Tag: Chronic Lyme Disease

My Personal Journey with Lupus & Chronic Lyme Disease

On By Windy J Cumberbatch, CPCIn UncategorizedLeave a comment


Life has a way of throwing unexpected challenges our way, and for some, those challenges come in the form of chronic illnesses. In my case, it’s a double whammy – living with both Lupus and Chronic Lyme Disease. These two conditions have reshaped my life in ways I never imagined, taking me on a journey filled with ups and downs, resilience, and self-discovery.

The Unseen Battle

Living with Lupus and Chronic Lyme is like fighting an unseen battle every day. On the surface, I may appear healthy, but beneath the facade lies a constant struggle with fatigue, pain, and the uncertainty of what each day might bring. Lupus, an autoimmune disease, and Chronic Lyme, a tick-borne illness, have teamed up to create a unique set of challenges that I confront with unwavering determination.

The Rollercoaster of Symptoms

One of the most challenging aspects of living with these conditions is the unpredictable nature of their symptoms. Some days, I wake up feeling relatively normal, ready to tackle the world. However, by mid morning I’m wiped out. Other days, I’m faced with debilitating fatigue and joint pain that make even the simplest tasks feel like insurmountable obstacles. It’s a rollercoaster ride of symptoms that requires adaptability and patience, both from myself and those around me.

The Importance of Support

Navigating the complexities of Lupus and Chronic Lyme is not a solo journey. Having a strong support system is crucial. Friends and family who understand the nuances of these conditions provide a pillar of strength during the toughest times. Their empathy and willingness to learn about the challenges I face make all the difference. It’s a reminder that I am not alone in this battle, and that in itself is a source of comfort.

Adapting to a New Normal

Living with chronic illnesses has forced me to redefine what “normal” means. I’ve had to adapt my lifestyle, learn to prioritize self-care, and find joy in the little victories. It’s about understanding my limitations without letting them define me. Some days, “normal” might mean washing a load of clothes, while on others, it’s celebrating the ability to get out of bed and face the day.

The Power of Self-Care

Self-care has become my lifeline. Whether it’s spending the morning at the spa, indulging in hobbies that bring me joy, or simply taking the time to rest, self-care is not a luxury but a necessity. It’s about listening to my body, honoring its needs, and finding moments of peace amidst the chaos. The journey with Lupus and Chronic Lyme has taught me that self-care is not selfish; it’s survival.

Finding Purpose in the Pain

Amidst the challenges, there is a silver lining – a sense of purpose that has emerged from the pain. Living with Lupus and Chronic Lyme has ignited a passion for advocacy and awareness. I’ve become an advocate for myself and others facing similar battles. By sharing my story, I hope to break down the stigma surrounding chronic illnesses and inspire a greater understanding of the daily struggles faced by millions.

Living with Lupus and Chronic Lyme is a journey filled with twists and turns, but it’s also a journey of resilience, growth, and self-discovery. Each day brings new challenges, but with a supportive network, a commitment to self-care, and a sense of purpose, it’s possible to navigate the complexities of these conditions and find moments of beauty amidst the struggle. In sharing my story, I hope to shed light on the very real experience of living with chronic illnesses, fostering empathy and understanding in a world that often underestimates the strength it takes to face the unseen battles within.

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic, and Spotify! 

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

Daniel 3:18 “And if not, He is still good! “

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Where Did The Time Go?

On By Windy J Cumberbatch, CPCIn Uncategorized4 Comments

Over the past few months I’ve really been spending a lot of time reflecting. Thinking about my life, where I’ve been and how far I still have to go. A lot of things have changed. Specifically, I’ve noticed a change in my mental health. I’ve begun to experience some mild depression that ebbs and flows throughout the day. In the past I would have felt a feeling that would cause me to feel down or sad and I would not question it knowing that eventually the thought or feeling would go away. However, lately I’ve noticed that the feelings some times lingers a little longer than usual. On those days I tend to spend a lot of time in bed or on the couch talking to God, crying and talking to God some more. Mostly I talk to God about my illness, I wonder “why me” at times, and I wonder what the future might hold for me.

I’ve been on this chronic illness journey for 20 years now. Where did the time go? I was chatting with my husband a few weeks ago and he mentioned that he has never known a healthy version of me. That’s sad when you hear that said out loud. It has for sure been a whirlwind of a journey. I’ve had a revolving door of doctors on my team, countless medication prescriptions (some changed just days after filling), several MRI’s and CT Scans, hundreds of trips to the lab for blood work and numerous road trips for the doctors I see who are out of town, with the furthest being in Louisiana. Whew…that’s a lot! Through it ALL I must admit that I have been blessed and God has certainly shown me and my family favor.

The sadness I feel is mostly due to feeling left out of what I see others doing. I scroll through social media and see family and friends doing “fun” things, taking trips, etc and if I’m honest, I feel left out. The enemy gets in my head and tells me that family and friends don’t include me because “I’m the sick one and if they include you, you will slow them down”…that hurts to consider though deep down I know my family/friends don’t think that way when it comes to me-though it doesn’t stop the enemy from trying to deposit that into my spirit. I know that it’s a lie but I must admit I sometimes find myself wondering if there’s any truth to it. Those thoughts are what keep me longing for the days that I was “well enough” to do whatever I wanted to do and go wherever I wanted to go without hesitation. Where are those days? Where did the time go? I know that God has a plan for my illness journey and that He is with me always…even on the days when I’m feeling sad and/or left out. Once I get past the pity party that I often throw for myself I am reminded of the love God has for me and how this is just a season intended to help me grow in my faith.

