What Those Of Us Who Suffer From A Chronic Illness Want You To Know

Since being diagnosed with Chronic Lyme Disease, I have been blessed to have the support of a loving family (a special shout out to my hubby Carl) and some pretty amazing friends.  Whatever I need, they are always there to encourage me and do whatever they can to make things easier for me.  That being said, there are some things that you may not realize about me and others who suffer in silence out of love and care for those near and dear to us.

Most days, on the outside to most people I look completely normal.  If only you could see what’s really going on inside. There’s a lot going on.  I work hard to hide my symptoms because I don’t want others to feel sorry for me, more importantly, I don’t want people to worry about me.  I’ve always been one that is independent and self-sufficient, but with this illness, at times I need the help and support of others which is at times hard for me to accept.  You see, on the outside, you don’t see the anxiety I deal with (thanks to brain fog and short term memory loss), hoping I don’t forget something important, like how to get home (which has happened) or the intense pain that consumes every ounce of my being or the hand tremors that makes my writing impossible to interpret or the days that my legs just decide they just don’t want to cooperate and last but not least when out of the blue I lose my voice for no apparent reason.  What a way to live right?  That’s just scratching the surface.  Because I care so much for my family and friends (each of you), I go to great lengths to disguise what I’m going through.  If there’s too much attention on my symptoms, I become insecure and stressed about what others might think of me which is obviously no way to live.

I share all of this with you to say, 1- thank you for your support, it really means a lot to me, more than words could ever say and 2- most days there’s a lot going on with me so if I seem a bit off, especially in social settings it’s not you, it’s me.  I am hopeful that one day I will be able to report that I am in remission or that I am completely healed.  Until then, keep me in your thoughts and prayers and I will be sure to do the same for you and your family.

Thank you for reading!

XO,

Windy

Why Me?

Throughout my journey with Lyme Disease, I have often wondered why me?  There are millions of people in this world, how and why did I get chosen to go through this?  I have at times wondered what my life would be like if I didn’t have to deal with this at all.  When I allow myself to go down that path, it’s easy to feel sorry for myself and become resentful of the hand I’ve been dealt.

After spending some time down “Why Me Blvd”, I come to my senses and hear a small whisper, “why not you?  “If anyone can handle this, it’s you, Windy”.  I’m reminded of that verse in the Bible that says, “I can do all things through Christ who gives me strength”.  You see, my faith tells me that God will never give me more than what He has equipped me to handle.  While it might be hard, and at times, really sucks (just being honest), I have what it takes to get to the other side.  You see on the other side of this “test” is a “testimony” and I hold firm to that thought when I’m having a bad day.  I choose to believe that God is using me to help others and that brings me so much joy and comfort.  It’s not about me, it’s about Him!  I could very easily become angry at God and some might feel I have every right to, however, my mother used to tell me that “to whom much is given, much is expected”.   I realize that in spite of my illness, I am truly blessed and have a lot to offer.  I plan to do all the good I can for as many people as I can.  If I can help at least one person who is struggling with illness (or in any other way) then I’ve done my job.

I may never really know why I am dealing with Lyme and that’s ok with me.  I’m a firm believer that everything happens for a reason and as long as I don’t allow myself to wallow in self-pity and stay focused on the bigger picture, God will see me through.

Still fighting,

Windy

You Are What You Eat!

Since being diagnosed with Chronic Lyme Disease, I’ve come across people who have suggested that what I eat might be having a negative affect on my body.  This is not something I wanted to hear because, well if you know me, you know how much I love to eat.  I must admit that my husband and I are known for going on date night and finding a new restaurant to try in downtown Austin.  We have a running list that we work from and are always adding to it!

During the month of January, I decided to give healthier eating a try to see if would help with some of the symptoms.  I gave up meat, coffee (boy was that hard), sugar, bread, and dairy!  Did I mention how much I love a good steak?  I started eating more fruits and vegetables and much to my surprise I slowly started to notice a difference in the way I felt each day.

