A Journey Not Just For Me!

This morning I sit here and really feel I ought to change my blog title to just METAMORPHISM of BTRFLYNANA...I just might do that!!!

Life is such a journey and it is all in how we embrace that journey that determines our "present" state of mind...

I am sitting her sighing and at the same time smiling at the road I continue to move forward on! Yesterday I met with my cardiologist...yes I call him "my" cardiologist as I feel we are going to have an opportunity to get to know each other pretty good....my cardiologist has confirmed that I do have a blockage in the left ventricle to my heart. He also was very encouraging that I continue with the Lyme specialist and follow her lead in addressing the issues of treating the Lyme....even if the first set of blood work comes back negative he said as the bacterias associated with Lyme can be very difficult to detect, but that all the symptoms are there. He went on to agree that the bacteria can effect the heart, also he is my fathers cardiologist and given my family history of heart disease he will also monitor those areas of concern too. In two weeks I will be going back to his office for what is called an Echocardiogram/Doppler and then the following week in his office they will do a Myocardial Perfusion Scan test then from there he will decide what path will be taken. Sadly he said the Lyme could have been taken care of if caught in the beginning with a week of Tetracycline! Who knows now how long it can take to rid a body of the bacterias associated with Lyme.

What a journey this has been the last nearly five years. I have been to countless doctors, my family, friends and I have cried seas of tears due to some very devastating diagnosis' that we have all had to endure on this path.

Along this road my life has been touched and continues to be touched by countless folks filled with their own heartwarming and sad stories of personal trials and illnesses. I love you all, I hold you so tight in my heart...no wonder it hurts so often! There is no doubt your lives have had a permanent effect on mine.

I am so thankful to my Lord and Master for all he has given me! Each new day a blessing in itself to be embraced; without having been thrust onto this path I never would have learned all I have.

Our one daughter echos she will not accept anything new until she has proof, I can't say that I blame her as this journey has had such profound lasting effect on all of us in so many different ways. For myself I see this as the light that is illuminating my road, finally pieces of the puzzle coming together and a picture laid out before us; a picture for all to see. This journey is not just for me but for everyone that is on it with me....you are reading this well then you are part of this journey!

I am very much aware of my outer appearance...OK, yes, I am a bit obsessive when it comes to not going out of our home with my makeup and hair not done...I even do my hair when I am going to have it colored or cut! Some of us go to great lengths as to lie about our age (no I don't do that and never have!) as I sit here and type this I think to myself I am proud to be 50, I am proud to wear the wrinkles; no I don't want to be younger because where I sit today...well I have experienced so much in life...that I am proud of who I have become, the years of living and experiencing life, the very place today that I have evolved to, the wisdom and knowledge learned; yes, all necessary in forming the woman I am this very moment!

I am proud that I love myself enough that I have had the insight to pursue my nagging internal voice that something was not right! I cannot count the times on this nearly five year journey that I have had doctors (and there have been many!) tell me I have anxiety, that all I am experiencing is stress, that I don't require the tests I am requesting....That I really ought to think of consulting with a psychiatrist! How absurd!

I have learned I have the right to FIRE my doctors...that yes indeed; THEY WHO WORK FOR ME...and if I am doing a BETTER JOB than they are...well something is wrong with the picture. That it is today not only possible, but also necessary to be able to work side by side with your health care professional to a degree so that you get the best optimal care available. It is OK to ask questions and pursue avenues necessary to get answers and/or tests we so deserve.

There definitely are some wonderful doctors out there; doctors that take the time to go to the "blackboard" and write the patients physical complaints and scrutinize from there what is going on with their patient...those are the ones that don't just stick with the textbook illnesses...they are willing to go the extra mile or two or four or whatever it might take. They look at the entire patient, the LISTEN....I do believe as patients we have an obligation to ourselves to monitor our progress and make notes and charts of changes we experience so that we are aware of how the medications and/or treatments are effecting us. Had I done this earlier with the Comtan I would have seen the change sooner!

