Mean girls........

You know what I am talking about.  They are the girls that think they are cooler and better than other girls.  They are the girls that say mean things about you, to you, and to others.  Bottom line, they are mean and who would ever want to be friends with them?

Let's go back to a few days ago.  Heather was feeling good, decided to put on a cute sundress and run some errands.  Keep in mind, Heather's weight is still low and she lost all of her muscle mass.  She's sadly judged for being too thin or when her stomach is swollen, people ask when her baby is due.  

Anyway, as she was beginning to carry two bags of groceries, one in each hand, she noticed a Mom and teenage daughter staring at her, pointing, and laughing.  I guess you know where this messed up story is going.

So as they approached Heather, the Mom said to her daughter "well at least she can carry her food," then they cackled like the mean "girls" they are.  They then looked over their shoulder at Heather, continuing to laugh at her as they entered the store.

Flabbergasted, Heather just came home and shared the story with me.   We talked about what she wanted to say etc.  It is always easy to come up with a good zinger after the fact - we had some good responses - trust me.  Here are a few of our comments that are appropriate for posting (yes, sometimes I have a filter):

1.  Walk away with dignity (like Heather did) and be thankful that you don't know them.  Be thankful that she isn't your Mother and you aren't her daughter.

2. Walk up to the them and tell them that although it is none of their (F'ing) business, that she is dealing with a chronic illness and she was just was released from the hospital.

3.  Pass them one of the Lyme Awareness blog cards and educate them.  Ummm, not wasting a business card on those two.

4. My mean ass comment would have been to the Mother.  I would have pulled her aside and told her that I feel sorry for her daughter.  I would say in an immature snarky voice "You can pick your friends, you can pick your nose, but you can't pick your family".  Then, I would tell her that sadly SHE is the person responsible for teaching her daughter the social graces of life and she is obviously doing a TERRIBLE job as a Mom when it comes to manners and other people's feelings.  I would then tell her that Heather has been sick for 18 months. 

5.  I would whisper in the Mom's ear that she is a mean spirited, heartless, and ignorant bitch and she has no idea what Heather has been dealing with. You can imagine my unfiltered version of this sentence.

6.  Stoop to their immature level and say "sticks and stone can break my bones but words can never harm me."  That is a really stupid rhyme.  Maybe as a child you think that, but we all know that you can't take back words and words HURT.  

Did you notice how I took the high road on this one and didn't attack the daughter? Sure the daughter should have known better, but I am more charged up about the Mom.  Mess with my daughter and game on beeatch (yep - look at my use of urban slang for bitch).  My revenge, I will blog about you. So there.

This blogging is pretty therapeutic.  Get charged up, write, save, post, done, done, and done.  Bye bye mean girls.  Karma is a bitch.  Oh well.

Ok - I can calm down now. 

This isn't the first and it won't be the last time that someone makes fun of Heather (or me).  Regardless, whenever it happens, it still stings.   

If you have been following my blog you know that I have blogged about not judging a book by it's cover.  I could write more about this Mother and Daughter duo, but they don't deserve any more attention.  I think I have said enough.

Let's end on a happy note.    Heather is eating more, getting stronger, more doctor appointments, looking for more answers, and staying focused.

I love you Heather. Once again, I want to be you when I grow up.  You handled this situation with so much grace and dignity. 

Lisa
xo

Succ ......... suck

I got your attention right?   Enough of these silly blog titles.

Don't you love the planter for my succulents?  The ol' tree stump looks pretty darn fancy now and my succulents are happy.   AND........Lyme disease sucks.

Since I have your attention, let's move on. How do I begin - nothing bad, just some of the many thoughts that are spinning around in my head.

First, Heather is healing from her surgery and hospital stay. I thought the Lyme doctor would be the primary doctor and Lyme would be the focus, but we had to take a step back and look into the gallbladder and liver issues.

We are happy to report that her immune system is calming down and the liver enzymes are in the normal range again.  Heather has an appetite again, thanks to the removal of her gallbladder, and she is back in the kitchen concocting healthy and yummy low salt meals.  We met with the Lyme doctor soon to discuss the last three months and circle back to her Chronic Lyme issues.

