The Petition

I wanted to write something creative for sharing this petition, but my Lyme brain just isn't working.  SO here you go in a 5 question format.

Who do we want to sign this?  You!

What are we trying to accomplish?  To  reform IDSA guidelines and allow doctors NOT Insurance companies, to decide what is medically necessary.

When:  NOW!  You only have until February 10, 2013 to sign.  We need 25,000 signatures and only have a little over 6,000 at this point.  If this petition doesn't receive 25,000 signatures, then if we want to have another petition to state the same thing - we'll need 100,000 signatures due to some changes in the way the White House accepts petitions. 

Where:  Online:  https://petitions.whitehouse.gov/petition/reform-infectious-disease-society-america-treatment-guidelines-lyme-disease/Pj9jG0pX

Why:  So that Lyme patients can get the care they need.

Thanks so much for reading and signing.

The Die Off Reaction

This is my second week of the cycle of antibiotics.  It is when I feel worse and this week is no difference.  During each cycle, the die off reaction should be reducing.  However during this cycle, I added a new antibiotic.  It is attacking something that hasn't been attacked (don't ask what because I don't remember) and my die off reaction is large - Today, I just want to lie in the bed all day.  I just want to sleep, but the pain level is extreme.  I'm so used to the pain level that I don't recognize the peaks and valleys unless they are extremely high.  This morning I rolled out of bed and barely made it to the bathroom before collapsing in the floor resting ever so slightly until I could stand back up to make it to the toilet.  I was reminded in that moment of another bad day - The day that I wrote this: 

"collapse for another night of ...

pain, swelling, fevers, vomiting, nausea, coughing, pain, twitches, massive sleep OR insomnia, nightmares, breathing difficulty, fatigue, emotional outbursts, migraines, brain fog, difficulty swallowing, ear ringing, blurry vision, rashes, seizures, burning sensations in my arms and legs and feet, loss of control of my feet, muscle weakness, and those are just a few of the things that I can remember right now."

I was in remission for a while.  When I would take antibiotics for other infections, there was no die off reaction.  I was healed, but now - I have many of the things on the list above.  I felt hopeless than.  I don't feel that way now.  I know it can get better and that it will get better, but it doesn't make today and the die off reaction any easier.  

My Birthday

For my big day this year - I'd like to share with you a video that makes me smile because I love Back to the Future.  This video combines all of Crispin Glover's speaking scenes. 



I really like the stuff at 3:25 on -



PS For my Birthday, please share my last blog post on the new advocacy blog for North Carolina.  That's what I'd like the most.  :)  Thanks

Exciting News for NC!

Over the past few years I have wanted to make a difference in North Carolina Advocacy for Lyme Disease.  I've done it through multiple ways.  (list is not in chronological order)

• Co-founded an online facebook group for NC and SC Lymies (two groups actually)
• Attended and hosted Under Our Skin Screening
• wrote senator letters in 2008 to promote Lyme Disease Awareness and protect Integrative Doctors.
• Began this blog. 
• talked with multiple people in person ab out Lyme Disease
• helped promote various awareness events.
• emailed with the newly diagnosed and assisted heading them in the right direction.

However, I have always wanted to do more.  So shortly after the last Lyme Luncheon (there were about 13 of us there), I reached out to one of my friends to see if I could get help with this large project I wanted to under take.  It was then we decided to meet up with founders and presidents of different NC Lyme organizations. So on Wednesday January 23rd, I met up with 8 other advocate.  We had representatives from at least three different NC Lyme Organizations at our dinner meeting. 

Our goal was many fold and upon leaving the meeting I felt refreshed and excited (and tired, it was almost 10pm after all).  I went to bed after watching Carolina win their basketball game and the next morning I woke to work on the advocacy projects we had discussed. And then, I got an email from my friend.    Now I have few truly annoying pet peeves, but one of those is a full inbox of email full of chain messages. I absolutely hate getting on email lists and I hate even more when those list fill up your inbox.  Example:  A while back (probably 2003) I got on an email list and each person would write like 20 emails a day and then each person would respond to those 20 emails - needless to say it was difficult to wade through.  So I pretty much avoid being on a mass email list at all cost.  It had been suggested several times about one of these email lists, but I was hesitant (rightfully so, I know how these email lists can go). 

