat for me another day hoping this will start to relax.  It is exciting around here you know. 

I have kept the curtain closed that gives me a view of my bird feeder.  I don't want to be tempted to take pictures of my cute little birds.  I am really trying hard to not aggravate what ever has happened with me any further.  I think it is helping.  I feel better than I did yesterday.   Hopefully things will start relaxing back there.


I am grumpy.  I keep taking breaks from typing here.  I do not feel like talking as much as I would like the company.  I just want to curl up in a ball and have the pain disappear.  I can neither curl up in a ball at this point or seem to get the pain to disappear.  I can think but somehow transferring my thoughts into words leaving my mouth is lost.  My fingers seem to have the best grasp of what goes through my head. 

I wish Jason was home to curl up around me.  Luka is here but he is also rather independent today.  So I will try to loose my head in my third movie of the day.  Forget about the pain.  At least for minutes at a time if the movie is good enough! 

I'd rather be doing something more constructive than watching movies.  It is not to be. 

I was in search of great socks.  I am in need of some new ones.  But I am frustrated by doing it online.  I don't know which brand is better than another.  I am also in search of a new pair of sneakers..  but I will have to wait to make it in to a store to get them fitted. 

Well another movie bites the dust.  Good news though!  Sat up a bit woozy from this one and things seem to be improving!  So I am keeping up with My Relax My Back Strategy!  Ice and resting flat on my back. 

I however did just sit up to eat some leftover pasta from last week.. ( I know, but it didn't smell.. so it was fair game)  Jason made extra and I am so so glad that he did.  But now I am a stuffed full pigglet!  Well I think I might just be onto my fifth movie for the day.  What a bore!  I am however not feeling worse.. so I think I can safely say that is a good sign! 

What to do...  Well my arms are tired again so until tomorrow. 

Happy Thoughts!
Pink Doberman

GrAn ToRiNo & NaChFoLgE

A friend of mine made a recent post.  Talking about people opening up their minds and their hearts. 

His words touched mine.  I sure try not to judge other people, but I do.  I really really have always tried not to.  I do not like being judged.  In fact I really don't know anyone who does.  I wouldn't mind of course if I entered myself into some sort of contest.  But other than that..

I catch myself.  I do admit I have a great deal of fear about a great deal of things.  I used to be fearless.  I am also rather opinionated and I do realize that my opinions are not always right, and I frequently take adjustments to heart.  However just because I don't agree with you about something does not necessarily mean you still can not be my friend. 

I just might have to try a little harder to be a better friend. 

I am quoting my reverend friend by saying that " We are called to Love.  We are not called to judge."  Check his great blog out, Nachfolge.  Thanks for the great perspective!

I try each day to be open minded and consider how other people feel in their shoes in their life with their troubles and their daily obstacles.  It helps me to be a little more compassionate and understanding.  It helps me to meet them where they are at and to let them know I am listening not judging. 

GrAtEfUL giRL

The questions that go through my mind each day...

Can I get out of bed?
Can I take a bath/shower?
Do I feel well enough to get dressed?
Can I make and drink a shake or should I just grab a bar for breakfast?
What medication do I need today? 
Luka needs to get out, do I get him out now or wait for the meds to kick in?
I have to get Luka some food, do I do it now?
Can I make it to get the mail?
Will I be able to drive today?
Do I need to go back and rest?
Can I at least sit up at the computer?
What household things can I get done? 
Do I need to get anyone on the phone?  Will I remember the conversation?
Is today nice enough I could sit outside?
Can I write a post for my blog at least?
What should I have for lunch?  Can I get something heated up, or can I make a shake?
Maybe I can watch an online class, are there any on today?
I wonder if I can get some strawberries planted?
What am I going to do?  Where can I work?
Ok, so I feel good today, what is the most important to get done?
How long do I have?
What can I do that will be nice to have done for Jason?
Do I have anything that I need to get in the mail?

Well you get the idea.

Mostly I sit here in my bed thinking of things I could be trained to do.  Wondering if I could actually make it through school and hold a job.  I have pretty much come to the conclusion that whatever I do it will need to be done from home. 

I have been lucky to have found some online groups to belong to.  It is pretty neat, you can go to groups.yahoo.com  and find some things of interest for you too!  That has allowed me to stay in touch with people of similar interests.  I think there is a group for pretty much everything. Give it a try!  As a warning not all of the groups are full of kind people!  The ones that I am apart of are great, but I did drop some groups because of their nasty attitudes.  So beware!  Just keep looking and read the past posts to get the feel of the group after you are accepted.

