Remembering Destiny January 29, 2015

While I am awake and playing around on the computer, I am listening to music.  One particular song brings back the greatest memories of my sweet little dog.  Destiny was the greatest little teacup toy poodle I have known.  I bought her from a pet store with the money I had received for my college graduation.  A woman had come in and dropped three dogs off and told the staff to “get rid of them”.  Destiny was the last of the three there.  Alone in that crate, all 2 1/2 pounds of her, her shaking broke my heart.  My daughter and I asked if we could hold her.  I think it took both of us about 2 seconds to fall in love with her.  I can remember that when my mother found out we were getting her, she said jokingly, “You’re getting a used dog?”  I laughed and said, “I prefer to think of her as previously owned.”  She was also “pre-named”, and aptly so.

Throughout the years, we accumulated a book-full of “Destiny Stories”.  She was the baby, the Queen Bee, the stinker and more, all rolled into one little fluffy ball of fur.  My favorite story happened when she was older, after Dave and I had gotten married.

Because of age and gum disease, Destiny had to have her remaining teeth pulled.  We jokingly called her “Queen La Toofa”.  It certainly did not stop her.  Her breakfast each morning was a sausage, egg and cheese biscuit and her lunch was a double cheeseburger.  The people at the McDonalds near my office knew her — and watched for us to drive up to the window.  Grant you, I didn’t get ME food, just Destiny.  The workers would say, “Oh she’s here!”  She would graciously wag her tail and accept petting from the worker through the window as they handed me her bag.

Dave had two dogs when we got married, and I had Destiny.  One of his was a neurotic Basinji named “Blossom”.  Blossom hovered over Destiny mostly I think because she couldn’t figure out what in the world this small thing prancing around the house like the Queen actually was.  And she would sniff.  And Destiny did not like it.

One day, Dave was brushing his teeth, and with toothbrush in mouth said, “Honey — LOOK!” Blossom had hovered Destiny to the back of the hallway, and I guess Dee-Pup had just had enough.  As I looked, I was a little shocked and a lot amused.  Destiny was walking on her hind legs, and with little tiny barks was nipping (well gumming) at Blossom’s nose while Blossom was backing up from her.  Destiny did that for the entire length of the hallway.  It was — well, hilarious.

Being the prankster that I am, I decided to surprise Dave when we got home.  I told him we would be home a little later after work — we had a stop to make.  I took Destiny to the craft store.  I found a piece of material that was black with flames on it, and I found sunglasses designed for a small teddy bear that were “Terminator Style”.  I made a “do-rag” out of the material, and Destiny wore it well!

When we got home Dave greeted us at the door.  There I stood with little Destiny in her bad-a** do-rag and wearing her Terminator sunglasses.  He just shook his head and started laughing.  Then I started singing “Bad to the Bone” and he started howling laughing.  I said, “She just wants to make sure Blossom remembers not to fuss (ahem) with her.”  Destiny sat, perched in my arm, poised and controlled.  And to this day, I swear that under those shades she was staring Blossom down.

Destiny brought us so much joy.  At the age of nineteen, she passed away peacefully with Dave, our vet and me all crying.  Losing a pet — especially one that is your “baby” is always difficult.  It just is.  But as the years go on the sweet, endearing and more often than not very funny stories of “Dee-Pup-Chopra” (as we sometimes called her) continue in the best of ways.

So Dee-Pup, I played your song tonight.  And I giggled.  A lot.

My Love Story…. January 22, 2015

I had *finally* decided that after 13 years post-divorce I was okay being single for the rest of my life. I went to the movies by myself, concerts by myself — and I enjoyed it. I had my own business, and I was a single mom of two older teenagers. I was too busy for romance. And besides that, I had a history of the best “worst first date” stories that could traumatize the strongest of women!

One day, my secretary’s daughter had to go to the doctor. My secretary’s brother was coming into the office to pick her up. When he got there, she introduced us and we talked a bit. He had just recently had jaw surgery, so we talked about his recovery, etc. I told him that if he ever needed PT for it, to give me a call.

Two weeks later, my secretary says, “My brother is on the phone for you.” I went back into my office, thinking that I would be talking “geek speak” about his surgery. To my surprise, he asked me out. I said yes — reluctantly. When the conversation ended, I remember stomping out of my office, slamming the door and as I walked back down the hall saying, “The LAST thing I need right now is a man in my life.” My secretary looked puzzled. I said, “YOUR BROTHER just asked me out on a date!” — and not in the happiest of tones. She looked a little shocked. Her brother was very shy.

It was the best date I had ever had. Ever. His suggestions were exactly what I would have done if I had planned the date according to what I wanted to do. He is a naval architect, and he and I talked physics — and how it related to our individual professions — with crossovers — all through dinner. He totally got, appreciated and celebrated the fact that I am a geek. And I did the same with him.

I had a history of doing a “post-mortem” with my parents after a first date. I would read them the laundry list of everything that made me cringe, every disgusting quality I found in the man — you name it. Those lists were long. I remember being at their house, grabbing a cup of coffee and meeting them on their patio. They both got the grim look that they always got after I went on a first date and said, “So?” I felt sorry for them. They both looked squeamish.

I looked at them and said, “I know you guys aren’t going to believe this, but I think this is the man that I am supposed to marry.”