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! 

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

PS: If you or a loved one is suffering from anxiety or depression please reach out for help. You can talk to a trusted family member, or friend or seek support from a professional that can help you. Please know that you are not alone.

Here is a resource you can reach out to if needed: Family Care Center or Head To Heart Restoration Counseling

Daniel 3:18 “And if not, He is still good! “

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Some Days I Feel Like Giving Up | I Won’t

On By Windy J Cumberbatch, CPCIn Uncategorized7 Comments

This is a post that I debated writing for quite some time. My goal with this blog and podcast (Windy’s Journey), is to be fully and completely transparent in hopes that my journey will Empower | Encourage | Inspire someone else who might be living with chronic illness. That being said, sometimes it’s really hard putting yourself out there for fear of judgement or misunderstanding. At times the fear paralyzes me and I don’t post or share some things that I know would be helpful for someone else. I belong to several groups on social media where I get to hear about other people’s journey living with a variety of chronic illnesses. Some of the stories I heard are gut-wrenching and quite frightening. Hearing such stories can have a toll on me because I care so deeply about people who are sick. It can be depressing at times to live everyday in pain, not feeling well and longing for the version of yourself that no longer exists.

Some days I feel like giving it all up…the blog, the podcast and caring for others who are dealing with the same things I’m dealing with. I know the subject of chronic illness isn’t a “sexy” topic and not a lot of people want to sign up to hear me “complain” about ALL the things I have going on in my life. I get it, but for some reason I just can’t seem to let it go. I feel as though my story will reach the ONE person who needs to hear my story and me inspired to keep fighting. But like I said, some days I just feel like it’s a waste of my time. While I know that’s not true, it’s hard to keep pushing and to keep fighting even though I know it’s what I am called to do. I know there are millions of people living with invisible illnesses who need a word of encouragement to know they are not alone. It’s easy for me to get caught up in the number of likes I get (or not get) on my social media posts or the number of people who are following my blog and/or podcast. I have to stop worrying about that…I have a great friend who recently told me not everyone who sees my posts on social media will always “Like” the post or make a comment on my blog posts but my message is inspiring them and that I need to get out of my head and keep sharing my story! Such great advice…right? Even if only person is helped by hearing my journey with chronic illness, that is enough.

I will continue to write, post and record podcast episodes when I am feeling up to it. It does require a lot of energy, which oftentimes I don’t have, but when I can it’s so worth it.

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify!  We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

Daniel 3:18 “And if not, He is still good! “

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A Day In The Life Of Someone With Chronic Illness | Part 2 | Afternoons

On By Windy J Cumberbatch, CPCIn UncategorizedLeave a comment

I hope my last post gave some clear insight to what my mornings typically look like. It’s a struggle to get my day started each day as I slowly get moving and assess how my body feels. So, that being said, let’s talk about my afternoons shall we?

AFTERTOON

Most days my aftertoons start with a nap. The morning takes so much energy that it leaves me completely worn out. I love napping with all of the blinds closed and the room slightly cooler than normal so I can snuggle with my favorite blanket and comfy pillow. Just before falling asleep I let my husband know that I’m going down for a nap so that he doesn’t call or text me so I can sleep. This is important because at times it’s difficult for me to fall asleep no matter how exhausted I am. I try hard to give myself every opportunity to rest…well. My naps can last anywhere from 30 minutes to 3 hours, it just depends on the day. My favorite day for naps is Sunday! Everyone in my family knows that Sundays after church I will be down for the count for no less than 3-4 hours. The best nap ever….does anyone else love a Sunday afternoon nap? #dontwakemeimsleeping

After I wake up from my nap, it’s time to for my afternoon RX doses. That can mean about 4 additional pills. At this time I may take a look around the house to see if there’s anything pressing that needs to be picked up or cleaned, I will also assess how I’m feeling to see if I’m physically able to complete anything additional. Most likely I won’t have the needed strength to do anything more which means I get to crawl back into bed and watch some TV (or let the TV watch me-whichever comes first). If I don’t sleep I may call or text a few friends to see how they are doing and let them know I’m thinking of them. Catching up with my sisters is really important to me…I am truly blessed! I love you ladies so much and I am so thankful that I get to do life with you.

During the afternoon my husband is often out working. He started his own business this year and is doing such a great job of networking and generating new business and gaining new clients. This means that I am home alone most afternoons unless my daughter is home. She has been keeping busy with basketball. With the two of them being out of the house that gives me time to spend reflecting, ready my bible and just getting quiet. I love being by myself. I will turn the TV off and lay in bed and just be. This has proven to be great for my overall mental health. My peace is important to me and do whatever I can to remove anything that brings negativity or stress to my life. I have no time or energy for things that are not drawing me closer to God, not adding value to my life, not putting a smile on my face, not getting me closer to my purpose and not benefiting me in any way. As my son would say…”You can miss me with all of that”! As someone with chronic illness, I’ve had to learn to set healthy boundaries in order for me to have the best health outcome…that has been a game changer for me. Not being mean, but I must prioritize my well being above all else. So when I’m alone at thome I am able to hear from God and put things into perspective and be at peace.

As the day draws closer to late afternoon/early evening I prepare from my husband and daughter to come home after being busy most of the day. This time of day is my favorite as I anticipate hearing all about their day. I’m thankful for my afternoons as they are typically filled with a few naps,catching up with family and friends and talking with God.

