For the last 8 years…well really its been 19 years..I have been living with chronic illness. When I sit back and think about it, 19 years is almost half of my life. I’ll let you do the math lol! Whew…that’s a very long time to be living day in and day out being sick. My husband and I recently had a conversation where he made the observation that I he has never known me to be well. He has no idea what I was like before I got sick. That’s because I was sick from being bitten multiple times by a deer tick. but I had not yet been diagnosed. I was dealing with fibromyalgia pain way before the deer tick situation, but I had not been diagnosed yet. Wow, wow, wow! It’s been a long, hard road, but I am still here.

From time to time someone will come up to me and ask me how I’m doing and more importantly how in the world am I handling all of this. For me, the answer is quite simple. My faith in God. Period. Full Stop. In the words of my teenage daughter…No Cap! In all seriousness, if it were not for my faith, I truly don’t know where I would be or how I would be able to handle the rollercoaster that is my life. The multiple doctor visits and waking up each day not really knowing how I am going to feel. It takes a ton for me to show up everyday. For myself and for all of you who love me. I pray everyday, read several devotionals and sing. I love to sing around the house, it helps to lift my spirit. My favorite song to sing is a hymn “ Great Is Thy Faithfulness”! The lyrics are simple, yet powerful and seem to speak to exactly how I’m feeling deep in my soul. The truth is, God is faithful and has been my entire journey. Here are the lyrics to the chorus:

• Great is Thy faithfulness
  Great is Thy faithfulness
  Morning by morning new mercies I see
  All I have needed Thy hand hath provided
  Great is Thy faithfulness, Lord, unto me

So while the struggle is real…real hard…I choose to continue to lean on my faith, family & friends to help me continue to push through. There are many days where I don’t get out of bed, and it’s those days that I struggle the most. Anxiety & depression come knocking at my door. In those moments I must remember God’s promises to me. Even though I am really going through it, He is with me and will give me everything I need. He always shows up just when I need him the most. I am honestly ok with the struggle because I am more than a conqueror!

The struggle is real, but so is God!

XO, Windy

Living with a chronic illness can be very challenging. It can be especially taxing and a huge pull on your physical, mental and spiritual health. The most challenging part about living with a chronic illness is the fact that to many, You don’t “look” sick. I wish I had a dollar for every time someone said that to me. I’d be rich! Lol. I know people mean well, but having a chronic illness and living with a disability does not have to mean you’re in a wheelchair, using a walking aide, etc. Does it? Sometimes it might, but for others it may not. In my humble opinion, unfortunately, some people (not all) have in their mind that in order to be “sick” you must look like you just got hit by a mack truck and that’s not fair nor is it always the case. Each person is different and the way their specific illness shows up each day will be different.

So what is an Invisible Illness anyway? I’m glad you asked.

According to Wikipedia, ” Invisible disabilities, also known as hidden disabilities or non-visible disabilities, are disabilities that are not immediately apparent, are typically chronic illnesses and conditions that significantly impair normal activities of daily living. 

SOME EXAMPLES OF AN INVISIBLE ILLNESS:

• Fibromyalgia**
• Chronic Lyme Disease**
• Chronic Fatigue Syndrome*
• Hashimoto’s Disease
• Crohns Disease
• Lupus
• Rheumatoid Arthritis

(Those with an asterisk are the illnesses I have)

THE IMPACT

Although those of us who live with an invisible illness may not appear sick/ill on the outside, on the inside we are going through hell. Yes, I said hell! Pain so debilitating that you can’t get out of the bed or off of the sofa, fatigue that is so tiring and exhaustive that not even a good night’s sleep will help, and emotional stress which can sometimes lead to anxiety and depression. The emotional stress, such as sadness over how your life has changed since being diagnosed and anxiety over how your illness may gotten worse over time. In some cases, the symptoms can be so severe the person becomes disabled and unable to work. In the case where friends or family members think you’re lazy, this makes things even worse. Having a great support system is very important. I am so thankful for all the love and support I get from my family and amazing friends! Sadly, not everyone has this. I personally know of situations where someone with a chronic illness is getting divorced because their spouse thinks they are lazy and just doesn’t want work and help pay the bills, or have family members who make fun of them and speak negatively to and about them while; others have simply been left to fend for themselves without the support of family and friends. Neglected.

