My husband and I created a series of Lyme shirts in a fit of hysterical madness with how Lyme has completely changed our lives.
We want to share them with you and hope you enjoy the humor, sarcasm and general frustration with this
$6.00 from every shirt goes toward the treatment my family receives from Lyme. Our out-of-pocket healthcare expenses are between $1,500 and $2,500 per month
Me (Christina), infected in 2004 and confirmed diagnosis of Lyme in 2011. Main symptoms are major brain fog, insomnia combined with fatigue, restless legs, burning and hurting feet, headaches and memory loss. Well, and general craziness but that could be my Italian heritage.
My daughter, Isabella, infected in 2010 and confirmed diagnosis in 2015. Her main symptom has been fatigue and aches.
My son, Cameron, diagnosed with Autism in 2014 with our doctor suggestion Lyme is a possibility but negative tests so far.
My husband, James, diagnosed in 2008 with Rheumatoid Arthritis and chronic fatigue but could it be Lyme? He has still not been tested but has many Lyme symptoms.
The beginning of 2004 held such promise for me.
I fully recovered from the difficult birth of my daughter and subsequent ectopic rupture of a second pregnancy in November 2003.
I had launched my business and was back on the trail with my canine running partner, Carina. We were climbing hills, cranking out some mileage and basically loving life.
Through the years I had pulled many a tick off of the dog but never off of myself.
Until March, April and May of 2004. Which tick sealed my fate I will never know. I think it was #3 or maybe it was all 3; in the end, it just doesn't matter.
Tick #1 was in my shoulder, #2 I honestly can't remember but #3 was in my thigh and that is the one and only one that presented with the bullseye.
Within days I wasn't feeling well.
I felt like I had the flu. I was achy and running just the tiniest of low grade fevers but I wasn't worried because I was pregnant again and just naturally assumed it was the pregnancy making me feel like garbage.
I showed my mom the rash. She immediately told me to go to the doctor. "That is a sign of Lyme" she said.
It's not often that we can look back on a specific moment in time and think "what I wouldn't give to go back to that exact moment". Of course I didn't go to the doctor, at least not right away.
Within days of the bite, I knew something was wrong with the baby and lost him/her.
I went to the doctor, showed her what was left of the bullseye, told her about the tick, the flu like symptoms and the fever. I asked about Lyme and questioned a link to the loss of the baby and if antibiotics should be prescribed.
She looked me dead in the eye and said, "Lyme doesn't exist in California. There is no need for antibiotics. Sadly, women lose pregnancies everyday" and sent me on my way.
The general crappy flu feelings continued for most of the summer. I powered through. I had an 18 month old and a new business; feeling exhausted was just par for the course.
Then in November we moved. It was very emotional. We moved from my hometown in the SF Bay Area to the middle of nowhere Nevada where our nearest friend was a 45 minute drive away. It was normal to feel sad, a little depressed even.
I continued to be tired and emotional but as the winter progressed and we rang in 2005 new symptoms began to pop up.
My feet hurt. All the time.
My runs were getting harder and harder.
I was getting headaches but attributed them to my braces.
Food issues were beginning to get complicated like my tongue swelled and throat began to close whenever I ate gluten.
I forgot stuff, a lot, and was more irrational than usual.
During this time we were traveling a lot with my husband's company. Again I attributed everything to stress, travel, being a mom but I wasn't the only one who wasn't feeling well.
My husband started getting sick. Weird things like swelling in his hands and feet, constant phlegm, etc.
We were in a new house so we began to think we were having reactions to something they used in the build. We thought maybe it was the carpet or the linoleum in the kitchen. We had stuff tested. Nothing. And so, I powered through.
Late in 2006 I shut down my wildly successful company. I just couldn't do it anymore.
In 2007, my daughter was in preschool so, I went 'back to work'. I loved it. It was stressful to say the least (I was in the psyche profession working with family services) but I was working with such a great group of women.
Life was good. Yet, it wasn't. Then it collapsed completely.
My symptoms increased ten fold, literally overnight.
This is when the regular doctors visits and referrals to specialists began. I was fortunate to have an amazing PCP that tested me for everything, including Lyme. All negative. So she diagnosed me with Fibromyalgia and she prescribed meds.
You name it I probably took it. Meds for sleep, anxiety, muscle spasms, pain, energy and everything in between!
Everything worked, for a little while.
I saw a Podiatrist, Rheumalogist and a Neurologist. Everyone asking me if I had seen a therapist. "Yes", I responded "I share an office with one. I see her everyday".