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! 

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good!  Daniel 3:18

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A Day In The Life Of Someone With Chronic Illness | Part 1

On By Windy J Cumberbatch, CPCIn Uncategorized2 Comments

I don’t even know where to begin. The title alone intimidates me. Mainly because I’m wondering how in the world could I ever capture a day in the life of me? I may need to come at this in multiple posts I suppose, I mean this post could get quite lengthy and who has time for that? Let see how it goes and if I need to break this up over several posts I will. Let’s get started with what my mornings look like.

MORNINGS

Every morning I wake up with so much gratitude in my heart to be allowed to see a new day. I thank God for watching over me and ask for grace to make it through the day. For the most part, once I wake up I stay in bed for at least an hour to fully wake up and to get a sense of how I’m feeling that day. This can and often does look different for me every single day. I mean, I can wake up on Monday and be in pain from head to toe, Tuesday in a lot of pain but dealing with lots of brain fog, Wednesday lots of pain and vision problems (unable to see clearly for the first hour or longer), Thursday a ton of pain along with a ton of inflammation and swelling, Friday a ton of pain with a very raspy voice, Saturday a ton of pain and stiff joints, and Sunday a ton of pain with dizziness and balance issues making it difficult for me to walk. That’s just an example of some of the symptoms I deal with. Any day can also include: (List is not all inclusive)

  • Widespread pain
  • Hand tremors
  • Memory loss
  • Brain fog
  • Balance issues
  • Dizziness
  • Laryngitis
  • Conjunctivitis
  • Swollen hands, face & feet
  • Sole pain
  • Extreme fatigue
  • Anxiety
  • Depression
  • Vision problems
  • Poor apetitie
  • Rapid heartbeat (POTS)
  • Congestion
  • Migraine headache (15-20 per month)
  • Rash on my face (Mold toxicity)
  • Stiff joints and back
  • Cognitive issues (trouble finding words)
  • Rheumatoid Arthritis

It truly depends on the day…I can wake up feeling one way and by the afternoon I could feel completely different. If I’m honest, it can be quite frustrating going on this rollercoaster of symptoms every day. If I wasn’t the one going through this I wouldn’t believe it myself. It’s hard on the emotions and equally hard on my spirit. My emotions run from high to low in a matter of seconds. It’s a lot to handle even for the strongest person. When I finally get enough strength to get out of bed I stand up only to be greeted by intense pain in the soles of my feet which makes it difficult for me to walk. I also notice the stiffness in my joints and back that is so intense it can bring me to tears. I often have to hold onto the bed for the first few steps of the day. Such a humbling experience.

After stumbling to take my first steps of the day I eventually make it to the bathroom to wash my face and brush my teeth. Due to the Fibromyalgia, I face will appear swollen and puffy and my gums sensitive and sore. Normal brushing of my teeth can be so painful at times. While brushing my teeth I will notice the tremor in my right hand. This can add to an already difficult situation, but I take my time and eventually get it done. Mission accomplished! It’s at this time that I am usually worn out and feel like I need to lay back down, but first I need to take my morning meds which consists of about 8-10 pills and detox drops. It’s not easy for me to get all the medicine down, I sometimes feel nauseous while trying to get them all down. A few of them have a funny taste that it quite unpleasant. Eventually I do get them all down and grab a cup of coffee and get into my morning prayer and devotion. Once that is complete I take a look at what needs to get done around the house and make a plan for which tasks I will try and tackle. This usually looks like one room per day in small segments. It may take me a little while to pick up around the living room as I tend to get lightheaded, out of breath and tired so I have to pace myself and take as many breaks as I need to until it gets done. I have to extend grace to myself and realize that I can’t rush through things, doing so will lead to a Fibromyalgia flare up and nobody wants that. While taking a quick break I try to stay hydrated, though I must admit I don’t like water so it’s something that I have to force myself to do because I know it’s good for me. I can often be found lying on my couch or in my bed resting until about early afternoon…

Not everything on my morning to do list gets done but I have to be ok with that. At times I get upset at things that used to come easy for me that now take an hour or longer to do because of my chronic illness. It’s a constant battle between what I want to do and what I can do but somehow I make it through the morning one baby step at a time.

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! 

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good!  Daniel 3:18

Follow me on social media:

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A Chronic Illness | Not To Do List

On By Windy J Cumberbatch, CPCIn Uncategorized1 Comment

For someone living with chronic illness it’s important for us to be thoughtful of the things we do everyday so we don’t over exert ourselves. That means being mindful of the things we CAN do and the things we CAN’T do. This can be hard for someone who is used to being independent, like me, but in order to practice self care we need to pay attention to our bodies and let it take the lead on what we can do safely and with the assistance of others if needed.

Windy’s Not To Do List

  • Do not say “Yes” to things your body is telling you to say “No” to
  • Do not blame yourself for being unable to do certain things. It’s not your fault!
  • Do not speak negatively about yourself (You are not your illness)
  • Do not pretend to be ok when you’re not ok (It’s ok to not be ok)
  • Do not isolate yourself (We all need community)
  • Do not overthink things (That can lead to unnecessary stress)
  • Do not ignore your symptoms (Listening to your body is very important)

Having a chronic illness can be hard at times, I mean most days for me it’s very hard as I don’t feel like getting out of bed. For the most part having a chronic illness means that we will need to make some adjustments in our daily routines as well as depending on others to help from time to time. Listening to our bodies, saying no to the things you need to say no to and giving yourself some grace can make all the difference.