Unfortunately, there are those who live with an invisible chronic illness who are not believed when they say they are sick/ill because they don’t “look” the part. This can be very frustrating. Feeling like you have to validate your illness to others can be hard. Trying to convince others that you are indeed sick/ill, arguing with family members who think you’re just lazy can make you feel dismissed and judged, which leads to the person turning inward. It silences us. Silencing someone with chronic illness keeps us from sharing our journey which in turn keeps us from bringing about more awareness. That’s the last thing we want to do!

WHAT YOU CAN DO

Again, living with a chronic illness is difficult and we need your help. If you know someone who has a chronic illness they are most likely suffering in silence or not telling you how they really feel. Here are some practical things you can do to be a support in their lives:

• Believe Them! (So important)
• Check on them (We might not reach out)
• Pray for them
• Offer to pick up their RX
• Offer to bring them a meal
• Offer to take them to their next DR appointment
• Listen!
• Encouragement
• Stop by for a visit
• Become an advocate

Thank you so much for stopping by! If you know someone who lives with one or more chronic illness, reach out and see how you might be able to support them. I am 100% certain they will be so glad you did.

XO, Windy

As so many of you know, I have been living with Fibromyalgia for many, many years! This illness has really shown me what I am made of. It’s been hard, it’s been tough and some days I don’t know how I make it through. I wake up each day and brace myself for the flood of symptoms that my body experiences, ranging from:

• Intense pain from head to toe
• Fatigue
• Brain Fog
• Memory Loss
• Irritability
• Joint Pain
• Muscle Pain
• Vision Problems
• Trouble Sleeping
• Cognitive Issues
  • Hand Tremors
  • Imbalance
• Migraine Headaches
• Dizziness
• Restless Legs
• Swollen Feet and Hands
• Nausea
• Increased Heart Rate

These symptoms can take a huge toll on my mental health which shows up as anxiety and mild depression. I mean for anyone who lives with any kind of chronic illness, you get to a place where you’re just sick and tired of being sick and tired. I also struggle feeling like I am letting everyone down because I am always in pain and never feeling well. If that’s not enough, a few times each month, I have what’s known as a “Fibro Flare Up“. This means that my symptoms are more intense and even worse than normal which can be unbearable. This leaves me homebound and isolated until the symptoms ease up enough for me function a little. A flare up can last a few days to several weeks, with the most recent lasting over a month. As you can imagine, this really wears my body out. Always fighting to the point of exhaustion. I try to find relief wherever I can (Other than the RX):

• Massage
• Infrared Sauna
• Hot Baths
• Elevated Legs
• Heating Pads
• Naps (My favorite)
• Rest

As a result of Fibromyalgia, my life has changed a lot. The realization that there are certain things I can no longer do is saddening. The simplest of things wear me out; like walking from my bedroom to the kitchen to grab a snack or making up the bed. You would’ve thought I just ran around the track, so out of breath, lightheaded and in pain. My heart rate increased to the point that it feels like my heart will jump right out of my chest. Or the times I can’t remember where I am or how to navigate places I’ve gone to for years, or worse, the embarrassment of not being able to remember my own phone number. The humiliation of it all…

Over the years I’ve done a fair job of disguising my symptoms so people wouldn’t feel sorry for me or treat me differently but that is proving to be difficult to do with the increased intensity of my symptoms. I’ve had to take a step back and listen to what my body has been trying to tell me for so long. This time I am listening, no longer looking for any false glimpse of “feeling better” so I can go right back to doing the things my body is telling me I can’t do. So if you know me and don’t see me on social media and the like, not to worry I am just being obedient to my body and resting!!!

I will keep you posted on how things are going!

Until next time,

XO- Windy

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! 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

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.

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

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

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

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

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!

Until next time!

XO,

Windy

I hope this blog post inspires you to keep pushing! You got this! You’re tougher than you think!

