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

The Importance Of Setting Healthy Boundaries

For those of us living with chronic illness (and really for everyone) it’s very important to set healthy boundaries. Taking the first step can seem hard and scary because for most us, the illness in on the inside of you, no visible or noticeable signs of being ill which can make it easy for others to forget.

Taking time for yourself to focus on you is crucial when it comes to your health journey. In doing so, it will require setting realistic expectations for yourself and managing the expectations that others have set for you. Our family and friends don’t mean us any harm, they just want to spend time with us and/or do things they used to be able to do with you. They may simply wish things were back to normal. However, when we fail to set those boundaries we end up maxed out, lacking the energy we need in order to focus on the things that are important to us. We become out of balance. Sound familiar?

Living out of balance for someone who is living with a chronic illness can lead to a relapse in your health. You may begin to experience:

  • Flare up of symptoms
  • Anxiety
  • Depression
  • Poor appetite
  • Isolation
  • Lack of energy
  • Weight loss or Weight gain
  • Emotional strain
  • Hospitalization
  • And more!

So what does setting healthy boundaries look like practically? Well I’m glad you asked! Below are a few that I came up with that are personal to me that I have been working to implement, but I would love to hear what things you have put in place that helps you.

  • Saying “No” to the things you need to say no to
  • Learning to identify when your body is telling you to slow down
  • Set aside personal time just for you (Put in on the calendar)
    • Day at the spa
    • Exercise
    • Read a book
    • Take a nap
    • Go for a walk
    • Sit outside and get some sun
    • Do absolutely nothing!
    • Did I say take a nap? Hahaha! (You may noticed, I really love naps)
  • Communicate: Let your family and close friends know that setting boundaries is important for your overall health (They will understand…they love you)!

I think it’s also important to take baby steps. Don’t try to do it all at once. Pick one thing to focus on that you want to implement. See how that feels after a few weeks then consider layering on something else until you’ve developed a good habit of making time for yourself. The goal is for you to take the time you need each day to focus on you so you can put the best version of yourself forward. If you’re tired and overwhelmed, that can lead to a setback in your health. My doctor once told me that rest is super important to allow my body time to heal itself. If I keep going and going and going…well that won’t be good for me so I am committed to doing what I need to do to promote healing in my mind, body and soul.

I would love to hear what’s working for you; send me a little note or comment below. You may be doing something that might help me in my journey. At the end of the day, we’re all in this together.

Thanks so much for stopping by!

Until next time…

WJC

Happy New Year | 2022

Happy New Year! Wow, I cannot believe it’s already another year. I’m not sure about you, but I feel like 2020 and 2021 just flew by so fast. Is it just me or do you feel the same way? With everything that has been going on in our world as it relates to COVID-19, things have changed so quickly. I’m sure by now you’ve heard the phrase “New Year, New You” more times than you care to admit. In the past I may have heard this phrase, shrugged my shoulders and moved on, but this year is different. For those of us who are chronically ill we look forward to the new year in hopes it will be the year we see a change in our current circumstance. That things will be both new and different. We are looking forward to the day when we’re not limited by our disability. We’re able to do the things that we may have taken for granted in the past, things like going to the park with your kids, going for a long walk with our spouse or partner or just walking from room to room in your home without feeling like you’re going to pass out. That would be so amazing! If I’m honest, I look forward to that time.

When I think about what I’m most hopeful for in 2022, it’s a renewed sense of myself. What that means to me is really understanding who I am, what my God given talents are, what my purpose is and being able to simply walk in it. Being able to contribute in a meaningful way to my family and friends as well as those around me like my neighbors. When I say neighbor I mean that in the most general since, meaning anyone who is not a member of my family. To be able to have that feeling of hope and joy and peace. Peace that only comes from God. Peace within that no matter what my current situation is or my physical limitations are, I can still be used to Empower, Encourage and Inspire others. Especially those suffering from chronic illness. That’s important to me because it’s my experience that those living with chronic illness can at times feel less valuable because of our limitations. So I am looking forward to 2022 so I can step into all that I was created to be even though I am dealing with Fibromyalgia, Chronic Lyme Disease and more. Suffering in such great pain that it causes me to weep. In the midst of all these things I still want to help someone else. Rather it’s by sharing my own story to let others know they are not alone. I may not have personally met you, but I see you. I see you! And more importantly, God sees you! God has a plan for each of our lives. This test we are going through with our health will become our testimony that will impact someone else and give them hope that they can get through whatever they are facing.

With all that said, yes I am looking forward to 2022. I have a feeling it’s going to be good year. Better than the past 2 years, especially when you consider COVID-19 and the impact it has had on all of our lives. One goal that I am setting for myself is to eat better. I want to eat less meat…for those of you who know me you know that will be hard for me because I truly love a great steak! I want to eat more fruit and veggies and reduce the amount of sugar I consume. I am Celiac (can’t have Gluten) so I already live on a Gluten Free diet but I need to do better. I think that will help me not feel so sluggish during the day. Also drink a little less coffee!! What, did I just say drink less coffee?? Boy oh boy that’s gonna be hard. I LOVE COFFEE! Ha! Maybe substitute it for hot tea and maybe try drinking it with less milk.

