As many of you know, for the past 30 years, Jen has struggled with mystery illnesses, kidney disease at 9, degenerative joint and tissue disorders by 12, compromised immune system, countless doctors saying things from "oh, you're to young to have this" to "hmm, those are interesting symptoms. Don't know what to tell ya sister" (yeah, seriously). She has been relentless in finding the base cause of her health and a doctor that would treat her as a whole person. Until now.
After moving to Seattle exactly one year ago this November, in the first 4 months we were here, she saw more than a dozen doctors and specialists, all with different but separate diagnoses, and despite telling all of the doctors what all of the others were diagnosing, I had no one to connect the dots: Interstitial Cystitis, Pelvic Floor Dysfunction, Chronic Fatigue, Fibromyalgia, Anxiety/Depression, Hypothyroidism, Vitamin D deficiency, Rheumatoid Arthritis, Leaky Gut Syndrome, Metabolic Syndrome, Chronic Migraine with aura and vision loss.... you name it. But still, no one could give us a cause for all of these things. None of the symptomatic treatments they were giving her were working, and we began running out of options, and funds.
Finally, in March of 2013, she met a woman who had lyme disease and after looking it up further she realized that that was finally it. Every symptom, every list, every test: yes, yes, yes. The first and only REAL answer: Lyme Disease.
Normally, because lyme disease awareness has been so prevalent in endemic and epidemic areas, people look for the telltale bulls eye rash, or an actual full grown tick that is attached. If this happens and a doctor is notified, the treatment is a minor course of antibiotics and you're good. If it is caught within the first 6 months, treatment is a bit more complicated, but at this point it is still possible to irradicate the infection. Just 6 months after first exposure, it is considered late-stage lyme disease.Jen has had this horrific bacteria in her body for 30 years.We've also learned that she has other tick-borne co-infections called Babesia and Bartonella, and a genetic defect called MTHFRwhich basically takes the top level of her body's detox system and screws it up, making true metabolism of toxins very difficult.
Of course, if you know Jen at all, you know that she went into research mode, and practically has a masters degree in Lyme disease, complications, treatments, history, how it operates, prognoses, etc. You also know that she was an talented artist, writer, and project manager, getting her degree as a holistic health practitioner to pay her knowledge forward. At her healthiest in Summer 2011, she was running sprints and power lifting. She could flip a 375 pound tire. She could out-wit many, and could out laugh anyone. I called her my personal IMDB. She is also the mother of our 4 year old daughter Sofia.
[THIS IS JEN]
Sofia is such an amazing kid. She has taken this with more grace than you could ever expect from a 4 year old. I have been in some kind of illness since *I* was born so of course I've always been a sick parent. Like Hafiz said, I was at my peak. I felt amazing. I had lost weight and gained muscle, and felt like I was ready to take on the nutritional health degree. I got through the opening letter and reading the materials list and then it all started. All this pain and regret and guilt. Yes guilt. It is so difficult to be a parent that is not only sick but can't drive, can't cook, can't really eat, can't walk much, or at all without a walker or wheelchair. I feel like she's missing things by being with me some days when we don't have care here and it's just us upstairs in my bed, with snacks and juice in my dorm fridge since I can't get up and down stairs that easily, she always says that I'm getting better and that it's all okay and she doesn't mind and that I'm the best mommy in the whole world. If she thinks I'm the best mommy when I'm frozen in bed, wait until we take off on road trips and go hiking randomly, surprise adventures that she loves, running with her at soccer or helping her swing at softball or spotting her at gymnastics..... I want to do all the things.
But, I'm about another year or so of treatment away from being in remission. But, I see it... that tiny light. It's getting bigger, but I've got the PERFECT shades and outfit all ready for the end of the tunnel, and I'm *this* close to being the girl in the backseat going "are we there YET?!?" (I kind of already am. No shame) :)
But enough about that. Our family is small, but we're a team. Hafiz works long hours so that I can have amazing healthcare. But it's not amazing enough to cover Lyme doctors. My doctor, Dr Marty Ross, LLMD, doesn't accept insurance. And at first you think it's impossible. And it really kind of is to pay for every single visit out of pocket. But then little things start to come in. So far we haven't done so well on the fundraising front, but we aren't giving up this time!! We are very nearly through the money we have saved for lyme treatment. Nearly all of our retirement. We're going month to month very soon and it's a scary place to be when you're in the middle of treatment and you absolutely cannot stop....but if the money stops, that's where we're at. And I'm terrified of that place.
