So Quiet & an Update

I'm sorry I've been so quiet in 2013.  I wish I could say that no news is good news, but really it's been an excruciating month. I began a cycle of medicine with a new antibiotic and that antibiotic is kicking my hind parts.  I can't think well enough this morning to give a proper update so will bullet points some exciting and not so exciting things that have happened this year -

• http://nclymeadvocacy.wordpress.com -

• Excruciating back pain. It hurts up high, more so on the left than on the right.  Sometimes heat helps, sometimes it doesn't. Whenever I move suddenly or bend in certain directions, the pain increases.  Whenever I take a deep breath, the pain increases.  On Thursday, it was so excruciating that one of my friends that has never actually heard me in pain - heard it in my voice on the phone.

• The new antibiotic seems to be working - well.  It doesn't make me sick perse, but it's giving me old herx reactions that I haven't had in a while. So it must be hitting a different aspect of the bacteria

• I've gotten to hang out and meet with several Lyme friends over the last few months. It's always nice to be amongst friends that truly get it. 

• House Updates:  We haven't really done much to the house lately, but we did get another twin mattress so we'd have room for two.  This will be especially helpful when my sister in law and niece pop in for a visit now that we've discovered they are moving to the east coast.  The other thing my husband did was expand the On-Q box in the closet. I don't really know what he did other than rip a hole in the wall, put in a bigger box, put some stuff in that box, and patch up the hole - 

• Went to see a production of Annie.  A friend's daughter was one of the orphans and my Dad & brother played in the pit.  

What have I been up to?

I've been eating and breathing and sleeping Lyme and Coinfections (mainly Babesia, but I think Bartonella has snuck back in), but more importantly - NC Lyme Advocacy website has taken off!  New things are being added daily and if you haven't checked it out yet you're missing something big!

http://nclymeadvocacy.wordpress.com/

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.

Peanut Butter Fudge Debacle 2012

From a time since before I was born I reckon, my Grandfather made the most delicious peanut butter fudge.  It was always a highlight during the holiday season, but especially at Christmas.  There were countless tins around my grandparent's home filled with peanut butter fudge.  It's been 2 and 1/2 years since we said our goodbyes to my grandfather - and it was longer than that since he made his home-made fudge at home.  While others could make fudge, nothing tastes like his.  Enter two days ago - As I'm flipping through a recipe book that I have (I rarely use it, but do open it almost every time I make my Granny's mac & cheese), I see a tiny piece of paper with his initials at the bottom.  I realize it's his recipe for Peanut Butter fudge. 

I say that it would be nice to make some peanut butter fudge and off we went to the store to pick up a few key ingredients.  We came home and began to work together to make this very special holiday treat.  As my wonderful husband was putting 3 ingredients into a pot, I reminded him the recipe called for a large pot.  I'm assured that the pot he being used was fine.   I work on my 3 ingredients and scoop out a good portion of one jar of peanut butter.  he began to cook - and watch the temperature on the candy thermometer rise - and as the temperature rised higher - so did the 3 ingredients being constantly stirred.  He got nervous about the ingredients possibly coming out of the pot - so about 14 degrees too soon the pot was removed from the stove. 

He mixes his 3 ingredients with my 3 ingredients and began to pour into a glass 9x13 baking dish.  It looked a little thin, but it smelled fantastic!  We walked away waiting for it to harden and later that night I discovered it was above the dish washer (which was running) - aka a hot spot. So I moved it to a cooler spot on the counter and when I woke the next morn discovered that it was not hard at all.  It was like Peanut Butter Spoon Fudge.  Feeling my disappointment, my husband began to make another batch.  The first batch was "too thin." 

Well the second batch - we pulled out the largest pot we had.  This was not going to be a mistake we were going to make again.  I pulled out a jar of  peanut butter and with my calculations from the day before pulled out 6 tablespoons of  PB and then used the rest of the jar.  We worked together and got the pot of ingredients to the right temp and then mixed the two together.  Something wasn't right.  It was "too thick."  Back to the recipe -  UH OH!  I had messed up in the first batch and didn't realize it so when I made the 2nd batch, I didn't double check.  Instead of using 3 cups of PB, I had used 4 cups!  

