Sunday, March 31, 2013

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!

Friday, March 22, 2013

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, March 13, 2013

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.  :)

Saturday, March 9, 2013

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!

Saturday, March 2, 2013

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.