As I reflect on this past year, I realize it’s been a year for lots of growth!  Growth in ways  I never could have imagined.  You see 2019 has been a challenge for me and my family as I have continued to battle Chronic Lyme Disease, Fibromyalgia and Chronic Fatigue Syndrome.  As a result, I have been unable work.  I spend a lot of time home alone while my husband is at work and the kids are at school.  It’s during these moments that I spend  time with the Lord, reading my bible, reading devotions and having my own worship service through song. 

It has been hard because during those times spent home alone, the enemy (Satan) invites himself in and tries to cause me to doubt God.  He does this by whispering lies to me when I am at my weakest point, which is most likely during an IV infusion or when I’m feeling really ill.  It’s during those moments he tells me that I will never be healed, that my husband will leave me because he didn’t sign up for all of this.  He has basically tried to get me to believe that because of my illness God has no use for me.  While I know this is not true, it can been hard to fight the enemy when you’re sick.  Some days I feel like the enemy is sitting in my room waiting for me to wake up each day so he can torture me.  It’s awful how he preys on the weak, those who really love God and are trying to live out the purpose He has for us.  Jeremiah 29:11 tells me that God has a plan for me and I believe that with all my heart.  I choose to stand in faith and will use this illness as a testimony of the goodness of God.

Sometimes people will ask me, “What if God doesn’t heal you?”  Well, I am already healed by what Jesus did on the cross for me over 2000 years ago. The bible tells me that “By His stripes, I am healed” (Isaiah 53:5).  Now for me, that means I will either be healed on this side of heaven or on the other side of heaven when I transition from this life.  One way or another I will be healed.  Don’t get me wrong, I am doing better every day, though I’m not 100%.  If I don’t see healing on this side of heaven, I am reminded in Daniel 3:18 “And if not, He is still good”!

This year I have grown deeper in my relationship with God and my faith remains strong.  My life goal is to help others who are struggling with chronic illness and to share the goodness of God.  My family started a foundation in my name as a way to meet this goal.  Please check out our website when you get a chance.  https://www.windyjcumberbatch.org/

Happy New Year!

WJC

Over the past several months I’ve been asked “so what do you do all day”?  That is such a loaded question but one I’ll try to answer here.  As you can probably imagine, I spend a lot of time alone.  My husband works four days a week and my kids are in school every day so that leaves 8-10 hours to do things like…think!  I think a lot about how my life used to be, things I used to do, places I used to go and I often wonder when my life will change for the better (and I know it will).

As a person living with chronic illness, I tend to have too much time on my hands.  I notice all the things wrong around the house, I notice how the neighbors linger with their pets in front of our house and I also have time for the all consuming pity party.  As a woman of faith, I work really hard to remind myself of God’s promises to me, that he has plans to prosper me and not to harm me.  With all that time alone, the enemy (Satan) will get in my head and make me feel like my world is coming to an end, that I am all alone is this fight for my health.  While I know this is a lie in my spirit, my flesh at times entertains these thoughts and I become depressed and anxious.  I start thinking  to myself how unfair it is that I am so sick.  Sometimes I cry, other times I scream and throw things (mostly clothes) out of anger and grief of my former life before this setback in my illness.  After some time has passed, the holy spirit reminds me what God’s word says and I snap out of it, but it’s not easy.  I am human and I get weak some times.  I try my best to keep my mind free from the lies of satan and focus on the truth that only comes from God.

During the week, I typically don’t get out of the house much, but my husband does try and get me out of the house from time to time.  He hates seeing me sit around doing nothing so he takes me to the pharmacy to pick up my prescriptions or will take me out on a quick date when I’m up to it.  The only thing I do for sure each week is go to church.  I can’t tell you how important that is for me.  The only way I will miss church is if I’m so sick I can’t gather up enough strength and will power to roll out of bed.  It does happen from time to time, but not often.  I try to save all my energy from the week and pour it all into Sunday.  You see, that’s a family day for me and once Sunday is over I am done for the rest of the week as it takes everything out of me to do that one thing.   Don’t get me wrong, I have some great friends who call and text me during the week to check on me and that means so much, but I am not at the point where I can go visit anyone or meet up anywhere for lunch or coffee.  I have not been able to drive since January 2018 due to my illness.  Cognition is so horrible that I forget where I’m going and have no sense of direction, I have a slow response so I would not be able to make quick decisions if needed, so that makes it hard to.  So Sunday it is!  I try to be as present as I can with my family.  School functions, football games and other major events but sometimes I just have to listen to my body and say No.  I used to push myself and just go go go, I can’t do that any longer.  It’s not healthy for me and will only delay my recovery and nobody wants that.  So I take things one day at a time and pray that God gives me what I need to make it through each day and He has never let me down.  He’s got me!

