Backstage Breakdown

We all love admonishment from an old friend, right? In some strange universe they can say whatever they feel, comment on what they see and it comes across as nothing but truth and love. This very thing happened for me last Saturday night. Others have said it, though maybe not quite as clearly as him.

I set the stage of my life story. I have perfectly cast my characters and set up scene changes. I have tried to make concessions for things that could go wrong. I have a backup in lighting, stage design and additional employees for minor plot twists. The difficulty comes with the script. That damn thing refuses to stay the same or notify me of major changes. But, to the best of my ability I roll with it. To complicate matters, there are many smaller stages in my theatre. Facebook is one of them. Near perfect husband: check. Amazing kids: check, check, triple check. Award winning friends and spiritual family: check. I could go on, but I have painted a clear picture. These things are real and true for my life. However, difficult family situations or devastating events, I will keep you stage left. Sit quietly and I will tend to you momentarily. I like to greet these things head on to stop the infection that is sure to bleed to the rest of the cast and crew if not addressed. We will do this as discreetly as possible. “Horrible health challenge number 3, we will elude to you in tomorrow’s segment but the details will be left off the script to allow the stage to be unaffected so the story can go on. It is with regret that I have to inform you that your character has been killed off of future episodes.” The irony is that contrast is necessary for any good story. The dark, the ugly and the messy are very much important.

I have a motto when it comes to opening up and sharing my life with people I could love. “Let me in and I will return the favor”. I am transparent to a fault. Always. Well, that was true until these last 3.5 years. Now, a beautifully constructed wall is in place, complete with rare stones and rocks and gorgeous color variations. In my mind’s eye it is majestic and daunting. There may or may not be a row of razor wire to adorn the top. This is not coming from a place of secrecy. God knows it is also not coming from a place of solitude or a struggle with an introvert type personality.

Faker. That wraps it up in as few words as possible. That is the word that rumbles through my brain, bangs into my self-image and stains my memories. It screams at me when someone asks how I am doing. I say I am “Ok” or “getting by”. The truth is that it comes from a place of protection. I am fearful to ever see that confused, tilted head look ever again. I have spent this time with an undiagnosed mystery illness that I could not understand, let alone whoever was inquiring. The doctors inadvertently caused the most damage. Some of the best responses to my physical wellbeing was, “maybe you don’t handle stress well”.

“Have you considered seeing a therapist?”

“I can see that you physically have fluid in your abdomen and very swollen joints, but I do not see a reason. Have you considered that because you had a total hysterectomy at 23, maybe your body wants to be pregnant?” “Well, no ma’am, I hadn’t considered that. Have you considered that maybe you shouldn’t be practicing medicine?”

In these last years of unexplained symptoms doctors have done a colonoscopy and endoscopy, I had surgery, and was given multiple different medications to try (which I usually never filled because the point was to cover symptoms, not solve anything). Each doctor eventually passed on my case and told me to go to pain management. Nothing more they could do. I have had several ER visits during this time when things took a drastic turn. My favorite ER visit included me being wheeled in, tears running, a huge belly with joint swelling and more pain than I thought was possible. I left that visit with a 2 week prescription for Valium. Yep, Valium.

Facebook. One of my small stages. This is a different story entirely. I believe fb to be reserved for happy, uplifting, positively encouraging things. Of course I enjoy staying in the know with friends and seeing their photos of growing families, darling kids and whatever acute situation they are going through. I have been informed that friends’ family members have passed, kids have broken bones, (my kid included) and divorces. Sad, but informative topics. I personally struggle with posts that are negative and spread hate. I feel people have enough of this to overcome in their own lives, nor do they care if today is a super sad, lay-in-bed-and-eat-cookies type of day for me. Therefore, I leave the door to my pain cracked ever so slightly. Those that know me best can read between the lines without me having to spell it out. The rest carry on thinking that I have some struggles but overall everything is fine. Liar. So where is the line? Social Media is not exactly the place to parade my issues and cry for help. I ask my tribe to step in when it gets too tough. Ok, fine, Liar again. I allow their help when they show up and do it anyway and do not give me a chance to say “no” because I truly do need it. So what about the friends that I do not often see? What about the friends I have had for a long time that only know the grownup me through Social Media? According to the almighty Facebook I am doing good so why do I sound like death? Why have I put up posts that sound rosy when life is clearly anything but that? Ouch. That is when I am cornered. Admonished. Called out to be real, asked to come clean and encouraged to share. It does make me realize that with this incredible network of friends, acquaintances, my church body and essential oil community, neighbors, best friends and their parents and relatives and kids…God has given me a lot. And it turns out I am not as honest about my life as I have always claimed to be. You’ll see. Just ask me. I will tell you that I am an open book. I hide nothing from anyone and I believe in the truth first and always. Oh, you want to know about my daily prison? Nope, not that. I keep it right here where you can only see a distant shadow and the rest is shrouded in the façade that my life is great. I have hope and God and a wonderful family, beautiful friends and the story ends there. The problem actually is that it doesn’t stop there.