Their jaws dropped. I remember my dad saying, “What did you say?” I laughed and said, “I really think this is the man I am supposed to marry.” That was at the end of June 2002.

In October, Dave and I went up to visit my cousin who lives in New Hampshire. We had the vacation of a lifetime just doing everyday things. We hiked in the White Mountains, we went into Boston, we went into Maine and bought HUGE lobsters to bring home to our families. It was fantastic.

A few weeks later, I was really sick with what we thought was the flu. I couldn’t go to my parent’s house for Halloween which was THE tradition. I was so disappointed and I was so sick. Dave came up behind the couch with a blanket, put it around me, then got on one knee and asked, “Would it make you feel any better if I asked you to marry me?” I started crying and said “Yes.” He needed confirmation. He said, “Yes it would make you feel better, or yes you will marry me?” Nodding my head, I said, “Both.”

About a month later, I was shopping with my future mother-in-law. We were on no particular mission. She knew we were engaged, but we hadn’t talked about any date or wedding plans. As she is casually shopping through sweaters she asks, “So when are you and my son going to get married?” with a twinkle in her eye. I said, “Oh, Mom — I don’t know. I want a small wedding and Dave is okay with that, but then he starts talking about *small* it is in the context of something that is going to cost us around $35,000. We can’t seem to get to an agreement about anything.” Dave’s father had dementia, and we all knew that he was getting progressively worse. So this very small woman, with beautiful silver-white hair and sparkling blue eyes looks at me and says, “I know that Joe won’t remember it, but I would just like him to be there when David gets married.” HOW DO YOU DISREGARD THAT?!

A month went by and we had gotten through Christmas. Some things were just not going well at all. I was tired and frustrated and just not okay with my world. Dave called me on a Tuesday and I said, “Do you want to marry me or not?” He said, “Yes I want to marry you.” I said, “Well, then — when do you want to get married?” He said, “I don’t know, how about Friday evening?” I said, “Sounds like a plan.”

With a lot of scrambling on everyone’s part, we were able to pull together a very beautiful wedding at my parents’ house, complete with a wedding cake and all. (The woman at the bakery felt sorry for my mother when she found out she only got two days’ notice). And yes, Dave’s father was there. And no, he didn’t remember it. When we sat down to eat dinner right after the ceremony, he didn’t remember that we had just gotten married. During the dinner, my mother-in-law said, “You did exactly the right thing. Thank you.” Such sweet words from such a sweet woman.

As it ended up, that “flu” I had when Dave proposed was the result of a tick bite I sustained while we were hiking. I had Lyme disease, three other tick-borne diseases as well as Mycoplasma and Mycotoxicosis. Two years later, we were shutting down my clinic, as I was just too sick to continue with it. We had poured buckets of money into it trying to keep it afloat because I was able to work 1/2 days at best — and not every day. That from the person who previously worked 16 hours per day.

During the misdiagnosis phase, I developed a whole host of autoimmune diseases, neurogenic Celiac disease being one of them. Finally, we both knew that I was in trouble. I contacted a neurosurgeon that I shadowed during my affiliation at the Children’s Hospital here. He put all of my brain MRI’s up chronologically and then said that this wasn’t his expertise. He encouraged both of us to go to every single doctor that we could until we found someone who would diagnose it correctly and treat it correctly. Two months later, we found my Lyme doctor.

It wasn’t quite as simple as we thought it was going to be. Treatment was difficult and to top it off? We found out our house had toxic mold. Everywhere. Floor joists to the rafters. We had to abandon the house and everything in it. We had to let the bank take it because we couldn’t afford to tear it down and rebuild, which is what it would have required. When we found another house — newly built — we did a lease to own. We put down a hefty down-payment, and a year later it was tested by a microbiologist from Indiana University. The mold content was 3 times that which would make a “normal, healthy” human being sick. One of the mold strains found was consistent with what develops in drywall that was brought in from China. Abandon again….. Then an apartment. I’ll let you guess…. Yep. So, prior to moving into our apartment we had the microbiologist test it. This was the only complex in Louisville that would allow us to do that. It is mold-free (as compared to the outside environment — that is the criteria). We have been here three years and it is HOME.

Through all of this, Dave has been amazing. He accepts that his wife has disabilities. He knows they are permanent. He keeps me safe when I have an epileptic seizure, takes care of me afterward, then documents it to give to the neurologist when I go for my follow-ups. He can set up a wheelchair faster than anyone I know, and he knows when to disregard my refusal of medical treatment after a bad fall. Ironically though, we are each other’s rocks.

We have been through heartache, loss, and trials that most couples would never go through in a lifetime. And yet we know we are meant to be together. We now have three grandchildren and another on the way, and he is as much “Granddad” to them as if he had been their biological grandfather.

And at the end of every day, we take time together to remember how incredibly fortunate we are, and how incredibly blessed we are. We just got furniture again! Life is very different for us since we have more than just our bed and a television! And we giggle and shake our heads and count our blessings that even 12 years later, when one of us asks the other to marry them, both of us still say “Yes.”

Here we go!! July 28, 2014

I can’t believe that I am almost 12 years after starting my journey battling Lyme disease.  So much has happened — some good, some bad, some kind of devastating and some pretty wonderful — that time has almost flown by.  I can’t believe that it has been a year since I last posted. I have been busy enjoying life! As I continue to improve, I am finding that I am starting to expect (demand?) that my quality of life keep up with that improvement.

