We are in the home stretch for Cigna’s approval for Nikki’s Cochlear Implant. Please pass post to everyone you know and if you didn’t sign first time please do. President Obama made a promise, all petitions with over 100K signatures would get attention. She received almost 170K first time around. Let’s get Cigna’s attention. We can deal with Obama later.  Warrior

Change.org Update Cochlear Implant

I have learned several lessons since the last journal entry.  A word of caution. For those who enjoy the outdoors anywhere in the US, Canada, Germany and  parts of England, please educate yourself on Lyme Disease. If detected early doctors can usually treat with a short round of antibiotics. It is hard to think a tick the size of a period used in a sentence could do so much damage. I can’t imagine looking for a tick that size or a larger one the size of rice. The classic symptom doctors look for is called a Bulls Eye Rash. Up to 50%  don’t get the rash, slipping thru during the early phase. The CDC acknowledges there are flaws with in Lyme Test. DEET and proper clothing are your only defenses against ticks. Other critters like mosquitos and fly’s carry the Lyme Virus. Protect yourself by using a spray or a sunscreen containing DEET. Read about extra precautions you can take. Here are resources recommended by my doctor, lymenet.org, lyme.org, lymediseaseassociation.org (Great site for locating a Lyme Literate doctor)

* The doctor was right, when giving yourself a shot you have to go with gusto. I made the mistake of going slow, I had a little blood, a slight pain at the entry spot and medication stained my shirt. You don’t have to stab yourself hard, pick your spot with enough stomach fat and when you aim keep going.

* Managing the number of probiotics, pills requiring an empty stomach, pills with food, working in my normal meds can cause a challenge. The key reason for the probiotics is to prepare your “gut” for the antibiotics. I’ve been told long-term use of high levels of antibiotics will take your stomach for a ride. I hate to throw up, it’s high on my list of things I dislike. I watched  justinandchristavanderham.ca  It took almost two years for Christa’s diagnosis, their entire ordeal took five years. Justin filmed the journey, it’s very powerful. It’s motivating to anyone battling Lyme. The video is an awesome education, if think you have or want to educate yourself. Christa threw up for nine solid days, more than once. That means my husband of 13 years will have to hold the bucket and see me throw up. I don’t look forward to that. I’m not including the jello thru the nose incident as throwing up.

* Enjoy the good days remembering overexertion and lack of sleep can make the symptoms worse. I was fooled last week, staying up till 1:00 or 2:00, one night 4:40 AM. The past three days are a reminder, the lack of sleep catches up. If you wake up late it throws your med schedule off the next day if you sleep in. I’m the queen of sleeping in, there is no discipline to force myself  to set an alarm to get out of my comfy bed to take meds.

* You could have several doctors on your support team. I can’t drive while drugged and jerking, my husband has to take the day off to shuttle me to appointments. I’ve had appointments one day every week for the past month.

* When you’re enjoying the good days, you don’t think about what day the symptoms will return. Upon return this time my symptoms are like an early Parkinson’s’. I’m herky jerky making typing difficult. I have to realize at this point the diseases is in the front seat driving me. I have little control.

* As the virus invades my brain the neurological symptoms increase, last night I experienced 15-20 seizures before they let up. My memory is getting foggy. I picked a song for Throwback Thursday over the weekend. It’s    Wednesday morning and I still can’t remember name of band. I see the signer on stage, some of the lyrics to songs yet the band name escapes me. It is hard to accept the disease is invading your body. I try to keep positive, looking at this as a growing experience. When you read my post or comments and I use the wrong word or make no sense at all please remember it’s the virus in me speaking.

* My doctor handed me a brochure for a Healing Center with a new state of the art HYPERARIC THERAPY. Maybe Michael Jackson can sleep in one, not me. The therapy is 1 1/2 hours long, laying in this weird chamber receiving 100% oxygen. I am claustrophobic, not to worst degree however put my in one of those and someone will not see the better side of me.

This morning 8/6/14 is the first time I cried, just lost it. I was reading the beautiful feedback from long-term friends/followers. I mentioned to my CTC Brother Willy last week, my fear of not being able to blog. I can’t express in words how much it means to be accepted for who I am. I’ve shared many of the worst experiences leaving myself raw and vulnerable. My heart overflows reading the comments expressing prayers and support.

Warrior