Falling Down, Falling Down.........

Nope - I am not talking about the children's nursery rhyme and I am surely not My Fair Lady.....;o)  It seems that I seem to be falling down at every turn lately and although I have been very lucky about the damage it does, it is a little disturbing.  I know this is common for issues like mine but it is getting pesky.  For the first time, last week I fell face first --- I still cannot figure out how that happened.  I was walking and then the next thing I knew is the floor was coming to meet my cheek very quickly and there was nothing I could do.  What a loud boom!  I know the holiday rush makes it easier to over do and get hurt - but I am trying to take my time and take it slow - not always easy.

Since then, I have fell a few more times and this morning I found I had a huge bruise on my ankle and foot and I cannot remember for the life of me, hitting it.  Does any of this sound familiar.  I know my balance is a problem as it is for most but the frustrating thing is that there seems to be no warning - one minute all is fine and the next I am speeding to the floor or hanging onto whatever I can grab. 

Solutions - well for one a cane is a huge help but I am embarrassed about using one because I feel that people will see me and think that I don't really need it.  Most of the time I don't, but who knows when I will......so the smart thing would be to be prepared.  We can't worry about perceptions - it is important to do what is best for your particular situation.  There will always be grumbles and misunderstandings about these conditions and if I had a dollar for every time I have been told "I have some arthritis too" or something similar then I would be very well off. 

I believe the lesson here is - do what you need to do in order to take care of yourself - no one else can make those decisions for you.  Your doctor can help you find the best solutions and possibly save you lots of black and blue marks!  Take care during the Holidays and enjoy - just don't over do --- Christmas in a cast won't be fun.

Before You Know It..........

When I was young and I would ask my Daddy a questions about time, his answer was always "Before you know it".  As I get older I have realized that is one of the most profound things he ever told me.  We would be driving somewhere and I would ask - "when will we be there?"  - his answer would always be.....before you know it.  When my boys were young they would ask "When will it be mornin time?" -- before you know it....one of my favorite memories - I can still hear their tinly little voices.  That became our ritual with their prayers and tuck in.  When I asked one of the boys last night if they remembered this, it hit me that this one statement is so prophetic and just a good no nonsense piece of advice

When will I be all grown up?  When will it be Christmas?  When will I get married? 
When will my children be grown?
When will I be old and gray?

When we are young, adults always tell us to enjoy every minute because time passes so quickly and you must make the most of the present.  It seems like just yesterday, I was young with babies in my arms - 4 sweet little boys and I blinked my eyes and they were graduating and grown and it truly seemed like it was before I knew it!"  Don't waste time hanging out in the past or dwelling there --- nothing good can come of it.  Try not to waste time worrying about the future because tomorrow it will be here and you will have lost time in the present worrying about it.  Live each day to the fullest - find the good in it and count your blessings - even though some days they may be hard to find.  As my hubby always says age is a high price to pay for maturity but we don't have to wait until we are old to enjoy it.  All of this sounds like so much trite advice and just cheery nonsense but it is more true than we know.

All of this came to me when I was mulling over the fact that I had been in the throws of this illness for at least 20 years....wow 20 years - I have let it define me and let it push me to let life pass me by.  There is no excuse for it and it is my fault -- no one elses - sort of a subconscious decision - not one I have made with thought or intent.  Well - we all have to be present in our lives and along with the daily fight remember that you have to take time to live your life and make most of it.  Make decisions with living in mind - not submission.  Poke the bear, smile, laugh and enjoy because no matter what we do, good or bad......it will all pass us by Before you know it!

What I Am Thanksful For......