If you are someone who lives with chronic illness, what are things you’ve learned to say “No” to? How did that make you feel? How did those around you adjust? I’d love to hear from you. Please feel free to make a comment below or shoot me an email at info@windysjourney.com.

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! 

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good!  Daniel 3:18

Follow me on social media:

IG: @windysjourney

FB: @windysjourney

T: @windysjourney

Chronic Illness & My Love Of Fashion

On By Windy J Cumberbatch, CPCIn Uncategorized4 Comments

This is a topic that I’ve struggled with for quite some time now. You see while I have been living with Fibromyalgia and Chronic Lyme Disease (to name a couple), I also have a great love for ALL things fashion. So what’s the big deal? Well, I’m so glad you asked.

HOW I SHOW UP VS. HOW OTHERS SHOW UP

My issue with this is in the way I show up. Most people you come across who live with some type of chronic illness may show up in lounge wear, no makeup and a comfy pair of socks. To be honest, that’s me whenever I’m at home resting. However, when it’s time to leave the house for a doctor appointment, church or one of my kids sporting events it’s hard for me to leave the house without putting forth some effort to look…good. For someone who has loved fashion for as long as I have and who has worked in the fashion industry for as long as I have, it’s hard to toss that part of me aside, even while struggling with my health.

Each day when I wake up, I thank God for another day then I lie in bed for at least an hour or more in order to a get sense of how my day will go…how I’m feeling and what I can and cannot do. Once I get my morning started I take a look at our family calendar and see if there are any appointments for the day that I need to attend. Once that’s all figured out I then think about what I am going to wear. It’s just a habit, and it’s the truth. It has been ingrained in me to care about my outward appearance when leaving the house from the time I was a young girl in North Texas. Sometimes I wonder what others think about me when I show up somewhat pulled together, I wonder if they think I’m not really sick because of my outward appearance. There’s this internal tug of war going on…do I wear makeup to cover all of the redness and swelling in my face? Should I wear my favorite jeans and graphic t-shirt along with my comfy shoes that just happens to be a luxury brand? What will people think? Do I dress down to make others ok with my condition while at the same time suppressing who I am and who God created me to be? Heck no! (You know I wanted to say something else right there)! Lol!

It has taken some time for me to get comfortable in this space. In the past I have felt bad (for lack of a better word) for pulling myself together when heading out of the house. I now know that this was all FEAR and INSECURITY! Thanks to a dear friend of mine who pointed this out to me in a loving way. She encouraged me to be myself and not concern myself with the thoughts of others. Not to be mean, but not to give any weight to the way others see me. What God says about me is what matters most and that’s what I will continue to draw courage and strength.

The Bible says in Jeremiah 1:5 ” I knew you before I formed you in your mother’s womb. Before you were born I set you apart”…I love this verse because it gives me freedom to be me knowing that I am walking in who God has created me to be! I believe that God is using me and my love of fashion while in the midst of my health journey to be a living testimony that God can use the sick to minister HOPE to everyone I come in contact with. There may be someone that feels they would not be welcome in the house of God because they love luxury items and love to wear name brands. Everyone has a place in God’s family. We all deserve the space to be ALL that we created to be. If you love fashion you are who God says you are. Hold your head up high, carry that Gucci bag and get your praise on! I have to add…everything in moderation.

Here is a picture of me taken a few years ago. I love this look! I love the everything about it. I felt confident and strong, but what you can’t see is the intense pain my body is in. After this picture was taken, I went home to rest and ended up being in a Fibromyalgia flare up for over a week. But you know what? Even with that God is still good just as it says in Daniel 3:18!

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! 

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good!  Daniel 3:18

Follow Windy on social media:

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The Power Of Intention Setting & Chronic Illness

On By Windy J Cumberbatch, CPCIn UncategorizedLeave a comment

Over the past several years, I’ve learned the hard way that it’s important to be intentional about the things I choose to do. It’s important to me to spend time with my family and my amazing friends, but oftentimes I don’t feel good and I’m not able to do as much as I would like to. I spend a lot of time at home alone while my husband is working and my daughter is in school. During the day I am usually in bed or on the couch resting, online doing some research about my illnesses so I can be a better advocate or spending time writing blog posts such as this. It usually takes a while to finish a post due to my illness. I have to take my time because my thoughts don’t come as easy nor as quickly as they used to so I write a little bit at a time until the blog post is complete.

WHAT DOES BEING INTENTIONAL LOOK LIKE?

Well I’m glad you asked! Lol! These are some of the things I put in place that helps me be intentional:

  • Resting: If I have advanced notice that I need to go somewhere like a doctor appointment, I will rest at home for at least 2 days leading up to the appointment do I have enough energy to make the car ride and the waiting in the lobby. Each of these things take a lot to time and energy so I have to be planful.
  • Communication: It is important that I communicate with my family why I am resting. I also ask for help when I need it which is sometimes hard for me. Communicate my needs during this time of rest. Be open and transparent and everything will be ok.
  • Keep It Simple: I try not to overcomplicate things. Communicate my intentions, share the why and move on.
  • Be Realistic: When attempting to be intentional, it’s important that I am realistic in what I want to accomplish.
  • Pray: Ahead of leaving the house for any reason I pray and ask the Lord for strength to do what it is I need/want to do.
  • Say No: It is important to me when being intentional about the things I want or need to do that I say to things that may pull on my energy. If I continue to say “Yes” to things I don’t need to do or own I won’t have anything left for myself. This might be hard for others to understand, but it’s ok. Think self-care!