I would be a liar if I said this road has so far been easy...no not at all, and for sure it has had some very large boulders along the path...but for the most part I continue to move forward, stumbling at times, yet persevering forward! My road is not yet finished, no not for a long time...

I smile today and seriously consider renaming this blog Metamorphism of Btrflynana...

God bless you all and Thank You Lord for all today holds for each and every one of us!!!

Lyme Disease vs Parkinson's Disease

Nearly five years ago when all my symptoms had began I started doing research on the Internet as to what possibly could be causing all my aches and pains. It was in the beginning of our journey that I had an odd blotch that went from under my chin to the top of my collar bone.; the dermatologist hubby and I went to at the time had no idea what could have caused it or exactly what it was. He had given me some Prednisone and topical cream to help and on my way I went. This little did we know was the start of a very long journey for us and our family.

Shortly after other rashes started and more symptoms....Hubby and I had asked so many doctors from my MD to rheumotologists , neurologists and even the movement disorder specialist at UCSF who diagnosed me with Parkinson's Disease, if I could have Lyme Disease...they all answered the exact same way...."You don't have Lyme Disease, you have Parkinson's Disease" Obviously this has never been truly accepted by me; even more so recently when the diagnosis of MSA came about, in my heart I just felt I did not totally fit the correct pattern for this disease. All the more determined I was along with the encouragement of our daughter to delve deeper into looking at other possibilities. One day sitting at my computer I decided to type in Lyme disease and Multiple Systems Atrophy and I came across the Canada Lyme website and a case regarding a man who died diagnosed with MSA, when the brain autopsy was completed they found the Lyme bacteria known as Borrelia!

At that time our daughter found a doctor about one and half hours from our home who specialized in Lyme Disease and at her insistence I made the call. I was told the doctor was not accepting any new patients at that time and I pleaded with the nurse on the other end of the telephone to please hear me out....I told her how we had been from doctor to doctor to figure out why I was so ill. I went on to explain how I had such great difficulty in walking, horrible muscle spasms in my calves and throughout my body and my list went on. She told me she would contact us the following day....the following day came I got inpatient by three o'clock and called only to be told to my sheer delight that the doctor agreed to see us!!!

Now I have to admit that when my digestive system stopped working properly in November; well at that point I thought to myself "that's it the doctor is right I must have MSA" as this was surely part of the disease process...only a month later to find out that once the medication Comtan was removed from my system...walla as you all know...the digestive system started working just fine!

Wednesday the big day had arrived for the appointment hubby and I had been waiting for with the Lyme specialist. The appointment time was at two o'clock; we were forewarned that she typically can run anywhere from one to two hours behind...it was a little after 5 o'clock by the time we finally were able to see here...she was so worth the wait!

Without blood work results it sounded that she was competent that we are dealing with Lyme; all the symptoms add up along with the funny splotchy areas on my inner legs and outer arms; however, being cautious she is going to have the Western Blot testing done for Lyme along with two other Lyme tests, which I don't remember what they are, she is also going to check my copper levels as they were elevated prior and have not been repeated, she is also going to recheck to be sure that there is no Autoimmune disease, she was very concerned and a quite a bit perturbed that no one has ever done anything with the fact that I had an abnormal ECG in 2006, which clearly showed and stated that there is a blockage to the heart ... the type of blockage that it showed she said was classic for the Lyme bacteria! I have to also add that I did let her know that there is heart disease on my fathers side...my dads mom, his twin brother both deceased from it and my father has had several heart bypasses....yes I am going to see a cardiologist next week!

I cried and told her thank you for taking the time to really listen to all hubby and I had to say, she kept my copy of the binder I made for her that had all lab, doctor notes and imaging results. She said she felt she had to apologize to me for her colleagues in the medical field that have clearly let me down, that it is a shame we have had to go through all we have the past four years and that it has taken so long to have the Lyme disease concerns taken seriously. She said she knows personally of a neurologist who specializes in Lyme and Parkinson's Disease and will be conferring with him about me...I cannot tell you all how many times I have pleaded for additional extensive Lyme testing with my doctors!