I am home allot and being in a non metropolitan area the amount of visitors that one receives is minimal.  Those that come through the area most likely have their agenda set on high speed and this girl is on slow.  I don't make the best shopping companion or vacation companion.  Which I completely understand,  people have a limited time to do things once they get away from their routine, and they have to get everything crammed in that they feel they have been missing. 

Occasionally though I can meet up with someone and that is fantastic. 

The nice thing is that we have spare beds in our house.  So even if I don't have the energy to spend time with friends or family while they do their activities in the area, I usually can end up with a full house of visitors taking advantage of the free place to crash at night!  That works too!

Just call our house the Pink Doberman Hotel! 

It has been nice that people in our lives, especially family have started to have a better understanding of what our lives are like.  They are accepting us where we are at and that has been great!  It has been a difficult transition for sure.  I think one of the things that has helped me the most to deal with my feelings is writing this blog. 

Besides giving me an avenue to "dump my feelings" it has really been handy to give others an insight to what I or someone like me goes through.  I think many people who go through these challenges have a difficult time expressing how they feel.

The guilt can be consuming.  The loss can be overwhelming.  The anger can be destructive.  The medications can mix everything up.

Today for example, I'd been really hurting.  REALLY BAD.  I had to take more pain meds than usual and they made me a bit snappy.  That sucks because snapping at the ONLY person who is there for me day in and day out is not cool. 

Thankfully I think he knew it was the medication talking and not me.  But still it hurts to hurt.  There is no way to avoid the sting words can cause.  Even if they are medication induced. 

So another question I need to ask myself.. How can I deal with the medication taking over my mouth? 

How can I deal with the pain messing with my emotions and my energy levels?

How can I cope with the loss of memory and the slow to respond to details?  I remember things, but it is like someone dumped out all of the files of my life and I have to sift through things scattered all over the floor instead of pulling them out of organized files.

Writing this blog has also helped Jason understand the emotions I am going through.  The amount of energy I am putting in to being the best I can be.  The guilt I have for not being able to contribute in our marriage.  The pain that I feel in not being able to be more than a trophy on his arm.  The thing I swore I never wanted to be.  Be it a broken one or not.

Thank goodness he does not treat me like that. 

So what kind of questions do you ask yourself each day?  Are you doing the best to be who you want to be in-spite of your derailments?  We all have them. 

Sometimes we have to hop the tracks and choose a new destination.  There is always another direction to head.  Dreams are meant to be lived.  I am working on hopping tracks and heading in a new direction! 

Adventure lies beyond the horizon.  I am looking for hope in the darkest corners.  I am looking for peace in the strongest pain.  I am looking for a future in the hardest of struggles.  I am looking for continued partnership in an unequal parring. 

There are prayers needed for sure.  Persistence will be key.  I have to remember each day is a gift, and if I can move one step closer each day I have to be thankful for that.

I am a grateful girl!
Pink Doberman

HaPpEniNgS...

Today is better!  Finally!  I began to feel better last night thankfully!  Whew!  I can at least move around a bit more now so the house is not nearly as trashed.  I feel very sorry for Jason.  Days I do not feel well, I am not that slick at picking up things I touch.  I do things out of necessity or extreme curiosity and that is about it.  Leaving a trail of mayhem behind me.

Days of not feeling the best can really leave our house in a messy state.  So this morning as usual, the first sign of my feeling a bit better, I try to get around and replace my damage.  So that is what I did when I woke up this morning.  Shuffled my bits around and had it done by the time Jason arrived home from work. 

I did get some pictures done.  They are of my garden.  They are several weeks old now, and my strawberries are now HUGE!  I have been eating strawberries from my garden THREE bowls full so far!   MmmMMmmM!

I love strawberries!  Even better when they are FREE!  So I will be taking some more pictures here soon of my beautiful strawberry plants to show!  Other friends are having good strawberry years as well.

These are the onions that grew from last year as well!  They are now turning to seed!  They have really pretty seeds that pop out from the top of the green stalks.  I have to get a picture of this as well.  I think they are interesting!


Right now out side my window the new little birds are still trying to negotiate landing on the little perches of my finch feeder.  They are having quite the time of it.  One daring chick even is able to manage to eat where the perch has been broken off.  Pretty impressive I would say!  These finches are so so cute!