This has been a year of wonderful transitions.  Relationships healed, restored, renewed — all part of my journey, my path.  I have so much more that I want to do.  I missed several years there — I have time that I want to make up!  More than anything, I want to get back to a more “normal” life, one that includes being able to cook, clean, sleep without interruption and play.  And I want to do that without feeling like I need to gnaw my right arm off.
.
Two and a half years ago, a series of falls left my right shoulder pretty damaged.  After exhausting every effort to improve my overall function — including some alternative medicine efforts, I have decided that evidently some damage just needs to be fixed.  So in a year of improvements, renewal and restoration, I have made the decision to do the same with my shoulder.

Tomorrow I will be checking into the hospital — I’m guessing as an out-patient — to have surgery on my right shoulder.  At minimum, I know that the doctor is going to take about 1/2″ or more of the end of my collar bone off.  From there, he is going to look at several muscles that give him some concern that they are torn.  A couple are part of the rotator cuff (or as my patients used to say, “rotary cup”), and a couple are a little unusual for shoulder surgery.  Then again, I had some unusual falls!

Is this a risk?  Definitely.  In addition to the surgical risks, I risk that I will “upset the apple cart” and the Lyme and other tick-borne diseases that I have will come out of remission.  I also risk that the systemic scleroderma that I have will rev back up and cause more damage.  But these are calculated risks, and they are worth taking.  My life is so good, and it can be even better if I am able to use my right arm.  I have grandkids to be silly with!!  I have more theme park rides that I need to explore!!

So tomorrow is the day, and it’s going to be good.  If you are so inclined, please send prayers, luck, healing thoughts, mojo, good juju — any and all are appreciated!  Onward and upward — the future’s so bright I gotta wear shades…..

Pondering life’s questions with kids’ help . . . July 31, 2013

Kids are fantastic. They are so open, so honest and so frank with their thoughts, their opinions, their feelings and their reactions. Kids haven’t mastered the art of disguising these in quite the way that adults have.  Some try, and that is when I am convinced more than ever that if you want genuine honesty, ask a kid.

That is not to say that you are going to get a mean answer from a kid, you’ll just get a really honest one. Don’t ask what you don’t want to know because you will get an answer and you may not like it. The answer is not intended to hurt you, it is intended to give you what you sought: the truth.

I have spent the past couple of days pondering some difficult questions with some amazing kids. We have laughed together, we have cried together, we have shown each other both our strength and our vulnerability. You can be vulnerable with a kid. It’s okay — they understand. And you can be uncertain and insecure and not have any of the answers to any of their questions and that’s okay, too. All that they ask is that when you do respond, you tell them the truth. If the truth is that you don’t know? That’s okay. They really don’t expect adults to have all the answers, although I’m guessing they think it would be nice if they did. If you really want to explore life and your innermost self, just ponder it with a kid. You will be shocked at the insight you gain.

Kids have a unique way of presenting to the world something that I think is innate in all of us. They want to know that they matter. I think we all want to know that we matter. They will be the first ones to convey this through their words or actions. A not-so-subtle message of “Damn it! I matter!!” becomes clear when a kid is questioning their place in the world.  I think contrary to popular belief, though, they are not focused solely on themselves. They give you the same message through their words or actions: “Damn it! YOU matter!” If you ever feel insignificant, spend some time with a kid. You will know beyond a shadow of a doubt that you make a difference in this world.

Since getting sick, I have really struggled with my sense self-worth, my ability to contribute anything substantial, and whether or not I really “matter”. Surely, life could go on without me. But would anyone notice? I think it’s one of the great insecurities you get handed when you contract a chronic illness. When you talk with adults about it — even with the people you love the most — you still get the “filtered version”. Adults temper their words in fear that they won’t answer “correctly enough”. Kids just throw it out there, then bat it around a bit with you. It is two completely different arenas in which you will communicate.

My advice to you? When you are struggling with where your place is in the grand scheme of things, talk to a kid. Be there for them, listen to them, respect their ideas and opinions and really communicate with them. I say this with a great deal of confidence that you will not know how much you matter until you do. And you may be shocked — in the best of ways.

Talking with kids — really talking with kids — not just about superficial things, gives you perspective into your relationships and your communication with so many other people in your life. They help you realize that however small, one action to convey to someone that “they matter” is a force almost like no other. Kids messages are powerful. It would benefit us all if we would just listen.

For you Robert, wherever you are . . . April 21, 2012

To some this writing may sound “sappy”, and maybe so.  I am emotional today.  There are times when reality smacks you so hard in the face, however, that you can’t help but be somewhat overwhelmed by it.  Today was one of those days for me.

I was sitting in the veterinarian’s office today — always a long wait — when a woman came in with three children.  Two of the children were obviously hers – they looked like her.  One of the children did not.  He also was not dressed the same as the other two.  His clothing was torn, tattered, and was dirty.  He was wearing a baseball cap — a Dallas Cowboys hat — and it was not clean.  He was a beautiful child with a smile that instantly grabs your heart with eyes that told the story behind what the smile could not completely cover up.