Until next time,

WJC

Over the past several months, I’ve had people ask me about chronic illness.  I think the reason the question is coming up more and more is because there has been such an increase in chronic illnesses over the last decade.  We’ve seen more and more celebrities come out about their struggle living with chronic illness which has been good from an awareness standpoint. For instance, Lady Gaga with Fibromyalgia, Alec Baldwin with Lyme Disease, Shania Twain with Lyme Disease and Selma Blair with MS to name a few.  I must admit, prior to becoming ill myself, I had no idea how many chronic illnesses there were nor did I realize how many people and families were impacted.  Over the years I’ve had time to do a lot of research and I am amazed at what I’ve learned so far.  Our country has a lot of people that are struggling in silence and need our support.

So what makes an illness “chronic” anyway?  Great question!  The CDC (Center for Disease Control) defines chronic illness (disease) this way: Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both.  Some suggest that an illness becomes chronic after 3 months of treatment and the illness is not in remission or cured. The CDC further suggests that 6 in 10 Americans live with at least 1 chronic illness, some with multiple.  Some examples of chronic illness include:

• Chronic Lyme Disease*
• Fibromyalgia*
• Chronic Fatigue Syndrome*
• HIV/AIDS
• Lupus
• MS
• Diabetes
• Heart Disease
• Arthritis
• Kidney Disease

With an estimated 133 million Americans to be diagnosed with a chronic illness by 2020, it is important ,now more than ever, for us to advocate for those who are impacted. Millions of Americans are struggling to pay for much needed prescriptions due to high drug costs, some having to chose between food and the medicine they so desperately need.  No one should ever have to choose between the two. My goal in life and the goal of my family is to help create awareness about chronic illness and advocate for those who cannot advocate for themselves.  Be the voice, provide support and resources to those who need it most.

XO,

WJC

*Denotes Chronic Illness Windy has been diagnosed with

Hi guys!  It’s been quite some time since my last post and it feels so good to connect with you again.  I had a relapse at the start of 2018 which caused me to get really sick.  I needed to take time to take care of myself and work with my doctors to try and get into remission.  While I’m not 100%,  in fact I’m still in treatment, it is important to me that I try to get pieces of my life back and this is part of that effort.  Just a heads up, my posts will not be as frequent as I would like for them to be due to my illness.  You see, I suffer from chronic fatigue, cognitive issues (memory loss and brain fog), pain and weakness in my hands that make it difficult for me to compose a post.  With that said, I may take several weeks to compose a single post or I may use a guest blogger who will be able to share his/her thoughts on chronic illness and offer a different perspective.  Either way we will keep you informed and bring you along the journey.

Over the last year a lot has happened.  In addition to the Chronic Lyme Disease, I was diagnosed with Fibromyalgia, Chronic Fatigue and allergies to gluten and lactose.  I must admit that when I learned about the gluten allergy I was quite devastated.  You see, I consider myself (and my husband) to be a self-proclaimed “foodie”.  We love to find new places to eat and would plan date night around the newest restaurant to try and with the gluten intolerance, all of that has come to a screeching halt.  Instead of trying new fabulous foods, you can now find me reading labels, studying menus online and questioning restaurant staff to determine what I can and cannot eat.  It takes the fun out of eating when you have to be super careful about every single ingredient in a particular dish or if you have to question restaurant management about the kitchen process for keeping gluten free food from getting cross-contaminated by coming in contact with regular food.  As a result, we eat at home more, mostly due to the fact that I don’t have the energy to go anywhere, but even if I felt ok I would rather eat at home where I am in control of what I eat and likely not become ill.  Not as fun, but much safer for me this way.  More to come on my gluten journey in a future post.