The first week was the toughest as I started having caffeine withdrawals in the form of some pretty intense headaches. Once I got past that, things started to get better for me.  Right away, I noticed less inflammation, especially in my stomach area.  I think that is a direct result of me giving up bread and pasta, which I love almost as much as I love a great prime rib.  I also noticed the brain fog decreased a bit as I felt a greater clarity at times.  Not all the time, but it was a little better.  I didn’t feel as sluggish or drained as I normally did and less pain in my joints.  One new thing that I tried that I plan to continue is at least once per week having a carrot/turmeric shot with black pepper.  Since I started taking those shots, I have noticed less pain in my joints and less inflammation.  The black pepper helps with absorption.

To make a long story short, I like the way I feel when I’m making better food choices and will try to keep it as much as possible.  I have re-introduced some of the foods I had avoided, slowly and will only eat many of them in moderation if at all.  I’m still not back to my having my daily Americano from Starbucks, but’s that probably not a bad thing!

Still fighting,

Windy

 

 

 

 

So How Is Lyme Disease Treated Anyway?

If you know anything about Lyme Disease or Chronic Lyme Disease, you know there are various thoughts and opinions on how it should be treated.  When I think about my own treatment, boy I wish the doctor that treated me over 10 years ago would have properly diagnosed me, then maybe just maybe I would not be going through this right now.

You see, many doctors believe that when a person is bitten by a deer tick that is infected with Borrelia Burgdorferi, the bacteria that causes Lyme Disease if they are treated immediately with antibiotics for 28-30 days they should be ok and for the most part completely recover.  While in some cases this is true, the fact remains that more than 50% of those infected with Lyme Disease are misdiagnosed mostly due to the fact that the current method used to test for Lyme is outdated, therefore Lyme goes “missed” or undetected during routine tests.  As a result, a “clinical” diagnosis is often required which is typically based on a person’s symptoms, medical records and exposure to infected ticks.  I was diagnosed via a blood test for Lyme which by the way was off the chart positive!  The scariest part about Lyme Disease is that it mirrors or looks like so many other illnesses such as ALS, Parkinson’s Disease, MS, Chronic Fatigue Syndrome, and Rheumatoid Arthritis to name a few.

Once you’re properly diagnosed, your LLD (Lyme Literate Doctor) will work with you to develop the best treatment plan for you.  There are so many options, each person’s plan is unique to him/her based on the symptoms they are experiencing which can change daily as the Lyme bacteria travels to different parts of the body at will.

So let’s talk about my treatment plan.  Currently, I take a combination of antibiotics along with many other medications to treat the various symptoms I deal with on any given day.  Below is a snapshot of what I take:

Cipro, Bactrim, Minocycline, Cedex, Lyrica (Fibromyalgia), Lunesta (Sleep Aid), Armour Thyroid (helps regulate my thyroid), Diflucan (antifungal), B12 Shots (for energy), Flagyl, Cymbalta, multi vitamin, Zinc, Serrapeptase, Magnesium, Gabapentin, and Metronidazole.  I’m sure I’m missing a few, but I think you get the picture-I take a ton of medicine.  Some I take twice per day and a few only at night. I mentioned in an earlier post that I see my LLD every 3 months, that’s usually the time he will change up my medication so the Lyme in my body doesn’t become immune.

In addition to the medication, I try to detox (in at hot sauna) at a local spa at least once per month and get a massage to help with the muscle pain.  I thank God every day for medical insurance because without it the RX bill would be close to $2000 each month!  That’s why I’m so committed to lending my voice to help find a cure, not only for me but for anyone else suffering.  It’s costly in the area of finances and the body with all the medicine we are consuming each day.

We will find a cure!

XO,

Windy

Sick and Tired of Being Sick and Tired

I’m sure you’ve heard the phrase before!  My mother used to say it all the time.  It’s the perfect phrase to explain how I feel most days.  On one hand, I am thankful that God has blessed me to see another day, on the other hand, I’m immediately greeted with a number of symptoms that can change just as quickly as the day.

