Déjà vu ........

Many times in life we are given opportunities to get a glimpse of past events in such a way that we relive them - just a little.  Déjà vu (French pronunciation: [deʒa vy] ( listen), literally "already seen") is the experience of feeling sure that one has already witnessed or experienced a current situation, even though the exact circumstances of the prior encounter are uncertain and were perhaps imagined.  Last night I had such an experience and it was awesome - sort of!

Hubby and I attended a reception and banquet for the local Urban League.  Now if you know me at all, you know that I rarely leave home and surely don't attend functions like this any longer.  Okay - he talked me into it and he needed to go so I thought it would be a good night out for us.  The evening started with a reception at our Governor's Mansion - neither of us had been so it was very nice.  We met a most lovely young women serving drinks at the bar and she so impressed me with her poise and demeanor.  When I went back for my second diet coke, she remembered what I already had and asked if I would like another.  So refreshing!  When we were ready to leave, I had this impulse to thank her - I was not sure she would know what I was thanking her for, but just the same I felt compelled to do so.  I walked over to her in the hustle and bustle and she read my face and said Did you need something?    I put my hand out to shake hers and embraced it with my other hand and said thanks so much.  The surprise and wonderful smile that flashed across her face was the highlight of my evening.

I learned a long time ago that those who serve us in any capacity are angels in their own right and since I have not normally been the servee but the server, I feel strongly about appreciating those who do so with grace and kindness.  Back to my Déjà vu....in my old life I was a meeting planner and admin and the second leg of our evening was a reception and dinner at our city conference center.  Ah - as we walked into the center, I felt the old pangs of nervous energy and excitement.  Throughout the night I was mesmerized with the flow of the dinner and the hard work being done by the  hosting organization.  This is one of the few times that I have attended a dinner such as this and not had to worry about every detail and the behind the scenes effort.  So refreshing and sad at the same time.

Now I fully realize that I am no longer capable of doing a job like this, but it is so hard to let it go.  Thoughts cross my mind that I could and would and wish that I did.....but then reality walks back in when I try to extricate myself from my chair to make my way to the restroom or when the pain of sitting too long start to fill my consciousness rather than the program. 

As surely as the wind blows, the pain, discomfort and more welcome me in spades by the time I reach home and I had a very restless night of pain alternating with other issues.  It is then that I know that my dream of doing such work is long gone but......I still know in my heart that I am so fortunate to have once done it and to have a life left that is still worth living.  I could spend a good bit more time on the mourning of a life once lived or move back into my new world and make the most of it for what it is now.  That is what I chose to do - it is not always easy but it is doable and it makes the path easier if we don't dwell on the past - you cannot move forward if you are looking backward.  Chose life rather than the past.

When Your Faith is Stronger.....

This past week has been an unusual one for me - I am thankful that it is out of the norm that I have this type of week.  In the last few days, a friend I went to high school with passed away suddenly at 55; a friend that I used to work with lost his beloved 14 year old daughter; and an online creative friend who had had a miscarriage 3 months ago found out this week that she is now carrying a molar pregnancy - no baby and the cells were malignant and had spread to several of her organs.  She has since had an emergency hysterectomy and will have to begin chemo within the next few days.  She is the age of my older boys - just shocking!  A young local weather man lost his Grannie - a Grandmother he shared with each of us almost daily - we all felt we knew her too.  A young women that I know only through my reading about her, is experiencing much pain with one of her children and mental illness - the pain that only a parent can experience when their child is in pain.  While all of these events are unrelated, I am touched by each of them and I feel so much pain and empathy for each of these families. 

I realize that in the scheme of things within the universe, these events happen all the time and the world keeps turning and the sun still comes up every day.  This week has given me pause - a reason to look at things a little more clearly and to realize even more that time is limited, life is short, and we must make the most of every day.  I have spent a good bit of my life in limbo and not really appreciating that this is not the rehearsal and life is not infinite.  While most of us will never know how many hours or days we have, we must breath deeply and do our best to enjoy our life and live it to the fullest - to the best of our individual ability!   So---when, I am tempted to bemoan my own situation, I will remember these brave wonderful friends and their own crosses to bear and how well they have handled adversity and pain and aspire to be much like them - if only a little.

A Brain is a Sad Thing to Waste.....

My life has been a little upside down for the last few months - okay, it's always upside down but maybe a little side ways too.  ;o)  For those of us with chronic illness in our lives, sometimes it is hard to pull out a list of thank yous even though we try, because-----we know it could always be worse.  Today brought to mind that we do become complacent and take things for granted.  I am just as guilty of that and sometimes more so than most.  But - I am trying to learn to make myself more aware and I do believe it in turn helps my health and thereby the lives of those around me.  Truly - frame of mind - outlook - perception - these things can make all of the difference in our quality of life.