On a trip back to the Bay Area in 2010, we took a family hike in the same park that I had been bit. Later that evening at dinner my daughter complained that her neck hurt. We pulled back her hair and saw the tick. My husband removed it and we continued on with the evening.
Finally, in the summer of 2011, I hit the wall.
I sat in my doctor's office and balled when she asked me how I was feeling. I could no longer hold it together.
She looked me in the eye and said, "That's it. I have watched you deteriorate over the years. You're done. I'm putting you on leave".
Of course I argued but in the end I think I was relieved.
I was a complete mess. I went home and did as I was told, which was nothing. I went back in 2 weeks, tried to sell to her that I was better. My husband didn't agree in front of the doctor; 2 more weeks of leave.
This continued for the entire 12 weeks.
Ironically, at week 10 I woke up and felt like I had REALLY woken up. For the first time in years I had a good dose of perspective and realized exactly how far gone I had really been. Apologies were in order. Then the realization kicked in that I was nowhere near ready to go back to work.
I went back half time and by Thursday morning of that first week I knew what had to be done. I resigned.
My life was about rest which is hard to do when you have insomnia!
In February of 2012, I had the meniscus in my knee repaired so, I rested. Then in late March, I found out I was pregnant! After all the years of trying it finally happened so, I rested.
I spent most of 2012 awake, in bed. November 1st, we welcomed our son and for the first time in years my body was good.
Actually, pregnancy and afterward my body was great!
Around his fourth month the giant woke up. The pain in my feet was back, the knots in my soft tissue were back. The headaches, back.
In the fall of 2013 we relocated to Colorado. Another incredibly emotional move. You don't live in a small town for 9 years and don't build amazing, beautiful friendships. Once again it felt like we were leaving family.
I expected there to be some glitches from the move. Moves are difficult and I wasn't super healthy. I didn't just experience some glitches; I fell apart and it made 2011 look like nothing.
I tried to walk my daughter to school one day which is a 2/3 mile round trip and ended up in bed for days. This was no way to live.
I was bedridden and I could not accept that this was Fibromyalgia.
For the first time I began to search for root answers. This was not an acceptable life for me. My family deserved better. I deserved better.
I met with an MD and went through the timeline, again. As soon as I said tick bite he stopped me. He referred me to a DO in Denver who then ordered the Lyme test through Igenex. A few weeks later we had an answer. CDC positive Lyme.
Hooray, right? No. I was too sick to start treatment.
I met with a new and amazing PCP. We continued my pain management from Nevada and worked on sleep. She referred to me to another DO. This is when I saw a ray of hope for the first time in years.
The long road back to a new normal was under way.
Thousands and thousands of dollars and a year later, I'm mobile. I'm able to walk and bike ride short distances. I am able to be a mom who is present enough to realize that something is not right with my son. We have him assessed when he is 18 months old and begin Early Intervention on his second birthday. He starts seeing my DO. He is autistic. Or is it Lyme? A new normal.
In 2015, my daughter, now 12, tells me she's tired.
She's sleeping 12-14 hours a night on the weekend. We back up her bedtime by 30 minutes. She's still tired. Her legs hurt. The dark circles are under her eyes. The summer comes and she's a bit better but still sleeping all the time. She's growing like crazy so I think maybe it is due to that...
School starts and I think to myself she needs a few weeks to get back in the groove; 7th grade is a big change. She doesn't hit her groove and as her mom, I just KNOW something is wrong.
We send her sample in to Igenex. Positive. My daughter, by no choice of her own is now a new Lyme Warrior, fighting for her life.
I have never cried that hard in my life. Not when my Nonna died, not when I had the rupture, not even when our son was diagnosed with Autism. I cried from a place of motherly pain because I know what's in store for her. I know there is nothing I can do about it, I know the fight she has in front of her and no mother would ever want that for her child. Ever.
We tested our son. His came back negative yet we are told not to be complacent.
She started treatment and the herx she experienced was terrible. She's 13. She has a life, school and friends. We will start treatment for her again this summer and she will fight.
We will be fighting with her and for her because we are all warriors fighting for a healthy life.
We will beat it one step at a time, together. In fact, we all need to work together, support one another, share treatment - what works and what doesn't and just provide each other with the love we need to get our lives back.
Many people know very little about Lyme.
I hope my shirts help people become more aware of the dangers of Lyme and get treatment as early as possible.
Thank you for your help! And if you read this far, please don't hesitate to reach out - we both need it. :-)