Blessings

Today, I woke up and the very first thing I did was ask God to allow me the opportunity to be a blessing in someone else’s life today.  Then I asked Him to allow one little cup of coffee to do the job of of 5!  You see, I stayed up late last night finishing my Christmas shopping online, for my immediate family.  This wasn’t intentional, it’s just as I was reading E-mails last night, PayPal Credit informed me of my wonderful available credit and then directed me to Overstock.com, who, it seems, is having an anniversary sale.  Sale?  I was sucked in immediately.  I know that, with my crazy schedule running between my home outside of Bastrop for one week to the Houston area, to be with my parents and Ken for a week or two, I would be too exhausted to even consider traditional Christmas shopping.  So, I got started.  I found the perfect gifts for grandchildren, big boys with families of their own, daughters and daughters-in-“love,” and most of all Ken!  It only took me until 1 a.m. to actually successfully complete the checkout process BUT I saved $165.00 off of the already marked down prices and got some really awesome gifts.  This, my friends, is why I woke up 45 minutes before I had to be on the road to Austin to the Mann Eye Institute.  Well, that and the fact that my phone was on mute and the alarm did me no good at all!   (See, now you know the rest of the story.)

As I threw on my clothes and downed a cup of coffee, brushed my teeth, and just wet down my wild hair from the night before….I had no idea about the wheels that were already set in motion for today’s blessing.  I looked like a bag lady, when I left the house, but I was so tired that it didn’t bother me one bit.  Those of you who truly know me, know this is a big step for me to actually let go of my perpetual perfectness.  It has been hard but I have been in therapy and trying to accept that, with age comes complete exhaustion, and with exhaustion, we cannot always look our best, feel our best, or accomplish all of the things we used to accomplish in one short day.  Now, it takes me three days to accomplish one.  I try not to keep track of my deficit but embrace it, as a new season in life, per se….. it just sounds so much better than, damn girl, you sure have gotten so much slower and sloppier these days!

I made it to my appointment in Austin, with a whole two minutes to spare, but only because the new construction on Hwy 71 had finally opened the new freeway and the Little Old Lady from Pasadena could go go go!  I went through the normal routine with all of these very fancy high-tech machines that had me seeing beautiful spots and rectangles and spirals every time I would close my eyes.  Who needs drugs these days?  One can just go to the eye doctor and see tracers of the most vivid colors for a full 30 minutes, without all of the side effects!  Then came the point where they put in the drops to dilate the eyes.  I was hoping I would have no repeat of the time my eyes were dilated and the right eye decided to respond ferociously.  That day, I went into the ladies room and, while washing my hands, happened to glance at myself in the mirror and saw Mad Eye Moody staring back at me!  I found it so funny and entertaining that I actually took a selfie and sent it to all of my kids with the caption “Mad Eye Moody.”  Nothing quite remarkable happened today unless we count the intense headache and right eye pain I have had ever since.  

I waited in the waiting room, for the pupils to grow, and then was called back to meet Dr. Barker.  He was young, cute as a button, and had that something special that only certain people in life seem to have.  I liked him immediately.  I apologized for my bag lady look and told him I was just lucky to be there.  After all of his testing, he confirmed what I already knew.  I have really bad cataracts.  My right eye is so bad, it is nearly useless, and it is my dominant eye.  He explained that this could most likely account for my increase in headaches of late, that and wearing my glasses.  It seems my eyes have gotten so bad, I actually see better without my prescription progressive no line bifocals!  I just want to be able to read the TV Guide on the television.  Dr. Barker tells me he can get me all fixed up and I will only need reading glasses, when he is done with me.  He was about to leave the room, when he said, “Have a Blessed Day.”  I immediately told him how I always ask God to let me be a blessing to someone that day and, I too, like to use the phrase, Have a Blessed Day.  We chatted a moment and then he sent me to the surgical coordinator and financial advisor.

Once in Roland’s office, he got down to business.  I rearranged my calendar for days in Houston and actually got it all worked out where I can have my right eye cataract surgery on October 27, and my left eye on November 3. 