A few months back - in June - I was working on this very blog post.  We had had a very bad storm the night before and lost power.  We have a pump so that means no water, etc. as well as electricity and it was very hot!  It was out until about 10:30 that morning - not unusual - about 10 hours all together.  I woke early that morning probably because it was hot and I didn't sleep well.  As I finished the first paragraph of this post, I began to feel really bad and very sleepy.  So, I stretched out on the couch feeling very thankful that the power was back on and so very thankful for air conditioning.  A short while later I was awakened by the pounding and bouncing of my heart inside my chest.  What in the world - it was as if someone had connected power and was charging it up.  I sat up abruptly which made matters worse.

It was then that I realized that I was in A-fib again - just much worse than ever before.  What do I do now I am thinking.  The last time this happened I had just gone to bed and I waited it out for about an hour and when it didn't go away, we made the trek to the ER just to have it stop about 5 minutes after arriving.  Those of you who have had this will know - if they can't hear it then it is a waste of time.  So - this time I was determined to have it documented.  My son was playing an online video game in his room and I didn't want to alarm him.  I know that this is not going to kill me any time soon so I decide to walk to my neighbor's house - we have nurses living on each side of us.  It is approximately 100 feet or more between each house.  I decide to go for the mail first which is across the street from my house - thinking that maybe it would go away.  By the time I reach the mail box it feels as if someone is strangling me and I am getting shorter and shorter of breath.  So I try the first neighbor on the right - I feel I am about the pass out when I make it to her door - both cars are there and the garage door is open....but..no answer at either door.  Choking is getting worse - I am thinking I am going to drop right here in this heat and how long will it take for someone to find me.  Of course I am dressed like a bum and looking worse than a homeless person.

Miraculously I keep going and I make it to the neighbor on the right side.  I know they are home but no answer at first - what in the world.  Finally the nurse comes to the door - they had been out back and could not hear me knocking.  As soon as I tell her what is going on, her expression changes and she takes me inside and finally she can witness the bumpy crazy out of control heartbeat that I am experiencing.  Okay - if I die now I will feel better because my family will know that this is REAL!!!

Those of you who have chronic illnesses will understand this frustration - no matter what happens to me now it is excused because of the diagnosis I already have.  Long story short, my neighbor talks me into letting her call an ambulance so that treatment can begin right away.   They clocked the heartbeat at around 189 and confirmed it was in fact atrial-fibrillation.  Since this was at least the third time I knew this had happened I felt so vindicated!  After about 7 hours in the ER, they were able to convert my heart back to a regular rhythm and with a small amount of begging they allowed me to go home if I promised to see a cardiologist on Monday.

I met a wonderful cardiologist a few days later and he now has this under control with some changes in my medication and severely limiting caffeine intake.  That's a bummer but it is doable and after about 3 weeks of the new regimen I adjusted fairly well.

It has been a pretty busy year on the health front - I had testing for memory issues and speech problems as well as an updated MRI.  From that the conclusion is that I have cognitive impairment with no explanation as well as depression and anxiety - who didn't already know that???  I also had an MIR of the cervical spine and found that along with severe OA there is a bulging disk at C6 and C7 that is causing the little electrical responses and a whole lot of pain in all sorts of places.  Soon I will have an epidural for that and also the L4 and L5 issues and hope that can put off any thing more invasive for a while.  So along with the ME and Fibro, bad knees, carpel tunnel and severe OA in my right hand, and Padget's Disease in the tailbone, I am still considered to be doing good by my Internist - oh and lets not forget the high fat lipids, high blood pressure, high cholesterol, hiatal hernia, GERD as well as asthma and allergies.  Did I forget anything??

I don't mention this long diatribe (a term a family member used once) to bring attention to myself or because I am feeling sorry for myself.  It is because we all have to be aware of our health, our bodies and what is being done to safeguard our health!  We are not only our own best advocate, we are really our only advocate.  No one knows what goes on with you as well as you do and I am absolutely confounded when I visit my doctor's office and he really has no idea what is going on until I remind him again and again!  Now I understand he has lots of patients and people who are much worse off than me and I truly understand that people like me are very frustrating for him......but we still need care and undivided attention for the few minutes we are in front of them!  Don't accept any less - you are worth it!

Life is great and I appreciate every day that I am fortunate enough to have!  As I have said before, while I am not dying today or tomorrow - I, and all of those like me, still deserve health care and attention to our needs just like any other patient!

Mary Hart.....WTH?????

