May Is Lyme Disease Awareness Month!

As we kick off the month of May, I thought it befitting to write a post that is dedicated to Lyme Disease as it is the start of Lyme Disease Awareness Month. In this post I will share some basic information about Lyme Disease as so many still know very little about this chronic yet debilitating disease. Did you know that it is estimated that roughly 30,000 new cases of Lyme Disease are reported each year? That is a very low estimate, as it is thought to be more than double that number but many cases each year go undiagnosed or misdiagnosed as another illness or disease.

So what is Lyme Disease exactly? To be honest it can be hard to explain. In it’s most basic terms, Lyme Disease is an infectious disease caused by a species of bacteria belonging to the Borrelia family. Borrelia burgdorferi sensu stricto is the main cause of Lyme Disease in North America. The disease is named after the towns of Lyme and Old Lyme, Connecticut 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 Burgforfer.

Lyme Disease is the most common tick-borne disease in North America and is transmitted to humans by the bite of an infected tick belonging to a few species of genus lxodes (hard ticks) Early symptoms may include fever, headache and fatigue. A bullseyes rash occurs in 70-80% of infected persons at the site of the tick bite after a delay of about 3-30 days. The rash is only rarely painful or itchy, although it may be warm to touch. Approximately 20-30% of infected persons do not experience a rash. Left untreated, later symptoms may involve the joints, heart and central nervous system. In most cases, the infection and it symptoms are eliminated by antibiotics, especially if the illness is treated early (within the first 30 days of being infected). Delayed or inadequate treatment can lead to more serious symptoms which can lead to disabling and difficult to treat. The term ”Chronic Lyme Disease” is controversial and not recognized in the medical literature and most medical authorities advise against long-term antibiotic treatment for chronic lyme disease.

More work needs to be done in order to bring about more awareness. I must admit before I got sick and diagnosed with Chronic Lyme Disease, I had no idea what it was other than it being something that I knew pets could contract. I worry that if more education is not provided more and more people will be misdiagnosed and will suffer because of it. That is why our family started the Windy J Cumberbatch Foundation, to help provide more education and awareness in an effort to help others and Empower | Encourage | Inspire those living with Lyme Disease and other chronic illness such as Fibromyalgia.

Please visit our website at windyjcumberbatch.org for more information. We welcome your tax deductible donation that allows us to provide transportation to and from doctor visits and assist with co-pays. You can also follow us on social media: Facebook- @windy j cumberbatch foundation and IG: WJC Foundation, Podcast: Windy’s Journey on Apple Podcast, Google Podcasts or wherever you stream.

Thank you for stopping by!

-Windy

2021: My Year In Review

I can’t believe 2021 is just about over. It seems like just yesterday we were ringing in the new year from our homes, tucked away due to the COVID-19 pandemic. I wanted to recap how my year went as I look forward to 2022. I must admit, due to my illness memory loss makes a bit challenging to recall a lot of things that I encountered, so I will just touch on the things I can recall.

If I’m honest, this year has been full of anxiety and a little fear as I have tried by best to protect myself and my family from the COVID-19 virus. It has been hard because some of the symptoms I face on a daily basis tend to mirror many of the COVID symptoms. I wear my mask faithfully, wash my hands often and sanitize my hands more than I care to admit. Can you relate? Wondering if I remembered to wash my hands after touching a public space, do I have enough hand sanitizer, oh and what about the person in the drive thru that was not wearing a mask, was that ok? So many emotions, so much stress and way too many things to think about each and every day! I often wonder if I am being a little paranoid, but with my current physical condition my body would not be able to handle anything additional. Most days are spent at home on the couch or lying in the bed trying to rest and allow my body to heal itself one day at a time.

As I continue to navigate the COVID-19 pandemic and all of it recent variants, all I know to do is pray that God will protect me, my family and friends. I try to seek his guidance on what I should, how to listen to his voice and most importantly remember his promise to keep me and to never leave me. That does not mean I don’t get scared because I do, but when that fear creeps in I give that fear to God and exchange that fear for his truth that only he can provide. I wish I could say it’s easy, it’s not. It’s a fight everyday and I have to choose each day to trust that God will see me and my family through.