We were feeling a little bit like Goldilocks - 1st batch was too thin, 2nd batch was too thick - we wondered if we would ever get it right.  At this point we weren't going to let the fudge get the best of us.  SO we began again double checking every single measure and every single ingredient - FINALLY - it poured right - and we waited.  The third batch was JUST RIGHT!  And - I smiled as I bit into the first piece - it tasted just like my my Granddaddy's - *almost* :)    We got two thumbs up from my family too!

I miss you Granny & Granddaddy - every single day, but on days where we try to recreate your master pieces - even more especially so.

Wishes & Resolutions

November of 2006, I was certain I wouldn't see November 2007 and now here it is December 2012.  While my health has been on a roller coaster journey since - I am so thankful to be alive. Some call them resolutions, I call them goals and/or wishes.   In the middle of 2007, my friend told me that I never smiled.  I thought, how can I smile when I've been sick so long without a diagnosis?  However, I pinky promised her that I would smile at least once a day - even if it was forced.  Here it is in December 2012 and I got told the other day that I'm the happiest person she knows.

In that same year, I made it a goal to reconnect with friends from my past in 2008.  I absolutely made that happen.  In December 2008, I wanted to continue with both plans in 2009.  To smile, to make others smile and reconnect with friends. Facebook was a big part of that, but in 2009 Santa gifted me a GPS and it made this happen in person more often in 2010 through current times!

In January 2009, I looked around and realized I had a major problem.  My house was disgusting.  I couldn't take it.  I knew I couldn't fix "all" my problems over night so I started off with the laundry. I had a system in 2009, but altered that system in 2012.  It at least keeps the laundry off the floor -

In January 2010, I didn't really make any goals or promises - I was just trying to maintain my smiling, keeping up with friends and keeping up with the laundry.

In January 2011, I made a goal to keep clean the master closet and bedroom.  It worked.

Last year I said, "My family has several wishes in regards to this wish. We will see if it can come true in 2012. While we love our home, there are several things that we would love to have and honestly those things wouldn't be easily obtained if we are where we are. So we would love to be able to either purchase some land and build our dream home upon it, or find a new home that we would easily make into our dream home. Either way, a lot of prayers would have to be fulfilled in order for either to happen."

I wished and prayed and it happened.  Seriously when I suggested this in December of 2011, I didn't really think we'd be moving - much less moving in May of 2012.  When you put your faith in God and have your mind really set on doing something - you get what you need. 

I've really done well at keeping my new house clean - at least the downstairs.  The upstairs is a work in progress. I wanted it to be "visitor" ready at a knock of a door or the chime of a doorbell.  And mostly it has been.  In 2013, I will just hope to maintain this level of cleanliness at the new house.  Keep up the smiles, laughter and fun with friends -

Checking in

Just wanted to check in on how I've been doing this past week. It's been about 50/50.  On Saturday, I had lunch with some of my best Lyme friends and some their family.  There were a total of 13 of us.  I think there were about 8 Lymies and 5 relatives/friends.  This was so much fun.  It's always so nice to get together with a lot of patients. We get each other in a way that it's really hard for the "healthy" to understand. However, we don't just talk about the Lyme devastation. We talk about a lot of things and try to make time to include what we can do to educated NC about Lyme. This last time we had an ornament exchange. I mentioned to everyone to bring a wrapped ornament costing less than $5.  Four of us brought ornaments and we exchanged.  I handmade my ornament and gave it to my awesome friend Meredith and in exchange I received a red and gold deer for my tree!  Love it! 

Then I hung out with work friends afterwards.  That was exhausting in and of itself because it was late (6 to 9pm) and there were about 40 of us.  Fortunately I love my work friends so it was worth it.  Now those two things have pretty much worn me out.  Sunday was brutal.  I could barely do a thing and Monday was worse because I had to work and Tuesday I rested all day. Then yesterday I worked 8 hours straight without a break, which was brutal.  I'm able to rest all morning and then tomorrow my husband & I both have the day off. 

In my childhood at Christmas time, I remember three things distinctively.  A:  Playing with the ballerina ornament on my Granny's tree.  B: The smell of the kitchen on Christmas morning when my Granddaddy would "bake" us awake with bacon and livermush.  C:  Wondering how Granny had the time and energy to put the candle lights in the windows and make sure they were on every single night we were there 

Yesterday afternoon, I opened up one of the boxes of Christmas things I got from my grandparent's house when my granddaddy moved into a nursing home.  Then, I spent the evening trying to put up candle lights in my windows like Granny.  I only got 4 lights in the window.  Granny had 8 lights that I inherited from their home.  There might be more somewhere in the boxes I have upstairs, but I could only find 8.  So I put 4 lights in the front windows downstairs. I pushed up the red bows she carefully made onto the white candle light so that it could be seen outside.    Might put the four candle lights upstairs, but there won't be enough for every window (we have 5 windows upstairs).  So I'll probably put t hem up - turn them on and if it doesn't look right, then I'll take them down.  But that's a lot of energy that I don't have right now so I may wait until Christmas 2013 to try it. 