Could the lyme making me over emotional about this? Absolutely. But after 31 years now, I want to know what "well" really means. Not 40%, or 70.... I want 100%. That is my ONLY goal. If my body has other plans we will renegotiate, but we're a long way from that....
I'll give you back to HAFIZ
so he can break it down:
So, we've come a long way from where we started when her treatment began, but the biggest issue is that in order to kill the bad bacteria, The good go as well. It is detroying her immune system. She walks almost full time with a walker, and during extreme attacks her VIPER wheelchair. Hey, at least it has a cool name.
Lyme disease at this point has also crossed the blood/brain barrier, so the lyme spirochetes (spear-oh-keets) are destroying the myelin in her brain and are attacking her spine as well. Her ability to concentrate on anything for more than a few minutes without losing her thoughts is very low. She has some good days, but the bad are very scary and confusing for all of us. Due to the mental confusion, short term memory loss, and the effects of her medications, she is still longer able to drive. She has been given a permanent handicap placard for the car.
Physically, she struggles daily with pain all over her body. The disease likes to hide in joints and places with little blood flow to hide from medication, so when she has an attack she can barely move. There have been days, weeks even, where she couldn't talk, didn't know her name, couldn't remember anything. Her hearing got worse, anything that was previously a neurological diagnosis like pelvic floor dysfunction, fibromyalgia, at times MS symptoms, became so much worse. There are times where she will just be sitting and then she's curled on the bed screaming in pain. It is literally moment to moment.
We don't know how long this disease will last, how many more drugs she has to go through that give her severe, debilitating reactions, or how much longer we will all after endure the pain this puts her through:
What we are asking for from our dear friends and family is financial assistance.
Direct Medical Costs
- We have medical insurance that covers most of the prescription drugs, but her supplements are in excess of $250 per month and are essential to support her body through treatment.
- Her Nationally Recognized Lyme Doctor does not work with insurance, and his visits range from $220 to $550 each visit, per month (it's worth it for his knowledge).
- She has weekly IV Glutathione treatments to correct for MTHFR which is essential. $80/visit, $320/month.
- We already have back bills for all of the conditions that doctors thought were the answer, around $8,000. They're not thrilled, but that, honestly, will be the last thing paid. We need the money donated here to keep us moving FORWARD with my treatment
In-Home Care for Jen and assistance with Sofia
In order to care for Sofia and Jen when treatment started, Jen's mom flew in for 5 weeks (thank god for FMLA) to care for her, and then for about 6 months we had a fantastic caregiver, Justine, who took care of me and my family like they were her family.
Now we have an incredible nanny in the mornings for Sofia, and she cleans. OCD clean. I heart her: $600-$900
And an awesome driver for me to get to my appointments until my sight, memory and concentration come back. No biggie. Also great with Sofia, and a nurse to boot! Our backup daytime nanny $100 - $ 400
Doctor Directed Dietary Regimen
n an effort to treat her body with support and healing, she has moved to a completely organic diet. Grassfed local beef, local pastured pork and chicken, and lots of good fats. She drinks bone broth and home brewed kombucha for their gut healing and probiotic qualities. But mostly, since her digestive system has stopped processing whole produce of any kind, she is consuming 48 oz of raw organic vegetable juice per day. It delivers the micronutrients her body needs to fight this disease without stressing out her digestive system asking it to break down veggies, which it has already stopped doing.
The cost of this dietary change alone is around $500 per month. This is one of the essentials. She has developed food sensitivities that basically leave her with limited veggies and organic beef. But it is extremely important that she put the highest quality ingredients into her body so her digestive system doesn't have to deal with the toxins from the food AND the bacteria. She has also developed many chemical sensitivities and is using home made coconut oil lotions, toothpaste, mouth wash and metal-free deodorant.
Here is a break down of the monthly costs we have had and will continue for another year:
Lyme practitioner: $330 avg.
Glutathione Treatments: $320
Covered visits to in network supplemental practitioners: $200
Out of pocket costs for Rx: $185
Nanny for Sofia per month: $900
Driver for Jen to and from appointments : $400
Both of the above help with house work and laundry,
without being prompted, saving us on a housekeeper.
They're awesome. YAY!
Organic dietary requirements: $500
Total Monthly Cost of Treatment: $ 3,220
Total Remaining Cost of 1 year of Treatment: approximately $38,640
Bills from doctors who got it wrong: $8000
Travel expenses for out of town family help when necessary: $4500
Total of all needs: $51,140
Obviously this is a lot of need, and any contribution counts and helps us get to our goal. Jen knows that this is going to be a long and brutal fight but also knows that when it's done, the life she could possibly have will be worth it. Please consider giving today. Thank you.