 Mind you, I have NO car right now because I burned up the clutch in our little red hot rod, so it is just resting in the driveway at this time.  I don’t have the funds to fix the car and it is Ken’s car….so, Ken has my car in Houston and I am dependent on my wonderful daughters to either take me to appointments (which are many) or let me borrow their cars.  We have been playing this game since the end of July and I must say, I am sure my kids are getting sick of me.  Thank you so much Sarah and Holly because I really don’t know what I would do without you two.  I also have my ex sister-in-law living with me and she was gracious enough to take off work for my foot surgery and let me use her car in the evenings, when necessary.  Thank you, from the bottom of my heart, Teresa.  I am just glad that we can be here for each other.

After getting the surgery dates set and all of the many preoperative and postoperative followup appointments, Roland then told me that there would be a $1,000.00 charge per eye, over and above what the insurance would pay.  I almost fell out of my chair.  I was here because my insurance is paying 100%, at this time, since it has been an unusually busy medical year for me.  He tried to explain why this was necessary but all I could muster was, “There is no way we can pay that and we will just have to cancel the surgeries.”  This was the same conversation I had in March, when the other eye doctor told me my cost would be $900 per eye.  I know I must have looked completely deflated because Roland said, “Hold on a minute while I go talk with Dr. Barker.”  When he returned, he looked astonished and said, “Dr. Barker is waiving both fees.  He will take care of your cataracts for what your insurance is paying.  There will be no out of pocket cost to you.”  I silently thanked God right that second.  I knew that He had pulled the old switcharoo and instead of me blessing someone else, I had been on the receiving end today.  I counted my blessings all the way home in those hideous dark plastic wrap around things they call sunglasses.  I have been in bed, in a very dark room, ever since I got home with a horrible headache and right eye pain, from the dilation.  One thing I know for certain, God hears our prayers.  He knows our needs.  I will be having a nice talk with Dr. Barker, when I see him in a couple of weeks, and letting him know what a blessing he has given me, in giving me back my eyesight.  I wish there were more “Dr. Barker’s” in this world. I understand how truly blessed I am, for the one that entered my world today.

Blessings to you All, as we embark on this Holiday Season.

The Lottery Winner

​It’s funny, well not really funny, ironic, that one of the docs in my neuro team told me ALL of my problems are caused by the Hep C that I acquired from a tainted ACL cadaver graft on my left knee in 2002.  I never sued….I never knew I had Hep C until 4 years later.  I was a bit naive and trusting of the world. I had always been taught that Christian love meant forgiving and moving on.  I just thought that surgical infections were just one of those things and I didn’t want to file malpractice against anyone, or ruin anyone’s life or reputation.  Fast forward 6 years, and I found out it was a ring of criminals, headed up by a drug addicted doctor, who was changing death certificates on cadavers he would purchase from run down, inner city  funeral homes, who would then sell the bones and tissue to tissue banks, who would sell to the hospitals, who would implant HIV, HEP C, and Lord knows what else in unsuspecting patients.  I have always wanted to win the lottery (figure the odds are about the same) just not this lottery.  By the way, I checked to see if I could sue due to criminal activity (those idiots went to jail), but not in Florida!  They have a loophole to protect the criminal.   I really want to write the book.  I couldn’t have invented a better story!
I will write more about this….I see my doctor on Friday and am hoping I find that there are at least a few hours in the day where doing something interests me, once I begin treatment.

The Turtle and the Tub

Not to get off track of the story I am telling, but right now, I have a turtle in my bathtub and I don’t know what kind he is.  His shell has furry hairy growth  so I figured he belongs near water.  Who knows, he could be a huge snapping turtle but I am one of those crazy people who save creatures, like baby mice.  I sure hope it’s a water turtle, or it could drown tonight.  Perhaps, I should check on him or her.  His shell definitely didn’t feel like a tortoise.  He has red stripes on the side of his head.  Any suggestions, other than my immediate thought of the famous snapping turtle we have so many of, here in Texas?

I was going to take him to the Colorado River and release him tomorrow because he is causing my dog severe anxiety and I can’t listen to her whine all day tomorrow.  I’m going to go get a picture so yall can tell me….

His face isn’t ugly like a softshell…

image

Yes, this does prove that people with Parkinson’s are just a bit crazy, unpredictable and out of touch.. .

No matter what, he does belong near the water, right?

The Beginning…

Back in 2002, while living in Florida, I was having problems with ligaments just tearing, for no particular reason.  I had already had 2 ACL grafts, on my right leg, and had to have both shoulders completely rebuilt, due to numerous tears in each.  There were never any accidents that caused these tears, just flat out disintegration of my connective tissues.  Of course, no one ever even tried to find out why my connective tissue was falling apart, they just scheduled surgery after surgery to repair the damage. 