She said that because of the insurance companies doctors often have to horn into one diagnosis and then they ignore the "other" stuff...often neglecting to put it all on a blackboard and really dissect/investigate all symptoms the patient is experiencing.

She said I do have Parkinson's Disease and that taking care of the Lyme hopefully will make the those symptoms better... Untreated Lyme can cause so many serious issues neurologically and it can damage the heart also...there was a man in Canada who died with diagnosis of MSA but upon autopsy of his brain they found the Borrelia (Lyme) bacteria. According to her there are many such cases as this mans!

PLEASE BE SURE TO TAKE NOTE THAT...I am not advocating that everyone with Parkinson's Disease or a Parkinson's Plus Syndrome or any other neurological disorder has Lyme Disease...however, if there is a chance you think you might have been bit...and often folks don't know they have been bit...if there is a chance you have been bit...PLEASE GET TESTED...and according to this specialist we had seen she said that the test most doctors will run is the Lyme Sero, IgG/lgM and Lyme Ab, Interp. and in her opinion it is like a generic test and tells nothing! Remember if untreated Lyme Disease can be misdiagnosed for all sorts of other nasty stuff.

The other thing I want to put out there I have said it before I am an advocate for it and today proved how very important it is....IF YOU HAVE NOT CREATED A BINDER WITH A COPY OF ALL DOCTOR NOTES, LAB RESULTS, MRI REPORTS ETC...DO IT NOW!!! I also had a time line from the onset of symptoms to date along with the info with medications current and past....THIS INFORMATION WAS CRUCIAL TO MY APPOINTMENT!!

You have a right to call all your doctors and request these copies...My binder consists of reports from ER visits, my regular MD, all neurologist reports current and past, and any other doctor I have seen on this path including dermatologist, along with ALL LAB WORK...all played a key part in this visit!!

I believe this to be vital information we ALL need to be aware of and assess ourselves. You know your body better than anyone else out there...you have a responsibility to yourself to do your homework...if something does not fit a pattern of the disease you have been told you have then I URGE YOU TO BE DILIGENT IN GETTING SOMEONE TO LISTEN TO YOU !! Most of all

OK tired in CA and going to bed

I want to add one final note... without my faith I never would have kept my sanity as I have been able to on this journey that we continue to be on! It's obviously not over yet!!!

I want to add this for reading it is very interesting stuff please click here and check this out!

Full Speed Ahead

Since the start of the new year I am finding my brain going in a thousand different directions. I have set some pretty high goals for myself this year and I am starting to see that my dreams are closer to becoming a reality.

Experiences in my life have taught me that attitude plays such an important role in how I function day to day. Yes it's true experiences if allowed can dictate how our attitude will be, instead of allowing logic, heart and inner soul to guide us. when I decided to do a blog it was because I felt there was so little out there for people suffering with MSA that was positive. I did not want a blog that would bring people down, my vision was to create a place for people to go where through my plight they might feel some encouragement to go forward...I must admit I am human and often have found this to be quite a challenge.

Many of you know my husband sustained a two story fall nearly eleven years ago and survived. He is yes a walking miracle, a man who according to the experts were shocked at his survival and degree of recovery! My husband questions at times why he still is here on earth and as we sat together last May after completing our very first SF 5K Marathon together for Team Parkinson's I answered this question; yet this time my reply was just as it had been in the past I turned to him and said "Obviously God is not finished with you yet; he must have some pretty big plans for you" it also was at that very moment that I told my husband "I cant explain it, but I feel your accident and my getting PD, well that there is something we are meant to do. All we have been through and what lye ahead of us can't be for nothing"

When I had received the diagnosis of MSA in August I allowed that diagnosis to send me into a whirlwind, a downward spiral for the next few months. I would find myself often crying and saying how much I did not want this horrible disease. I was so internally frightened that often I felt my mind was running in fear; from that point on the emotional roller coaster ride would come and go.