You see, with Chronic Lyme Disease, every day is a new challenge.  You’re always beyond tired. At least I am. That’s one of the major symptoms I have to fight hard against each day. No matter how much sleep I get, I always feel as though I’ve been awake for several days straight and that pretty much sucks!  Sorry, but I’m just being honest.  It can be quite frustrating to know that you have zero control over how you feel.  Yes, medication helps, (God knows I take lots of it) but for the most part, the medication is working on other symptoms, however, the exhaustion still lingers.  On any given morning not only am I extremely tired, my feet are swollen, I have a major headache and sensitive to sound and light, and that’s just for starters.  In a single month, I can navigate between over 100 different symptoms and no two days are the same.  Sounds like a party right?

I’ve learned over time that the medication I take will make me sick, but that’s how I know it’s working and doing its job to fight the Lyme and the co-infections that live in my body. So basically, it’s par for the course.  When I notice the medication is no longer making me sick, that’s a true indicator that the bacteria has become immune and that new medication needs to be explored.  My LLD will typically change up my meds every 3 months just so the bacteria doesn’t get too comfortable and learn how to “hide” from the medicine and continue to do harm.  The Lyme bacteria is pretty smart!

I’m still learning to deal with feeling both sick and tired. I’m hanging in there and confident that one day soon this too shall pass.

XO,

WC

 

 

 

 

 

 

 

 

 

 

 

A Marathon, Not A Sprint

It’s a few days after the Thanksgiving holiday and I have a lot to be thankful for!  Two years into my treatment plan and I’m seeing some progress.  During my last visit to my LLD, I received even more prescriptions, which left me a little down.  I was hoping that this visit, I would be allowed to decrease the amount of medication that I consume each day.  Even though that didn’t happen,  I realize that it could be a lot worse.  I could still be so sick that I can’t get out of bed or do anything for myself.  That’s progress, right?

On days where I feel myself feeling defeated or when I’m struggling to do even the simplest of things, I’m reminded that this process is a marathon, not a sprint.  I tend to want to see things done quickly so I can get on to the next thing, however, God has something else in store for me  during this season in my life.  I am learning to be patient, which has often been something that I’ve struggled with.   As I sit here typing this post, I’m feeling quite sluggish, I have a low-grade migraine and I have ringing in my ears.  Most people would not be able to function under these circumstances, but I have gotten used to it and God has given me grace to endure for he knows just how much I can bear. He gives me just what I need to run this race, and for that, I’m grateful.  My mother used to tell me all the time, “to whom much is given, much is required”.  I know that God has blessed me with much and he is using this illness to provide me with a platform to give him the glory and I intend to do just that!

‘Til next time,

WC

I’m Back!

Hello everyone!

Wow, it’s been a while since I’ve written anything.  Many things have happened in the two years since I’ve posted to my blog.  Where do I start?

Since, my last post, I have continued to see the same amazing LLD, Dr. Jonathan Forrester in Pineville, Louisiana (near Alexandria).  My treatment plan has changed a bit to focus on the ever-changing symptoms that I encounter.  I have also been diagnosed with two co-infections of Chronic Lyme Disease; Bartonella and Babesia.  Short-term memory loss has been a huge issue for me.  At times, I have trouble remembering what I did or said the previous day, which can be quite scary.  I take lots of notes to help me stay on track and rely heavily on my calendar to make sure I don’t miss any appointments for myself or events for any of my children.

In addition to the short-term memory loss, I continue to struggle with extreme exhaustion.  With the Lyme Disease, I suffer from bouts of insomnia which makes it hard on me during the day.  Even on the days where I feel like I’ve gotten a good amount of sleep, I’m still quite tired as a result of the disease.  Anxiety has also started to rear it’s ugly head in certain situations.  I start to become anxious over the smallest of things, that wouldn’t matter to most people.  The one thing that has really helped me get through it all is my faith in God.  I’ve always read my bible, but I find myself reading it more and more looking for hope in God’s promises to us.  I’ve also begun following Christian leaders, Joel and Victoria Osteen,  Joyce Meyer and of course my Pastors, Eric and Andrea Moore of Summit Worship Center in the Austin, TX area- who offer words of inspiration and remind me that God is in control.  My prayer life has also increased over the past few months and I continue to push through and navigate my life that now includes daily medication (I’m up to over 15 pills per day) and countless symptoms that come and go and seem to have a mind of their own.