I was sitting in the chair, hooked up to my IV, holding our two smaller dogs.  My husband was sitting in the chair to my right and our older, larger dog was sitting on the floor.  As they walked in, the little boy immediately came over and sat on the chair to my left.  Within a few seconds it seemed his small hand was outstretched, palm up, to let my two little dogs “investigate”.  They began licking his hand, and he giggled about the “kisses” they were giving him.  He was particularly fond of our dog Clyde — who is the smaller dog — and he began asking questions about him.  When he found out that even though he was the smaller of the two Clyde was a male, the bond was sealed.  He and Clyde were “buddies”.

Clyde of course loved the attention — and introductions were made.  I found out that this little boy’s name was Robert.  I asked him where his mother was.  He looked across the room, struggling and said, “That’s my friend’s mom.  I’m staying with them this weekend.”  There was no other explanation.  The woman across the room said, “We help out on the weekends and he stays with us.”

Robert asked me “what kind of dog” Clyde is — and I told him the story of how we rescued both Bonnie and Clyde from some very bad people.  All the while, he was petting Clyde with such care, such gentleness.  He was talking about how soft Clyde’s hair was, and told him that if he had a dog like him, he would straighten out his hair, brush him “really good” and put him in a dog show . . . “and we would WIN.”  That was a statement that would be reitterated several times throughout the course of our morning.  (“Yeah, buddy, you and me would WIN.”)  I asked Robert if he would like to hold Clyde.  A huge smile came across his face.  As I handed the dog to him, I noticed the care with which Robert used to place Clyde on his body.  It was from the heart — something that cannot be “faked”.  This little boy felt a “kindredship” with Clyde.  I would later, but subtly find out why.

Instantly, Clyde was his buddy.  “That’s my buddy,” “How you doin’ buddy?”, “You’re such a good boy, buddy” were the affirmations Robert gave Clyde — and Clyde ate it up!  Robert was elated when he guessed Clyde’s weight – 6 pounds – correctly on his first guess.  He said, “Hey buddy — I KNOW you!  I KNEW you weighed six pounds!”  I told Robert that he was amazing, that no one had guessed Clyde’s weight correctly the first time.  Okay, it was a little bit of an exaggeration, but he was a little boy who was just so happy.  I think God will forgive me this time.  When a big dog who was particularly vicious came into the office, Robert put Clyde up over his shoulder, held him, and whispered to him, “Don’t you worry, buddy — I won’t let anyone hurt you.  You don’t even have to look at that mean dog.”  He was Clyde’s protector.  As I kept telling Robert all of the good things about him — that he was so gentle, that Clyde liked him so much, that he was such a good protector and that dogs know who good people are and Clyde could tell that Robert is just GOOD, he began to beam.  It was at that point that Robert’s friend, Zariah, decided that she too wanted to snuggle with Clyde.

Robert was very reluctant to relinquish “holding priveleges” to Zariah.  He said that Clyde was HIS buddy, that she could play with Bonnie.  He said, “He has been afraid because of the other dogs.  You might scare him.”  That may have been true, but it was very quick thinking on Robert’s part as a reason for Zariah NOT to hold Clyde!  After some discussion, I told Robert that he needed to let Zariah hold Clyde for awhile.  You can well-imagine the delight on Robert’s face when, after handing Clyde to Zariah, Clyde wanted to return to Robert.  He puffed up and said, “See, Zariah, that’s my BUDDY.  He wants to come back to ME.”  He petted Clyde and assured him that he was going to stay with him, that he was right there.

Throughout the course of this encounter, I was torn between giddy laughter and tears of sadness.  Robert was insulted for Clyde when Zariah asked him, “Do you like Justin Beiber?”  In utter disgust, Robert said, “JUSTIN BEIBER?  Zariah, Clyde’s a man — he doesn’t like Justin Beiber!”  At that point, Robert took Clyde back and said, “It’s okay, buddy — Justin Beiber.  My goodness.”  Then he said, “You don’t like Justin Beiber, you like” — and started to sing the Wobble song.  He must have thought that I may not like that song, because he got “Wobbl . . . ” out and stopped.  I said, “Wobble baby, wobble baby, wobble baby, wobble . . . ”  With that, Robert leaned away from me, shot his head toward me and dropped his jaw.  It was PRECIOUS!  He said, “Oh yeah.”  Then Robert and I sang the “Wobble Dance” song while Robert had Clyde gettin’ his groove on to the music.

Zariah was telling me that her puppy was going to be big — that it was a shepherd.  Robert said, “I wish I could have a dog.  I would have a dog just like Clyde.”  Zariah said, “You do have a dog.”  Robert searched the room, thinking.  He said, “No I don’t.”  Zariah said, “Yes you do.  Your mom has a puppy.”  Robert said, “Yeah, but that’s my mom’s dog.  I don’t see her.  I live with my dad.”  Zariah said, “Some weekends you see you mom.”  Robert responded, “Not for a long time.”  ZING.  The moment for which I was not prepared.  The moment that takes your breath away so badly that you don’t know when — or if — you’re going to get it back.  Clyde was the dog we “rescued” from bad people.  Clyde was Robert’s buddy.  Robert was Clyde’s protector and NO ONE was going to hurt him.  The emotion flooded over me like a tidal wave.  I struggled with all my being to keep my composure.  Robert and Clyde were kindred spirits.

I managed to maintain composure, pull myself together, and continue with the merriment that Robert was obviously enjoying with Clyde.  While he had some interaction with Bonnie, she was bigger and well, she was a GIRL.  Robert and Clyde were buddies.  They had a bond forged in the early seconds of their meeting that was undeniable.