A while back I wrote about all of the things I miss.....and I do still miss them and more, but I have to pause each day to remember what I am so very thankful for.  This not only keeps things in perspective but helps me to live in the moment rather than thinking about how great it will be when this thing or that thing happens.  This list is not in any particular order - other than the first entry... ;o)

• I am always most thankful for my 4 wonderful boys and my husband of 25 years - my family.  They are  my life and I always tell them that as long as we are all still here, nothing can be too bad.  I am so very fortunate that they accept me with all of my issues and go on as if all is normal
• The wonderful young women that my sons have brought into our lives - such a blessing to our family
• I am so very thankful for the roof over our head and the little bit of real estate we call our yard - full of birds and squirrels and so much more - now covered in bright colored leaves and a fresh breeze
• For the food we eat - each and every day - when you struggle in life, you come to realize that you have taken much for granted and one of those things is that you will always have good food to eat
• My wonderful menagerie of pets, a 19 year old calico cat still clinging onto life; an 11 year old crazy Jack Russell; an obsessed fat boy Beagle/Jack Russel mix and our baby kitty - 5 year old tuxedo cat - it wouldn't be home without them
• Internet, television, cable, electricity, heat, water, hot water and so much more that I used to completely take for granted and think that they would always just be there
• My wonderful little over worked laptop - it gives me a window to the outside world and keeps friends close that I might not otherwise ever see or hear from and allows me to continue to challenge my ever shrinking brain.... ;o) - use it or loose it
• Special found good close friends like the one I gained when my Son married and I got his Mother-in-Law as a special gift and the fact that she now lives only minutes away from me
• A purpose in life even though I can no longer work - I love to craft for a cause and while what I make may not be that special  -- it means something to children in need and I gain so much more than they do
• Yarn and fabric to keep my hands busy when I have the energy to use them and more free ideas and patterns shared through the generous crafting community on line

I could go on and on but these are the highlights. I have to admit that ticking these off always helps me - otherwise I might spend so much more time on that list of things that I miss and that does no good and only keeps me from accomplishing what I have left to do.  In the last few months my sweet old 13 year old van died of natural causes and somewhat like a dear friend, I have mourned it's death.  With it's demise, it took my ability to drive out for short distances - to be a little independent and act normal - to be on my own for an hour or so.  I know many of you in the same place that I am, have long ago given up driving but I have not gone willingly and even though I could drive, much of the time I probably should not! 

So I must choose to make this something to be thankful for - I am sure there is a reason for it and I know in time I will see it.  But to see the good things that come to us, we must take our focus off of what we perceive to be losses and focus sharp on the things to be thankful for - you might be surprised to find that list is so much longer - trust me!

Autumn - A Wonderful Time of the Year.....

I absolutely LOVE this time of the year - Fall!!  Every year, as I have written here before, I try to hard to live in the present and enjoy every  minute of it.  In our warm Southern climate, it passes very quickly and before you know it December is here and we are in the throws of Christmas and the new year planning.  I so want to breathe in the sweet fall air - in our case absent of humidity and the small cool breeze along with the beautiful reds and golds and oranges of the leaves as they flutter from the trees.

If I don't make myself more aware it will pass me by in the blink of an eye and I will be dreaming of the time when Fall visits once again.  Life with a chronic illness is much the same - if we don't consciously live in the moment we will get bogged down with the mundane daily issues of our illness and miss life as it flies by us at warp speed.  I cannot tell you the days, weeks and years that I will never get back, that I have wasted obsessing and dwelling on something that I can't change and in the long run may even make things worse for my health. 

Don't be afraid to enjoy - go outside and take a short walk if you are able, visit a place where Fall abounds and soak it in....put some little reminders of the season around you at home and enjoy the color of it all.  It will give you a lift and a smile and believe it or not it can make you feel better both mentally and physically.  Life is short - engage!

Step Outside Yourself.....

Believe it or not, one of the best ways to heal yourself or at least deal with your symptoms is to Step Outside Yourself!"    I would never have thought it but it is so true.  The minute you begin to look for ways to help others and ease their pain, you ease your own and gain so much more than you give.  I am not preaching here and believe me, I am no saint.  This all began out of my desire to create and then grew to creating for a cause - this ideal changed everything and has become my purpose in life.  Other than my husband and boys, this is the mainstay of my existence.  I believe it partly gives me a way to give back for all of the blessings I have received through my bout with this illness and it also is therapy for me both physically and mentally.  You can't possibly understand the depth of this way of thinking until you try it - it is magical - I promise you.

