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Clarifying the Complex

Thursday, February 14, 2013

I am trying to live through a very complicated moment in my life right now. After having joined a new team yesterday and having thrown out an invitation for Sparkies that may be interested in being buddy/mentor types, the responses that I have been getting lead me to believe I should try to shed some light on my situation for those that are taking the time to try to help and encourage me...so here goes..

Although my Spark data shows me as a relatively new Sparker, this is not really the case. My journey actually began more than a year ago during the holidays (Thanksgiving and Christmas) of 2011. At that point in time I was a brand new emptynester trying to figure out what to do with myself and not doing so great at it...way to many options available for me to easily process.

I had arrived at this moment with a personal and family history of Heart and/blood issues that had led to my having multiple, misdiagnosed heart attacks and eventually a double bypass at the age of 38...12 year ago. In Jan 2010 my younger brother had dropped dead in his tracks from a massive heart attack and then in Feb 2010 one of my older sisters did exactly the same thing, later that year my younger sister began having baby strokes. All this in addition to the fact that I my oldest child (girl) has a very serious form of Lupus which presented itself in a stroke and two grand mal seizures at the age of nineteen and was followed by many, many more complications through the last 12 years...the two that appear to having the most life impact on day to day life being a blood clotting disorder and arthritis...and all the meds and such that go along with that and their effects on her life, not good to be sure.
In spite of all of this I had allowed myself to become incredibly unhealthy. I had rolled my SUV six years before and broken my neck in two places and spent time in a HALO and had the whole metal rods and bone fusions to repair it all. I had been extremely lucky as I only have minor permanent damage..mostly ROM issues and stiffness. While rehabbing from this I had allowed myself to put on 30 lbs. I did this mostly by lack of motion as I was often in pain early on. Prior to this point I had led a very active life and of course this lack of movement and weight gain affected my heart and it's health...still I did nothing about it all...except stop the weight gain after the first three years.

When the holidays of 2011 came rolling around I had a new wrinkle thrown into the mix in the form of stomach issues. I found myself in a situation where if I attempted to eat more than just a tiniest amounts of food at any given time my stomach would throw such a fit that it would throw my heart into fits sending my heart rate and BP insanely high and forcing me to use nitro to control the pain...a thing I had rarely ever had to do.
Can you say 'wake up call'??LOL I realized that I had played my cards out and that it was either get things fixed or give it up and likely end up with more heart surgery or possible death...I decided to at least give it a shot at bringing myself back to some form of health.

I joined Spark and did all the 'right' things. I was stunned at how well the program really worked. I did a little more and a little more for months and by the time spring came around I had lost 20 lbs but MUCH more importantly I could actually do things...all kinds of things that I had not been able to do for the last several years. Not only could I do things like climb stairs again I discovered I was able to do things like turn over my gardens all by myself, haul around begs of mulch, put in new pathways and the like and eventually cleared an unused, over grown area of my yard and put in a little patio almost entirely by myself...things were looking pretty good..I was a happy camper for the most part...still needed to lose more weight but I was totally functional..MOST of the time...there was one little fly in the ointment that had begun to show up...I kept having issues with my hands or my wrists or my shoulders...I easily explained this away as all my new activities and workouts being responsible for it all..I learned to adjust to it all for the most part...wrap this in an ACE bandage this day...just compensate for that lack of shoulder movement that day and so on....I got through it all and kept moving.

At the end of the summer I moved my program back inside and picked up where I left off but since I was even stronger now then when I had moved it all outside I had to intensify my workouts and up the amount of time I was doing them just to even get my heart rate up or even get anywhere close to muscle fatigue...mind you not anything amazing by most peoples standards...but still a massive improvement for my own self. I was having more issues with my arms and more often..I assumed the two things were cause and effect....continued to force my way through things and do the best I could believing it was the only way to keep things going on the right path.

My son came home from college in Dec. for the break between semesters..I always find that to be a huge distraction so I put my workouts on hold for the holidays. In the second week of the month I had a short bout with the flu but got over it pretty quickly...all that appeared to remain was muscle and joint pain in ..you guessed it my hands, wrists, shoulders and now my elbows...it floated any place it wanted to on any given day but was now a constant..there were no more days of nothing hurting..it was always somewhere and escalated to a point of even waking me in the night as I would turn in my sleep and bump something...swelling was now a big problem also..I tried to adjust what I was dong on a daily basis but things would just change on me apparently with no rhyme of reason..there seemed to be nothing I could do to stop anything from taking it's own course all I could do was just deal with the after effects as best I could.

After about 4 weeks the kid went back to school..I attempted to get back on with my workouts and found immediately that I was unable to maintain any form of consistency..something always hurt and I was intensely afraid of doing more damage. I had to finally admit to myself that there was more going on then just leftovers from the flu or maybe I moved wrong while strength training or my hand is swelling to the point where hubby said it looked like it had been run over by a car because I had spent hours digging in the garden. It came to a point where I couldn't/wouldn't even lift a pot of cooked pasta to drain for fear of dropping it..days of not being able to grip my knife to be able to chop veggies...one day so bad that I couldn't hardly lift my arms over my head to shampoo my hair without nearly crying in pain...I began trying to research what might be going on. The symptoms were so crazy random zeroing in on anything was impossible...go see a doc? I couldn't even say one day to the next what was going on let alone make an appointment saying what was wrong....not like I would have done so any way as likely as not..I tend to be stubborn that way..