Speaking of energy, my b12 shots came in on Tuesday so I was able to have a boost of b12 on Tuesday night.  It helped me not fall over at work on Wednesday of pure exhaustion.  Very helpful indeed.  The last b12 shot I had was in May 2012.    I thought I had no more refills so I never ordered.  When I called the pharmacy they informed me I had 4 refills.  Go Lyme brain.  So I ordered two months supply and by the time I see my LLMD again, I'll be able to tell him whether they kept my energy the "same" or "increased" it. 

Bad Days

I've had a couple weeks of bad days.  I've pretty much lived in Migraine Land for the past two weeks and yesterday I reached my breaking point.  I even broke down and wore sunglasses in the building at work.  It wasn't the most fashionable thing to do, but the florescent lights were making it worse and if anyone asked about them I simply said, "My future's so bright I have to wear shades."  The person laughed and we moved on. 

Breathing -

Enter last night.  I got home and heard the dryer going.  It was relief as I had put the load in the washing machine before I left for work.  I was dreading reaching into the washer - slopping out wet clothes and lugging them into the dryer.  This may seem a simple task, but when you have a Lyme migraine - this task is daunting. 

I arrived home to a clean kitchen, clothes drying, a made bed with the electric blanket set on  high - all thanks to a wonderful husband who knew I'd had a bad symptom day.  Together we put away some clean laundry and after I vented on facebook, I got into the cozy bed and went to sleep.  You see, I served my migraine an eviction notice.  I told my migraine I was DONE with it residing in my body and in the morning it would be gone OR ELSE!  I didn't know what the OR ELSE would be, but it had to be gone.

Before I went to bed, I loaded a load of clothes in the washing machine and saw - the timer button.  Hmmm I wondered what it would do.  I had never used it.  So I set it for 10 Hours and went to bed.  I woke up shortly after the washing machine finished (the spin cycle woke me up) and was able to put a fresh load of clothes into the dryer.  Oh how this feature will be so helpful in the future -

I woke today - stood up.  The Vertigo was GONE.  The intensity of the headache - GONE.  The flashing of colors in my vision - GONE.  Only a small portion of a very small headache remained.  I thanked God for serving the eviction notice and have gone about my day extremely grateful that every time I stand up that I don't swoon.

PS:  Buy 3 bracelets over on the right side of my blog - so I can send some donations to Alisa & Jaime.  So far I'll be able to donate to her $30 from bracelet sales.  Let's keep it going!

We Fight Lyme Together Sale!

Any bracelets sold in December - a portion of the proceeds will go to the Lara family.  Want to help the Lara family and buy a few silicone bracelets in the process - Order some bracelets today!

Due to the processing procedures of Paypal (because I'm a new user, it holds all funds for 21 days) - if you would like them quicker than I can send them out with a paypal order, please EMAIL me your order and I'll tell you how you can get the order quicker (only takes about 4 days instead)!  You can find my livinglymelife email address over on the side of the blog. Also I will be able to give you information on another way to pay which will maximize the amount I can send Alisa & Jaime.

So far I have sold 15 bracelets in December! Continue to order.  

This offer is only while supplies last.

61 minutes of heaven on earth

My friend Alisa had her baby, London Daniel Lara, this morning in Texas at 7:25am.  While all the details are not known, I do know that she was able to hold him on her chest until he passed away at 8:26am. 

Please continue to pray for my close friend and pray that my heart can find the right words that will bless her.

Loving London Lara

If you are on facebook, you have likely seen this photograph amongst many of your friends (especially if you have Lyme Disease).

This is a very good friend of mine Alisa Turner.  I have written about her before - Alisa & I share a bond that I don't just share with just anyone. I do make friends easily. I don't know a stranger, but when Alisa walked into our doctor's office and I looked into her soul I knew I had a friend for life.  I slouched in one chair while she slouched down in another.  We both looked how the other one felt.  Exhausted doesn't even begin to describe our physical and emotional demeanor on the day we met.  We were spent, both physically and emotionally.  I picked my head up off the back of the chair and looked her way.  I mustered up a smile and she smiled back.  We spoke few words that day, but I saw her soul and she saw mine.