With the Fibromyalgia and Chronic Fatigue I am always extremely tired and always in some sort of pain.  While I do my best to get as much rest as I can, at night it is hard for me to get to sleep.  My brain doesn’t seem to shut down enough to allow me to fall asleep so I have bouts of insomnia which leave me up watching my husband sleep wishing I could join him.  Of course this cycle leaves me more and more exhausted the next day and I eventually pass out when my body has decided it can no longer keep going.  I will go into more detail about Fibromyalgia and Chronic Fatigue to help those who might be suffering with either of those illnesses.

Well, that’s it for this post!  Again, it’s so good to connect with you and I look forward to your comments and/or suggestions for future posts.

Until next time,XO

Windy

Throughout my journey with Lyme Disease, I have often wondered why me?  There are millions of people in this world, how and why did I get chosen to go through this?  I have at times wondered what my life would be like if I didn’t have to deal with this at all.  When I allow myself to go down that path, it’s easy to feel sorry for myself and become resentful of the hand I’ve been dealt.

After spending some time down “Why Me Blvd”, I come to my senses and hear a small whisper, “why not you?  “If anyone can handle this, it’s you, Windy”.  I’m reminded of that verse in the Bible that says, “I can do all things through Christ who gives me strength”.  You see, my faith tells me that God will never give me more than what He has equipped me to handle.  While it might be hard, and at times, really sucks (just being honest), I have what it takes to get to the other side.  You see on the other side of this “test” is a “testimony” and I hold firm to that thought when I’m having a bad day.  I choose to believe that God is using me to help others and that brings me so much joy and comfort.  It’s not about me, it’s about Him!  I could very easily become angry at God and some might feel I have every right to, however, my mother used to tell me that “to whom much is given, much is expected”.   I realize that in spite of my illness, I am truly blessed and have a lot to offer.  I plan to do all the good I can for as many people as I can.  If I can help at least one person who is struggling with illness (or in any other way) then I’ve done my job.

I may never really know why I am dealing with Lyme and that’s ok with me.  I’m a firm believer that everything happens for a reason and as long as I don’t allow myself to wallow in self-pity and stay focused on the bigger picture, God will see me through.

Still fighting,

Windy

If you know anything about Lyme Disease or Chronic Lyme Disease, you know there are various thoughts and opinions on how it should be treated.  When I think about my own treatment, boy I wish the doctor that treated me over 10 years ago would have properly diagnosed me, then maybe just maybe I would not be going through this right now.

You see, many doctors believe that when a person is bitten by a deer tick that is infected with Borrelia Burgdorferi, the bacteria that causes Lyme Disease if they are treated immediately with antibiotics for 28-30 days they should be ok and for the most part completely recover.  While in some cases this is true, the fact remains that more than 50% of those infected with Lyme Disease are misdiagnosed mostly due to the fact that the current method used to test for Lyme is outdated, therefore Lyme goes “missed” or undetected during routine tests.  As a result, a “clinical” diagnosis is often required which is typically based on a person’s symptoms, medical records and exposure to infected ticks.  I was diagnosed via a blood test for Lyme which by the way was off the chart positive!  The scariest part about Lyme Disease is that it mirrors or looks like so many other illnesses such as ALS, Parkinson’s Disease, MS, Chronic Fatigue Syndrome, and Rheumatoid Arthritis to name a few.

Once you’re properly diagnosed, your LLD (Lyme Literate Doctor) will work with you to develop the best treatment plan for you.  There are so many options, each person’s plan is unique to him/her based on the symptoms they are experiencing which can change daily as the Lyme bacteria travels to different parts of the body at will.