My doctor told me during a recent visit that he would like me to add low-impact exercise to my treatment plan.  I have very little strength in my hands and my muscles are weak.  In fact, my hands are so weak, I have a hard time opening a small bag of potato chips, which would not have been an issue for me years ago.  I have little to zero muscle tone in my arms and legs too.  I’ve purchased a gym membership, though I’ve not gone much.  I get so tired and weak after a short time on the treadmill or the elliptical machine.

I’m staying positive and now only go see my LLD once per quarter instead of once per month.  This is a good thing since he recently announced to his Lyme patients that he would no longer be able to accept insurance.  My faith is strong and I continue to stay positive.  God is faithful.  He who began a work in me is faithful to complete it!

Til next time, be blessed!

Windy

 

 

Herxing and Insomnia

Well I have been on my current treatment plan for a few days now and things seem to be going ok.  At first it seems like nothing is happening at all, but that would change a few short days later.  By day 4 I began to have what I now know as Herx Reaction.  This is a term that basically means that you feel worse while you are getting better.  All of my symptoms seemed to getting worse and new one surfaced.  I was super exhausted, my legs felt like they were on fire, I had the worst migraines ever and I could not focus at all.  I honestly did not expect this, I mean isn’t medicine supposed to make me feel better?  What I later learned is that this is part of the process of getting better.  As the antibiotics are killing the Lyme in my body, the dead bacteria is creating toxins and causing inflammation.  At times I had a hard time breathing-“air hunger” and that can be quite frightening.  The Herx Reaction occurs in cycles, usually about every 4 weeks.  The other 3 weeks I am still feeling ill, just not as bad as week 4 which at times can seem unbearable.  It is during week this week that I have the most pain, the worst brain fog and tremors, the hardest time walking and talking and my voice comes and goes.  I also have problems with eye inflammation, involuntary muscle and limb movement.

Each day I wake up not knowing what symptoms I will be facing.  This makes if very difficult to plan out my activities ahead of time.  My sweet family just goes along with the flow of things and doesn’t really put pressure on me to do anything.  Most days I have just a couple of hours that I have energy to do things like pick up around the house or cook, so I try to save all my energy for that “one” thing after which I would crash.

The nights seem to be the worst for me, it’s around this time that I have developed insomnia.  I am up at all hours of the night, not feeling well but not being able to fall asleep.  My doctor prescribed Ambien for me, but I have heard so many horror stories that I refuse to take it.  I pray to God to help me to pass out so I can get just a little rest, if only for a few hours.  There are some nights that I am up until about 3am and I wake up at 7am and keep on going until the next day.  I try not to complain as I remember, this too shall pass!

Until next time!

Thank you for reading,

WJC

Help Is On The Way

As you likely imagine, by this point I am feeling very disappointed and hopeless.  Not knowing if I would ever find out what’s wrong with me is very disturbing to say the least.  At night while my family sleeps, I pray to God to guide me in the right direction to get the answers I sought.  He did just that!

In a previous post I mentioned that I met someone who also had Chronic Lyme Disease.  I reached out to her to gain more information about her treatment and the doctor she that was treating her.  After many hours of discussion and research, my husband and I decided it was worth a shot.  You see the doctor that I would begin seeing is located in Louisiana!  6 hours away from where I live in the Austin, Texas area.  The costs of travel and the unknown costs for copays, labs and potential medicine was worth me getting the answers I needed and longed for.  You may be asking why I need to drive all the way to Louisiana.  What I am learning is that in Texas there are not many doctors who are Lyme literate (more to come on that) and I have heard of people with Chronic Lyme Disease traveling as far as Chicago and California to seek treatment.  I know, it sounds crazy but it’s true.

So off we go to Louisiana.  As you can imagine I am feeling a wide range of emotions at this point.  Excited about getting some answers to scared of what I might find out to anger that I had to drive all this way because my own doctor brushed me off.  My wonderful husband is doing a great job at keeping me calm and focused.  He’s great at that…that’s one of the reasons I love him so.