Look at these nice onions!  I am sure going to do this again next year!  Plant them in the fall to enjoy them in the spring!  So great!  The winter made them fabulously delicious!

Rhubarb!  MMM!  Goes perfect with Strawberries!  I really need to get more plants of this started!  I love Rhubarb! 

The strawberries just went through the fence this winter.  They started taking over the rest of the garden!  =)..  We will have to do some transplanting later.  I have space for them they just went in the opposite direction from where I wanted them to expand. 


Aren't they pretty? 


I am just loving my strawberry bed! 
Life is good!  I can move easier today, I have beautiful new finches to watch, I have strawberries growing in my garden, onions to eat, and rhubarb to munch on! 

We are even hoping to have company today!  That will be fabulous!  I can't wait.  I love visitors!  My last visitor brought me the honey comb I had ordered!  I love our local bee keeper and his wife! 

Amazing things are happening,
Pink Doberman

Right vs. Easy

As crazy sad or simple as it sounds, I have a line on a power chair.  The kind of chair that will support my head while sitting.  The idea has crossed my mind that a chair like this could give me some degree of my freedom back. 

I cannot use a manual chair.  At least not by myself.  My shoulder joints just can't take it.  Those scooter things well none of them seem to have high enough backs to support my head.  (Like the car that my Father lets us borrow for me to drive)  Besides sitting straight up and down hurts.  This type of chair tilts back or at least it looks as if it does. 

I don't want to have this chair to sit in all of the time.  But more to use like a car.  To get me somewhere so I can get up out of it walk inside do my business and then go back out to my car and go home.  These past three days have reiterated the fact that there are times where my body just can't be moving about on its own.  My mind would like to be.  But I am confined to my bed.  How is that different from being confined to a wheel chair?  I see the chair as more liberating.  I do not want to end up in a chair, but for now if all I can do on some days is get around with it outside of the house, then why not? 

I am going to see what I can do to get myself a chair.  One of the other bloggers (Kerrilynn) I know like me is getting one.  So hopefully this will be something I can use to give myself a better quality of life!  This is the dream chair that she is getting!  WOW   Reading her post was not the reason I started thinking this direction but it was conformation that possibilities do exist for me outside of my bedroom on my crummy days!

Read this Blog Post about DeathWalking.  This girl tells it like it is!  I love that!  ( she is a little R rated just an FYI ;)  ) I want to be walking as much as possible!  I just don't want to be stuck in my bedroom when I am not able to be up moving around much!

I dream of getting myself to the park so I can go for a walk!!
I dream of getting myself downtown so I can go to the bank and post office as I please!
I dream of being able to get my own prescriptions any time I want!
I dream of being able to get to the nursing home to visit my neighbor!
I dream of taking my Service Dog Luka out more often!
I dream of going to the grocery store with out fear that I can get myself home!

How fun would it be to go out downtown when events are going on? 

Some hours are good for me some hours are difficult, some days are good some days are difficult... I don't know when they will appear or disappear.

Breathe In, Breathe Out!  I am going to get through this! 

I do not want a power chair a wheel chair or any other kind of chair.  But I hate being confined and I hate not being able to participate in life.  Maybe something like this will open up more possibilities for me.  It is worth trying. 


I dream of lots of things!

I hope you do too! Mostly I dream of a strong body that does not hurt.  Along with people who do what is right instead of what is easy.

I am thankful I can walk!  I am thankful I can complain!  I am thankful for those of you who are still in my life, because a certain portion of my former life now that I have nothing they want could just as soon see me walk off a bridge.  Someday I am sure those people will hit reality square in the face not that I would wish that upon anyone.  I am mad, but I am still dreaming!  I am still going to try to do the right thing although it is not easy! 

I hope we all get our dreams to come true soon!

Pink Doberman

EnOuGh

It would appear that I have once again done to much.  Although it seems as if I have done nothing at all.  It sure feels that way to me.  What ever I have done has been exceedingly too much for my body to deal with. 

I swore that I rested just rested yesterday.  I was sore and achy from my days before.  So I just did as little as possible and rested.  Today you would never know that.  I woke up with difficulty.  I woke up and wished I could just stay in bed.  But I had appointments to keep with my therapists. 

I did not take a shower as I had planned.  I just washed my face and brushed my teeth put clean clothes on and at a IsaBar.  I made it to the Jeep, where I managed to get myself in my seat, and Jason drove me to therapy. 

