Christ Has Risen

When I was a child, my favorite "holiday" was Easter.  While most children said Christmas or their birthday, my thought was that Easter was the best thing ever! I loved the thought that someone could die and come back to life 3 days later.  I wondered if people that I loved close in life could come back after three days like Jesus did.  My thoughts were that Christmas celebrates Christ's birth, but Easter - celebrated his life, death and his rebirth.  Three things in one - Why wouldn't it be my favorite "holiday?"  As an adult, I realize that my thoughts were oversimplified, but I'm still child-like in that thought.  We get to celebrate his life, his death and know that after three days - Christ Has Risen!

How does this relate to my Lyme story? Well - over the course of the last 18 years, there have not been many times where I have asked the question, "Why me?"  Let me repeat that last part.  There have NOT been many times where I have asked the question, "Why me?"  I would say a handful at the most have I asked, "Why me?"  When I do - the answer is simple - Why NOT me?  I've always said that if my journey could change or affect one person - then it was worth every bit of my struggle.

I finally received my diagnosis a little over six years ago.  I've had my highs and I've had my lows.  Sometimes those days come on the same day.  I have made some courageous friends over the course of the past six years.  Some I already knew and some I would come to know.  Some of those friends only lasted a short season while others have lasted through the entire journey.  One thing has remained the same through my entire journey.  My faith in God.  I have no doubt that if it was His will then I would be cured, but He's not done with me yet.  He has plans for me. 

 
^{Jeremiah 29:11:}  For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Many years ago (17 years and 7 months to be exact), He gave me Lyme Disease.  He altered the course of my future, but my future was already planned.  He knew that this would be my world.  He also knew that I would not see the long term picture unless I had this thing long term.  Now I know some people won't agree with me and some will outright argue with me that God didn't give me this, but you know - I believe different.  I believe that each of us have a path that God plans out (even before we are conceived).  Controversial I know, but this is my belief. 

Over the course of the last 18 years I have been the rock to my friends with Lyme Disease.  I have helped countless people and I have stood strong when others would have crumbled.  I have over 30 Lyme friend's phone numbers in my cell phone.  Some of my Lyme friends are the best friends someone could ask for.  I'm not sure that they would have been placed in my path if I had not contracted this illness.  My Lyme advocacy efforts are high because of my degree in Social Work.  Why did I choose Social Work as a major?  When I was in the hospital the first time, the kindest person I met was the Social Worker through the duration of my stay.  I felt a kinship with her and that lead me to my major.  Those four years taking counseling, advocacy and Social Work classes helped shape me to be the person I am today. 

Plans for me were made before I was born - I believe in the hope and a future that God has planned for me. 
Why me?  The answer is simple.  I am capable of doing the advocacy and awareness work that needs to be provided for the state of North Carolina.  I am capable of discovering the people I need to surround myself in order to create the big picture.  God has a plan for me.  And I thank God that Christ has Risen!

Flustered and Overwhelmed (and a post without bullets)

I've been diagnosed with Lyme Disease for six years now.  Six years and 22 days to be exact.  It has been an extremely long time where I felt so much fluster.  I had my follow up on Tuesday and I thought it went pretty well.   I felt we discussed the good (I'm herxing from the oral antibiotics), the bad (my favorite IV nurse is leaving) and the ugly (possible picc line with IV antibiotics in our future discussion in May).  I left the office smiling and not overwhelmed.  To my regiment was one new antibiotic and another new pharmaceutical which is supposed to help with my pain.

Let me be clear - this is NOT a pain medicine, but a medicine that helps many things - one of those things just happens to help with nerve pain.  It comes with a point of pride for me that I refuse to take pharmaceutical products for pain.  In the last six months, I may have taken a total of 3 Tylenol (for headache along wiht a fever so really it was more for fever reducing than anything else).  Now before anyone gets in their high horse about Tylenol being bad for you - I don't have any other options.  The best option would be ibuprofen, but I've developed an allergy - and eye swelling allergy.  Some other things aren't options either so Tylenol it is.

I compare the new medicine to Neurontin.  Let me be clear - it is NOT Neurontin.  I've been on Neurontin before.  But I compare it to Neurontin because Neurontin is an anti-epileptic medicine.  The new medicine I believe also was initially used to treat epilepsy.  Neurontin can also be used for pain management.  In fact, when I was Neurontin over 7 years ago, it was to treat my headaches.  We chose the new one over Neurontin because I've experienced the Neurontin daze.  It doesn't make me fatigued, but it does create a fog where I feel that everyone else is going about 100 times faster than me and it makes me feel like I'm going slow as a turtle. 