We arrive.  We walk in an there are several patients in the waiting room.  My husband checks me in while I get situated in the lobby.  I am comforted by the many scriptures posted around the office.  God knew I needed to see that.  When I finally get called back to see the doctor, I provided him with all my medical records and he asked me a series of questions and such.  He did an exam, drew blood for lab work and some x-rays of my head.  Based on what he saw in my file, my symptoms and his examination he determined that there was a strong likelihood that I did in fact have Lyme Disease as well as a Co-Infection of Lyme Disease called Bartonella.  To be completely certain of a positive result, he wanted to wait to get the blood tests back.  

At this point, you may be wondering just what kind of symptoms I am having so I thought I’d share some with you (this is not all my any means):

Hand tremors, Brain Fog, Short Term Memory Loss, Unable to Focus or concentrate, pain, tingling and numbness in my feet/legs/arms, shooting pain in legs, insomnia, loss of balance, involuntary muscle movement, involuntary movement of limbs, weakness in hands/legs/arms, dizziness, abdominal pain, vertigo, extreme exhaustion (all the time), low-grade fever, loss of voice, eye infection, tenderness in the crown of my head, swelling and tender joints (fibromyalgia),blurred vision and back pain.  In total, I have a combination of 140+ symptoms.  Not all at the same time and not every day.  Each day is different, so I never know how I am going to feel when I wake up each day.

Finally after about 4 weeks, I go back to Louisiana for my second visit and got my test results.  I tested positive for “Chronic” Lyme Disease and during this appointment he also determined that I have Fibromyalgia and of course the Co-Infection Bartonella.  He started me on a treatment plan which consisted of a combination of various antibiotics and other medicine that would get me started.  He could mot make a determination how long this treatment would last though it has been said that for every year a person with Lyme Disease goes misdiagnosed, you need about 4-6 months worth of treatment.  I have been misdiagnosed since 2003…

On the way home and I am feeling relieved that I finally got some answers.  I am happy and a little nervous about what lies ahead, but with God on my side I know that I am up for the challenge!

Thanks for reading,

WJC

 

Where It All Began

So my story is quite complex in that I have been quite ill for many many years and could never figure out why or what was going on.  Over the past decade and more I have been seen by as many as 10 different medical physicians for a variety of symptoms, and  you can’t imagine the amount of money that comes along with all the copays and medication. Everything came to a head last fall when my health took a turn for the worse and I pressed doctors for answers and got copies of my personal medical records.  Here we go:

Upon reviewing my records my story dates back to April 1, 2003.  I woke up one day and noticed a circular rash on my right arm just below my shoulder and I had several smaller rashes on my torso.

Lyme Rash
Lyme Rash

 In addition to that, I noticed later that day that I was really tired to the point of exhaustion.  A few days later I noticed a tremor in my right hand, difficulty concentrating and had a hard time speaking and formulating sentences.  This obviously alarmed me so I called and made an appointment with a doctor who specialized in Internal Medicine.  She examined me and made note of all my symptoms and dismissed it as Rosacia and Non-Essential Tremor and stress.  A few months later I began having severe migraine headaches that would last weeks at a time.  This would continue for a few years.  Then in 2007 the tremors became worse along with the migraine headaches.  I went to my primary care physician who treated me for migraine headaches and suggested that I speak with a counselor for anxiety as he felt that’s the reason for my tremors.  Keep in mind I told him that I was not stressed or anxious, but he assured me that it must be the case, so taking his advice I made an appointment.  After a few sessions, the counselor did not see a need for me to continue.  I could have told her that!!

My symptoms continued for a few more years and I continued to get the same answer that it was just stress or in my head.  I was given all kinds of medicine to treat and prevent migraine headaches that only worked for a short period of time.  As you can imagine it became quite exhausting and frustrating.  I was taking care to 2 small children and they needed me. I was in and out of the Emergency Room and doctor’s offices over the next few years trying to get some relief. I would pray to God for answers…they would eventually come, but it would take a few more years.