When Heather was first diagnosed with Lyme, and after we realized that she was having some serious chronic issues, I was so empowered to want to share her story in hopes of helping someone else. I wanted the world to know that one tick bite, one small stupid tick, can infect you with a bacteria that will rob you of your health and drain your finances in the process to treat it (sadly not cure it). I wanted the world to know that the CDC and IDSA don't recognize "chronic" Lyme and therefore, if you want to see a Lyme specialist and be treated, it is cash up front. Cash. Not insurance. Cash. One small tick can do this - so crazy.

When I discovered I needed a venue to quickly spread my thoughts and ramblings, I realized that social media was the best way to go. Until 2015, I never had a desire to have a Facebook account. I am ferociously private. Pretty fun considering how much we are sharing about Heather's very personal medical journey.

I truly understand that social media is a great way to share information and keep "in touch." However, I must admit that there are days when I don't want to see how perfect and fun everyone's life is, I don't want to read about sorrow and sadness, and I may feel a bit envious of pictures that people post from their trips.

Then, I wonder how people react to my posts. I certainly don't expect people to read my blog, but I am so humbled by how many have read my blogs. Some days the numbers are staggering, to me, and it seems impossible that thousands of people all over the world are taking few minutes to read our story. My goal has only been to educate and share in hopes of helping someone.

I also find it odd as to how easy these words just flow. I write nerdy technical manuals and documentation for a living, so this "story" telling style of writing is new to me. You know how they say if you love what you do for a living then it isn't work. Well, I love Heather so much that writing about her is almost effortless.

 I just have to find that perfect balance of what we should share, how honest I should be about my feelings (you know the deal - scared, anxious), and whether I should throw in some humor. The humor part is tricky, I still find potty humor a bit funny and my mind can go into the gutter pretty quick - hence the Suck versus Succ blog title. So many inappropriate things to say right now and so little time. 

I guess what is so difficult for me now, is how to handle this next phase of Heather's journey. Does the internet need to know about the roller coaster ride we are on.  Basically every time they do a scan or blood test, they find something odd, it is investigated and diagnosed, but they are always stumped that her diagnosis doesn't  match with other issues going on or the blood work.  A few words we're sick and tired of hearing are:  unique, slightly, perplexed, complicated, unknown etiology.......

Don't get me wrong. I know how blessed I am to have Heather and I know this isn't the worst diagnosis. I am just still processing all of these changes. 

One thing I will tell you though, is a mother's intuition is usually spot on right. Over the last 25 years, I have asked Heather's doctor's about her immune system. It isn't like she was always sick, but when she caught a cold or flu, it zapped her harder than a "healthy" person. When she was in the NYC hospital and they were trying to figure out why she was so sick - I brought up her immune system issues again.

One thing I can tell you is that her "slightly" "unique" immune system "complicates" her health and doctors are "perplexed" about the "unknown etiology" or her liver issues.  HAHAHAHA- I just crack myself up - I  used all the dumb words that frustrate us.  Bravo.  

I know I can't change this path that she is on - I can only accept it, help her make the necessary adjustments, try not to look back, and focus on the future. Sounds easy right? Tell my brain that when I wake up in the middle of the night replaying the shoulda - coulda - woulda scenarios in life.

So here I sit in front of my keyboard, wondering if I should just shut down my Facebook, stop the blog, and disappear into my former non-social media self. I do know that it has been wonderful to see pictures of people that I lost touch with over the years. It is also sort of therapeutic to be able to write and express my thoughts.

The funny thing to me is that when I finally joined social media, I dove in head first - I didn't test the waters - just a big splash. Full disclosure about Heather's health, pictures of us and our life, and information that I would have only shared with my closest friends and family.

For some unknown reason, I just felt that the internet needed to have access to my thoughts. That in itself is funny, terrifying and presumptuous of me. Aren't you glad you get to hear me thinking out loud? Shut down Facebook, stop writing, keep blogging, blah blah blah. Makes me laugh - I mean really now - I know I can quietly slip away - but as I type this, I know I will keep on blogging. Whew - I don't know about you, but really Lisa?!?!?!?! This last paragraph was all over the place. 

We have this one Heather - I promise you - there are so many wonderful things in life waiting for you.