So I went to bed and I do my very best thinking while I'm sleep.  You think I'm joking, but I'm not.  I go to sleep with a "problem" and wake up with a "solution."  I woke up yesterday morning with the BIGGEST solution.  For folks that can't or won't go on facebook, I had the most perfect solution and it would help create something I've wanted to do for a while.

Without further ado, I'm excited to announce this big thing.  Yesterday, a new website was launched to provide a central and web location to announce future events so that North Carolinian's with Lyme Disease that are not on Facebook (hey that's you Mr. K)  can have access to the public events. I'd like to introduce ynou to the new NC Lyme Advocacy Blog.  Feel free to check out all the tabs which are currently works in progress and also feel free to SHARE with friends and family.  Stay tuned for the events that will be posted up on the events tab and also on the blog itself.    I did have to utilize another blog tool since I did not want the blog to be "connected" to my personal blog. 

http://nclymeadvocacy.wordpress.com

Comment and SHARE!

Heading in the right direction

So at my last follow up, we decided that we were heading in the right direction.   This was music to my ears. 

However, we needed to add a new antibiotic to my regiment.  We talked about it the previous follow up, but decided since I was quasi stable that I should just remain on what I had been taken.

What antibiotics am I on?

• Mepron - Yellow Paint. - I take this all the time.  There are no "breaks" with this one.
• Omnicef - Two weeks on, two weeks off.  Repeat.  I think Omnicef is what is causing me to be cold - most of the time. 
• Zithromax - Two weeks on, two weeks off.  Repeat.  Zithromax is the one that is most likely going to give me stomach problems IF I don't eat with it.  
• Flagyl - take it on the 2nd week of Omnicef & Zithromax for two days and then off the rest of the time. 
• Rifampin - is my new medicine.  Many people told me that it would change my urine to orange or red.  Boy they weren't joking. - It's like I'm peeing Tang or Orange Gatorade.  It's not caused me any major problems, yet.  It's on the same schedule at the Omnicef, but I can't take it with food - so I must take it about an hour before the other ones since I *must* eat with those or I vomit. 

I go back in 7 weeks and see how things are going.  If things are continuing to go well, then we can stretch things out further.  However if it gets to the point where I've "hit a wall,"  I've been told that I'm going to hate my LLMD (he told me this himself) because he's going to want me to stop it all for four weeks - at which point symptoms will probably be going crazy and we'll either restart or talk about IV's. 


My biggest symptoms at this point are:

• Fatigue - can somewhat be controlled with b12 shots every 3 days
• Headaches - these are less severe than they have been in the past, but in the last couple of weeks they've restarted.
• Chills - I've been REALLY cold.  I think Omnicef is causing a portion of this, but it happens even during my off weeks - the severity is just lessened.
• Sweats - again, this has improved, but it's still pretty bad.  I can easily sweat through my clothes and it can lead to embarrassing wet armpits.  (hey it's honest!)  The sweat typically doesn't smell, but still embarrassing none-the-less
• Leg and/or Hip Pain.  Most of the time the pain is in one leg or another, rarely both legs.  And generally the other hip hurts - I think it's because I'm compensating for the pain in my leg with the way I walk.  
• Muscle Weakness - The other day I tried to lift a 5 pound weight - and I couldn't do it with one arm.

Okay - well that's all I have for  now.  

Updates To Come

Went to my follow up today.

Updates to come.

Too tired today to write it all.

Computer issues

I'm using a temporary computer - with none of my bookmarks and none of my saved passwords to get into places - like blogger.  Kind of good to get a new perspective of what's "needed" and what's "not" needed in the virtual world.  Will probably clean out a few bookmarks when my real computer it back up and running.  What has been missed is this blog.  I miss it so much - I miss reading my friend's blogs too.  I wasn't able to remember my log-in and password for blogger yesterday so when I logged in under "another" account - it would let me post or read any blogs.  Fortunately this morning, my log in email just "came to me." 

Life has pretty much been at a stand still. I'm not getting better, but I'm not getting worse.  So that's a good thing I guess.  Every time it rains, my body lets me know.  Thankful I'll be home all day - on a very rainy morning.  Probably "veg" out on the couch all day. 