My passion is babies and children - but yours can be anything in the world - it just needs to be something you feel passionate about.  The rest will follow.  All of my adult life, my babies, my boys have been the greatest joy and the times when they were young were the best in my life and my absolute greatest pride and joy.  I still smile to myself when I think of the fact that I have 4 boys - the greatest gift in life for me as well as the husband of my dreams.  Start with something that gives you joy or that concerns you and go from there.  There is so much information online to help you with any cause you feel strongly about.

So......the prescription that has done the most for me is Stepping Outside Myself......it really works.  Give it a try and you will be rewarded so much more than you could ever give!!

The Funk is Here......

We all have different ways of knowing when the gray fog is coming over and sometimes we can stop it before it takes over.  Other times we let it consume us and we can't bring ourselves to fight the force.  I am there and trying hard to climb back over the wall - so far no luck.

It comes in many forms and hits in many ways but the end is always the same.  A down time - a funk,where I fight to get out of bed, sleep more and more, and can't seem to accomplish much of anything.  I let my meds run out and forget to refill them and the longer that goes on the lower I go.  I miss my doctor's appointments and without the doctor's visits I can't get the refills I need, and round and round we go.  Sooooo that's where I am at - every day I tell myself I will make a doctor's appointment, leave the house, remember to do what I need to, but each day ends the same - still feeling bad that I cannot kick this.  It is the egg and the chicken again - is it the depression that causes all of this or the illness that causes the depression that causes this to happen.  I guess it doesn't really matter how it happens because I truly don't believe there is any way to avoid it.  It just is and I believe that the fact that I can see it is at least some sort of movement in the right direction.

Normally my worst down time is in the winter - cold, dark, day after day.....this year it appears to be the repressive heat that we have experienced.  It has kept me prisoner here at home - some weeks I don't leave at all - my daily trip to the mail box (that is if I make it out of the house) is my highlight and my only exercise.

Oh well - enough of that - I have to get a grip and grab hold of whatever I can to pull myself back up and feel better......and I know I will - because if we don't try and we give up, then the illness wins and we lose and I am just not ready for that.  Now I just have to convince my body of that and put one foot in front of the other.   Even if I have to crawl - wait no - I can't do that my knees are shot.  Gotta laugh so we don't cry.

To Be or Not To BE.......

Last night I stumbled upon a Facebook page that really startled me and I have to admit that it makes me very anxious.  To make matters worse, I clicked on the infamous "like" button before I realized what it really was.  Very foolish use of my "likes" and now I cannot stop this garbage from arriving on my News Feed on a very regular basis.  The page was a rant against those with Fibromyalgia - sounds tame enough but for those of us with these invisible illnesses it is the very thing we fear and deal with on a daily basis.

This experience brought to mind when my oldest son was a teenager and we took him in for braces.  We knew that he had several rotated teeth and definitely needed the braces, but we had no idea how bad it was.  When my husband and I sat across from the orthodontist and he showed us the castings of my son's mouth, we were shocked.  I asked the Dr. how in the world all of that could be going on in his mouth and you really couldn't tell it.  He said without hesitation, "he is compensating" - he has learned to hold his mouth in such a way that you cannot tell that he has a tremendous over bite to say the least.  Several years later we learned that he had done the same thing with his ADD - he never showed any of the usual signs of over activity, etc.  He was so well behaved that we should have known something was up.  ;o)  He was struggling so hard to stay in control and handling things on his own but it would have been so much easier if he had been able to get some help.

That brings me back to our Facebook hate monger - he is the epitome of  what we all believe that others are thinking.  So, as a result, many of us hide our illnesses, compensate and pretend that we are fine.  So much of the time, only our families and closest friends know what we go through and how we all suffer.  I did this for many years to keep working - I was told time and again that I would lose credibility and my work if I didn't do that and funny thing is ---- I lost it any way.  I worked way to hard, did way too much and over compensated and it cost me - big time.  It made it harder to fight for my Social Security Disability, made it harder in the long run for my family and has taken away any pride I had in the work I did for over 14 years.  It also ravaged what little good health I had left.