Fast forward to 2011.  I was on my way home from work and all of a sudden I just felt as if I was going to pass out.  My hands were both trembling out of control and I could not focus or think and had a very hard time speaking.  I became quite frightened and called my husband on the phone who told me to meet him at the hospital.  Upon arrival I was seen by a neurologist, given an MRI, CT Scan and EKG.  You see at this time, my heart rate was up, I was lethargic and not my self at all.  I was admitted and told to make an appointment with a neurologist who would further evaluate me.  The day of the appointment I was told that I had a Chemical Imbalance as well as Anemia and again an Unexplained/Non-Essential Tremor and was given several scripts of medicine and sent home.  The medicine would “work” for a while and I thought finally I was going to get well.  Not so!  My symptoms would return as well as some new ones.  In 2012 I began to forget things and experience anxiety and I would easily become irritated over the smallest things.  My tremors were at an all time high, it became hard for me to hold items with any weight to it.    I thought just maybe the doctor might be right-that I was under stress from my job and didn’t realize it; and now that I no longer held that position maybe my symptoms would go away.  Not so.  The exhaustion increased, but I continued to push myself.  

It’s now 2013 and by this time I am just beside myself.  I think it was July or August that I started having issues with my legs.  It felt like my legs were on fire!  I thought I had slept wrong or something and dismissed it.  Over the next month or so the pain got worse, to the point that it kept me up at night.  My legs would go numb at will without warning.  The pain would go from the bottom of my feet up to the thigh.  This went on for a few more weeks until I went to visit my neurologist yet again.  He performed all kinds of test and suggested that I had Restless Leg Syndrome or MS.  Here comes more medicine.  A few months later I started having pain in my abdomen near my liver.  Blood tests had shown that I had an increased Ammonia Levels and I needed to see a GI doctor.  Here we go again…So the GI doctor ran some additional test and made the decision for me to have a Liver Biopsy due the fact that the high Ammonia Levels usually indicates issues with Liver function and with my family history of Liver Disease (mom passed away in 1994) he thought I should have this done, so I did.  The results were inconclusive.  The doctor was stumped and said he didn’t know what else to do for me and my liver appeared to be functioning normally.  Are you kidding me?  Here I go back to the Neurologist and he has no answers for me either other than to continue to monitor my ammonia levels for the next few months.  I would be in and out of the hospital lab having my blood drawn; I had every blood test known to the medical world.  My ammonia levels would continue to go up and down without a “real” reason.  Here’s where my story gets interesting.

I met a young lady who heard of what I had been going through (as she had been dealing with similar situation herself) and suggested that I might have Lyme Disease.  You see for many years, she too had been in and out of the hospital and several doctors offices trying to find answers and had eventually been diagnosed with Chronic Lyme Disease.  She sent me all kinds of literature and I started researching the illness on my own.  Most of what I read resonated with me and what I was going through.  I took a chance and called my neurologist and asked to be tested.  He said he didn’t think it was needed but did the test anyway.  The results were negative…or so I thought!  It was during this time that I saw a documentary on Lyme Disease called “Under Our Skin” .  It documents the stories of several different people who are dealing with Lyme Disease and the “controversy” surrounding it.  I will explain later.  Long story short there is a more detailed test that must be performed if a person has had Lyme Disease for more than 1 year and most doctors don’t want to deal with it (again I will explain later) or they don’t have the knowledge needed.  I called my Neurologist up and asked to be tested for “Chronic Lyme Disease” and was totally shocked by his response.  Here’s what he said (via his nurse): “Chronic Lyme Disease is a very controversial subject and I don’t want to test you for it.  If I do and you come back positive, I will have to treat you (since I am his patient) and I don’t want to deal with that.  I think you should see an Infectious Disease doctor who can maybe help you”.  I was beyond upset. Don’t these doctors take an oath to do what they can to help all patients????  I guess that went out the window…

Help would eventually come…

Stay tuned!

WJC

Photo Credit:

Logical Images, Inc.