I have thought and thought about this little boy, about what his life might be like, about how grateful I am that Zariah’s mom provides him a safe-haven on the weekends that he doesn’t see his mom.  And I have cried.  A lot.  And I have re-lived those moments today in my mind already tens of times.  I have also giggled — at the sweet little boy who was such a good friend — such a good buddy, protector, and hero — to Clyde.  And as I mimicked Robert’s rendition with Clyde of him getting his groove on, I sang “Wobble baby, wobble baby, wobble baby, wobble.”  And I giggled.  And I hope that wherever you are Robert, you felt that today you are someone incredibly special.  I hope that one little dog could give you that feeling for however brief your encounter with your buddy was today.  God bless you.

Thank you Ruthie . . . (a reminder about what’s important) April 7, 2012

I stumbled upon this draft that I had written and didn’t post.  It was written at the time of my granddaughter’s third birthday and it made me giggle!

My friend, Ruth, posted a question about my little granddaughter, Sarah on facebook.  It fell on the heels of me feeling REALLY down over more health “news” that was just unwelcome.  Ruth has this way of reminding you of what’s important in life without beating you over the head with it.  She’s just perfect that way.  I wrote her a personal message, but after reading it to my mother, decided to put THIS as one of my blog entries.  Because this really IS what living is about:

Ruthie,

I Had to laugh when you asked whether I saw myself in Sarah Grace at all.

Ruthie, she is hard-headed, determined, has her OWN idea of how things are supposed to be, questions EVERYTHING that doesn’t make sense to her, has her own idea of what she is going to wear, how her hair is going to be —- you name it!  She puts her one hand on her hip and starts to tell me something and I think, “Holy Cow!  She’s only THREE!!  How can she look like me already??!!”

She bosses around the dogs — my mother’s beagle and my two — and they do what she says!  She has an affinity for purses (Oh help us all) and she doesn’t even KNOW that I do because I have only used ONE purse around her!  When she saw one that I FINALLY broke down and spent money on a new purse for me, she said, “Oh, Grammy, that purse is FANCY.”  (She is getting the miniature version of it for her birthday on Saturday!)

When my friend Karen was here, she later was HOWLING laughing because Sarah Grace sat beside me while I put my make-up on, grabbing each brush off my lap after I used it, then using it while looking in the mirror.  She even gently reached acrossed and stroked the brush over my eye make-up and put it on . . . correctly!  Because I have to hold the mirror farther away to see — solely because I’m 49 — Sarah Grace thinks that THAT is the way you look at yourself in a compact, so she holds it at arms’ length!  This is how we got to the “she used black marker for eye make-up when they were driving to Disney World” —- she was “getting ready in the car”!

By the same token, she is so loving, so gentle, so PROTECTIVE of Solomon (her brother) and she LOVES to be loved!  She has this little giving soul, and I love watching that aspect of her, as well.

Of course, the hard-headed aspect is SO much fun to watch because it is the part that Ashley just rolls her eyes at!  The other day, Sarah Grace was mad at me and said, “And by the way, you are NOT my mother’s mother!”  Then, she was frustrated with me because evidently I didn’t hear her trying to get into my room.  My mother said she turned on her heels, came into the room with her hand on her hip and pointing to my door and said to my daughter, “YOUR MOTHER is not in her room.  She’s gone!”  Ashley asked, “Well, where is she?”  Sarah said, “I don’t KNOW, but she isn’t answering her DOOR!”

Most of the time, Ashley just looks at us and shrugs.  It is a LONG line of hard-headed women from which Sarah Grace has evolved!  We were talking about something she said and my mother said, “I think I heard something like that come from another little girl I knew.”  I said, “Yeah, I think her name was Mary Ashley Ellingsworth.”  My mother said, “That’s funny, I was thinking her name was Lynne Ann Grawemeyer.”  My daughter howled laughing.  Later that night, my mom and I laughed together that if my grandmother was here, she would have said, “I think you’re both wrong, because I think her name was Mary Louise Kaiser.”  (my mother)!!

It’s funny to hear both my mother’s inflection in her voice, as well as mine and my daughter’s.  Because of my daughter’s occupation, Sarah Grace  has been exposed to quite a bit more than my kids were.  Right now she is fixated on the fact that Grammy has “breastes”.  She went so far as to feel them to ensure they were real!  I just looked at her while she was doing it, and she said, “Grammy!  You have breastes!”  I said, “Well, yes, I do.”  She said, “But you don’t feed babies with them, do you?”  I said, “Not anymore, Sarah.”  She said, “But you used to?”  I said, “Yes, when your Mommy and Uncle Brando were babies I fed them.”  She said, “You’re their mommy, aren’t you?”  I said, “Yes, Sarah, I am.”

She segues that into, “The dogs are your babies, aren’t they?”  I thought, “This is going nowhere good — fast.”  I said, “Well, sort of.”  She said, “GRAMMY — I didn’t mean that they were your in your belly babies, I meant that they were your dog babies.”  (Silly me . . . )  I just giggled and said, “Well, you’re right!  They’re my dog babies!!  They couldn’t be my belly babies, could they?!!”  She said, “NO, GRAMMY!”  and laughed a full belly laugh.  Then she said, “My mommy and Uncle Brando are your BELLY babies!!”