So let’s talk about my treatment plan.  Currently, I take a combination of antibiotics along with many other medications to treat the various symptoms I deal with on any given day.  Below is a snapshot of what I take:

Cipro, Bactrim, Minocycline, Cedex, Lyrica (Fibromyalgia), Lunesta (Sleep Aid), Armour Thyroid (helps regulate my thyroid), Diflucan (antifungal), B12 Shots (for energy), Flagyl, Cymbalta, multi vitamin, Zinc, Serrapeptase, Magnesium, Gabapentin, and Metronidazole.  I’m sure I’m missing a few, but I think you get the picture-I take a ton of medicine.  Some I take twice per day and a few only at night. I mentioned in an earlier post that I see my LLD every 3 months, that’s usually the time he will change up my medication so the Lyme in my body doesn’t become immune.

In addition to the medication, I try to detox (in at hot sauna) at a local spa at least once per month and get a massage to help with the muscle pain.  I thank God every day for medical insurance because without it the RX bill would be close to $2000 each month!  That’s why I’m so committed to lending my voice to help find a cure, not only for me but for anyone else suffering.  It’s costly in the area of finances and the body with all the medicine we are consuming each day.

We will find a cure!

XO,

Windy

I’m sure you’ve heard the phrase before!  My mother used to say it all the time.  It’s the perfect phrase to explain how I feel most days.  On one hand, I am thankful that God has blessed me to see another day, on the other hand, I’m immediately greeted with a number of symptoms that can change just as quickly as the day.

You see, with Chronic Lyme Disease, every day is a new challenge.  You’re always beyond tired. At least I am. That’s one of the major symptoms I have to fight hard against each day. No matter how much sleep I get, I always feel as though I’ve been awake for several days straight and that pretty much sucks!  Sorry, but I’m just being honest.  It can be quite frustrating to know that you have zero control over how you feel.  Yes, medication helps, (God knows I take lots of it) but for the most part, the medication is working on other symptoms, however, the exhaustion still lingers.  On any given morning not only am I extremely tired, my feet are swollen, I have a major headache and sensitive to sound and light, and that’s just for starters.  In a single month, I can navigate between over 100 different symptoms and no two days are the same.  Sounds like a party right?

I’ve learned over time that the medication I take will make me sick, but that’s how I know it’s working and doing its job to fight the Lyme and the co-infections that live in my body. So basically, it’s par for the course.  When I notice the medication is no longer making me sick, that’s a true indicator that the bacteria has become immune and that new medication needs to be explored.  My LLD will typically change up my meds every 3 months just so the bacteria doesn’t get too comfortable and learn how to “hide” from the medicine and continue to do harm.  The Lyme bacteria is pretty smart!

I’m still learning to deal with feeling both sick and tired. I’m hanging in there and confident that one day soon this too shall pass.

XO,

WC

It’s a few days after the Thanksgiving holiday and I have a lot to be thankful for!  Two years into my treatment plan and I’m seeing some progress.  During my last visit to my LLD, I received even more prescriptions, which left me a little down.  I was hoping that this visit, I would be allowed to decrease the amount of medication that I consume each day.  Even though that didn’t happen,  I realize that it could be a lot worse.  I could still be so sick that I can’t get out of bed or do anything for myself.  That’s progress, right?

On days where I feel myself feeling defeated or when I’m struggling to do even the simplest of things, I’m reminded that this process is a marathon, not a sprint.  I tend to want to see things done quickly so I can get on to the next thing, however, God has something else in store for me  during this season in my life.  I am learning to be patient, which has often been something that I’ve struggled with.   As I sit here typing this post, I’m feeling quite sluggish, I have a low-grade migraine and I have ringing in my ears.  Most people would not be able to function under these circumstances, but I have gotten used to it and God has given me grace to endure for he knows just how much I can bear. He gives me just what I need to run this race, and for that, I’m grateful.  My mother used to tell me all the time, “to whom much is given, much is required”.  I know that God has blessed me with much and he is using this illness to provide me with a platform to give him the glory and I intend to do just that!

‘Til next time,

WC

Hello everyone!

Wow, it’s been a while since I’ve written anything.  Many things have happened in the two years since I’ve posted to my blog.  Where do I start?

