Problem solved... Sort of.

After infusing today I stopped by the front office to ask about my prescription refill for Tindamax or if I was going to need something else.  The lady's response was...  Dr. Shah said you don't need it anymore.  

I didn't know what to say. 

All I could think of was that I am still herxing....  Which means it is still killing the Lyme.  Taking me off slows the treatment.  So I guess I'm on a break until Monday when I can meet with Stephanie.

Tomorrow morning is my last day to take the remaining pills I have and then I wait...

Week 5 done.  Starting week 6 tomorrow...  I bet anything they stop my treatments Monday and say that is all he can provide for me...  Because of the CDC.

I wish I had the $7,000 per week to go to Envita...  Or some place like there. 

My immune system is still shot, I'm still herxing, and still have a lot of Lyme symptoms.

Grrrrr...  I'm going to take a nap.  My head and joints are not liking my today.

Spoons

For the longest time I had a problem explaining how this disease affects my daily life.  It's easy to explain symptoms and the science of the disease.   It's right there on the surface to see or can be researched online.  But how I live with it is another story.

I found this video and it helped me to understand my own disease.  It explains the spoon theory.

https://www.youtube.com/watch?v=jn5IBsm49Rk

Here is a link to the written story straight from Christine Miserandino's blog @ www.butyoudontlooksick.com

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Yesterday I borrowed spoons from today and possibly tomorrow.  If I don't rest and do VERY light duty tasks every day then I am completely spent by late afternoon.  Yesterday I was not on my Tindamax so I thought I would take advantage of a day of less herxing.  Boy, was that a mistake.

Although I do not regret the time spent with my husband and children...  I am regretting that I didn't take it easy yesterday.  My Dr warned me about this.  Just because I have a "good" day I still have to take it easy.  Recovery will take me a year or more to be close to where I once used to be.

Words cannot express how HORRIBLE I feel right now.  I don't know what it feels like to be hit by a bus, but I imagine this would be it.  (Now, I didn't say crushed or mangled...  Just hit.)  EVERYWHERE HURTS. Everywhere...

I am going to take a detox bath and try to take a nap.  I also have to get going on my fundraiser....  My insurance is only covering 10 days a month of Tindamax.  I just purchased 5 days, (10 pills,) for $82.27.  Not too bad, but I hope I am not on these pills for long.  I have not been doing much for fundraising lately.  

OH, here is another link to Christine's site about some of the things I deal with every day.  She has Lupus but Lupus, Fibromyalgia, Rheumatoid Arthritis....  It's all about the same as Lyme all wrapped up into one. 

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/30_things/

Have a great day everyone and keep on keeping on!!!  LYME WARRIOR!  (Although I feel more physically defeated today...  The show must go on!!!)

Herxing

I hurt.  I hurt, hurt, hurt.  My body is finally herxing to the max and I am taking it one breath at a time.

Sounds are hard to bare.  Lights are too bright.  Air conditioner hurts my ears but I'm overheated and need the cool air.

I ache...  Everywhere.  My knees, ankles elbows, shoulders, hips....  Hurt SO much.

My fingers ache.  My back and neck are stiff and my muscles are knotted everywhere. 

My head is pounding and I cannot type this fast enough to document so I can sleep. 

I will do a video but wanted to journal my experience.

2 week appointment with my Physician's Assistant

I have the best P.A. EVER!  I have to share my doctor appointment with you because it really makes a difference in a Lyme patient's treatment to have support, understanding and love.

I went into my clinic to infuse my Rocephin as I do every morning at 8am.  After I waited to see my P.A. for the weekly Monday appointment.  Normally she is accompanied by two other interns taking notes on how she reviews and advises patients in their care.  Today she settled in front of me on her rolling stool and paused for a moment just staring at me.  She has the most sincere and loving eyes.  She turned around to the other two ladies and asked them to check on the other patients so they weren't hovering around.  It was an awkward conversation and the ladies looked shocked a bit.  Mind you the infusion room is open to every patient and I meet with the doctors there.  

She asked how I was feeling and I replied that I was doing well.  She just kept concernedly staring at me and said that we should start with test results.  Liver good.  Kidneys good.  (She said more but I am summarizing.) White blood count at 2.8, still low.  Red blood count just above the lower end of the scale.  Platelets low... We will monitor these.  Hemoglobin good...  all else good.  My CD 57, (immune system/ killer T cell count) was not taken for some reason so we will have to do it again on Friday.  It was low last week so we will assume that it has remained the same.  My B12 and folate are low and we need to bring it up to help with my body's natural detoxifying process.  

Since I am still having Lyme symptoms my P.A. suggests that we start Tindamax.  I will be using this medication to attack the cystic formations that the Lyme spirochete forms when there is antibiotics trying to attack it.  My initial 2 weeks have past and now we must start to get the bulk of it.  I have yet to address a chelation treatment that will help rid my body of heavy metals...  Since I will not be treated at Envita I will have to address this myself.  I also will have to address detoxifying myself from all the toxins that will be released when killing the spirochetes.

Stephanie, my P.A. (I will have to look up her last name, she goes by Stephanie!) asked if I have researched about herxheimer reactions.  I explained that I had researched it because I wanted to be prepared.  She then asked if I am ready to start or if I needed another week to get things in order.  I told her of my amazing support group...  Family and friends ready with meals, house cleaning, rides for kids and babysitting.  She asked again of I was ready for it or if I wanted to wait another week.  Me, personally, was I ready.  I told her yes.  Yes, that I wanted to attack this head on.  She stared at me and I just felt that whole-hearted concern...  I started to tear up.

As she was sending the prescription for Tindamax to my pharmacy she asked me if I had any questions.  I wanted to know how long before I started to herx.  She said that it would take a few days.  I was having a harder time keeping back the tears.  She looked up, sunk her shoulders down and stared at me again...  She was so concerned for me.  She arose and went across the room to the tissue box.  I thanked her and started to talk again...  I just stared at her and said I want to get better but I  am not ready emotionally for the path I have to take to get better.  She sat and listened to me.  

As little dialect that was exchanged...  It was more of a sweet moment that occurred the whole visit.  She told me that even though I had a huge support system to help me through the next few weeks, she would be there for me if I needed her.  If I had any questions...  Anything.  Her face, I cannot explain her countenance...  It was as of she crossed the medical professional barrier between Dr and patient and was there for me.  She has seen others go through this and all though she has never been through it, she has talked to and treated those that have.

Before I left she told me to go do something fun today.

That's advice I will be taking seriously...  Doctors orders!