Thank you for reminding me of the IMPORTANT parts of life.  I think I need to blog about THIS, because THIS is really what living is all about!

Love you,
Lynne Ann

Hmmmmmmph . . . November 6, 2011

This is a particularly dark time for me and I am really not used to that.  I am the consummate “happy girl”.  When people ask how I am I say, “Great!” or “Fine!”.  In reality, that is about the farthest thing there is from the truth.  I am beginning to believe that it is starting to make me a consummate liar.  Because the truth is, I’m not okay.  I’m not okay at all.

Right now, I’m battling mononucleosis (again) that has really kicked me in the hind end.  I went out for my mother’s birthday on October 23 — it was the first time since my diagnosis 7 1/2 weeks ago.  I went to look for my nephew on Wednesday, and that left me keeping my butt in bed for these past two days.  One of my tick diseases is out of remission, but we can’t do anything about it until the Epstein Barr Virus has calmed down.

I have the “remitting” type of Lyme disease.  In a nutshell, it means that it goes into remission, then it comes back — and we have to try to shove it back into remission again.  Doing that is a whole other world for those who haven’t dealt with anything like this.  It’s basically being told you have to go back on chemo again — complete with the side-effects — every time these damned spirochetes come out of hiding.  And as things go, these things are really GOOD at hiding — even down to hanging out in the joints in your fingers.

I do use alternative therapies as well — and they help.  They HELP.  Nothing so far, though, has absolutely kicked these diseases out of my body for good yet.  When the tick diseases come out of remission, or when the Epstein Barr Virus (mononucleosis) decide go on a full-out attack on my body?  Well, my brain doesn’t like it so much, so my epilepsy acts up.  Having seizures — and I realize that they can be dangerous — but they are just humiliating.  I hate them.  I despise them.  I would give anything not to have to have my friends and family see me when that happens.  Then to “wake up”, look around — and inevitably it is at the ceiling because they have placed you on the floor to protect you, your first thought is “Where in the hell am I?”  Your second thought?  “Oh shit.  I’ve just had a seizure.  How embarrassing.”

This is the part of my life during which I am supposed to be having the time of my life.  Having your chest used as a dart board weekly to keep your port accessed for medications and having to watch to be SURE that it doesn’t get compromised so that you don’t become septic isn’t supposed to be part of this game plan.  Even bathing and showering becomes a challenge — one that you have to take very seriously because the bandage cannot be compromised for fear that any bacteria that would enter where the needle inserts would go straight into your heart.

Of course, lying in a bed in one room — some days seeing only one person — some days seeing none — isn’t supposed to part of it either.  Wondering how you are going to get SOME type of food to eat — the kind you can eat — isn’t supposed to be part of it, either.  Wondering why you no longer want anyone to touch you — why hugs hurt, why they feel like an insult to your body — isn’t supposed to be a part of this time of my life either.

There are so many other medical things that have happened to my body as a “watershed” effect from being misdiagnosed for so long that the list is even too long to give the emergency room!  I just shake my head and say, “It’s not that big a deal.  Next.”  They look at me like I’m crazy, but if I handed them a printed out list of all the things that are wrong, they would think I’m crazier.  Some days, I question that myself.

What I do know is this:  This is not the life I expected to live.  It is not the life I want to live.  It is the life I am stuck with and I have to make the most of.  So I will continue on, ever the “happy girl” and I will tell you that “I’m Great” or “I’m Fine” and I will hope with all my might that you buy into it.  Because I don’t want to talk with you about it.

I don’t want you to see that I am weak.  I don’t want you to know that when things really need to get done I am pretty much worthless.  I don’t want you to know that there are days that I can’t stand living like this.  I don’t want you to know how much it hurts me that I can’t drive or I can’t continue with the career that I loved so much because I just can’t do the work.  I don’t want you to know how very little I can play with my grandkids before I am simply exhausted.  I don’t want you to know how much less the person I am than when you once knew me.

So if you ever see me — which is doubtful because I rarely leave this room, much less the house, when I lie to you and tell you that “I’m great” or “I’m fine”, please just leave it at that.  The reality of having to tell you the truth, particularly right now, would be just too much to handle.

The Amazing Ability of Friends to Re-Teach You to “Live” August 17, 2011

Since 2002, I spent a lot of my life dying.  It wasn’t like it was a choice, it just happened.  I got used to not being able to go places, got used to feeling incredibly ill, and I resigned myself that my life — however much was left — was going to be spent pretty much bed-ridden, alone and lonely.  When you have an illness that isn’t properly diagnosed and keeps getting more severe, or worse yet, when you have physicians telling you that they didn’t know exactly what you have, but it was going to kill you, you really do resign yourself to that.  In order to prepare yourself for that, you try to “steel” yourself, so that when the end really does come, it won’t be quite so difficult to accept.  I had gone so far as to write letters to people that I had “wronged” in my life.  They were letters of apology, some with explanations as to why things happened the way they did, some simply telling the person how much I regretted my actions.

When you have spent that much time thinking that way, you tend to keep that mindset.  Even in the midst of finding the doctor who ultimately saved my life, going through the treatment, finding out I was in remission, somewhere in the depths of my mind was always the question, “What if?”  “What if I come out of remission?”, “What if I do and they can’t get me back in remission?”, “What if I’m not going to get to see my grandkids grow up?”  The “What if’s” are so prevalent that you become fearful of getting close to anyone, lest you have to tell them goodbye when that is the absolute last thing you want . . .

