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

Lyme & COVID-19

2020 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

In Sickness & In Health

A few months ago, I changed things up a bit and shared my daughter Chanel’s thoughts on living with a parent who suffers from a chronic illness.  Now I want to allow my husband Carl the opportunity to share his experience.  Carl has stuck by me and has been my rock through this journey and I think it might be helpful for others to hear things from his perspective.  I’m sure when we were married, neither one of us could have ever imagined walking through this journey called Lyme Disease! #insicknessandinhealth

So here’s Carl in his own words, I pray you find this helpful.

Q: Carl, what has been your experience living with someone who has a chronic illness?

A: My experience has been challenging and overwhelming, at times. This may sound crazy, but I’m so glad God chose me for the task. In my eyes, it has made me a better person and definitely allowed me to have a better relationship with Him.

Q: What has been the most challenging?

A: I say this in the most kind and forward way I know how to. Please hear my heart and not read this answer as me complaining. One of the most challenging things I tend to navigate through is not knowing who or what I’m waking up or coming home to. Some days I may come home to a wife that is full of energy and ready to conquer the world and other days is one where she needs to be nursed/taken care of, because she is having an episode of excruciating pain that will not allow her to move.

Q: What would you say to other spouses or family members living with someone who has a chronic illness to encourage them?

A: Not just learn, but become as close as possible to an expert about the illness (the more you learn, the more you will be able to understand and help your spouse/family/partner to navigate through it). Join some type of support group, if not a group then a person that you are able to vent to (or talk you off the ledge). Finally don’t give up! For every reason you can think about leaving, I can give you ten for staying.

Q: How do you stay positive?

A:First and foremost  GOD. Staying in the word of God is key to overcome all obstacles life presents. I have lived long enough to know today is Windy that is ill, but tomorrow that could be me. I try to live everyday (to be transparent some days I fail) loving and caring for Windy, the way I would like to be cared for, if it was me suffering from an illness. I know there will be times that I must wear a shield not just to protect and guard my feelings, but also to protect others from my flesh. 

Q: Is there anything else you want others to know?

A: This is not a sprint, it’s a marathon. Be mindful that depending on the illness it might take years to overcome it (if it has a cure). Extend lots of grace and empathy to your spouse/partner. Pace yourself and don’t walk this out alone!

Thank you for stopping by!  Please be sure to subscribe by adding your email address in the “Follow” section and be the first to know when I’ve added a new post. (I promise not to spam you).  Please follow us on social media by clicking the link in the right column of this post.

IMG-3720

My favorite picture of us!

Thanks for your support!

XO, Windy

It Might Be Fibromyalgia!

According to the NFA (National Fibromyalgia Association), Fibromyalgia affects an estimated 10 million US adults, and about 3-6% of the world population. 75-90% of those affected are women.  The cause of Fibromyalgia is not currently known.

So what the heck is Fibromyalgia anyway?  Such a great question!  The CDC explains it this way, “Fibromyalgia is a condition that causes pain all over the body, sleep problems, fatigue and emotional distress.”  Some of the symptoms include: (Can vary from person to person)

  • Pain and stiffness all over the body
  • Fatigue
  • Depression and/or anxiety
  • Sleep issues
  • Cognitive issues (Brain fog, problems thinking)
  • Memory loss
  • Headaches, including migraines
  • Inflamed or burning sensation
  • Chest pain*
  • Tingling or numbness in hands and feet
  • Digestive issues (IBS)

I want to say something about the chest pain listed above.  With Fibromyalgia you may experience pain in your chest that is very scary because it can mimic a heart attack.  I experienced this myself and had to wear a heart monitor for a while to make sure it wasn’t something more serious going on with my heart.  (See picture below)

In addition to Lyme Disease, I also have been diagnosed with Fibromyalgia.  My Lyme Specialist has been trying to determine if I had Fibromyalgia prior to getting Lyme Disease.  The pain is constant, and I’ve just learned to live with it.  Some days are better than others.  Many people feel like Fibromyalgia is the “catch all” diagnosis because there isn’t currently a single test to diagnose.  Thus the title of this post- “It Might Be Fibromyalgia”!  It can be hard to diagnose (just like Lyme Disease) because the symptoms can mimic other chronic conditions, such as MS.  For this reason, there’s the attitude that everyone is being diagnosed with Fibromyalgia because the doctor is having a hard time diagnosing a patient’s symptoms.  For instance, according to WebMD, a person with Lyme Disease, arthritis or sleep apnea-all conditions that can mimic Fibromyalgia-and also have Fibromyalgia as a secondary condition.  Currently, I would fall into this category, unless they can prove out that I did in fact have Fibromyalgia prior to contracting Lyme.  For me, Fibromyalgia mostly shows up as widespread body pain that does not go away (although I can identify with each of the symptoms listed above).  It’s managed by medication, but it’s something I live with daily.  It also shows up as cognitive issues and migraine headaches.  I get quite a few migraines each month, but I continue to push through! #imstrongerthanithought!

There’s a great chance you may know someone who is living with Fibromyalgia and like Lyme Disease, it can be hard to diagnose and there is no known cure.  If you know someone who thinks they may have Fibromyalgia, please let me know, I can point them in the right direction and share some resources.

Thanks so much for stopping by and be sure to pop your email address into the “Follow” section to subscribe to my blog…you’ll be the first to know when there’s a new post.

Below is a picture of me wearing the heart monitor.  I had to record each time my heart skipped a beat and all palpitations.  So thankful my heart is ok!

Until next time!

XO, Windy

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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!

My Mom Is Sick, Now What?

To change things up a bit, I thought I would ask one of my kids to share their thoughts and experience having a parent who lives with a chronic illness.  So, I took a chance and asked my daughter Chanel if she would be willing to answer a few questions and she said “Yes” immediately.

Below are Chanel’s unedited responses to my questions:

Q: What is your relationship to Windy?

A: I am Windy’s youngest daughter.  I’m 11 years old.

Q: When did you first realize that your mom was sick?

A: Well, I don’t know the exact date, but she’s pretty much been sick my whole life!

Q: How has Lyme Disease affected your life?

A: My life hasn’t changed drastically, but it has changed because she had to do infusions and later on I had to adapt to it and I started helping her. I was her “Nurse” and it was then my job to help her.  Her Lyme disease has also stopped her ability to do some things and we all need to accept that as a family. It wasn’t her fault she got bit by a tick and that’s ok. But let’s fast forward to current day, she got her picc line removed and now she is feeling a little better, but you still have to be careful with her.  She is a little sluggish here and there but she is still the same woman I love.

Q: What would you say to someone who has a sick parent at home?

A: Make sure to take care of your parent and when they need something make sure to be there for them just in case something bad is happening.

Q: Is there anything else you’d like others to know?

A: Don’t let anything stop you if you have a goal.  Go for it.  If you have a dream, go for it! Don’t let anything get in your way of doing what you want.

I hope this was helpful, to hear Chanel’s perspective of living with me!  She’s been such a great helper and a constant inspiration for me.  Here’s one of my favorite selfies taken after she helped me with an infusion. (Nurse Chanel)  Love her so much!

Windy and Coco after Infusion

Until next time!

XO,

Windy