When, I stepped up on a step stool and heard the loud pop in my left knee, I knew exactly what I was facing….another excruciatingly painful ACL graft on my left knee followed by months of rehabilitation.  The surgeon wanted to use cadaver tissue because it would supposedly shorten my rehabilitation time.  At the time, he didnt know that he couldn’t have been more wrong.  I even went so far as to show up at his office a few days before the scheduled surgery to discuss my misgivings and fears of using cadaveric tissue.  He assured me that this was safe and everything would be fine.

This is where I want to warn everyone reading this to always follow your gut instinct.  You have this 6th sense for a reason.  Pay attention to it.  I wish I had.  I couldn’t know then that this one surgery would change my life forever. 

My Mom flew to Florida to be with me and was there the day of surgery, as my husband would be leaving for Texas and a new job shortly after I came home.  I was left waiting on the gurney, in the holding area, for at least an hour to an hour and a half past my scheduled surgery time.  We would later learn, by a well-meaning nurse, that the surgeon was in the OR “playing” with the graft.  According to that nurse, he was acting totally unprofessional and twisting, stretching and tossing the graft around, as if it were a slinky.  I was finally taken back and the surgery performed.  I knew the instant I woke up in Recovery that something was very very wrong.  The pain was much more intense than any graft I had had prior and it only continued to worsen.  For that reason, I was kept overnight in the hospital for an extra night.  At this point, I had been in the hospital for 2 nights.  When the doctor came in to release me the following morning, my leg already had red streaks but he insisted I was fine.  My mom and husband took me home and I was probably there for all of 4 hours, if that.  My leg continued to get more swollen and redder by the minute.  I started running a fever over 101.5.  I told my husband to take me back to the hospital immediately.

It should be noted, that I was a Medical Transcriptionist and honestly knew as much, if not more than that doctor.  I knew I was in trouble – serious trouble.  He wasn’t happy to get the call to meet us at the ER, and did argue a bit, but we insisted.  When he saw my leg, his entire demeanor changed.  Instead of acting like a happy go lucky child and a show off, who thrived on any and all attention any nurse would pay him, he instantly started lecturing us about the seriousness of my condition and the possibility of losing my leg.  I was immediately admitted, after performing the most painful cultures in the ER.  I would be in this hospital for the next 3 weeks living through the most terrifying experience of my life….and my husband had to leave Florida, to start a new job in Texas, shortly after my admission.

I cannot even begin to explain what it was like to tell my spouse goodbye not knowing if I  would have only one leg, when I saw him next….and I sure didn’t want to lay a guilt trip at his feet.  I let him leave and assured him I would be fine.  Actually, I came very close to death during those next few days.

At the time, I couldn’t know that there was a criminal ring changing death certificates and selling bone and tissue from people who had died of HIV/AIDS, Hepatitis C, and other infectious diseases.  I wouldn’t know this for another four years.

Another day….

For the past few years, I have noticed that my singing voice wasn’t what it once was.  I just attributed it to years of smoking. (Yes, I, with all of my health problems…am playing Russian Roulette.  How ironic -or rather, Stupid!)  Now, with the diagnosis of Parkinson’s, I understand why I cannot sing.  PD steals your voice.  I am hoarse every day.  It will only get worse, not better.  There will come a day that I go silent.  I tease my husband and tell him that yes –  I will finally SHUT UP!  Those who know me well, know that this may be a huge blessing for my poor husband, who has listened to me talk to myself, the animals, the walls, whatever.  I just can’t shut up.  A counselor once told me I was a “verbalizer.”  She explained that, in order for my brain to process and my body to respond, I HAD TO VERBALIZE.  Personally, I just think I like to talk, a lot!  It makes me sad to think I will be trapped in here with nothing to say.  I also grieve over the fact I can no longer sing.  So, I have promised myself that I will continue to sing – just in a different way.  I promise to sing and sing through the written word.

I had counseling today and was instructed to grieve, then laugh, then grieve…. and keep on writing.  So, I am. 

If you or someone you know is living with a chronic debilitating progressive illness, lift them up, support them, and let them talk or sing all they want.  Someday, you will miss hearing their voice.