But - the hero in this story is a friend named Misty Roberts - she puts herself out there for us - she becomes our voice and stands up for us when we are unwilling or unable to do so.  She takes on all of the bad guys and is not afraid to take the barrage of ugliness that some are willing to throw our way.  So - we all have to decide if we can Be who we really are or continue to compensate - over compensate to keep the peace.  I am not a good example and I have been embarrassed and unable to be honest about my health, and I surely am not advocating whining and complaining - that is not good for anybody - as my MIL would say - "That ain't never good" and she is right.  But - we can all find constructive ways to have honest productive communication about our illnesses and work to move forward in the understanding that doctors, family, friends and the general public need to have.  Misty is the perfect example of this and we can follow her lead.  Her web site is http://fmcfsme.com.  You can also find her on FaceBook.  If you want good honest conversation and information, this is the place to find it!  She is our Angel in a sea of criticism and speculation!

To Do or Not To Do........

The week of July 4th is always a very busy time around our house.  Three of our four boys have their birthday and with the holiday it gets a little crazy.  I do love it though!  The problem arises each year when I try to do way too  much and don't listen to the signals that trouble is coming.  None of us want to believe that we can't - I remember my Daddy saying "Can't never could" to me when I was little to discourage my whining and saying "I can't" which I often did when faced with new things.

The odd thing about chronic illnesses is that most of us continue to try to do things we know we cannot and we refuse to accept our limitations.  That makes life difficult for us and our friends and families.  But.....there is a fine balance here - we still have to try and push to do whatever we still can because if we completely give up we won't be able to.  So - each holiday, birthday, event, etc. we have to reassess what we can do on this day, this year, this particular time and try to make the best decisions.  Not always easy and I tend to err on the do way to much side and pay for it later.  I am told this is typical for those with these types of diseases.  Someone in a support group I belonged to once told me that if you don't want to do anything and don't believe you can, you are more than likely depressed----but when you want to do so much and try but can't, it is more likely you are physically ill - I believe this to be true.

So this year I did and I am glad that I did and we had a wonderful day to celebrate the 4th as well as three birthdays in our family - all together.  By some standards, not a big celebration but wonderful all the same.  At the end of the day, I felt good about the efforts I was able to make and I believe in pushing myself and fighting because "can't never could".....

Onion Pie and So Much More.....

Much of the time I have trouble boiling water and most things I try don't seem to turn out these days.  When I find a recipe that is something that my hubby and I love, I get pretty excited.  When I make it (even remember to buy all the ingredients) and it turns out just as good as we imagined, then I am in heaven!!  I used to be a fairly good cook - no Martha, but decent.  Now it is hard work and way too easy for me to get confused and that is good for nobody - not even my dogs - even they know when to back away.

I tried this recipe last night and just crossed my fingers and hoped it would be eatable - well if I do say so myself it was fabulous -- just a fluke I'm sure but wonderful just the same.  The recipe is below - I did use fat free half and half and about a cup of the cheese and I added some garlic.   It all came together and it cuts so beautifully - could have been that Paula Deen Pie Dish - I don't know.......but who cares - it was Great!!!


Onion Pie
CDKitchen http://www.cdkitchen.com
Serves/Makes: 6 | Difficulty Level: 3 | Ready In: 30-60 minutes
Ingredients:
1 premade pie crust, 9"
2 cups thinly sliced Vidalia onions or other sweet onions
2 tablespoons butter (can use olive oil for half or all this amount)
3/4 cup milk (used fat free half and half)
2 eggs
3/4 teaspoon salt
3/4 cup packed grated sharp cheddar (used Swiss)
paprika (optional)
Directions:
Preheat oven to 350 F. Melt olive oil in skillet over medium heat and saute onions until tender, about 5 minutes. Arrange onions in crust evenly.
Beat eggs, milk and salt in a bowl and season with pepper. Pour egg mixture over onions. Sprinkle with cheese and a dash of paprika, if desired.
Bake until knife inserted in center comes out clean, about 30-35 minutes.
Recipe Location: http://www.cdkitchen.com/recipes/recs/67/Onion_Pie20310.shtml
Recipe ID: 31615
Don't forget to stop back at CDKitchen and write a review or upload a picture of this recipe!
This recipe is from CDKitchen http://www.cdkitchen.com
© 1995-2010 CDKitchen, Inc.
Onion Pie http://www.cdkitchen.com/recipes/print/31615,20310,s=6.html
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The Squeaky Wheel Gets the Oil.....

