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?