DISAPPOINTMENT

I have to be honest and say intention setting is not easy for me always…there is some disappointment at times. Staying home getting rest can be isolating and saying “No” can lead to disappointment of others as well as myself. There have been times when I’ve had to say “No” to things that I really want to do but it was best that I didn’t try to push myself because I knew I had something else on my calendar coming up that I needed to conserve my energy for.

I also feel like I am letting others down when I say “No”. It can be emotional for me because I begin to think about all the things I can longer do, at least I can’t do them spontaneously like I used to. It can also be emotional for family members and friends who care about me. Everyone wants to make sure I’m ok physically, spiritually and emotionally. As hard as it can be, intention setting allows me to be the best version of myself so I can show up well. I read recently something that Sara Weand wrote that I love: “Intentions provide you with the opportunity to actively participate in your life the way you want to live it.” I could not agree more!

In conclusion, as I make an effort become great at intention setting, I’d love to hear from you if you have some things that have helped you in this area. Please feel free to drop me a line in the comments below or send an email to info@windysjourney.com, I’d love to hear from you!

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! 

We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good!  Daniel 3:18

Follow me on social media:

IG: @windysjourney

FB: @windysjourney

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My Life Before Chronic Illness

On By Windy J Cumberbatch, CPCIn Uncategorized2 Comments

Lately I’ve been thinking a lot about my life before I was diagnosed with a chronic illness. I spend a good amount of time alone which has afforded me time to reflect over the last 20 years. I often wonder what my life would be like had I not gone to the doctor all those years ago in an effort to get to the root cause for being so sick and for so long. I mean, what if I would have ignored the debilitating symptoms and kept on pushing…where would my life be now?

WHAT DO I MISS THE MOST?

A few months ago someone asked me what aspect(s) of my life from before do I miss the most? Honestly I had not taken the time to consider that prior to getting this question, but I’ve had some time to think about and here’s what I’ve come up with:

  • Having a job
  • Freedom to come and go as I please
  • Going for walks in our neighborhood
  • Having energy to shop all day (Ha! I bet my husband doesn’t miss this)
  • Doing random fun things with my teenage daughter
  • Singing on the worship team at my church
  • Everyday tasks around the house

While this is a short list, there are numerous everyday things that I may have taken for granted that I am unable to do with ease anymore. These days simple tasks like sweeping the floor will wipe me out for several hours. I have to plan things out so I have enough energy. Things like going to the doctor, physical therapy & massage therapy all have to be planned out. Planning for me simply put means getting lots of rest the days leading up to any appointment. I will stay in bed and do absolutely nothing so I can make it. Not only that, I now have my husband take me to and from appointments due to my chronic illness. In the past, it would be nothing for me to hop in the car to head to an appointment, now everything is coordinated with my husband’s availability. My how things have changed!

I STILL HAVE HOPE

Although my life is not where it once was and I am unable to do certain things, I still have hope. Hope that no matter the challenge, no matter how I’m feeling, no matter what, God still has my back. My faith in God is what has gotten through some of the darkest moments in my life, when I felt I couldn’t take one more thing. God is not at all surprised by my illness, he knew I would become ill before I was formed in my mother’s womb. He has been here every step of the way guiding me, providing for me and my family and showing me fresh grace and new mercy. Great Is Thy Faithfulness!

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families.

Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good! Daniel 3:18

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I Have A Full-Time Job & It’s Called Chronic Illness

On By Windy J Cumberbatch, CPCIn Uncategorized9 Comments

Having a chronic illness such as Fibromyalgia and Chronic Lyme Disease can be challenging and debilitating to say the least. Many of us are unable to work traditional jobs due to the intense pain, extreme fatigue, brain fog, memory loss and more. However managing our illness should be classified as a full time job.

You see I have been living with chronic illness for 20 years this year! Unfortunately, I have been unable to work since 2017 due to my chronic condition. Every single day is such a challenge that it actually feels like I’m working a 9 to 5. I say that because there are so many moving parts from 1) finding the right doctor, 2) to getting the proper diagnosis (in a timely manner), 3) to treatment (which can be a ton of trial and error), 4) everything in between and 5) the impact to your mental health. I thought it might be helpful if I broke down each step of the above mentioned process to help drive the point home.