Yesterday while feeding our various pets (we have a zoo) I was reminded of the old adage, The Squeaky wheel gets the oil, meaning the one who complains the loudest and longest gets attention first.  We have two dogs and two cats - crazy, I know - especially for someone like me but they bring us so much joy.  Back to my story - the dogs - Maddie a Jack Russell and BJ - a Beagle-Jack Russell mix are normally always first.  As a matter of fact they get so excited about their breakfast that I don't feed them unless there is no one else around to do it.  They knock me down, cause me to spill the food and then commence to fight over the bowls and who might have more......then they beg for treats - bones, etc. - non dog food type stuff and believe it or not they both Love carrots - the little tiny sweet kind and will literally attack you for one.

Then there is the old cat who lives on the back porch - she just turned 19 on March 17 - no, really!  She is a calico and we got her when she would fit in the palm of your hand and she had a Siamese Daddy - quite a mix.  She is living on the porch now because it is warm and it helps her old bones and because she can't remember how to use a litter pan -- and we all know how that story ends. She is also very noisy like most Siamese and she makes the long MEeeeeee-OWwwwwww sound that will wake the dead and reverberate your brain.  Then there is the baby - Jessie - she is a tuxedo kitty and just turned 5 years old.  We got her at 5 weeks when we thought the old one was dying once again but turned out to be on her 15th or so life.  This little fat kitty does not meow or fuss or cause any real problems other than scratching a little now and then.

So when it is feed up time and I am handling the duties, I notice that she quietly watches me feed the others, tries to stay out of the way and then she makes a few little peeps and looks me in the eye as if to ask - my turn now?  So yesterday, I explained to her that the others make more noise and trouble so that is why they get attention first.  She turns her head sideways as she often does and looks at me as if to say "that's ok - as long as you don't forget me" - so sweet.

That brings me to my point - maybe those of us who have the invisible illnesses that we do, don't get the attention we need because unless we fuss and complain and call attention to ourselves, we are not noticed.  Personally, I have had a problem with that because I don't like complaining so I figure I don't want to be that person.  But......in this case we all must make an exception.  If you are ill and the problems are not apparent, you must stand up for yourself - be vigilant - keep track of your symptoms - call them to your health care provider's attention - don't sit and wait for them to be discovered because I am here to tell you it more than likely won't happen.  In this instance you must be the squeaky wheel and don't stop until someone comes with the oil can!!

Sun and Sand..........

My family has a vacation planned!  The first one in over 8 years - exciting - yes; worrisome - yes that too!  Why, you say??  Vacations have not notoriously been a good thing for me and I don't want to ruin my family's good time.  I hate being the downer in the room --- no fun at all. 

Believe it or not, even a vacation can be a stressful illness causing event for people with CFS/ME/Fibro and more.  The heat, sun, travel, having too much fun, can all cause exacerbation of symptoms and land you in bed for an extended stay.  I so remember years ago, going camping with my family (which I loved) and getting to much sun and then having a huge outbreak of fever blisters all over my mouth and nose - so sick and we had to pack up and leave early.  It took so long to get over that trip and I was still working full time at that time and no one could understand how I could go back to work and be worse off than BEFORE vacation.  Such is the life with these illnesses.