Meanwhile while focusing on this I was making a critical error...I had begun treating the pain with things like Aleve...totally forgetting (or rationalizing) the damage I would be doing to my stomach again...and the consequences that would bring with it..I began to have GERD type symptoms again and the occasional heart troubles that they caused..still I focused on figuring out what was going on with the muscle joint pain getting more and more frustrated and discouraged with each passing day. Finally in an entirely frustrated state I decided just to give up and give in to it all..I quit spark and had some pretty dark days. Now I am not a natural born quitter and so this didn't sit with me well or for very long my mind rebelled and continued to try and answer the questions still rolling around in there....One day a lightbulb sort of went off in my head...it shined a light onto the fact that if I were thinking/hearing about my daughter I would immediately say "look when you got the flu you triggered an immune reaction and put yourself into a serious flare and you know that you need to get on a round of more steroids immediately" ..it would have been a no brainer...12 years of experience would have made that perfectly clear. Trouble is that to anyone's knowledge I don't have Lupus...or did I and we just didn't know??

I contacted her for more details of what I should be looking into and perhaps be doing. She immediately responded with soooo much information (for which I thank her) that it took a long while for me to be looking into it...RA was naturally a part of that but it was not the first thing on my list to read up on...I had a very mistaken idea in my head that if something like that were at the root of all this that it would be affecting my WHOLE body not just these isolated areas..after all I have no trouble at all with say my feet or legs or hips (occasionally my right knee but that is the one thing actually that is understandable as there are other things involved with it)

Super Bowl Sunday arrived and with it a whole new focus. I woke up with symptoms of a nasty cold and a couple hours before the game started came the rest. Projectile vomiting and fever and the like...and of course since I had already been trashing my stomach with OTC meds the return of the incredibly dangerous heart problems...really not good!! Stomach acid on a roughed up esophagus whew! A whole new set of worries, horrible days and nights now and a week later I had finally stabilized myself back enough to look into RA a bit...imagine my surprise and devastation to realize that the answer had been staring me in the face the whole time...if not RA then something so close to it if it had been a snake I would be dead...

That brings me to, what I think is the final issue at hand here, why am I not running off immediately to seek a confirming diagnosis?
A couple of reasons.
One: through the years of my own battles and seeing my daughter seek answers I have learned that many times it is best to get a good handle on what is going on first..the more complicated the situation the more important it becomes to be able to give information that is correct. You know you better than anyone else and I have seen with my own eyes the whole run around from one appointment one more test one more doctor one more specialist again and again...what a waste..for me it is easier to get down to a strong personal position first...take the time to rule out non factors and such
Two: It has been my experience that it makes no difference at all what is going on with me when I walk into a medical facility the standard approach is to slam me into the hospital and begin assuring the fact that my heart isn't getting ready to explode..bless their hearts, bless their training, bless their caring and concern but the reality I live out in the country, I have been dealing with this for 12+ years, it is imperative that I know when my heart is in danger. I am intensely aware of the end result if I am wrong. Sometimes the very methods that they are attempting to solve a non-issue with merely aggravates the one that is really at issue..to put into a word 'muddle' it can all tend to muddle the big picture...not to even touch on things like the expense and the most valuable thing on a dairy farm the time investment..time being a precious commodity around here
Three: at this moment, it doesn't really matter to much to me. If it walks like a duck and quacks like a duck does it really matter if you call it a chicken for a short time while trying to keep a wolf from attacking the flock??
Lastly: I am in the most unfortunate of fortunate circumstances...I already know a fantastic Rheumatologist...I have had the pleasure/displeasure of knowing of one for the last twelve years...one that would come completely aware of my entire family history all the ins and outs of the progressions of my families developing disorders.

Okay Sparkies, that is what I have got for now..do not fear I am on it just doing my best to skip a few of the more redundant steps and do my best to repair other issues before jumping into a whole new branch of things.
I had/have already intuitively started doing simple things like ROM first thing in the AM before even making a pot of coffee...it just made sense to me that warming up muscle and getting the blood flowing might prevent injury and so far that has been the case..all troubles are now confined at elbows and below and are not gone by any means but much more workable than in the last months...I have also begun to learn how to ask for help when I need it..a very unnatural state for me but one it appears God thinks I should be learning.

Thank you to any and all that have/or will yet shown me interest and concern and I welcome any input that any of you may offer.




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Lisa
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  Member Comments About This Blog Post:

PATTY140 2/15/2013 12:39PM

    Oh Lisa! Are you sure we aren't related?? I realize at this point we are the blind leading the blind, as there are no cures for any of the things you mentioned. But we sure can try to get through it with support of people who understand.
We can do this!!
LIke you said.. *Fight the good fight*
Hugs,
Patty

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DEDICATED2HIM 2/14/2013 1:48PM

    Lisa,
Wow woman!! you've had a lot on your plate to deal with. I'm still not really clear on why you have not sought a diagnosis and treatment for the RA.....I am having the same arm issues as you. I have got two shoulders and two elbows that need to be replaced and for one reason and another they have not yet been. BTW in some of these catalogs with gadgets for people with disabilities they have a gadget towash your hair with when youcannot reach your hand to your head andalso a comb and a brush for thesame thing. I own all three things and they make my life eminently easier...Google it and get them...they are only $10 each.

So,now you have come back to Spark...you know whatyou need to do in order to be healthy...but now you have one more roadblock. However roadblocks can be hurdled but you really do need to get this amazing rheumy on your team. You need every possible advantage and he sounds like a great one.

Good luck. The RAD team is here for you....and so am I.
you can do this.
Cynthia emoticon

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