  1. Finding The Right Doctor:
    • Depending on your illness, finding the best doctor can be take anywhere from a week to a few months. For me, I was sick for over 11 years, going from doctor to doctor, treating the symptoms before meeting someone who could point me to an amazing doctor that I ended up working with. Whew…11 years is a long time. When I think about all the hours spent on the phone with various doctors offices, then in the car driving to and from the appointments, sitting in the waiting area then finally taken back to be seen by the doctor, I realize all the time that went into it.
  2. Getting The Proper Diagnosis:
    • Now that you have found the right doctor it’s time to figure out what’s going on with your body. This can take some time. This may consist of lab work, MRI/CT Scans, XRays, Ultrasounds, Stress Tests, etc. There’s a lot of back and forth in this step as the doctor gets your results back from one test and schedules the next one until a diagnosis has been determined.
  3. Treatment:
    • This step in the process may be ongoing, again, depending on your illness. Now that the doctor has landed on a diagnosis treatment can begin. At first he/she may start you on the most obvious plan of action (tried and true) that has worked on others with your same diagnosis. However, because everyone is different your body may not respond in the same way and adjustments may need to be made. That’s where the fun begins (I’m being funny here)! If you’re like me, this step has not been fun especially when you consider how many medication changes I’ve had over the years. I get it, your body starts to become immune to treatments if you’ve been on it for a long period time. I just hate all the times (and there have been many) where I’ve paid my co-pay for a 60 or 90 day supply of a particular prescription only to have it changed halfway through! Can I just tell you that does not sit well with me at all.
  4. Everything In Between:
    • I put this here because there are tons of information on the internet that addresses just about every single illness out there. Supplements, exercise programs, diets and so much more. You will want to do your research to see which one might work best. The issue for me is the fact that there is so much information and can be both time consuming and overwhelming. I try not to get in the weeds too much and I pick and choose what I am willing to put my energy into to avoid all the rabbit holes that I’ve already been down. Whew…
  5. The Impact To Your Mental Health:
    • Throughout this entire process, you may begin to notice the impact all of this is having on your mental health. Specifically after being turned away by a doctor who does not agree to take on your case, or after all of the tests that come back negative and you have to keep going back to the drawing board until a diagnosis can be made, or when others don’t believe you’re sick at all because you don’t “look” sick. All of this (and more) can leave you feeling depressed, isolated and anxious. This rings very true for me. Over the years I have battled anxiety and mild depression as all of this can really wear you down mentally. I mean it’s a lot to deal with. I can’t imagine those who are going through this alone (there are millions that do) I don’t think I could handle it. This too can take time to navigate and may very well be ongoing.

NEW NORMAL

Living with chronic illness oftentimes means there will be changes to your normal daily routine. Things will look different from the way they once were. The biggest change for me was accepting the fact that I could no longer work. That’s a big one and I would say it had the biggest impact to my mental health. Moving from corporate America to now managing my health was the most drastic change. Spending most if not all of my time managing ever changing symptoms, the countless trips to and from doctor visits, and spending a ton of time alone. I have spent many hours grieving the life I used to live and doing my best to accept the life I have now. I am doing what I can to help increase awareness and educate others about Fibromyalgia and Chronic Lyme Disease which is where this blog and my podcast come in. Not only do I advocate for myself, I advocate for everyone who lives with chronic illness. It is my life’s purpose to take what this illness has thrown at me and turn it into good. That too takes time!

Thank you so much for stopping by. Please be sure to like, share and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts, iHeartRadio, AmazonMusic and Spotify! We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage | Inspire others who are on this journey with me.

XO- Windy

And if not, He is still good! Daniel 3:18

Follow me on social media:

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What’s Going On With My Face?

On By Windy J Cumberbatch, CPCIn Uncategorized1 Comment

As someone who lives with Chronic Lyme Disease, it’s important for me to detox. This helps my body eliminate some of the dead bacteria (endotoxins). One of the main reasons for this is to help reduce inflammation that’s caused by the endotoxins. Lyme bacteria replicates itself at a fast rate so it’s imperative to do what I can to detox daily.

One of the things I began noticing is that while detoxing I will get these red splotches on my face. Sometimes it looks like a rash while other times it appears as acne. This is the Lyme bacteria trying to come out through the pores in my face. It doesn’t itch, it does not hurt but it looks bad. (See photo below)

When this happens I become self conscious. In these moments I notice that I also start to feel a little anxious because I think everyone notices and think it’s gross. Now I know that’s not true but it’s kind of when you have a cold sore…you think that’s all anyone sees. I also become angry that this is happening to me, feel sorry for myself and I just want to hide. It happens a few times each month. No matter what I do, I can’t avoid it. In a sense it’s a good thing…the dead bacteria is escaping my body. I just wish it wasn’t so visible.

HOW I DETOX

There are quite a number of ways you can detox. A few of the ways I prefer are:

  • Drinking water (Lemon water is best)
  • Infrared Sauna
  • Juicing
  • Dry Brushing
  • ***I will go into each of these in great detail in a later post***

If detoxing in something you do as part of your regular self-care routine, what are some things that work for you? I’d love to hear from you. Who knows, you might be doing something that works for me too!

Thank you so much for stopping by. Please be sure to like and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts and Spotify! We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage & Inspire others who are on this journey with me.

XO- Windy

The Truth About Chronic Illness

On By Windy J Cumberbatch, CPCIn Uncategorized2 Comments

I have been on this chronic illness journey for nearly 20 years, and while that may be a long time, I am learning new things every single day. I am a member of several support groups on Facebook…the stories I get to hear would shock you. Here are a few things I’ve learned so far that on one hand makes me sad and on the other hand makes me want to do more to increase awareness:

◦ There is a high rate of divorce (Some spouses can’t handle everything that comes with having a spouse who is always sick…they give up)

◦ Many have to choose between paying their co-pays for much needed medication and food or mortgage (That’s a shame)

◦ Many are not believed by their family and/or close friends when they say they are sick

◦ Far too many are made fun of

◦ There is a high rate of mental health issues such as depression and anxiety

◦ There is a stigma attached to having a chronic illness, especially if your illness is invisible

◦ Some suffer verbal and/or physical abuse

◦ Far too many give up and resort to suicide (The numbers are staggering)

◦ Most are too sick to work and are dependent upon social security disability for income

◦ Many are misdiagnosed with many diseases before the correct diagnosis is finally made

◦ Many suffer in silence and not receiving the proper treatment

◦ Many illnesses are invisible which can lead to resentment and frustration from others (Believe us)

I could go on and on about the things some are dealing with in addition to fighting for their health. It hurts my soul to know that some are choosing to end their lives because they are so tired of the pain, the neglect, abuse, feeling like you are a burden to family and friends.