There have been times when I thought I could handle whatever was before me and times when the fear of tomorrow and all it could hold within its grasp would take me to my knees in deep sobs. I would learn how to once again dig deep inside and put on my "warrior" face. I held tight to my Lord and drew strength through prayer with him and the family and friends he would send along my path to hold me up.

I was amazed that several women I had never met personally, but talked with on the telephone and Internet throughout the year would come to know me way better than even some of my own family members did. All of us thrust into a disease we never expected or would have imagined we would experience, lives intertwined forever! I was able to draw strength not only through my faith but also with the support of these remarkable women of faith along with my husband and our two daughters; yes they all would become my key in being able to hold my head up and face the day and all it brought with it.

When November came along and my digestive system totally stopped functioning once again I found myself feeling that I had been in denial and that I now had to face the inevitable...that I was losing the battle to some degree with this disease and it now was gaining strength.

When this journey began nearly five years ago I have never stopped praying; my prayers have gone like many others I am sure; from fear to bargaining, pleading and to praise! Only to feel embraced all the way through feeling that I have been lovingly held in more ways than one by my Lord and Saviour. I feel it would be a disgrace not to give glory to Jesus the one who sustains all I am.

Whoever could have foreseen what was to come about from abruptly discontinuing one of the medications I was on. Never in my wildest dreams would I have imagined or thought that I would experience the humongous internal insight that was to go off within myself . I sit here writing this, a smile across my face, yes I feel like a kid today...yes, for the first time in a longtime I feel there is some solid direction in my life. I want to make a difference in this world as I always have felt and believed that everything does indeed happen for a reason...

Today I feel I can take on the world...today the world is vast and before my feet and I plan to jump ahead and grab onto it! Full Speed Ahead! The first thing on my agenda for 2009 is to get a local support group off the ground...yes this is what I plan to do and I am so excited as I am beginning to see this vision become a reality.

Life is a choice...and how we live it, well we make that choice everyday when we open our eyes and greet the New Day....it is just that A NEW DAY....

I encourage each and everyone of you, get outside, get up if you are able and embrace today....call someone you haven't spoken to in a longtime, smell a flower or cook up something and fill your home with some great aromas, light a candle...if you are unable to do these things them don't be shy ask someone to do it for you...people are waiting to help out they just don't know how...it is up to each and everyone of us to make a difference...we can...it is all in how we look at today and tackle it!

Hugs to you all!!!

Thank You Once Again Lord

Well the last few weeks have definitely been an adventure of sorts! First we had the excitement and fun of preparing for Christmas and all the wonder and magic it brings with it. Then of course the ringing in the New Year ...and thanks to Kona you all know how that went; however, what you did not know was something else that was going on in the background of all of this.

It is no secret that the stresses of dealing with a debilitating neurological disorder or any chronic condition can take its toll on you. It can effect not only how you feel day to day, but also it can infiltrate into all areas of your personal life from effecting your relationships, work, to even day to day living. For a year now I have been talking weekly with a neuro-psychologist. She is the same psychologist hubby and I utilized after his accident 11 years ago (wow this month makes 11 years!) This psychologist has been another one of my so called special "angels" here on earth. She has helped me out through some very difficult periods in the last 11 years. We had parted ways nine years ago only for me to look her number up once again little over a year ago when I was going from doctor to doctor trying to get a diagnosis to what was wrong and being told I had Parkinson's Disease. I have been so blessed to have her incredible insight and guidance when issues arise that I just don't quite understand or posses the finesse to handle them positively.