To wrap this blog up - liver disease is complicated, enlarged organs can be disconcerting  (wow - did I just say that - the things I could say right now about enlarged organs) and Lyme Disease SUCKS!!!!!  There is nothing succulent about any of Heather's health issues.

xo
Lisa

Let's talk about the book

No silly, I'm not writing a book about Lyme disease .... I'm talking about my lime colored three ring binder that has Heather's medical records for the past 18 months.

For those of you new to this journey, this is MY best guess about the last 18 months.  First, when Heather was 12 years old we found out she had a slightly compromised immune system.  Then, in the fall of 2014 Heather starting getting sick with the flu, tingling in hands and feet, and numerous kidney and bladder infections.  Her immune system was probably getting annoyed.  Then you add in the Lyme disease diagnosis and aggressive antibiotic treatment in December 2014 and her body was like WHOAAAA - what the F is happening.  Her body continued its silent attack on her organs, then to add insult to injury, throw in a surgery in 2016 and SCREEEECCHHHHHHH.  The brakes are slamming and Heather's body is angry.

Remember, we are in Lisa's world right now. I'm not a medical doctor, but I have done enough research to be dangerous.  Actually, if I were a character on a soap opera, my research would have been sufficient for a highly specialized medical degree.


Backing up, after Heather left NYC in 2015, I realized that I needed to get a copy of all of her test results and medical reports just in case she needed to followup with a local doctor.  Remember, we never knew about chronic Lyme and we really did not know the depth of  her crazy immune system.

So a few months ago, I took the time to put together the now infamous "Lyme book."  I bought a lime colored three ring binder and I made copies of the results for every CT Scan, Ultra Sound, MRI, blood test, etc. It also had business cards from any doctor that treated Heather and the dates that she received treatment.  At the time I had no idea how invaluable this book would be.

She is taking so many pills and supplements, that I also had copies of her medicines.  Sure the list of medicines was useful to give to doctors, but I discovered that having the 18 months of tests in a binder was invaluable to the new team of doctor's that were treating Heather after her gallbladder surgery and hospitalization.

Since Heather was new to the post surgery hospital and team of doctors, they were quite intrigued and perplexed about her case.   Heather was able to address the timeline of symptoms and diagnosis, but they were anxious to dig deeper and really see previous tests.   Queue the lime book.  Doctors were coming into her room and asking to see "THE BOOK."  They were flipping through it and writing down test result values.  Sometimes they would be thinking out loud and mention that they wish they knew what liver studies had been run on Heather.  Well, I flipped through my binder and could show them the information. 

Can you say anal.  hahahahahha.  Not like a butt, but super duper organized.  It makes me laugh because my house is a controlled clutter and the Lyme book is so beautifully organized.  I guess you can tell what matters most in my life and that is Heather's health.  Who really cares about a messy closet or cluttered work room.   Truth be told, I hate my cluttered work room.  

I don't brag much, but this book was a useful resource to Heather's medical team.  It allowed this new team of doctors to get a glimpse into Heather's Lyme journey and see the decline of her liver in the last 18 months.


On a related side note, Heather's liver biopsy was performed at a different hospital than the hospital where she was admitted after surgery.  Therefore, there was some difficulty getting a copy of liver biopsy.  I know - seriously, in this digital era it is difficult to send a one page document?  grrrrrr, yep, that is me growling.


When the biopsy report was finally obtained, this wonderful doctor came into Heather's room with a xerox copy for my Lyme book.  He beamed and said that he knew it would be useful.  Yep, it sure was.  The next doctor that came in wanted to see the liver biopsy and voila, queue the lime book.  OUCH!!! - my arm hurts patting myself on the back.

I will do anything for you Heather - even if it means trying to be more organized.

Heather is resting and getting stronger.  Her nerve pain seems to be subsiding in her legs -  YIPPEE.  We aren't sure about the next steps yet.  However, we know her liver and blood counts (low platelets and other things) are concerning.  Can you hear my heavy sigh?  SIGH

Last week we met with a hematologist for the first time.  This compassionate doctor spent 75 minutes with Heather - and yes, he too loved the lime book.  He acknowledged how frustrating it is for chronically ill patients that have to deal with so many doctors and each doctor is concerned about a different piece of the puzzle.

More later as this medical mystery tour unravels.   There is so much more that we learn each week and so many topics that we will eventually share.

 Prayers please for my baby girl.  She means the world to me.  

xo
Lisa