In any case, I left the office feeling confident about the new plan for the next 7 weeks and was only waiting on my notes to be emailed.  Typically I take my notes with me, but my LLMD wanted to decide between two antibiotics and because the notes were so long he wanted to take the time to make sure they were right for my understanding.  So I left, happy - content - confident.

This was on Tuesday.  Fast forward to Thursday morning.  Emails from my LLMD come password protected.  This way I am the only one that knows the password to open up the notes.   Unfortunately, I had forgotten the password.  This was in some ways a blessing.  I went to work and then to a Lyme Advocacy meeting and then home where I remembered my password for the notes.  I opened them up and began to read.  I'm reading and things are clicking from the appointment.  Okay, Okay, Okay .  I understand.  And then I read in big capital letters THREE WEEKS.  This caused my heart to figuratively skip a beat and stop.  Do what?  FLUSTERED AND OVERWHELMED I tell you!

Then I kept reading - and the "Do whats?"  kept coming out of my mouth.  My eyes got large and all the sudden I felt flustered and overwhelmed.  So for the first time in about four years - I called my LLMD's office to ask for clarification about the notes. The person I needed (wanted) to talk to was busy with a patient and she offered to call me back when she could completely focus on my questions. Again, this was a blessing - I had time to read the notes fives times - and come up with a list of questions so I could stay on track when she called back.    Typically my brain is trained enough to come up with my own data sheet for my pharmaceuticals, but this time - I was completely flustered and overwhelmed.

So she scanned in and emailed the chicken scratch from my LLMD.  It helped, but yeah I'm still flustered and overwhelmed.  I pulled up a word document - and began to create a table for the next 8 weeks.  I still have work to do on it becaus I think I'm going to use an excel spreadsheet to help keep the words separated, but t his morning I woke - and looked at the list - and it took one whole sheet of paper for the morning medicines alone.  Flustered, overwhelmed, exasperated.

Soon, I'll get myself together - and tell myself to kick it in gear, but seriously.   Three new pharmaceuticals (one of which - might cause me allergic reactions because - well I didn't understand the pharmacist, but I know that I could very well get a rash all over my body because of my allergy to phenobarbital), along with all the old ones, plus 20 or so supplements - is overwhelming for anyone.  Taking a deep breathe and if you made it to the end of this post.  Bless you. 

Wednesday Ramblings

• I've been following a bill that was introduced into Virginia for a while.  This bill is known as the Lyme Disease Testing Information Disclosure Bill.  Basically what it is a requirement for physicians to provide written disclosure to people who are tested for Lyme Disease regarding false negatives. You can find the information bout legislative activities on the NATCAPLYME website: Today the Governor of Virgina passed this bill into law.   Although I am not living in Virginia, I find this to be very promising for other states (including North Carolina) to be able to pass similar laws.

• On May 17th, the Niagara Falls will turn green to commemorate Lyme Disease Awareness Month. 

•  On the 2nd week off of antibiotics, I am finally stabilizing.  I actually felt pretty good today.  I love that feeling. I want more of it. :)  

• I think I've been going through a writing slump lately.  I just don't know what to write about.  So bullets are the way I've been working through that.  Maybe an idea will just pop into my head.  If you all have ideas - please - encourage me.  :)

Weekly Update

I figure if I'm going to slack off on the blog then the least I can do is post a weekly update on how I'm doing. 

• Health - My symptoms have slacked off this week.  However, one symptom flared with a vengeance the day after I stopped my medications.  This hasn't happened in such a long time that it caught me by surprise.  I woke Monday morning with a small sore throat.  I thought nothing of it and went on my day.  The next morning I awoke at 2am with my throat so sore that I couldn't swallow.  My thoughts immediately went to strep, but with strep - I get a delirious fever.  I checked my temperature and it was normal. I got up - to find something.  My magical mystery drops. I found them and took them and only needed the first kind Tuesday to Thursday.   I'm still on the 2nd one.  I'm not sure if I've ever talked about these drops so I might as well share now in case I haven't