I look forward to the day where we no longer have to worry about COVID-19. It’s been over 2 years since I’ve seen my dad, brother (and his family), and my grandmother. I have family and friends that I’d love to go see, but I want to do my part to keep them safe, especially those who have a compromised immune system like me. We will get there, until that time I will continue to do my part to protect myself, make educated decisions for my health and continue to trust that God is in control.

Thank you for stopping by and don’t forget to check out my new podcast, “Windy’s Journey“, now streaming on Apple Podcasts, Spotify, Google Podcasts or wherever you stream. Also check out our foundation, Windy J Cumberbatch Foundation, where our goal is to Empower | Encourage | Inspire those living with chronic illness. The main way we help others is by providing transportation to and from doctor visits to those who need it. All donations are tax deductible! We could not do what we do without your support.

Thank you for your support and cheers to 2022!

XO,

Windy

Lyme Disease vs. Chronic Lyme Disease

It took me a while to write this post. There’s so much I want to share with you, but I’m afraid it would become overwhelming and I would lose you. The battle between Lyme Disease and Chronic Lyme Disease is probably not widely known across the country, primarily because Lyme Disease itself is not well known. I am going to do my best to try to share my what I know as it relates to the controversy surrounding this illness.

To start us off, I want to remind you that Lyme Disease is caused by a bacteria called “Borrelia” and it is most commonly found in deer ticks. Once you are infected with Lyme via a tick bite by an infected deer, it can take anywhere between 3-30 days before you noticed any symptoms. Once you noticed symptoms or you noticed a tick embedded in your skin it’s important that you see a doctor right away. At this point, you will be tested for Lyme Disease and if your test comes back positive you will be prescribed a round of antibiotics (most likely Doxycycline) for about 30 days. At this point the antibiotics will do it’s work and you should be ok. However, if you are bit by an infected deer tick and you don’t get treated within the first 30 days it can be hard to diagnose. The longer you go without being diagnosed, the harder it will be. This is where the controversy comes in.

Some doctors do not believe that an illness that goes untreated for long periods of time, such as Lyme Disease, could turn chronic. Some doctors believe that 30 days of antibiotics will do the trick and cure you. That is not the case with Lyme Disease. If you are infected and go untreated, the Lyme bacteria begins to take up residency in your body. The bacteria spirochetes begin to travel throughout your entire body and eventually every area of your body will become infected. Areas such as: (List not conclusive)

  • Central Nervous System
  • Brain
  • Respiratory System
  • Heart
  • Eyes
  • Dental
  • Muscles
  • Reproductive System

Once the Lyme bacteria invades the various areas within your body and the longer you go untreated, your symptoms begin to worsen and the illness turns Chronic, as it did in my case. Once this happens, the illness can be hard to detect, primarily because the current tests are not specific or sensitive enough to detect Chronic Lyme that has been invading your body for weeks if not months. The main reason for this failure to accurately test for Lyme is the fact that there are more than 1 strain of Lyme. The traditional tests that most doctors use will only test for 1, which means you could get a false negative. In order to be properly diagnosed you will need to be seen by a specialist who knows about Chronic Lyme and has access to the proper test. When the disease isn’t caught in time, it can spread throughout the body and cause chronic health problems that could otherwise be avoided with earlier detection and treatment.

The short story is, if you are bit by an infected deer tick and become sick, please see a doctor immediately and be test for Lyme Disease. Some of the early symptoms of Lyme Disease are:

  • a rash that looks like a red oval or bull’s-eye anywhere on your body.
  • fatigue
  • joint pain and swelling
  • muscle aches
  • headache
  • fever
  • swollen lymph nodes
  • sleep disturbances

Please note that only 70-80% of people infected with Lyme will develop the bulls eye rash, which means that 20-30% will NOT develop one. That means, if you notice symptoms and don’t see the rash you should still see a doctor and get tested. If you dismiss the symptoms as something else like the flu and don’t get tested and seek treatment, the bacteria will infect your entire body and turn to Chronic Lyme and become more challenging to treat. Symptoms will increase and become intense over time, again making it harder to treat. At this point you will need to see seen by a doctor who knows about Chronic Lyme Disease who can determine the best path and begin treatment. The longer you’ve gone untreated the longer it will take to see improvement. In some cases, Chronic Lyme Disease can become debilitating and cause disability.