Personally, I suffer from mild depression and anxiety. At times I miss the life I used to have…being able to do what I want, go where I want…those days are long gone. I spend a lot of time explaining my illnesses to some who really want to help but they just don’t know how. While some say they had no idea how sick I am because of my outward appearance. The only thing I can say to that is you never know what a person is going through on the inside…mentally, physically and emotionally. Check on your “strong” friends who are sick but always tell you they’re ok. It could be they’re just telling you that because they don’t want to be a burden to you. When you ask how they are doing be sure to say something like “No, how are you really doing”. Hopefully that will get them to open up and share with you how they are really feeling and how you might be able to support them.

The truth is, living with a chronic illness is ugly, painful, hard, lonely, exhausting, stressful, and isolating at times. We are doing the best we can to make it through each day, but it takes a village to make it through our journey.

Thank you so much for stopping by. Please be sure to like and subscribe to our blog so you’re in the know when we have a new blogpost. You can also find Windy’s Journey podcast now streaming on Apple Podcasts, Google Podcasts and Spotify! We need your support to help increase awareness about chronic illness and the negative impact it has on individuals and their families. Share this with someone who is chronically ill as it is my life’s goal to Empower | Encourage & Inspire others who are on this journey with me.

XO- Windy

https://podcasts.apple.com/us/podcast/windys-journey/id1584718516

May Is Lyme Disease Awareness Month!

On By Windy J Cumberbatch, CPCIn Uncategorized1 Comment

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

So what is Lyme Disease exactly? To be honest it can be hard to explain. In it’s most basic terms, Lyme Disease is an infectious disease caused by a species of bacteria belonging to the Borrelia family. Borrelia burgdorferi sensu stricto is the main cause of Lyme Disease in North America. The disease is named after the towns of Lyme and Old Lyme, Connecticut where a number of cases were identified in 1975. Although it was known that Lyme Disease was a tick-borne disease as far back as 1978, the cause of the disease remained a mystery until 1981 when B burgdorferi was identified by Willy Burgforfer.

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

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

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

Thank you for stopping by!

-Windy

2021: My Year In Review

On By Windy J Cumberbatch, CPCIn UncategorizedLeave a comment

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

On By Windy J Cumberbatch, CPCIn UncategorizedLeave a comment

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

On By Windy J Cumberbatch, CPCIn UncategorizedLeave a comment

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

On By Windy J Cumberbatch, CPCIn Uncategorized2 Comments

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.

In Sickness & In Health

On By Windy J Cumberbatch, CPCIn Uncategorized2 Comments

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!

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IMG-3720

My favorite picture of us!

Thanks for your support!

XO, Windy

Gluten Anyone?

On By Windy J Cumberbatch, CPCIn Uncategorized1 Comment

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!

Good Day-Bad Day-New Day!

On By Windy J Cumberbatch, CPCIn Uncategorized12 Comments

I recently celebrated my 48th birthday and spent some time reflecting on the past few years.  All the challenges I have faced and the impact chronic illness has had on my life. Fast forward to 2020, I realize with everything going on with COVID-19/Coronavirus, that my emotions have fluctuated from good to bad in a matter of a few minutes.  It’s easy to become fearful of the unknown as we all try our best to get used to our new normal. To navigate the reality of the changes in our daily routine and to wonder what each new day will bring. I must admit that I try to limit the amount of news I take in each day as it can be quite overwhelming.  I put my hope and trust in God, knowing he is in control.

When thinking about my journey, what do my Good Days look like?  These are the days when my symptoms seem to be in check and I am able to navigate through the day with minimal issues.  Some days I feel so good, I forget I’m sick.  I am able to do a little more than the previous day.  I am able to be present in family interactions, chat a little longer on the phone without losing my train of thought (short term memory loss) and do more around the house without feeling like I’m about to pass out.  I look forward to these days, where I feel a little more like myself.  While it may not look the way I want it to look, I am still very grateful.

Then there those days when I am reminded of how my symptoms continue to ebb and flow with new treatment and medications. Insert Bad Day: At times it is easy for me to get caught up in my emotions and feel sorry for myself and become bitter about being sick, really sick and for a long time. The flare ups, the brain fog and fatigue can feel like a lot to handle at times.  Some might think it’s ok for me to feel frustrated given all I deal with on a daily basis, but it’s important for me to stay the course and stay focused on the promises of God.  To remember that in this life there will be challenges, but joy WILL come in the morning.

Lastly, I look forward to each New Day and all that it has to offer.  Each day is a fresh start, a new opportunity to experience God’s love, to encourage others and to get one step closer to living out God’s purpose for my life.  I know this illness is my testimony to others about the goodness of God.  Throughout my entire journey He has been with me, provided for me and my family and protected me.  “I know the plans I have for you” Jeremiah 29:11 reminds me and I believe this too shall pass.  My hope is that by sharing my journey with chronic illness, others are Empowered | Encouraged | Inspired to never give up no matter what you are facing.  I continue to pray for others who are facing challenges knowing that we will get through this together!  