My current health status is pathetic. Most days I could use physical help to get out of bed. Although that would mean admitting there is a larger problem than I want to face, so I go it alone. My joints swell to remarkable sizes and deliver the worst kind of pain. My bones and muscles are a nightmare I’d like to wake up from and the fluid that insists on collecting around my abdomen leaves strangers asking if it is a boy or a girl. Embarrassing. Something I have admittedly been prideful about (in my own mind) is my ability to stay upbeat and semi functioning for the sake of my incredible family. This is not to my credit, as I can now see I have done more harm than good. Even if that truth is only seen in their thoughts that I am doing better. Healing. This is followed by more responsibility and the belief that we are on a better road now and will continue to get better. At some point I break. I historically do not do anything small. So my breakdown is usually pretty hardcore. My husband walked in to a mess the other morning when he found me crying in a ball in the bathtub. I was blasting music hoping he wouldn’t hear my tears. Just to be sure I brought my towel into the tub to cry into. He let himself in (shouldn’t have shown him the bobby pin in the lock trick) and he sat quietly right by me. He waited for silence to ask what was wrong and how he could help. Too real? Maybe now I have opened the door too wide. But for the sake of honesty, this is where it will stay. This is my pain under a microscope.

I have Lyme Disease. I was diagnosed in August after 3.5 years of wild symptoms that have progressively gotten worse. 1 more trip to a Mexican hospital for 2 weeks, many doctors and treatment options and FINALLY we have figured out what will be the best for my particular situation. It is not only Lyme, but 3 strains to be exact. I have enough bacteria in my blood to level a football team, complete with a systemic Mycoplasma infection. Awesome. I have waited so long for this monster to have a name. Show your face, coward! When met with the possibility that someone had figured it out we naively hoped for a positive Lyme test. Please. Some answers would be great. Recently the doctor looked in my eyes after receiving all of my blood work and Lyme panel and said “Well, you could not possibly be more positive. In fact I am not sure after seeing these results that Lyme is even your biggest issue. You test positive for every type of bacteria that should send you to the hospital”.  I thought I would feel some sense of relief. Some hope. I expected to feel excitement that I now know what I am up against. That didn’t happen. Instead, anger set in. Frustration. How could I possibly go this long and not have anyone else find this? How could this beast be allowed to trespass in my veins, biofilm, tissues and organs? I never agreed to that. I never gave my permission. This creature broke into my space and hijacked my stage. Took over my crew and attempted to run the show. The anger did not last long, though I sometimes feel the all too familiar tug on my shoulder. I look him square in the face and ask him to leave. Sometimes he does. Sometimes we wrestle. The most lingering feeling is fear. What happens now? What will months and months of daily IV antibiotics do to my body? Why did I have to be awake for the PICC Line anyway? What about all of these natural options? Will ozone blood therapy, silver in my IVs, infrared sauna treatments, essential oils and supplements help to even out the damage that I am allowing? All of my questions about whether or not I could kick this without IV antibiotics have been answered with a thundering “NO” by every single doctor that has looked at my case. I have had 7 doctors between Sanoviv Medical Institute and my Lyme Literate MD. Fear had a grip on that day in March 2012 that I woke with a giant belly and pain. He has hidden himself off and on through out this process. It seems that for now he has pitched a tent and invited his friends. I personally delivered him an eviction notice. This too will be a process.

I commonly refer to my husband as a rockstar. Why? Because he is the most popular member of this family. Mason wants him home to wrestle, build things in the shop, help with computer questions or watch a documentary together. Izzy wants him home to play, laugh, watch a movie and run errands. The baby just thinks he is here to tickle, read to her and feed her. I need him because he is without question the best companion and love of my life. He takes care of what I cannot do and fills in the gaps that I leave wide open. He organizes and remembers, leads and brings life, hope, and the constant reminder that I need to get better to be the partner he deserves. He walks me back to Christ when I want to run. We make a great team, but no matter how good the team is, if you are a partner down things are not running at full capacity. I know he sees through me however I think he enjoys the time I pretend. We will laugh together, clean the house together, homeschool together. He will take me on a date and we will not mention the demon at the table. We put one foot in front of the other hoping that tomorrow it will be better. For the moment we will enjoy the façade. Bask in it even. Play and live and hope and dream like there is nothing threatening to kill me. It is like a mini vacation of the mind. I find it necessary and although he has never said it, I believe it does his soul good as well. Sometimes we take it too far. Sometimes we get excited about a good day or two and I don’t mention the newest symptoms and I try to walk without limping and we breathe and people invite us so we add a few events to our calendar and we try, knowing full well that there is a strict possibility that I will never make it to that birthday party, housewarming celebration or dinner date. Attempt.

Here it is. As much as I can fit into a post. For now we look out to an uncertain future.  Doesn’t everyone? This is real life for the moment. This is my life’s stage starring “Lyme Disease” and my plan to crush it. This is me trying to let you in. This is in response to a friend. This is what he asked for. Reality. Truth. A glimpse behind the wall. A peak at my backstage breakdown. Thank you.