And yet, I am now in remission and I feel good.  I am now in the process of re-learning how to live — really live.  Not just existing, not just “Okay, I recognize that I will never be like I was, but this is it”, but really LIVING.  Having fun.  Laughing until your belly hurts.  Going out with friends and not being embarrassed that you have a tube sticking out of your heart.  Re-learning that it is really healthy to get emotionally close to your friends once again.  While it sounds crazy, it is something that is really hard to do.  When you have built a protective wall around yourself for so long, breaking it down feels like a brick-by-brick task.  And yet, it is something that needs to be done because it contributes so much to your overall health.  Also, as each brick is removed, you get a flood of emotion and a sense that you can breathe just a little bit easier.

The relationships I have with my friends now are what lift me up.  They make me feel alive.  They make me realize that because of these incredible people in my life, I am now more determined than ever that I am not only going to stay in remission, but I am going to be cured.  These friends believe in me, they let me know that I can accomplish being cured despite overwhelming odds, and that they are going to be with me every step of the way.  These are also the friends who will no longer accept my staying at home in a “hermit-like” state.  They are equally determined that I am going to get out in this world and really live.

I wonder sometimes if these people — these amazing friends — realize how important their role is in my life.  I wonder if they know how much I appreciate them.  I wonder if they know how much I love them.  I certainly hope so.  Even the friends with whom I have limited contact are so unbelievably important.  Each time I read their words, their encouragement, their “gentle nudge” pushing me in the right direction, it is yet another reminder that I am going to kick this and I am — and need — to get into the process of really living.

Since realizing that I am going to kick this, I am going to live, I have worked on re-building friendships that I had abandoned for fear that it would hurt too much when it was my time to leave.  I have also worked on re-establishing friendships from long ago.  Both of these things have been such an amazing adventure.  While I wouldn’t want anyone to get sick and have the overwhelming fear that death is just around the corner, I do wish that everyone could feel what I am feeling by re-connecting with these unbelievable, loving, giving, amazing people!  It is like nothing I have ever felt.  It is this absolute waterfall of unconditional love and acceptance.  How many people — in their lives — get to feel this feeling?  My guess would be very few.

I don’t think that I am being “Polly Anna-ish” about this.  These friends know that I have days when I am just wiped out.  They can hear it in my voice, they can “sense” it in what I write or text to them.  And they are okay with that.  They allow me that.  They don’t judge it, they don’t try to push me into doing something that they know I simply can’t do, and they just let it happen.  They also let me know that when I am in a condition to go out and have fun with them, they are readily available.  And that isn’t just talk.  They really are readily available.  Even my friends who live out of town, out of state, or out of country!

I hope that most of you who read this know that this is written about you.  I hope you know that your continued support and encouragement has been such an integral part of my re-learning to live.  Each one of you adds a piece to the big picture of what it’s like not only to be alive, but also to really enjoy living.

I also hope that when you read this, you will know how incredibly appreciative I am that you do this.  I hope you know how important you are.  I hope you know that you make my life so much better just because you are in it.  You are one amazing group of people, and I am so blessed that you are helping to re-teach me how to live . . .

Bouncing back . . . again. August 7, 2011

I feel as though I’m back in grade school again, playing with one of those kids’ playground balls that everyone used to use during recess.  It was used for four square, kickball and the dreaded “dodge ball”, where you were “it” and were against a wall and the entire goal of the game was for some kid in the outer perimeter of would-be assassins with deadly aim to knock the living crap out of while you were running to get away from it.  Yep, that’s about how I feel right now.  I’m in the “adult version” of dodge ball.  I didn’t like that game back then, and can tell you that I sure don’t like it as an adult and it isn’t a GAME we’re talking about, it’s my LIFE.

Life has its twists and turns, its ups and downs, blah, blah, blah.  I know that just about as well as anyone.  I’ve even come to expect that.  It’s LIFE, not FANTASYLAND.  What I didn’t expect, though, was that just as I was beginning to get used to each bit of news that was going to change my life — oh, forever — that yet another one would come along that required just as much work, just as much investigation and just as much change and effort on my part as the others did.  Maybe more.  This one blind-sided me.

I’m on dietary restrictions that when you’re first diagnosed make your eyeballs cross.  I pursued the information with fervor, had a mentor that literally saved my life  (And I do mean literally), and I have held firm to those restrictions for the past six plus years.  It’s not easy — and I gave up a lot of foods that I really love — but it was a choice between giving those up or eventually “living” connected to a ventilator.  Didn’t sound much like living to me, so I gave up the foods.

So, now in the midst of having pneumonia (from choking on a cookie that is the kind that is “safe” for me to eat, no less), and having a plantar’s wart removed from the bottom of my foot (LOL), I get test results back from my doctor that shocked the living daylights out of me.  I probably shouldn’t have gotten them Friday.  I hadn’t mentally “steeled” myself for results that perhaps may be bad.  I also hadn’t asked what the 20 tubes of blood he was drawing were for.  That may have helped me say on Friday, “Ya know?  I may not be ready for this.”  At any rate, the world keeps turning and if you don’t do these things, you find out anyway, whether the timing is good or not.