More work needs to be done, more education, better testing, and increased awareness in order for people such as myself who have been suffering for years, to get the treatment we deserve. For more information, please visit my foundation’s website Windy J Cumberbatch Foundation. To learn more about more story, please check out my podcast “Windy’s Journey” now streaming on Apple Podcasts, Spotify, Google Podcasts & more!

Thank your stopping by and thank you so much for your support!

XO,

Windy

Loneliness & Chronic Illness

I have been living with Fibromyalgia and Chronic Lyme Disease for almost 2 decades. Wow! I don’t think I’ve ever said it like that before. Let me try it again…for almost 20 years, a little less than half of my life, I’ve been sick! As you can imagine, with prolonged sickness comes frustration and if I’m honest, loneliness creeps in at times.

You see, while my husband is working and the kids are in school, I spend my day at home alone. Outside of the chats with my girlfriends and catching up with family, I’m usually home in bed or on the couch pondering what to do next. To be transparent, what I’m really pondering is what CAN I do today? You see most days I am not feeling well enough to do the things I used to do or really desire to due to the various symptoms I navigate on a daily basis. I wake up each morning not really knowing what to expect or how I am going to feel. How I long for the days when I could get up and do whatever I wanted to do that day. Insert loneliness.

I think what’s really taking place is I am grieving the way my life used to be and a good friend of mine helped me realize that I would never get that life back, nor should I strive to. You see, the old Windy didn’t know she was sick and was living a life that could not continue. The old Windy had not stepped into what God had for her in order to stretch her into what God is calling her to become. Whew…that’s hard to hear at times but it’s true. If I were to go back to the way things were in the past, I would be far from who I am called to be. Even though it’s hard most days and even though I am lonely at times, I would not trade it for anything if it means getting closer to who I am created to be.

So what do I do to all day? Well I’m glad you asked!

  • I take lots of naps! (Naps are the best and much needed to allow my body to heal itself)
  • Eat (Way too much)
  • Read my Bible (Food for the soul)
  • Pray (Talk to God about all the things)
  • Nap some more (Ha!)
  • Think about ways to help others (Giveback)
  • Laugh at myself (When I’m not crying. Laughter is good medicine)
  • Check on my family and friends (I love you all)
  • Doctors appointments (I love my doctors too)
  • Repeat
  • Oh, I’m sure I take another nap!!!!

It can be lonely living with chronic illness and I am so thankful for the people in my life (You know who you are)who help me keep my spirits up and push through and never give up. This too shall pass.

Thanks for all of your support. It means everything to me. Please be sure to check out my new podcast, “Windy’s Journey” which is now streaming on Apple Podcasts, Spotify and Google Podcasts.

Until next time, XO

Windy

The Mental Impact of Lyme Disease

Ask anyone who is living with Lyme Disease whether the illness has taken a toll on their mental health and I’m sure you’ll discover that a large percent of them would agree that it most definitely does. In doing some research over the years, I was shocked to learn that 28% of people living with Lyme have an increased likelihood of developing some sort of mental illness. Which in my mind means more work needs to be done to understand the illness, increase more awareness to get Lyme patients the care they need and deserve.

Since Lyme Disease has such a huge impact on your overall health, it’s inevitable that there would also be an impact to your finances, as treating Lyme can become quite costly. This heavy pull on your finances can lead to anxiety, isolation and depression. It can also have a negative impact on a person’s relationships, work life, cognitive health and emotional stability. In the most severe cases of Lyme Disease (Chronic Lyme), patients suffer for longer periods of time, even a lifetime of major nerve abnormalities, memory loss, and a host of other issues that can have an impact on their ability to function on a day to day basis.

Lyme Disease is not easy to diagnose or treat, which can be frustrating for the person living with the illness. This can contribute to the emotional toll that comes with the illness. Being told by some “You don’t look sick” or that “It’s all in your head” because so little is known about the illness. It can leave the patient feeling like their fighting the entire world and all they really want to do is feel normal.

We have a long way to go to bring about more awareness and educate society on the seriousness of Lyme Disease and the very real and long lasting impact this disease has on a person’s mental health.

Want to make a difference in the lives of those suffering in silence with Lyme Disease? Please consider making a donation to the Windy J Cumberbatch Foundation where our goal is to Empower, Encourage and Inspire those living with Lyme Disease and other chronic illness.

