Home with a plan

I'm using this blog as a way to update all of my friends and family as to what is going on with me and my health.

I'm home from a very long and tiring trip to DC.  I'm slowly recovering some energy and processing all of the information I received at the doctor's appointment and all of the information concerning my treatment.  I'm feeling very overwhelmed right now and am trying to slowly educate myself and prepare for the journey I am finding myself on.

I'm processing anger over years of illness. I had stopped going to the doctor's about my symptoms because there were no answers.

  I was reminded how difficult it was to raise toddlers.  I felt like a failure because I didn't have the energy to have a job during that time.  When I tried to work I was so sick and tired that I would have to leave my job The best years were when I was homeschooling.  I was able to set a schedule around my own health needs. That is how I was able to train in the martial arts and start the ATA school.  I don't know if any of you have noticed, but in 2009, when I returned to work, I stopped being as involved in the daily running of the school. Scott and I knew this would happen when I decided to go to work.  My history of headaches, needing a lot of sleep, and getting sick often would prevent me from "doing it all".  I have found things like going gluten free, and using health products from Juuva have helped me have more energy and better health. Unfortunately, my brief times of finding energy and a better since of well being were always followed by a return of symptoms, or a change of symptoms.

I feel a sense of validation.  I remember the summer of 1994, a year after my onset of symptoms.  I was working at Living Waters.  I would do my morning job and then sneak a nap in before morning chapel.  I would do my lunch time chores and then take another nap in the afternoon.  I remember being so exhausted I could barely stand it.  I saw the nurse, spent some time in bed, didn't get better, went home to see my doctor, got tested for every disease and condition you could think off, still couldn't find anything wrong.  I ended up leaving camp early that summer feeling like a complete failure.  I was worried about people thinking badly of me.  I just couldn't do it.  I spent the next ten years going to the doctor about these symptoms until I finally gave up and figured that like Paul, this was my thorn in the side that I had to live with. I prayed that if it was God's will He would relieve me of my suffering.

I am grieving the lost years with my children.  All the activities they wanted to do when all I could do is sleep, or hide in my room from a headache.  Playing games, doing crafts, cooking....all the things I wanted to do with them, I often didn't because it was just to overwhelming and I was to tired.  The taekwondo trips I spent with a blinding headache.  The family outings I spent with a blinding headache.

 20 years.

I have a new awareness of my own strength.  I have pushed and functioned to the best of my ability until my body literally stopped working.  I am now struggling to accept that I have NO ability to take care of myself.  If it weren't for my wonderful husband I would be in tough shape.  I hate, hate, hate that I can't take care of myself right now.  I hate that I am unable to work, to be productive, instead I feel like a burden.

I am scared.  I am sicker then I realized.  The Lyme isn't only neurological, but it is beginning to affect my cardiovascular system. I have no choice but to begin treatment.   Treatment that isn't recognized by the CDC.  I have joined a club of people who are the sickest on the planet and also the most ignored by our government.  Treatment will make me sicker for awhile, will cost money that only God can provide, but I don't know much longer I can survive without treatment.  It isn't a choice.

So I sit here.  I have said it before, but I will say it again.  God is teaching me to depend on Him and not myself.  So far He has provided, so I ask your prayers that I will stop worrying.

So, now my venting is done I will share the plan.

I will start a heavy load of antibiotics on Wednesday.  They will hopefully stir up the stinking bugs in my body so they will show up in testing.  On Monday I am having specific blood testing drawn to test for not only Lyme, but for co-infections.  My diagnosis is a clinical diagnosis based on history, and doctor's office exam.  The tests for Lyme are unreliable and best.  The longer you have been sick the more difficult it is to get positive test results.  On Tuesday I will start amoxicilian and remain on that until my next appointment (which will be over the phone) to go over my test results.  Once the results are back, Ginger will decide on the best course of treatment.  Most likely shots, and maybe IV treatment.  I am also on a detox diet.  I am trying to prepare my liver and gut for the antibiotics.  I will also be purchasing therapeutic levels of probiotics , along with some supplements for my liver to ensure I protect my internal organs during treatment.  I am on an elimination diet to check for food allergies.  I am also calcium and zinc deficient so I will need to take care of those issues.

Lastly, I appreciate all opinions and advice.  At this point I will be strictly following the treatment given by my practitioner.  I have spent a lot of time researching and I have asked lots of questions.  Now that I have decided on a course of treatment I need to trust and follow the instructions of the practitioner I have chosen.  I am blessed that I got into her just in time.  Her practice is now full and she isn't accepting new patients.  Lyme is her specialty and she has extensive training.  Not only that, but she, herself, has recovered from Lyme.  My story is HER story.

If you have read this entire blog then I assume you are someone who cares about me and my family.  Thank you!  I beg for your prayers that we can get through this very difficult winter.  I will be laying low from this point out.  Cato and Netflix are my new best friends :)