•  The first bottle is called Bio Chlor Dox.   According to the manufacturer, "Bio-Chlor-Dox is a natural antibiotic that kills bacteria by supplying generous amounts of oxygen to anaerobes, which are organisms that do not require oxygen for growth and may even die in its presence. It is an effective antiviral, antibacterial and anti fungal product. By administrating Bio-Chlor-Dox, the immune system is assisted in carrying out the normal body process of defense against invading microorganisms, with little or no toxicity to normal tissues."  Basically what it means - is that this supplement provides a lot of oxygen to organisms that don't need oxygen and therefore might kill them.  Whenever I feel like I'm coming down with something, I run to this bottle of stuff.   For me, I typically do 5 drops under the tongue twice a day until I feel better.  If I catch it early enough, I can clear it up over one day.    However, in this case - I didn't take it on the first day of the sore throat so it took me three days to clear up the throat issue.  If I'm feeling especially nasty, I might bump it to 5 drops 3 times a day.  I also use it if I've been exposed to someone who is very sick.  I'm not sure if it's actually doing something or if I just think it will so it helps.  Either way, I do not care.  It helps.  

• The second is something I take when I get specific symptoms - (sore throat, itchy throat, itchy eyes - aka allergy symptoms) - It's Quercetin drops.  It is supposed to inhibit the release of histamine (aka a natural anti-histamine)  For me, it's beneficial because I don't get drowsy.  I squeeze up a dropper full and down the hatch it goes.  I take it a couple of times a day until the histamine reaction minimizes.  I also take it if I know it's allergy season and I want a little extra boost.  The unfortunate thing is that it seems very difficult to get.  So the last few times I've ordered it, I've been sent a message saying the place I order it from is out of stock.  I keep a check and finally last week I realized it appeared the place had some.  I ordered it, they took my payment and it's on the way!  So I'm thrilled.  I can take it like I need to instead of decreasing the time I take it. 

• Home - I've spent the last week really working on getting the house clean.  Since I had such bad back and leg pain the previous two weeks, I hadn't really done much in the terms of cleaning.  Since Wednesday was such a great day for me (minus the sore throat), I practically cleaned the entire downstairs of the house!  Fortunately, it hadn't really gotten that bad since I hadn't been able to move around much.

• Advocacy - haven't done much on the advocacy website, but there are a few support group meetings this weekend. I'll attend one of them because the other is too far away.  Also been talking a lot with others about May Lyme Awareness Month.  We have a few ideas for May, but have to get some things in order before we can announce them.  We'd hate to announce that we were doing something and then the thing fall through the cracks. 

• I hope everyone has a great week!

March Update

 I have little time to focus on the personal blog since my time is so focused on the advocacy website.   However, I wanted to update everyone with my favorite format.  Random Bullets!

• I had blood work done yesterday.  I've discussed this before, but I basically need to drink 3 liters of water (with about 2 ounces of Gatorade mixed into that 3 liters of water) in about 3 hours the morning of a blood draw in order to have a chance of a stick.  I woke at 6am and began my ritual and by 8:45, I had finished my 3 liters with 2 ounces of Gatorade.  I knew I hit my "sweet spot," when I drank a sip of water - had to urinate immediately - finished urinating - got up - drank another sip and immediately had to urinate again.  So, I packed up one more bottle of water and left. I signed in at 9:25 and walked out at 9:40.  This included, scanning my insurance and license (twice actually - gave her an old license with my old address on it and my old insurance) - and her trying to call my doctor's office to clarify what he wanted (but they were closed yesterday).  Seriously, one of the easiest blood draws I've ever had.  For one, she listened.   For two, she remembered me from the last time.

• Symptoms:  I began to have severe leg and ankle pain as my back pain finally eased off.  Go figure that I get one of one excruciating pain and get another.  My heating pad was my friend and finally today that pain has eased to be replaced with a sore throat.  I'm sure that my voice is probably a little hoarse (an occasional symptom I get),but I haven't needed to talk today yet. 

• Lyme Advocacy:  I must spend a few hours (3) at the minimum on advocacy and awareness things a day.  Today for example, I woke up with several things in mind and have already spend an hour and a half.  Although, I suspect I will continue off and on throughout the day. In general, I speak with at least one Lyme patient daily on the phone and at least 5 on the computer.  If I had a couple of dollars for each communication about Lyme or Lyme Awareness, I'd be able to pay for my treatments.  On occasion, I get "lymed out."  On those days, I take a respite either in the morning or the afternoon.  I rarely take a full day off from awareness. It's just too important to me.

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!