So here we are trying to give it another try and I am trying to be optimistic and get excited.....cautiously but excited.  Things to remember - lots of sun block (have to find one that does not cause breakouts), drink, drink, and drink water -- can't tell you how many times my hubby has had to go out in the middle of the night for meds for bladder infection while on vacation or at a conference (caused by the Interstitial Cystitis) and that is no fun - seems to always happen when all stores are closed.  Be careful what I eat and don't over do or over eat.....or over anything.  Easy right?  Takes practice but it is doable.  Then there is the drive to get there - don't get car sick - sit in the right place in the car; take meds before the headache comes and do all that you can to avoid any infections - sinus, bladder, ear, etc. 

I am surely not complaining --- just trying to make this an enjoyable time for my family and hopefully I will have some fun too.  ;o)  Just being with them is fun enough for me.  Many times I stay behind because it is just easier for them and for me and I do it knowing that they will enjoy the freedom; freedom from the worry and aggravation of having to deal with a chronic illness.  It wears you down and no one can understand unless they have lived with it.  Those of you who know - understand and relate.  We do what we have to and are happy to do it.  Sooooo here's to vacation!!  Enjoy ---- but not too much.  ;o)

Some Things Get Better While Others Go Down Hill......

For most of us, each day brings new challenges and struggles - for those of us with autoimmune issues, these can be complex.  It always amazes me that I will have a day or two that is fairly good by my standards, and I fall for the joke my body plays on me.  I start to think - am I better??  Am I really sick at all or is this all in my head?  Maybe I can do whatever I want and I just don't realize it.  Maybe all of my symptoms and conditions have disappeared and I was not aware of it.  Then --- as suddenly as the good days came, they are gone and the wave of pain, fatigue, confusion and too much more flood me with the reality that it is not in my head and yes I am still just what I thought I was  - someone who is very limited in function.

What is worse is when I begin to believe that I can do what I dream about doing -- over doing --- then I am quickly reminded what the cost of over doing is!!!  Days or even weeks of more debilitating symptoms than what I normally experience on a daily basis.  Therefore, we walk a tight rope - do enough to help but don't do too much.  Add to that the fact that this can be a different equation on any given day - it is not a sure thing or something that we can know for sure at any time.  Today - maybe I can wash and fold a couple of loads of laundry and be ok - tomorrow that may be too much.  It is all trial and error and more trial.  I tend to push the envelope and I personally believe that is I why I am not completely bedridden, but it could also be why my condition is moderate to severe rather than mild - who knows.  The only thing that I know for sure is that I am going to try to live this life that I have in the best way that I can as long as I can take a breath.  I would rather push a little to stay alert and enjoy my family and I believe that we each have to fight so that this monster does not over take us and take over our lives.  Don't ever give up the fight!  That is what keeps us going.

I am the Face of Fibro/CFS/ME

There are many things that most don't know about me - and would not care to know.  Only those who have lived within my four walls know the complete truth.  I share them here in the hopes that we can laugh and cry together as we realize our similarities.  If you suffer from a chronic illness then you will truly understand.  Walk with me through my day.

1.  I am a very high maintenance female, but, believe me it is not in a good way and it in no way is about beauty.  I have to take lots of meds, be very careful what I eat, obstain from most things I enjoy just to be able to get out of bed and try to be a functioning person.

2.  No I am not on street drugs, I rarely drink alcohol and do not have a drinking problem, and I don't abuse prescription drugs......this is just me.  I fall a lot, I sway and loose my balance, get confused, forget words, look ragged most of the time and have extremely dark circles and bags under my eyes.  Unfortunately I did not have the good time to bring on this 24/7 hangover - this is just me - the me that I have become.

3.  I am not unhappy - why you say....because for years I had to pretend to be normal and try to work when I knew I was not capable.  I couldn't be honest about my issues and no one wanted to hear it and probably still don't.  But - now I don't have to feel ashamed and I don't have to pretend any longer - I am what I am and I am just happy to be alive and have my family and friends.  I have gone through the "Become" stage just like the Velvateen Rabit and what I am is what I am and that's ok.  My family and good friends accept this and don't question it any longer.