A Day in the Life of Parkinson’s

Since I last wrote, I have seen more doctors and learned that, so far, my unsettling diagnosis stands.  I started counseling with the best and most experienced counselor, for my needs.  Her brother-in -law also suffers from this illness.  I have learned that I cannot expect to recover from shock, grieve for the loss of who I was, and accept and love this new person I am today, in a period of one month.  This is a life-long journey, that will require that I just take each day, as it presents itself, and make the most of that day.  For me, this means that the OCD of a clean house cannot stress me out because I have no control of how I feel.  If I just get out of bed, shower, take care of my pets, and actually ENJOY that day…I have accomplished much and should consider it a victory.

I do not necessarily trust my thoughts.  I still have not begun dopamine therapy and do not want to create any new problems by saying the wrong thing to someone I care about – so I tread carefully.

My youngest daughter took me to my doctor appointments, so I would not be alone – should there be bad news.  To make the most of that day, we went to lunch at Chuy’s, my favorite TexMex place in Austin.  It was wonderful just spending time with her.  One blessing counted!

On Thursday, I went to Hawaiian Falls, our newest water park in the area, with my oldest daughter, her husband, his brother, my grandchildren and my niece, who moved into my home on January 1, of this year.  We had a wonderful time and it was so therapeutic to just spend time with my grandkids and play, without dwelling on the journey before me.  Wow….another  blessing!

I had an unexpected blessing, on Friday,  while taking my niece to meet a new friend.  His mom and I hit it off right away and I feel certain I have found a new friend, at a time I needed one most.  My husband also made the drive home from his Houston job early on Friday and surprised us! 

My son-in-law celebrated his 35th birthday on Saturday and we had a great party at their house, complete with huge blow up water slide and 120 color filled water ballons, the best burgers and strongest margaritas ever!  By 4:30, I was exhausted and came home to nap.  When I woke up at 7 pm, Ken and I went back to join the party in progress, but really it was mainly to get another great burger because cooking is harder for me these days, when it used to be one of my great joys and talents.

I did celebrate a huge victory this week.  I actually went inside the grocery store for a few items.  I grabbed what I could, on the pet food side of the store only, and got out as quickly as possible.  The thought of trying to navigate an entire store is so overwhelming. 

I had a very pleasant surprise, when I received Michael J. Fox’s book, “Lucky Man,” in the mail – sent by an old high school friend.  I know I am one lucky woman, to have so many caring people in my life.

If you have not read this book, I highly recommend it.  You needn’t be a Parkinson’s patient to be inspired by his story.  I was immediately touched by his writings, as he explained the moment he realized that his life was about to take a totally different path from the one he had mapped out for himself.  He calls this “Irreconcilable Differences.”  I couldn’t have said any of this any better, had I tried – so, I would like to share his view.

  “That morning – November 13, 1990 – my brain was serving notice:  it had initiated a divorce from my mind.  Efforts to contest or reconcile would be futile; eighty percent of the process, I would later learn, was already complete.  No grounds were given, and the petition was irrevocable.  Further, my brain was demanding, and incrementally seizing, custody of my body, beginning with the baby: the outermost finger of my left hand.”

Thank you, Michael, for those words: What a profound impact they had.  I believe I was served notice on, or about, April Fool’s Day, 2016.  It was a cruel joke; and one, I soon realized, that had no intention of playing with me for just one day only, and it wanted the right side of my body. 

I am trying to find my path and say goodbye to what was and embrace what is new.  However, I know this will not be a quick or easy process – I just want to be aware of the blessings that, without this diagnosis, I would surely have missed.

Until next time…  stay safe, stay healthy, and count your many blessings, whether large or small.   I find the smallest ones, the best of all.

  

A Day in the Life of Parkinson’s

If I can give one piece of advice, that could save a newly diagnosed patient a ton of heartache, it would be to NEVER agree to family counseling while you are:
A) still in shock;
B) not on any sort of dopamine replacement; and,
C) feeling suicidal. 
These definitely do not mix well. 

I guess I survived because I am here to tell the tale but “man” that was a very tough day and night…not just for me, but for my husband, as well.  You see, he had to pick up the pieces and put me back together.

That evening was the one where the entire dam came down and the flood gates opened. To be honest, it was barely holding anyway.  I was rethinking the events of the day and realized I could not remember most of them, nor could I recall exactly what was said and what was imagined, in my confused state, but the agony of realizing that I, a total control freak, no longer have control was more than I could bear. 