So anyway, Happy New Year! I’d love to hear how you’re doing in 2022 and what your goals are. You can comment below are send an email to info@windyjcumberbatch.org. Please be sure to check out our foundation by visiting https://www.windyjcumberbatch.org/ where our goal is to Empower | Encourage | Inspire those living with chronic illness. You can also follow my podcast “Windy’s Journey” now streaming on Apple Podcasts and Spotify.

Thank you for stopping by and for all of your support! Be sure to follow and share with anyone that might benefit from hearing my story.

XO,

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.

Lyme Disease & Celebrity Impact

Since being diagnosed with Chronic Lyme Disease in 2014, I’ve learned that not many people know much about the disease and I must confess, before 2014 neither did I but I’m learning. Over the past few years, however, I have noticed an uptick in awareness thanks to some brave celebrities stepping forward and sharing the personal journey with this debilitating disease.

In this post, I wanted to highlight a few celebrities who have Lyme Disease in hopes it would help to increase awareness and further educate our community.

Alec Baldwin
Justin Bieber
Kelly Osbourne
Ally Hilfiger
Ben Stiller
Ramona Singer

Shania Twain Yolanda Hadid

I’m so thankful they decided to share their stories as I feel it gives credibility to a disease that isn’t as well known and I am hopeful that even more people will have the courage to share their experiences as well.

Lyme Disease is a really hard illness to live with, especially if you’ve had it for a long time and it turns chronic. It is my hope that we will one day (soon) find a cure so those of us who suffer can get our lives back.

Thanks for your support!

WJC

Repost: What Is Lyme Disease?

For those of you who may not know my story or my journey living with a chronic illness, I thought it would be helpful to share a few older posts that help to explain where it all started. My journey is not yet complete, but my faith continues to be strong in knowing that God has a plan for all of it. Over the next several months I will reshare posts that I feel help create more awareness.

Thanks for stopping by,

-Windy

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

Repost: Lyme Disease & COVID-19

2020 (and so far in 2021) has proven to be a very challenging year to say the least. The COVID-19 pandemic has taken a toll on everything from our health to our national economy. As someone who suffers from Chronic Lyme Disease, it can be quite scary as many of my symptoms can mimic Coronavirus. I thought I would use this post to discuss some of the similarities between the two.

Lyme Disease and COVID-19 have a lot of things in common from headaches, low-grade fever to extreme fatigue and body aches. Both are great imitators in that COVID-19 mimics respiratory illnesses such as Influenza or Pneumonia while Lyme can mimic diseases such as MS and Parkinson’s Disease. Both can be considered “Long Haulers” in that symptoms can be debilitating and remain for long periods of time well after a person becomes ill. You might remember me sharing that I was infected with Lyme in 2003 but was not diagnosed until 2014. So for 11 years I had symptoms that went undiagnosed.

If you have Lyme Disease in the Chronic or Late Stage you could be at greater risk because your immune system is significantly decreased. It can be difficult to determine if your symptoms are COVID or Lyme at first, however one major difference is COVID-19 attacks the respiratory system pretty aggressively and includes a frequent cough, sore throat and shortness of breath, while Lyme does not usually (though it can if you have co-infections) present in the airways. If you suffer from any of the co-infections associated with Lyme Disease such as Babesia, you can experience problems breathing, such as shortness of breath and/or air hunger like I do.

If you experience any of the symptoms I mentioned (fever, fatigue, cough or shortness of breath), it is important for you to keep track of your symptoms and contact your Primary Care Physician immediately. If you experience these symptoms along with a bullseye rash, this is a sign of Lyme Disease and should be reported. Be sure to let your PCP know if you’ve been in heavily wooded areas, as ticks that cause Lyme Disease often hide in the brush and leaves. (Primarily Deer Ticks)

I share all of this with you because as you can probably imagine, some days I wake up with a little anxiety wondering if I have come in contact with COVID-19, then God reminds me that it’s my Lyme symptoms. Some days I have a shortness of breath, while other days I have the absolute worst migraine and body aches. I have to tell myself, “Windy, you’ve been feeling like this off and on for several years, you’re ok”! Sometimes for just a split second I get scared and wonder if I have done all the right things to protect myself. I choose to put my trust in God and do my best not to worry.

Please be safe out there, especially those of us who suffer from underlying illnesses. If you have any questions re: Lyme Disease or if you suspect you might have it, please feel free to leave me a comment or send me an email to info@windyjcumberbatch.org

Thanks for stopping by!

XO,

Windy