Since, my last post, I have continued to see the same amazing LLD, Dr. Jonathan Forrester in Pineville, Louisiana (near Alexandria).  My treatment plan has changed a bit to focus on the ever-changing symptoms that I encounter.  I have also been diagnosed with two co-infections of Chronic Lyme Disease; Bartonella and Babesia.  Short-term memory loss has been a huge issue for me.  At times, I have trouble remembering what I did or said the previous day, which can be quite scary.  I take lots of notes to help me stay on track and rely heavily on my calendar to make sure I don’t miss any appointments for myself or events for any of my children.

In addition to the short-term memory loss, I continue to struggle with extreme exhaustion.  With the Lyme Disease, I suffer from bouts of insomnia which makes it hard on me during the day.  Even on the days where I feel like I’ve gotten a good amount of sleep, I’m still quite tired as a result of the disease.  Anxiety has also started to rear it’s ugly head in certain situations.  I start to become anxious over the smallest of things, that wouldn’t matter to most people.  The one thing that has really helped me get through it all is my faith in God.  I’ve always read my bible, but I find myself reading it more and more looking for hope in God’s promises to us.  I’ve also begun following Christian leaders, Joel and Victoria Osteen,  Joyce Meyer and of course my Pastors, Eric and Andrea Moore of Summit Worship Center in the Austin, TX area- who offer words of inspiration and remind me that God is in control.  My prayer life has also increased over the past few months and I continue to push through and navigate my life that now includes daily medication (I’m up to over 15 pills per day) and countless symptoms that come and go and seem to have a mind of their own.

My doctor told me during a recent visit that he would like me to add low-impact exercise to my treatment plan.  I have very little strength in my hands and my muscles are weak.  In fact, my hands are so weak, I have a hard time opening a small bag of potato chips, which would not have been an issue for me years ago.  I have little to zero muscle tone in my arms and legs too.  I’ve purchased a gym membership, though I’ve not gone much.  I get so tired and weak after a short time on the treadmill or the elliptical machine.

I’m staying positive and now only go see my LLD once per quarter instead of once per month.  This is a good thing since he recently announced to his Lyme patients that he would no longer be able to accept insurance.  My faith is strong and I continue to stay positive.  God is faithful.  He who began a work in me is faithful to complete it!

Til next time, be blessed!

Windy

Well I have been on my current treatment plan for a few days now and things seem to be going ok.  At first it seems like nothing is happening at all, but that would change a few short days later.  By day 4 I began to have what I now know as Herx Reaction.  This is a term that basically means that you feel worse while you are getting better.  All of my symptoms seemed to getting worse and new one surfaced.  I was super exhausted, my legs felt like they were on fire, I had the worst migraines ever and I could not focus at all.  I honestly did not expect this, I mean isn’t medicine supposed to make me feel better?  What I later learned is that this is part of the process of getting better.  As the antibiotics are killing the Lyme in my body, the dead bacteria is creating toxins and causing inflammation.  At times I had a hard time breathing-“air hunger” and that can be quite frightening.  The Herx Reaction occurs in cycles, usually about every 4 weeks.  The other 3 weeks I am still feeling ill, just not as bad as week 4 which at times can seem unbearable.  It is during week this week that I have the most pain, the worst brain fog and tremors, the hardest time walking and talking and my voice comes and goes.  I also have problems with eye inflammation, involuntary muscle and limb movement.

Each day I wake up not knowing what symptoms I will be facing.  This makes if very difficult to plan out my activities ahead of time.  My sweet family just goes along with the flow of things and doesn’t really put pressure on me to do anything.  Most days I have just a couple of hours that I have energy to do things like pick up around the house or cook, so I try to save all my energy for that “one” thing after which I would crash.

The nights seem to be the worst for me, it’s around this time that I have developed insomnia.  I am up at all hours of the night, not feeling well but not being able to fall asleep.  My doctor prescribed Ambien for me, but I have heard so many horror stories that I refuse to take it.  I pray to God to help me to pass out so I can get just a little rest, if only for a few hours.  There are some nights that I am up until about 3am and I wake up at 7am and keep on going until the next day.  I try not to complain as I remember, this too shall pass!

Until next time!

Thank you for reading,

WJC