In November it was devastating for me to hear the news from a Gastro-specialist that my digestive system was failing. I had ended up in the ER just before Thanksgiving with some serious stomach pain. I was told the plan to be was that I would have to eat a high fiber diet consisting of at least 20gm of fiber a day, and take a laxative also daily in hopes that these measures would keep my system performing as it should be. Gosh how does one find a graceful way of discussing such personal issues? I was so ill and my digestive system such a mess that it took only a month to drop 13 pounds, something I had been struggling with since I gained the weight when I had taken Requip well over a year ago! Nightly, before bed I would put the laxative in a cup of tea to disguise what I was having to ingest, while at the same time mentally repeating the mantra "Dear Lord, please don't let me lose my digestive system, and please Lord take this disease away from me"

It seemed that since August since my diagnosis of MSA my world had really been turned upside down in so many ways, yet I was determined not to let it get the better of me; however, I was now more so than ever finding it harder and harder to ignore the ugly truth of what was before me...my body was deteriorating for sure! Yes there was no escaping it. I would go to bed nightly bloated, and miserable and very, very frightened. There we nights I would walk the house holding my stomach in pain, while hubby slept soundly, I was terrified of what lie ahead for both of us.

The Night before Christmas Eve I was on the phone with my psychologist telling her of all the energy I had as I ran up and down our stairs all through the day! I had baked up a storm all through the week and delivered plates and plates of treats to our friends here on our street. I told her of how I had woken one night with hubby fast a sleep beside me...there were no thoughts of sugarplums dancing in my head nor was I feeling snug in my bed...no not all...for instead I dealt with thoughts of kitchen knives, hiding in closets and bright lights pouncing about the room...I felt such a deep dark gloom had set in. The more we talked the more concerned she became that I might be getting 'too' much dopamine, and made me promise that when I hung up the phone with her that I'd make a call to my neurologist and tell him what I had just shared with her. While I heard her explain neurology wasn't her expertise she did think what I might be having was an "Episode" due to the drugs! Well this was enough information to cause me to follow through with her request and as soon as I had hung up the phone I quickly picked it up again and dialed the necessary numbers for the neurologist.

It was suggested by one of the doctors at The Parkinson's Institute that I stop taking the Comtan...the medication to help sustain the Sinemet longer... that by stopping it, it would cause the least adverse reaction. So I did so that night. The next day was Christmas Eve and our family celebrates the 24Th and 25Th for Christmas and in all my hustling around the house, visiting with family and friends, eating all the goodies that we had prepared I neglected to take my laxative...to make the long dragged out story shorter...I have not taken the laxative since the 23rd...and well I am very, very proud to announce that I highly doubt my digestive system is failing...at least right now it is not!!! Yep you got it...no Comtan in my system... and my digestive track is just fine...fine as in...just dandy...just dandy as in...BETTER thank A OK....yes I am sitting here beaming from ear to ear...

I have said it before and I will say it again I live with one of God's Miracles, I wake up next to him daily....he is my hubby....and yes I do believe the Lord hears and answers prayers....

You can chalk it up to whatever you like but for me....well Comtan obviously was the culprit in my digestive issues and yes my mantra prayer was answered. so far in part to a degree...My digestive system is for sure not failing...The pizza Marian and I ate today for lunch proves it!! Thank You once again Lord for the insight given to one of my angels here on earth....

Thank You once again for yet another Miracle Lord!!!

Happy New Year!!

Well here it is 2009 has finally arrived and 2008 officially is the "past"....

They say they way one ushers in the New Year is a reflection on how you will spend the next year. If this is true then I am a bit confused as to exactly how to interpret what Al's and my 2009 holds in it!

Normally we are the couple on the block that holds the New Years Eve Party...Oh we have had some wonderful memorable parties in this home of ours. When we ushered 2007 out our friends and neighbors living behind us stepped in and took the honor of opening their home and ushering in the New Year for the neighbors. It was difficult for me to relinquish what was "my" little thing that I so loved to do; however, there was no way I was up to planning or hosting the big event.

This year the friends behind us opened their home up for a wonderful Christmas party for the neighbors, that left New Years Eve once again open. I really actually thought about talking to Al and seeing if we could do it, but given that I am not working and messing around with cutting my Sinemet back, well lets just say my inner voice was all against it big time!

So Al and I opted to spend 2008 a bit different. We went to an early movie and seen Bedtime Stories and then came home and ordered Chinese food in....now this was quite a bold part on Al's behalf because the day before Thanksgiving he had eaten some left over Won ton Soup and got a horrible case of food poisoning. After dinner we decided to watch TV and play our new Uno Spin game I had purchased at Christmas time...mind you Al has beat beat me every game so far!