4.  I have purpose in my life even if it is smaller than what I once had, it is purpose all the same and we all need that - even if we don't think we do.  While my purpose may not matter to anyone but me, it gets me out of bed and keeps one foot in front of the other.  That is a wonderful thing.

5.  I am like Sleeping Beauty except with out the beauty part.  I have to sleep at least 10-12 hours a day to function and many days it is much more.  This has been very hard to accept but as a good friend tells me, what is the alternative??  I will take the sleep rather than the Big sleep - the permanent one.  :)

6.  Like many I have good days and bad.  Over the years my good days have turned into hours but I am thankful just the same.  Bad days can last well for days and days - sometimes months - especially during cold weather.  I mention this not for what it does to me but for how hard it makes things for my family.

7.  If I see you out somewhere (which is unlikely) I may not remember your name, even if I have known you for years.  I will more than likely know that I know you but maybe not in what context.  I worked with large groups of people over the years and most especially in my admin business and it is difficult now for me to put people in their correct place - did I go to school with you?, did we meet at a conference?, did I do work for you?  I know this sounds crazy but it is what it is. 

8.  Many friends have told me the age old thing - "But you don't look sick!" when they do see me.  Well if I am out of my house, I have taken a good deal of energy to look somewhat presentable and believe me it is not my norm.  I went to the doctor a couple of weeks ago in total frustration - feeling so ill and frustrated - in my sweat pants, white t-shirt and no make-up and my hair looking like a friz ball.  I had taken a bath and just dressed and went.  I normally never do that because I look like a life long smoker on a binge looking for a large box to spend the night in - seriously......and I have never smoked in my life.  Anyway - you just don't get the same service and understanding when people see you looking like that.   When anyone who does not know me well comes to my house, I notice they are noticably shocked at what they see.  It is what it is.

9.  Most days I stay in stretch pants and t-shirts because they are comfortable and they don't hurt.  Sometimes I sleep in the same ones I wore all day long.  I wear the same thing day and night and rarely wear shoes because they hurt to put on and they hurt my feet. 

10.  I no longer am able to take a bath or shower every day - shocker!  Not because I am too large or heavy - I am not that fat.  :)  It is because it takes so much energy that if I shower and wash my hair, I am spent for the day.  It is not likely that I will be able to do a lot more until the next.  I have to take hospital baths - some people have a funnier name for that, but it is when you wash everything important at the sink and change your clothes.  It works.  Washing my hair is a huge deal even though I don't have much.  I cannot dry it because I can't hold up the dryer for the time it takes.  Washing my hair and leaving my house does not happen in the same day!  Every now and then I make it to get my hair cut - several times a year - and I love it when they wash and dry it for me.  Hubby loves it when they blow dry it.  :)

11.  When I go out, I have to spend an inordinate amount of time trying to find something to wear that covers all of the rashes, scars from rashes, blisters, etc. and won't hurt so much that it will expend more energy than it is worth.  Hard to believe that once upon a time I used to dress every day in heals and hose, etc.  Wow - who was that girl????

12.  Yes - you may have seen me trying to get to a bathroom without passing go or collecting my $200 - if and more than likely, I am out and eat or drink, it is very probably that I will have a bathroom emergency.  I have been very lucky and have so far been able to make it without incident but just recently came dangerously close to a very bad incident in the Target store which would have left many shoppers very unhappy.    Their restrooms are just too far away!!!

13.  I can drive a car and I have a license to do so but you don't want me to.  I only drive within about a 5 mile radious of my house.  Rarely if I have to go further, I have to prepare and many times have to cancel a doctor's appointment because I just can't do it.  There is just too much going on and way too much for my rattled brain to take in all at once.

14.  Please don't watch me eat.....it doesn't really bother me but it may bother you.  I use a butter knife to push and shovel food onto my fork in neat small amounts so that it makes its way to my mouth without taking a side trip down the front of my shirt or worse.  For some reason my hands have decided that they do not have to follow the direction of my brain all the time and  take over when ever they feel the need.   The same goes for drinking - sometimes my head shakes or sometimes inexplicably I spill my drink or just drop it.  We go through lots of glasses and dishes.