OK - so I am watching television waiting for our frozen pizza to bake.  Entertainment Tonight is having a special good bye episode because host Mary Hart, is leaving after 29 years.  It is filled with music and dance and laughter and tears.....and then - there it is - I realize I am wiping away tears.  What the hell!@#!$%.....OK, I like Mary Hart but this is ridiculous.  After a few minutes I realize that I am not shedding tears for Mary - they are for me.  I realize that I feel her sense of loss so completely because I have had to say so many good byes over the last 20 years and unlike hers they did not come with music and cheers.

We all have endings to things in life - all good things must come to an end  - and all that, but how you say good buy - how you end something makes all the difference.  Also - the reason you end a particular thing is important as well.  Mary is moving on in life and doing some things she really wants to and she leaves feeling loved and missed.

I think back over the last two decades and remember loosing the only job I had held in my adult life - I had worked there for over 17 years and I loved my job.  But, having said that, I knew that I could no longer do the job due to my illness and I knew that I was laid off - more than likely because I was not well and the company needed to regionalize our department and it was known that I would not be able to meet this challenge.  I came to believe that was the best thing that had ever happened to me and the right thing......but the loss and resulting mourning were inevitable and I can still reach out and touch those feelings.

Again a few years ago, I was forced to give up my administrative business after 14 plus years because my health continued to become more and more unpredictable which makes me unreliable.  Again - no balloons or music - no fancy send off - just loss and pain and mourning.

While watching Mary Hart's tremendous, although somewhat sad ending, it is clear that this is a celebration.  I have to admit to myself that I feel cheated - I have worked for over 34 years of my life and illness has cheated me and taken away any pride I could have relished in moving on from these endeavors.

Well, Mary has moved on already to her new life and I am cutting that pizza and ready to put this out of my mind once again.  I know there is nothing to gain by wallowing in these feelings of loss - for those of us who suffer from unacceptable, invisible illnesses, our time for celebration has not come.  We must pat our own backs and know and believe that we did what we could at the time.  We have to keep moving through life and do what we can to accept our new situations and appreciate them for the value they bring to our life.

If anyone had told me 20 years ago that I would not be driving, rarely leaving home, depending on someone else for my transportation and making many of my decisions for me, I would have said NO WAY!!!  Well Mary Hart - my reality may not be anyone's dream, but it is doable and it can be the best it can be and I am thankful each and every day for this life.  As I learned today from another person ending something in their life (Oprah) - we must inhale.....don't just breathe.......take it all in!

Shopping.......Ahhhhh.....

Shopping - oh how I used to love to go shopping or even just browsing!  How do you get the things you and your family need??  Groceries, clothing, just the little things you need or want to chose yourself - what a dilemma.....at least I find it to be.  I rarely can manage it any longer and even if I do have a good day and try it, there will be a hefty price to pay for the time out.  I am very fortunate that my hubby manages a grocery store and therefore he can take care of that chore.  But---there are times when I would so love to take myself to the store, pick out food and be able to prepare a meal for my family all by myself.  I can no longer do that and I miss it.

I am learning to shop online and most of last year's Christmas was done that way.  It is so wonderful to have that option and I am thankful for it but it still is just not the same.  Things don't always look the same in a picture and many times don't fit right or work the way you thought.  But, with a bit of research and reading through feedback when you can find it, it can be done.

Since my hubby works lots of hours and is gone a good bit, I am trying to make our time together less about his having to drive me out to do necessary shopping.  He doesn't mind, but I know it keeps him from being able to do things he enjoys.  What are your solutions for shopping?  Can you still do it on your own?  Do you enjoy it at all?  I would love to know how others handle this challenge.  It will surely help us all not to be shopaholics!  ;o)

Pain is Now in the Small Things.....

For a long time now, I have been able to control my pain somewhat by what I do physically.  This past December that came to an end - abruptly and does not seem to be changing....the hard thing is that I am not sure why.  I would suppose that is the question we - those who are afflicted by these chronic illnesses - ask most often.  What did I do???  What changed???  I didn't do anything different we tell ourselves.  As a long time member of this club, I can tell you there is no reasonable explanation on why things change for the bad or even the good.  We must learn to roll with the flow and just play the cards as they are dealt each day.  I try to make light of it and that is how I deal - your coping method may be different but as long as it works for you, that does not matter.

Please don't think I am complaining when I say this - this is just reality and I express it only in the hopes that if we can voice our realities then we help each other.  I know for me, it is so comforting to know that I am not the odd ball - I am somewhat in the norm somewhere.

The badge in this post is from my hero Misty - she creates these to give us a laugh and to make us feel better, if only for a bit, and to voice what we think each and every day!  I cannot tell you the number of times I have been told - But you look great - HA I say!  You don't see the extreme dark circles I have labored to cover and the way that I used to look - I was not always an old hag - really...;o)  Anyway - I know we all do it - we make assumptions, opinions about what we believe about others and I do it too.  But.....having said that - please try not to.  You may see me and say I cannot believe she is disabled or sick at all, but come and spend 24 hours with me.....you will walk away enlightened.  I am sure that is true for most of us - we compensate and work hard to be as normal in our appearance and in what we do when we are "on" but that is not our reality. 