Thank you for your support!

Follow “Windy’s Journey” Podcast now streaming on Apple Podcasts, Spotify Podcast and Google Podcasts.

Gluten Anyone?

So for those of you who know me really well, you know how much I love good food! I guess you could say I’m a self proclaimed “foodie”.  My husband Carl and I like to try new places to eat. Carl has created a list that he keeps in his phone of places he wants us to try.  Our friends often call on us when they are planning a date night and want a yummy place to eat.

Now, let me tell y’all what happened to me about 2 years ago!  I still can’t believe it myself…

I guess it was Summer of 2018.  I’m starting to get used to the daily IV infusions, when I began to experience some issues with my digestive system.  Right after I would eat, I would begin to experience some discomfort, however it was inconsistent so I didn’t really pay too much attention to it.  As the days and weeks went on, I began to notice pain in my stomach that at times hurt so bad that I would double over in agony.  My joints would begin to hurt, first in my left shoulder, then it would progress all over my body.  It was so strange, and I could not understand what was causing the pain.  A few times I would become nauseous and begin to vomit until whatever I ate was out of my system.  This went on for months until I mentioned it to my doctor who would run a series of tests to try to figure out what was going on.  A few days went by and the phone rang.  The doctor asks me if I had ever heard of Gluten.  I said yes, and asked what that had to do with me.  He said, “Well your test results are back and you cannot have Gluten”.  Say what????  He started talking to me about Celiac Disease and then asked if I’d always had issues with food causing me pain.  In that moment I couldn’t think of anything, I was still in shock by what I was hearing.  Honestly, the only thing on my mind was bread and how this news was going to impact my love for it.  I mean bread is one of my favorite things and now that was gone…at least that’s what I was thinking in this moment.

Fast forward one day when talking with one of my college friends, she reminded me how I would get so tired and not feel well after a meal.  I would always complain of my shoulder joints hurting, feeling sick and needing to lay down.  Then I spoke with my dad who shared that he and my mom had a hard time finding formula for me because I had a hard time with it. In 1972, my parents didn’t know what Gluten was (I guess my pediatrician didn’t either-Ha!).  So, it was concluded that I’ve had this issue with Gluten my entire life, but the Lyme Disease triggered it in such a way that I could no longer tolerate it, even in small amounts.

Nowadays, whenever I eat even a very small amount of Gluten, I begin to feel extremely sick and my small intestine tightens up and my body is flooded with intense pain and inflammation.  The only thing that helps is for me to bring up whatever I’ve eaten and even then I still feel the side effects for about a week.  I hate dining out now because I feel like I am interrogating the server to make sure there is no Gluten or cross-contamination.  You might be wondering what cross-contamination is.  To put it as simply as I can, it’s when you have food that does not contain Gluten and cook it (or use the same utensils ) on the same surface, skillet etc as you would food that does contain Gluten, that creates cross-contamination.  For me, I am so sensitive to Gluten that even the slightest error will cause a huge issue for me so I have to be careful.  Many restaurants will tell you their food is Gluten-Free, but there’s so much cross-contamination going on in the kitchen that the Gluten Free food is no longer Gluten Free.  It’s hard to explain…

I would love to see a lot more education about Gluten/Celiac Disease in the restaurant industry. More needs to be done for restaurant owners, chefs, and their staff , to better understand the risks.  Additionally, to understand how to properly prepare Gluten Free options and more importantly, how to eliminate cross-contamination.  I do see some progress, and there are quite a few places to eat here in the Austin, TX area that understand and do it right.  I feel safe at the places that know what I mean when I mention cross-contamination or have a protocol in place when someone requests GF options.  Here are a few of my favorite places (in no particular order) that have many options and/or have a protocol in place to avoid cross-contamination:

These days, during the COVID-19 pandemic, we are cooking most of our meals at home, but one day I hope to enjoy a few of these places again.  Until then, off to the kitchen we go!

Until next time,

XO,

Windy

P/S

If you know of a great place to get Gluten Free options in the Austin, TX area, please comment on this post or shoot me an email to windy@windyjcumberbatch.org

Windy Eating Dee's Cupcakes

Me eating a GF Red Velvet & Chocolate Chip Cupcake made by our daughter, Dee, owner of Dee’s Sweets & Treats!

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

 

 

 

 

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