This was about April of 2007.  Here we are 5 years and 8 months later and we are still friends.  She has since met and married the man of her dreams.  They moved away and we communicate on Facebook and via text messages occasionally.  Our souls are so intertwined that it is almost like we know when we need the other.  I'll be having a terrible day and I'll get a message from Alisa of encouragement and support. It lightens up my spirit.  It happens the other way around too.  I won't be able to get Alisa out of my mind so I'll send her a message and shortly after she'll respond back that I knew the words her heart needed to hear that day.

Back in May 2012, I felt a terrible urgency to get in touch with her.  I kept sending her messages and never really got a great response back.  I was worried.  You see, I have these dreams.  Some people know about them and some people don't.  I get these terribly realistic and sometimes prophetic dreams and I dreamed that something horrific happened to my friend, my best Lyme friend.

I went to her youtube channel and listened to her most recent vlog.  It had been posted at the end of April, but I didn't realize it.  You see, my friend Alisa is an artist. She writes and sings the most beautiful songs.  And this particular song - was called Faithful Til The End.  Faithful Til The End By Alisa Turner.  She called it "not her best song," but I disagreed.  It gave me goosebumps and her demeanor makes me cry.  It reminded me of the day I met her where we barely had the energy to muster a smile and yet she was able to produce such lovely sound and lyrics that it reduced me to tears very quickly.  Every time I hear it, I cry all over again. "He has never left me" gives me goose bumps and sounds so haunting.

I received very few correspondence from Alisa between May and August. It had me worried, but I just prayed for her.  I knew what ever she was going through was so unbelievably difficult that she just needed prayers.  I stayed quiet and every once in a while I'd send a message of encouragement.  Then in August, she shared with the world that she was pregnant.  A miracle baby.  You see a lot of Lymies have trouble getting pregnant and staying that way simple because most of our  hormones are so out of whack that pregnancy is near impossible.  Not to mention the physical stress on the body and the risks of transmitting the disease to your child -

In Alisa's case:  She had virtually zero of one of the hormones necessary to sustain a viable pregnancy, but God always provides.  Jaime & Alisa got the news in May that Alisa was pregnant.  She kept the pregnancy to herself because she was certain that she would have limited time with her precious tadpole.   They decided that after her ultrasound at the 12 week point they would share the news with close family if things were still looking good with their precious miracle's fluttering heartbeat. As she would share in her own facebook note in August, they received news that their precious miracle had a birth defect known as Anencephaly.

Here we are 20 weeks after receiving the news and Alisa is preparing to say hello and goodbye to her precious SON, London Daniel Lara.  She posted a facebook note with all of the specifics and I won't go into them all here, but Alisa & Jaime decided that they wanted as much time as possible with their son.   The time is coming to a close however because tomorrow - Alisa will be undergoing a c-section under general anesthesia at 32 weeks.    Her doctors have all agreed it is best for her health to have London at 32 weeks.  She recently posted a video about her pregnancy and Lyme

So today:  I come to you and ask for you to pray for my best Lyme friend Alisa & her husband Jaime.  I've read her birth plan and it is heart breaking and inspiring.   I wish she were close so that I could support her more.  I'm supporting her as much as I can from North Carolina and I ask that you support her too by praying that she will get to enjoy some moments with her son as she says hello and goodbye, particularly allowing her to "sleep" while her son London lays on her chest breathing.


Okay well I have tears falling down my cheeks now -
so I share with you something I've written for Alisa inspired by two of her songs:

Beacon of Hope

Even in your darkest hours

you are faithful to the 

One that holds the beacon of light.

Take that beacon of light

and shine it for the world to see

For through you, Jaime & London

People have found Jesus.

Souls have begun to pray repeatedly

Souls that have never prayed before

until they discovered you

at your darkest hour

being faithful til the end to the

One that holds the beacon of light,

the beacon of hope.

I love you with all of my heart

with all of my soul

with all of my spirit.

Your spirit shines through 

For all of us to see

Even in your darkest hour

where hope meets sadness.

Jennifer

Issues with the guidelines

To undersstand my disdain of the DSM - you must understand four things.  