I screamed, I cried, I cursed, and I took out my favorite lipstick and wrote “FUCK YOU, PARKINSON’S” in all caps across my bathroom mirror.  I only wish I had not used my “favorite lipstick.”  (Note to self: The next time you feel the need to destroy something, use something you really don’t care about!)  As I climbed into bed next to my husband, I cried, “I used my best lipstick to write on the mirror.”  “Why would you do that,” he asked.  Silly me, I thought he was asking why I used my favorite lipstick.  No…he wanted to know why I wrote on the mirror.  I told him, in between sobs, “because I sure as hell cannot go out in the middle of the street in my pajamas and scream at the top of my lungs, “FUCK YOU, PARKINSON’S!”  “The neighbors might think I’m crazy, but you already know I am!”  With that, he just wrapped his loving arms around me and held me tight while I purged myself of every ounce of excess fluid my tear ducts could release and it took quite a while.”  I would like to think that this is the end of the grieving and the acceptance can begin…but I cannot be certain and definitely expect more not-so-terrific moments. 

“Ken, as long as you are here to hold me….I can handle anything this disease throws at me!” “I promise to never consider the easy way out.”

I do know that Sunday was a wonderful day.  I went to church with my niece, who lives with me, and took my 5 year old granddaughter.  It was my second visit to this church and the first time to actually go out in public, on purpose, knowing that I would shake and people would notice.  I sucked up all of my inner strength and walked right up to the front (third row) and sat in the center.  Front and center, I told myself. Yes, I shook and tremored almost the entire time.  I raised my hands to the Lord in praise and they were shaking…but God didn’t care….I was right where He wanted me and I was right where I needed to be.

After the service, I introduced myself to the pastor, who was wearing flip flops, by the way. During his entire sermon, he did not know that the lady with the tremors, on the third row, was the same lady he had been praying for since her diagnosis.  I thanked him for his prayers and assured him I would return next week.  I think I can really appreciate a pastor who feels comfortable preaching in flip flops.  I find it rather symbolic!

I haven’t really shed any more tears.  I have said no to family counseling, other than the already scheduled session in 2 weeks.  My husband and I both feel it is important that I am in a good place emotionally before we tackle the emotional scars of our family, left behind by years of an invisible illness. 

Each day brings new insight and small victories.  I will be grateful for what I am given….for, I know, there are others suffering much much worse.

I see another neurologist this week and will keep writing, as this new life unfolds.  Blessings to you all!

Journey into the unknown. A day in the life of Parkinson’s.

As she leaned in and patted my hand, I was not prepared for the words that came next….”Honey, you just have a “little” Parkinson’s.”

That was 3 weeks ago.  Three weeks on the most extreme emotional roller coaster, that I hope no one reading this will ever have to ride.

I suppose it all started years ago but I was not aware, as the changes occurred so gradually, I didn’t even realize there was a silent thief in my brain….taking everything that made me ME.  After living through extreme stress for the past 3 years, with family members pulling away and not wanting to spend time in my company, telling me I had changed, and feeling shut out by my very own treasured children…..the tremors began.  At first, it was a finger, then the entire right hand, especially during times of anxiety or stress.  No way, I thought to myself….”it’s just my nerves.  I am just tired and stressed out.”

A few short weeks later, I found myself at the Parkinson’s and Movement Disorders Clinic in Austin.  I exhibited 9 out of 10 warning signs of Parkinson’s.  The exception, I can still smell the fresh cut grass, flowers,  a precious grandchild’s freshly washed hair, or the delicious smell of  a newborn baby….but chances are that, too, shall quietly and slowly leave me.

I must say, it takes longer to recover from shock than I had ever imagined.  I seriously thought that I could go home, cry it out, and get back to the business of life.  Boy, was I wrong.

It seems like the damage this disease can do to a family, while it is secretly hiding and stealing everything and everyone important to you, can actually be irreparable. For my family’s sake, I hope not. Wouldn’t it be nice if these invisible symptoms could flash a big neon sign over the patient’s head saying, PARKINSON’S IN PROGRESS: PROCEED WITH CAUTION, for at least the first 10 years, while the patient looks perfectly healthy, thus informing everyone who crosses your path that you are no longer you….and you never will be.