By the time we arrived I was feeling worse.  The bumpy ride must not have agreed with my body.  I had traveled with a multicolored afghan that my friend had made for me.  I was a bit chilly this morning.  By the time we arrived my teeth were chattering away uncontrollably. 

I made it into the office and things went downhill from there.  Most days like this no one sees me.  I figure it out sooner and I get myself in a bath or tucked in with my electric blanket and just wait for the pain and the chills to dissipate. 

The good news!  I was in the right therapy office for this to happen to me.  They put me on this water jet table.  With blankets and everything!  The office even has a Doctor who is there.  I had taken some medication before we left.  The Doctor gave me a shot of more medication, and they wheeled me out to the Jeep for a ride home. 

Glad I was there.  I hate suffering through these periods at home.  Especially when I am alone.  I am so glad Jason was around.  I've been in bed the rest of the day.  But I still feel like I've been hit by a truck.  Guess my body needed a break. 

I am so frustrated.  Today was also the last day that I had therapy at that clinic with the amazing therapist.  He leaves for Idaho this week.  I wish him well.  I will be starting with a different therapist there when I return.  Not sure when that will be yet.  I am going to let my body calm down and then get something set up. 

Every thing else is on hold til then. 

Funny this morning, the Doctor who does my facet ablations couldn't keep his appointment with me today either.  I am glad.  As I would have had to call and cancel at any rate.  So that is already rescheduled.  Phew!

I sure would love to get that over with!  Taking some pain away from one part of my body may help me cope. 

So... Jason snuggled with me this morning after we got home.  That does not happen often at all.  He was so nice about laying down when I know his mind was running a million miles a minute.  This boy hates to snuggle and stay still. 

But he did it today.  It was so nice! 

So tomorrow.  I will be once again resting...  Maybe it will be nice enough for me to rest outside?? 

One fun thing...  My bird feeder outside my window... the finches have multiplied!  There are lots of new little finches feeding at my feeder!  I am loving it, they are learning to fly skillfully enough to land on the little perches to get some food!  What fun!

Now if the pain radiating all over my body would go away.  Oh my.  The medication just does not do enough some days. 

GiViNg Up bUt NoT iN..

So my challenge for the weekend has been to start sitting differently.  This has been highly difficult.  In addition to how I sit, I often find my self sleeping improperly as well.  My legs and my mind are adjusting.  With the exception of stressful periods of my day I am doing well.  I find that I am able to do what I thought was impossible. 

I have given up soda pop 12 or so years ago. 

I gave up having a candy bar a day...

I have given up most fast food... 

I have given up milk and regular ice cream.

I have now given up gluten.

I have practically given up driving... ( but hope to continue to add that back in my life)

I am giving up the hope of having the life I once had, in loo of choosing a new path.

I am sure this won't be the last thing that I will give up for the betterment of my life.  But this is something that I always have considered part of my personal identity.  Something that I have always done since I was a small child.  Something I even did in my sleep, a place with myself I can become calmer...  I am going to have to create a new place.   A new Zen if you will because this yoga pose is out my window. 

I am now giving up my security sitting position.  ( legs folded across each other infront of  me )

  In fact, I am now turning them out the opposite direction.  Believe it or not, that is my latest addition to my physical therapy.  No more piling my legs atop one another and placing them on my chest all curled up when I sit in chairs.  Oh my what a struggle this is.

I feel as if my whole life is being turned atop of its self.  I eat shakes for breakfast instead of oatmeal or cherrio's.   I like it better.  I feel better.  I am sure I will also feel better after this change as well.

But right now, I admit I am not liking it.

By the way a few days ago I posted about getting a bite of ice cream.. Soy/Coconut ice cream that is...  I never did go and get the goodie like I thought I might.  But tonight I went for it.  I cut up my pile of strawberries, added three scoops of soy ice cream.... then found the remaining HOT FUDGE! 

Can you say HEAVEN!!???  I CAN!  I ate it all up!  That was supper.  Well that was my first course.  I was hungry tonight!  Following my frozen joy, I then had the weird combination of feta cheese and smoked oysters, and since I still seemed to be needing something, I ate fresh spinach and more feta cheese with that spray salad dressing.  Oh my!  That did the trick!  This girl is full. 


I don't recommend the smoked oysters and feta combination... that was not that fantastic.  But my body must have been craving something in those items.  Between craving and that is about all that I could think to make.... simple to open a can of those oysters!  And I love them!  I know, yet another strange thing about me! 