What I found out is that I have yet another “medical condition” (non-contagious so no one worry!), but also that my life, once again, is going to be turned upside down.  Also, while I knew that I had some minor “food allergies”, I didn’t realize that I had real-life, honest-to-goodness, these are making you sick “FOOD ALLERGIES“.  Holy crap!  So another “medical condition” and to add a little icing on the cake some pretty serious food allergies?  I don’t want this!  I didn’t sign up for this!  I don’t want this new “condition”, I don’t want to have serious food allergies and I don’t want the food changes I’ve already had to make!  Now I have to make more?  And of more of my favorite foods?  You have got to be kidding me.  This has to be a joke.  That was my first thought.  Seriously — just tell me it’s a joke and we can all go back to our happy little lives.

And yet, there is no kidding involved here.  No joking, no clowning around.  The food changes I have to make — in order to re-gain (some) of my health — mean that once again, no more “mixes”, no more pre-made foods none of the “conveniences” that I have gotten used to since my first “food dilemma” was diagnosed and nothing was available pre-made.  Once again, I’m on my own.  So now, not only is there no Barley, Rye, Oats or Wheat on the menu, there is no milk, no milk-containing ingredients, no casein, no eggs, no egg whites, and a rather long list of others for which I have to watch.

This means that, once again, I’m back to living on things that I know are “safe”, reading more labels, fixing things myself (when I’d really rather just sleep because I’m exhausted), and making the CHOICE to be healthy.  It was easier when I didn’t know.  It’s that whole “ignorance is bliss” thing.  Or not.  Not knowing is what has been MAKING me so tired.  Now I have a choice:  Do what is right, or spend my life exhausted.  Sheesh.

I’m already the “weirdo” of the family.  I already eat “organic foods”.  I already am a “freak” because I watch the ingredients that are in what I eat so closely.  I don’t vary from that.  I don’t “waiver”.  Dietary stringency isn’t something that our family does well!  I have no choice.  Well, actually I DO, but again the whole ventilator thing just doesn’t sound like my cup of tea.  Which — and I think this is almost funny — I can’t even have my organic wild honey in my tea any longer . . . I’m too allergic!  Guess I’d better watch out for bees!  Now that’s funny.

So once again, I’m that kid up against the wall, dodging that damned ball.  Only this time, I’m an adult, it’s life that is aiming at me, and it has pretty good aim.  Then again, when I think about it, I’ve always been pretty good at dodge ball!

Fall seven times. Get up eight. March 6, 2011

Geez . . . it seems like my posts lately are such downers.  I have always been “the happy girl” – it has been my role throughout my life.  Some days being the happy girl is just so difficult.  I DON’T want to be the friend that everyone avoids because she brings your life down.  I want to be the friend who is uplifting.  I think that’s what I’m really struggling with.

I’m sick.  I’m really sick.  I’m also pretty scared.  After my “adventure” at the emergency room the other night, I thought that maybe my “dark cloud” that seems to be so very prevalent would disperse.  And yet, once again, I was wrong. 

I was pretty excited about the thought of going somewhere this weekend.  I was going to go to the bookstore.  I like it there.  It has people there, and I can interact somewhat, but there aren’t so many people that I get the “stares” that occur if I’m in a big crowd.  I walk as though I’m drunk.  All of the time.  It is painfully embarrassing and the looks I receive when someone is helping me walk — especially if we are leaving a place that serves alcohol — is incredibly demeaning.  It may be the aspect of my diseases that I hate the most.

What a tangent, eh?  At any rate, I had another “neurological event” Friday night.  Feeling as “normal” as I do these days, I got up from the bed to go to the bathroom.  I was fine.  I walked to the bathroom door, then felt “weird” (that is the word I use to describe anything neurological!), then knew something was wrong.  Everything was going very, very dark.  I remember trying to grab the doorway because I was falling backward (that’s how I fall — vs. “that’s how I roll”).  That’s about all I remember until I see my husband over me asking me if I can hear him.

How did I get on this floor?  Why am I lying here looking up at the ceiling?  Why does my left hip and leg hurt?  Why does my left shoulder hurt?  Then of course, “What in the world just happened?”

Who knows.  I refused to go to the emergency room — my gosh, I’ve already been there once this week!  I’ve had enough broken bones that have healed on their own.  I can’t have a cast on my leg and I sure can’t use crutches.  My wheelchair wheels are ruined from the house we previously lived in — don’t ever buy a house from Mongold Construction — so I’m pretty much screwed even if something is wrong.

I guess “Fall seven times” hit me because I fall so much.  I’m starting to get weary.  Getting up requires a lot more effort.  I’m tired.  I feel like a boxer who has gone at least one too many rounds.  I’m punch-drunk and I’m exhausted.

It’s kind of unbelievable, though, that there are only a very few people I let know this.  I was talking with a friend about that tonight.  It’s an aspect of my life that is so difficult for me.  I don’t like how hard I have to work to be “the real me“.  I want to be the me that I was because I really don’t like the me that I am right now.

Tomorrow I will get up.  Tonight was just an emotional fall.  I’ll gather the courage – once again – to be the “me” that everyone knows.  I’ll put aside the sickness, the awful headache, the ravaging that the medications do to my body and now the hip and shoulder pain and I will be the person everyone knows.  Feisty, cracking corny jokes, laughing and playing.  The “me” that I remember and the “me” that I want back.

Fall seven times.  Get up eight.