When nearly 9 o'clock our time hit we called some friends in the East that were getting ready to usher in their New Year....then back to Uno we went.

Midnight approached and with Dick Clark hubby and I kissed and blew our horns and then to the front porch we went to see who in the neighborhood was out making noise. We could hear car horns going off, people laughing and yelling and yes firecrackers and various other loud noises that my husband referred to as M-80's.

We were laughing and enjoying the moment. Now for those of you that are dog owners you know our beloved pets hate fireworks...well our eighty some odd pound Golden Retriever mix dog "Kona" is no exception to this....Now Kona is huge and I have posted about her previously here, she also posses a gift....Yes our Kona can open a door. Our door handles or not your normal round knob they are a long handle and Kona will stand up put her paws on the handle and pull it downward and yank the door open, unfortunately she has not learned the gift of closing the door; now above the door handles is a lock....OH Yes you already can see where this midnight adventure is headed!

OK so back to Al and I on the porch caught up in the moment...horns going off, people yelling (including mwaw) fireworks going off; oh and I forgot to mention the fog was very thick and for us here in California it was cold probably in the 40's. All of the sudden we could hear Kona whimper and we heard a thump on the other side of the front door and a familiar "click" Al and I quickly looked at one another and I yelled out "OH NO!!!! She's locked us out!!!!" We both quickly ran to the front door, I was first to reach the handle, and as fast as I could pressed down on the latch to open the door...frantic barking was coming from the other side...IT WAS LOCKED!!

MIDNIGHT WAS HERE, 2009 HAD ARRIVED! The telephone inside started to ring and Al and I looked at each other and said "we don't have a key!"

We stood there for a moment...OK so I am lying...I ran back to the front door and turned to Al and said "do you think we could get her to unlock the door?" Al was very calm and gave the snicker he gives when he obviously feels I am having what he dubs a Blonde moment "NO, KAREN!" well this was just not good enough for me! Back to the front door I went, my Kona and Rockie on the other side..."Kona, Kona baby...come on Kona" barking begins on the other side of the door. Frantically I start pulling on the door and trying the handle.

I then turn to Al "Well this is just great, we'll freeze to death out here!" I also did not want to admit that it was going to be very difficult to go to a neighbors house and ask to call our daughters or my folks the only ones that have a key to our home...as well first off they all went to parties and I don't know the girls numbers off the top of my head thanks to auto dial! One of our neighbors daughter is friends and socializes with our girls and her car was at her parents home two doors up so quickly I took off running, rang their door bell...Lupe opened her door along with Krysten and joyfully embraced me with New Year wishes....I turned to Krysten and asked if she would please call our daughters cell phones....she tried, no answer...I called my parents house...no answer...finally we did reach our one daughter Danielle who lives the farthest out from us and she was gracious to make the twenty minute or so trip to unlock the front door.

While waiting for Danielle's arrival Lupe and I went out front to retrieve Al and get him to come in from the cold and share some Champagne they so graciously offered. While yelling for Al their family cat opted to make a run for it, I quickly squatted down and tried to grab the fast fleeing feline and rammed my right hand into the cement pillar on their porch...OUCH!

We did get back into our home, my right hand first knuckle and fingers are swollen...but we did have an eventful jump start to our New Year! Tonight we will celebrate the New Year as we always do...Al will roast a Prime Rib and the family will gather and we will share dinner and more than likely laugh about the night prior!

The only thing bothering me is they say the way you start your New Year is an indication how it will go....hmmm on that note does it mean...

we will be out in the cold in 2009?

Could it be a way of showing us that perseverance wins in the end...after all we were able to get back in? And we will get concrete answers to our questions regarding my health?

Or does it just mean we need to be more careful and hide a house key outside someplace since we have a neurotic canine living in our home?

What I do know is that I am thankful for family and friends and a decent sense of humor!

Ah yes 2009 has arrived and in the Fernandez household the adventures continue!