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
