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

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

 

 

 

 

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.

What Is Lyme Disease?

For my very first post, I thought it fitting to share what the heck Lyme Disease is in the first place.  If you’re like me, you’ve most likely heard the very short version of what it is or maybe you’re unfamiliar altogether.  So here is goes;  below is how Lyme Disease is defined via Wikipedia:

“Lyme disease (Lyme borreliosis) is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.[1][2][3] Borrelia burgdorferi sensu stricto[4] is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii cause most European cases. The disease is named after the towns of Lyme and Old Lyme, Connecticut, US, where a number of cases were identified in 1975. Although it was known that Lyme disease was a tick-borne disease as far back as 1978, the cause of the disease remained a mystery until 1981, when B. burgdorferi was identified by Willy Burgdorfer.
Lyme disease is the most common tick-borne disease in the Northern Hemisphere.[5] Borrelia is transmitted to humans by the bite of infected ticks belonging to a few species of the genus Ixodes (“hard ticks”).[6] Early symptoms may include fever, headache, and fatigue. A rash occurs in 70–80% of infected persons at the site of the tick bite after a delay of 3–30 days (average is about 7 days), and may or may not appear as the well-publicized bull’s-eye (erythema migrans). The rash is only rarely painful or itchy, although it may be warm to the touch. Approximately 20–30% of infected persons do not experience a rash.[7][8] Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early.[9][10] Delayed or inadequate treatment can lead to more serious symptoms, which can be disabling and difficult to treat.[11] The term “chronic Lyme disease” is controversial and not recognized in the medical literature,[12] and most medical authorities advise against long-term antibiotic treatment for “chronic Lyme disease”.[13][14][15]”

 

I know that’s a long definition, but it paints a very adequate picture of what I am currently dealing with.  I hope that you pay close attention to the last sentence pertaining to “Chronic Lyme Disease”, this will become more clear as in future posts…very interesting I promise.

 

Thank you for reading,

WJC