Well any way, my confession is out and about.  You may decide to stop reading because my strange food combination.   I hope not.  I will  try to keep my posts about them to a minimum.   Or... you could share some of your favorite strange food combinations with me?? Maybe I will give them a go??

What are you giving up??

With everything I have given up I have added in something to replace it.  I drink tons of water, eat lots of fruit, drink shakes and bars instead of breakfast cereals, choose fork food over fast food, eat coconut ice cream instead of milk cream, and sit with my legs turned out instead of turned in. 

I add something in where I take something out.  My life is about choices.  I am choosing to do what I can to make my life better for me to live. 

I am also giving up my bad habit of negative thinking that I have developed and honed over the past six years.  I don't like the person I have become.  I am taking back my mind.  I have done it before, I am going to do it again.  I am going to be happy come hell or high water....   Well.... maybe I should rephrase that, since I neither want hell or high water...

I am going to be happy, no matter who is not happy around me!  Now where are my positive thinking cassette tapes???  They are around here somewhere...



Perfection Exception,
Positively Perfect!
Pink Doberman

My SeRviCe DoG ~ LeaRn A LiTtLe AbOuT uS...

Jason and I are a great team.  When Jason can't be around then it has been the biggest blessing to have Luka.  Luka and I are a team as well.  In fact it is often that Jason and Luka and I make up the best team.  Both of my guys on either side of me. 


This gives Jason some freedom and me some security.  Jason should be free to wander with out worrying about my every move.  And I like being to do as I please with out dragging him along. 


The other day Luka was not with us, I needed some ideas on what to wear for a wedding.  So Jason went with me through all of the clothes racks in this nice store.  He felt awkward.  Like he was less than because I was dragging him and looking at every rack of clothing and he had to be right by my side.  I think he must have got some sympathy looks from people. 


I am always so grateful when he does things like this with me, but I think he was wishing that Luka could have come with us for that trip.  =)


I get asked lots of questions from people.  I am happy to answer them of course.  But I thought I should provide some enhanced information as well.  So enjoy these links below! 





Service Dogs Are Important to Many People!   Click this link to learn a little about why Luka is so important to me!

What you can do to support people with disabilities invisible or visible...  One thing is to support legislation in the State of Nebraska!  Please take a moment to email or call Nebraska State Senator Kate Sullivan and give her your thoughts!  She is revamping the legislation to present to the State Legislature in the next Legislative Session!    It is important to people like me.  It may also be important to you or someone you know and love.

SENATOR KATE SULLIVAN
District 41
Room #1019
P.O. Box 94604
Lincoln, NE 68509
Phone: (402) 471-2631 begin_of_the_skype_highlighting              (402) 471-2631      end_of_the_skype_highlighting
Email: ksullivan@leg.ne.gov



Click to read my speech that I presented to the Nebraska State Legislature Committee in charge of passing on this legislation to the full body of the legislature.  (  Note.  The legislation from last session did not pass, however, Senator Kate Sullivan is revamping the legislation and will be presenting it again in a stronger more comprehensive form )  She is open to ideas and thoughts.  She is one of my Interstate People!  


Read about Melissa and Shiloh and all of her great information! 

If you have an assistance dog check out this site!  There is even an upcoming conference!  How cool is that?  You can learn from experts, network with others, and find ways to make your life easier!  I found out about it on Melissa's site.  


Luka and I are a pretty good team.  He has professional training I don't.  Well, we were not trained together.  We are just learning to work together over time.  Our vocabulary was different, but our goals were the same.  We are adapting.  I have learned more words, researched training methods, and been quite observant.  Luka, well he is a doberman, and dobermans are super smart of course.  He is just adapting to what I need.  He is just awesome.  

He really does not like it when I get in water.  Although being trained as a seizure alert dog who can really blame him.  I love water so he is getting used to me being in the bath, we have not practiced much around pools this year, but last year we were getting better.  We will keep working at it as long as he is willing and able to head out with me.

I still need to see if he actually swims.  I want to take him to a lake to find out.  That should prove to be interesting!  =)

We are hanging out in the rain today!  Gotta love the freshness that rain brings! 

Here is something else to think about!  Melissa Mitchell has a great blog, and since Take Your Dog To Work Day Is Pretty Popular.. Read her post to learn how to do it and have the best results!!  Really her tips are great to use with your dog be it a service dog or just a regular household buddy! 

Thanks for learning with me today!

Endless Possibilities!,
Pink Doberman