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