15.  The hardest thing for me to admit is that I am no longer dependable and I think that I can do so much more than what is reality.  I say I can do things and I truly believe it when the words come out of my mouth but when the times comes to actually do it, it is a crap shoot - and my odds are not good.

Ok - so that is my top 15 - I could go on but let's not.  I know anyone who has read this all the way to the bottom had heard enough.  I don't disclose these things because I feel sorry for myself or want sympathy - I do it because I feel in my heart it will help others in the same position to believe that no matter what, life is worth living and good can come out of most anything.  We just have to mine the gold and sometimes that is really hard but it is worth the dig.

Cooking Can Be Easy!!!

A good friend gave me the following recipe for Baked Potato Soup and I can't believe how easy it is.  I know for many of us cooking can be really difficult and I don't do much any more - for my family's sake and mine.  :)  This is very hearty but also very tasty.  You can make it with meat or not - I have two vegetarians in my family so it is always nice to find easy recipes like this.  Let me know how you like it.


Tony Roma's Baked Potato Soup
You can substitute vegetable stock for the chicken, and imitation bacon bits for the real ones for a vegetarian dish.  Serves 6-8
2 Medium Potatoes - Baked
3 teaspoons butter
1 cup diced white onion
2 teaspoons flour
4 cups chicken stock
2 cups water
1/4 cup cornstarch
1 1/2 cups instant mashed potatoes
1 teaspoon salt
3/4 teaspoon pepper
1/2 teaspoon basil
1/8 teaspoon thyme
1 cup half and half

Optional Garnish
1/2 cup shredded cheddar cheese
1/4 crumbled cooked bacon
2 green onions chopped

I saute the onion in the butter and then add to the soup pot along with the stock and water. Then cut your potatoes up (sans skin) and add to the mix.  I then added all of the seasonings and let simmer for about 30 minutes.  I then added the flour and mashed potato flakes and whisked a little to be sure everything was disolved and smooth except the potato chuncks.  Then add the half and half and stir well, reduce heat and simmer for about 15 minutes.  It is delicious!!!

Mirror Makeovers Traveling Book........

 I was given a wonderful gift by a friend and I know that anyone who reads it will agree.  Please visit the link below and check it out.  Even for those who don't have cancer, it is a like a welcome visit with a good friend.  I have a different type of chronic health issues and I really enjoyed it.  I found the book to be uplifting and inspiring as well as a guide or map to handle those difficult times in our lives as women.  If you feel you would like to sign up for the traveling addition, please do - it is a wonderful experience!!  There is also a video link below - check it out as well!!

www.MirrorMakeoversTravelingCancerBook.blogspot.com

http://www.youtube.com/watch?v=9choRJAmoYA

 

A New Year.......

I really can't believe we are well into the first month of 2010!  When I started the process of trying to obtain Social Security Disability Income, this year seemed too far away to even imagine.  Now that we have made it through the long process and I look back and, like much of life, it just flew by.  I was very fortunate that my case moved along - it could have taken much longer but the assist from a wonderful group called Allsup made all the difference.  I would greatly recommend them to anyone going through this and especially to those who have something that may be questioned such as an autoimmune disease.  They plowed through the issues and knew what to do at every turn.

It is funny - you say to yourself again and again - when I get my disability settled, I will do this or that and you dream and wonder what it will be like.  I am so very thankful and I can't even begin to comprehend how I got here but none of those things that I thought I just had to do or have matter any longer.  At the end of the day, you just want a little security and to be able to keep what you have, eat and have some health care and try to help take care of your family - similar to when you were well.  I am forever grateful.  Now, I fill my days with thinking about how, in my humble way, I can make a difference and help others who will follow me and have the same, although different, journey - because we all must handle the walk in our own way and with our own set of circumstances.  But - if I can make it just a wee bit easier for someone else, then I will feel that I have done something worthwhile.