As I have droned on here before, my reality is one of sleeping 12 hours or more a day and not because I am lazy but because I have to so that I can have a few alert hours each day.  My reality is being in pain just doing normal things like washing dishes or emptying a dishwasher, falling unexpectedly, forgetting what I did 5 minutes ago, being extremely irritable for no reason at all, only getting dressed when necessary, rarely wearing shoes because of the pain, and I could go on and on.......but I won't.  Aren't you glad.....;o)

But just know that when you see someone like me and make an assumption that they are fine, just remember that NO one would chose to be this way - We survive and make the best of this life and smile and go on because what choice do we have.  For our sake and that of our families we put one foot in front of the other and just hope that most people are not STUPID!  ;o)

So You Hurt.......So What.........

How many times have you heard this??  And to go with it - I hurt too and I am tired too!  We need better words - explanations - more to say about what is going on inside our bodies.  I am sorry, but if you haven't been down this road, you just cannot imagine - you can try, but you can't get there.  Full disclosure - this is a bit of a rant but I felt I had to get it out.

I am one of those people, as I have said many times, who is glass half full....more than likely because I am just so very relieved not to be where I was just a few short years ago.  I was trying to continue to work and be miserable and there seemed no end in sight - except maybe death.  That sounds extreme but it is true.  When I finally gave up on that illusion and admitted I could no longer pretend, then my world got a little brighter and has been since.

I try to reach out to those that are suffering the same, and stay positive and offer a little insight into what I have learned the hard way.  Never, never do I intend to imply that I know it all - no one does in this case - the all is unknown and the future is unknown for these types of illnesses.  We walk the path of uncertainty and if anyone who walks ahead of me passes back a few good tips, I am happy to receive them.  I, in turn, wish to keep an eye on those following my path - it is not one I would choose and not always very pleasant ---- but - if we hold hands and share our experiences we can make the best of this journey and realize that it may not be what we saw for ourselves, but it can still be an enjoyable life, just different.

Having said all of this - I can only say - be open to those who reach out for your hand, try to trust and listen for they may be carrying just the nugget in their backpack that can be useful to you ---- for many times those we entertain are angels unaware.  Don't always assume that concern and care are intrusive and annoying - many times they are just truly care and concern and a true desire to reach out.  How will you ever know if you keep those hands shoved in your pockets tightly clasped until you are bare knuckled?  The answer is - you won't!  Take a chance - live this life the best it can be lived.

Okay - I warned this was a rant but I get so frustrated by the stigma of this mysterious invisible illness - it causes us to doubt each other even when we are the same.  Until we decide to work together and learn from each other, no one else with take us and the ugly "F" illness seriously!

What's In Your Basket Today..........

While I was reading a devotional yesterday, I saw another way that we can look at our issues and make decisions about how we are going to deal with them.  No matter what our life involves, each day we have our own daily events, symptoms, family situations, etc. to deal with.  I have read a lot about the spoon theory and I do love this comparison and explanation from the But You Don't Look Sick web site.  Another take on this idea for me now is What do I have in my basket today and more importantly how will I deal with my basket----how do I choose to deal with the items in my basket each and every day.  Because, you see, the way we deal with it is so much more important than what is actually inside.  This is a hard concept at times but so true.

For some, their basket may overflow with pain, frustration, different symptoms along with their regular daily life.  Some days my basket is like that but many days there are more good things to contemplate.  I used to tell my husband that each day I could throw all of my myriad of symptoms into the air and see what landed in my lap for that day - you just never know.  One day, I may feel okay not be as tired or weak and get a few things accomplished.  The next I could be in pain, exhausted, sleepy and depressed all day long.  On another, I might experience something that is new to the mix and totally unexpected.

So - I am trying hard - its not always easy - to look at each day and take a peek into my basket to find what is inside for me - there is only one thing for certain - and my basket can change as the day goes on - but there will surely be obstacles and issues along with other daily things we all experience.  Now - what I decide to do with my basket and how I handle it is all so important.  If I let it overwhelm me and don't take charge then it will over take my day and I will loose more time in my life.  But.....if I take it by the handle and decide how I will handle its contents for today ---- just for today, tomorrow is another day and another basket, then I can make better use of my time, enjoy this life as much as possible and become stronger and better able to cope.  It is an exercise and the ability to deal with our basket gets better over time and it does get easier - day by day and basket by basket.  What is in your basket today and how will you deal with it?

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.