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!