Haven't received any "panic" phone calls about my blood work last week - so I'm taking no news as good news.  Usually within a week of the blood work if anything wonky turns up that a new medicine is needed- they call.  But if it was normal or just a little wonky, I won't receive a phone call. I have my follow up next week anyhow so I'll find out in a few days what my blood work told the doctors. 

Hallelujah Lab Lady

I've talked about the difficulty I have with outside labs (labs in general) and IV's - I've talked about "Grab & Jab" and once I even talked about "Blood Draw McGraw." So today I had my lab work to test to see how my sodium levels are doing and my liver enzymes.  My last few tests those have been looking wonky so we wanted to do a quick check to see if they were improving or if they were still wonky.

So I started preparing about a week ago increasing my water intake.  And beginning this morning - I'd drink a little bit of water out of the bottle water and add a "tiny" bit of gatorade - then drink the entire bottle of water.  I probably drank 3 or 4 full bottles of water in 2 hours plus not even 1/2 bottle of small gatorade.  I took a very warm bath to get my body temp up (helps my veins plump) and wore not one but two jackets to keep myself warm. 

I arrived - gave my insurance and usually it's here where I tell them how tough I am to get it in a few sticks, but I didn't.  I walked back with her - sat down and watched her gather supplies and then - I tell her, "Today is your lucky day."  I smiled and then told her I was a difficult stick and if we worked together we might get it in one shot, but that I would only allow two tries. I told her where I'd like her to try - and she looked - and agreed it was the best option - and drew my blood out of a vein in my hand (OUCH!). 

Hopefully it won't hemolyze for me to be called back to get blood drawn again.  However, I am thrilled she listened to my concerns and valued my words.  Hallelujah!

2012 in review

In January of 2012:

I began taking three college courses - one was Admin 1 (and 2).  I did well and got on the Dean's list for the semester with a perfect average over the three courses. My health was continually declining.  I had some terrible weeks throughout January and I had many HBOT treatments along with homeopathic treatments.

In February 2012: 

I continued the college courses, HBOTs and homeopathic treatments.  My blood work showed how terrible I was really doing - My husband was in a terrible car accident.  His little car was totaled, but it kept him safe.  The only thing that was wrong with my husband after the accident was that his nose was burned from the chemicals in the airbags. 

In March 2012:

March was the month that I think of as the catalyst of change. My 5 year anniversary of being diagnosed happened in March of 2012.  I dressed up like the Cat in the Hat and got to eat at the Top of the Hill at UNC-Chapel Hill. I also jumped on a trampoline for the first time and rested on a hammock. I went to witness the wedding of a close friend's little brother.  My other friend had a baby unexpectedly (she didn't know she was pregnant and neither did anyone else).  However the biggest catalyst if change happened when we walked into a house that would soon be our home.  We had talked about moving for a few years, but I really never thought it would happen.  But, I sit here typing from the room that I knew would be my office from the moment I walked into this house.  I said back in march 2012:  We know that if it's God's will, it will happen. - And happen it did. 

In April 2012: 

In April, we put down a deposit on the house - hoping we'd be able to move in right away.  Right away we did - a mere 6 weeks later!  It was also in April when I had a case of MRSA in my nose.  This was the catalyst to a change in health.  My health got worse after this.  So bad so that we put IV antibiotics off the table a little later because I was too sick to make it a consideration.

In May 2012:

In May, we moved into our new home - I also hosted a screening of Under Our Skin. We also sold our old home.  May was crazy - but in a good way.

In June, July and August 2012:
I began battling Lyme & Babesia - for reals.  I began Mepron.  My body fought back.
My pain got so bad in July/August and my toxin build up was so bad that we changed our plans and I went on a detox plan until I could get my body back in control.

September 2012:
September I took control of my life.  I decided to have some days of fun no matter how poorly I felt.  I went to the beach wiht Lyme friends, I went to Charlotte to hang out with some Lyme friends and then attended a 5K to raise awareness for Lyme Disease.

October 2012:
I went to hang out with my college best friend - and got to see another college friend also.  It was such a nice visit with them.  My health got better and worse. 

November 2012:
My husband and I went to the beach to "celebrate" Black Friday.

December 2012:

My friend Alisa had her baby boy who lived 61 minutes on Earth - London Daniel Lara made an impact on the world.