• What is the DSM?  Diagnostic Statistical Manual of Mental Disorders.  Every so often they revise the DSM.  When I was in college, we studied the DSM III (3), but knew that DSM IV (4) was on our heels and knew that some changes would be made.  
• I graduated with my degree in Social Work.
• I was diagnosed with an illness from the DSM 3 my freshmen year of college and after I read the definition for a paper I wrote on said illness my senior year I thought the psychologist should have been diagnosed with it instead!  FYI, I do not have said "disorder."   It turned out to be Lyme Disease.  
• These are my opinions and my opinions alone.

 So I don't dislike the DSM itself.  I think there are many purposes for this statistical manuals.  I do believe that of people don't understand how to "test" for the disorders listed in the book.  So I was reading on the local news website that they are revising the DSM in 2013.  The biggest thing the article spoke on was the removal of Aspberger's as a diagnosis in the DSM and how it was going to be under the umbrella of Autism.  This is a hot button of mine to start with because I do believe that many cases of Autism are caused by untreated bacteria - um specifically the Lyme bacteria gone wild after being exposed to too many vaccines.  But I digress.  

The thing that made me hot - really  hot and the thing I had forgotten about was that in the DSM IV they had a label of "Severe Recurrent Temper Tantrums."  The name itself makes me kind of chuckle.  I have seen children with this problem - but the DSM guidelines will change the name to Disruptive Mood Dysregulation Disorder!  Sometimes it's best just to call a spade a spade instead of a "sturdy hand shovel."

Overwhelming Follow Up

It seems like every follow up here lately has left me feeling extremely overwhelmed.  Today's visit was absolutely no exception.  I arrived a little bit before 9 to fill out all appropriate paperwork and was called back at 9:15.  I was in the the PA and my LLMD for at least an hour.  He talked about his most recent ILADS conference.  I love and hate when he comes back from those conferences.  I love it because he usually brings back with him a new piece of information that might help solve the puzzle of my illness.  I hate it because I usually leave extremely overwhelmed by all the information he gives me and usually it involves a change in treatment plans.

The antibiotics are the same.  The days I'll take them - VERY different.  Over the next six weeks, I"ll be on five different pharmaceuticals.

• "M" will be taken twice DAILY instead of pulsing like we've been doing. no time off unless I'm struggling.
• "Z" is better taken 4 days in a row in order to get blood levels to a therapeutic level - so "Z" will be taken twice daily Monday through Thursday and I won't take any on Friday through Sunday.  Two weeks on, one week off, two weeks on, two weeks off. 
• "F" will be taken on the 2nd week of antibiotics - twice daily on Friday and Saturday only.
• "O" will be taken on Monday, Wednesday and Friday.  Two weeks on, one week off, two weeks on, two weeks off. 
• "N" to be taken on whatever day I'm taking antibiotics which will be daily (unless I go a "M" respite)

In addition to these, I'll be on a multitude of supplements. There are probably 15 bottles of supplements that I'll be taking 2 or 3 times a day.  There are also about 10 bottles that I'm not sure if I'm supposed to be on or not so I sent an email to my supplement lady.  A lot of them are detox remedies so I feel like I should probably be on them with all of the antibiotics I'll be on, but - adding an additional 10 items twice a day in combination with everything else - seems very overwhelming.

Over the last six weeks, my fatigue level has sky rocketed.  Most nights I'm in bed by 7pm and if I have to work -  I'm rudely disturbed by the alarm at 5.  However if I don't have to work, I sleep a good 12 hours if not more.  One night I went to bed at 6pm and slept until 7am the next morning. I didn't even realize I had slept all night and wondered where my husband was when I got up.  It wasn't until I made my way to the computer and saw AM on the time stamps that I realized I had slept 13 straight hours.  That same day - I napped an addition 3 hours twice and then slept an other 12 or 13 hours the next night.

I've also had spells of dizziness.  Most of the time I attributed it to a new pharmaceutical that I'm supposed to be on to increase my sodium levels.  My Sodium levels are in the toilet again.  So I've got to try to see if I can get those up over the next few weeks before my next set of blood work again.  One set of liver enzymes were elevated from my last set of labs, but not out of the normal range.  Then the other set of liver enzymes were elevated out of range.  We all think it's due to the antibiotics and we're keeping an eye on it. A few of my new supplements are to help support liver function.

Sorry I've been so quiet.  I've had a rough month and I just tend to get really quiet when things get really bad.