XO & Be Safe,

Windy

Be thankful for where you are now and keep fighting and working for what you want to be tomorrow

 

 

 

 

You’re Tougher Than You Think

On By Windy J Cumberbatch, CPCIn Uncategorized1 Comment

Walking through this chronic illness journey has really caused me to reflect on all the things that have transpired, especially the past 2 years which have been really rough for me physically and emotionally.  It would be easy for me to get upset and become bitter for the loss of my former self.  To wallow in self pity, feeling like the world is against me.  I’m sure many of you would say I have every right to feel betrayed somehow, but you know what…I’m learning that I’m a lot tougher than I thought.

I have been living with Chronic Lyme, Chronic Fatigue and Fibromyalgia since 2003 (maybe a little longer for the Fibromyalgia) and it has not been easy.  Each day brings with new symptoms, lots of pain and fatigue.  I wake up each day not really knowing how I’m going to feel or what I may or may not be able to do that day.  The hardest thing for me so far is not being able to work.  I deal with a lot of cognitive issues, short term memory loss and brain fog.  I can’t control the things I can remember and it’s very frustrating.  I try to write things down so I don’t forget, but that sometimes poses a challenge when I can’t remember where I put the note.  Some things that have I have been doing for years are easier for me to accomplish, but even those things start to become challenging for me.  I thank God that those who love me and those I do life with extend lots of grace and are very patient with me, which is a huge relief.  I will admit at times it does cause a disagreement with my husband or family member when they tell me something I said or did and I can’t remember.  In my mind, if I can’t remember it, it didn’t happen.  Slowly, I’m learning to say, “You might be right, but I don’t remember that”.  That helps keep the arguments to a minimum, but at times I have stood my ground and that’s no fun!!!!  As hard as it is, I am learning that it’s ok to forget and it’s ok to say “I’m sorry”.  (My husband will love that I said that).  Ha!

When I was growing up, my mother would always say “To whom much is given, much is required” and I truly believe that with all my heart.  God has been so good to me and my family over the years.  He’s given me “much” therefore, “much” is required of me.  Yeah, being sick sucks at times but guess what…this too shall pass and I’m learning with each passing day that I’m tougher than I thought!

Until next time,

WJC

What Those Of Us Who Suffer From A Chronic Illness Want You To Know

On By Windy J Cumberbatch, CPCIn Uncategorized1 Comment

Since being diagnosed with Chronic Lyme Disease, I have been blessed to have the support of a loving family (a special shout out to my hubby Carl) and some pretty amazing friends.  Whatever I need, they are always there to encourage me and do whatever they can to make things easier for me.  That being said, there are some things that you may not realize about me and others who suffer in silence out of love and care for those near and dear to us.

Most days, on the outside to most people I look completely normal.  If only you could see what’s really going on inside. There’s a lot going on.  I work hard to hide my symptoms because I don’t want others to feel sorry for me, more importantly, I don’t want people to worry about me.  I’ve always been one that is independent and self-sufficient, but with this illness, at times I need the help and support of others which is at times hard for me to accept.  You see, on the outside, you don’t see the anxiety I deal with (thanks to brain fog and short term memory loss), hoping I don’t forget something important, like how to get home (which has happened) or the intense pain that consumes every ounce of my being or the hand tremors that makes my writing impossible to interpret or the days that my legs just decide they just don’t want to cooperate and last but not least when out of the blue I lose my voice for no apparent reason.  What a way to live right?  That’s just scratching the surface.  Because I care so much for my family and friends (each of you), I go to great lengths to disguise what I’m going through.  If there’s too much attention on my symptoms, I become insecure and stressed about what others might think of me which is obviously no way to live.

I share all of this with you to say, 1- thank you for your support, it really means a lot to me, more than words could ever say and 2- most days there’s a lot going on with me so if I seem a bit off, especially in social settings it’s not you, it’s me.  I am hopeful that one day I will be able to report that I am in remission or that I am completely healed.  Until then, keep me in your thoughts and prayers and I will be sure to do the same for you and your family.

Thank you for reading!

XO,

Windy

You Are What You Eat!

On By Windy J Cumberbatch, CPCIn Uncategorized2 Comments

Since being diagnosed with Chronic Lyme Disease, I’ve come across people who have suggested that what I eat might be having a negative affect on my body.  This is not something I wanted to hear because, well if you know me, you know how much I love to eat.  I must admit that my husband and I are known for going on date night and finding a new restaurant to try in downtown Austin.  We have a running list that we work from and are always adding to it!

During the month of January, I decided to give healthier eating a try to see if would help with some of the symptoms.  I gave up meat, coffee (boy was that hard), sugar, bread, and dairy!  Did I mention how much I love a good steak?  I started eating more fruits and vegetables and much to my surprise I slowly started to notice a difference in the way I felt each day.

The first week was the toughest as I started having caffeine withdrawals in the form of some pretty intense headaches. Once I got past that, things started to get better for me.  Right away, I noticed less inflammation, especially in my stomach area.  I think that is a direct result of me giving up bread and pasta, which I love almost as much as I love a great prime rib.  I also noticed the brain fog decreased a bit as I felt a greater clarity at times.  Not all the time, but it was a little better.  I didn’t feel as sluggish or drained as I normally did and less pain in my joints.  One new thing that I tried that I plan to continue is at least once per week having a carrot/turmeric shot with black pepper.  Since I started taking those shots, I have noticed less pain in my joints and less inflammation.  The black pepper helps with absorption.

To make a long story short, I like the way I feel when I’m making better food choices and will try to keep it as much as possible.  I have re-introduced some of the foods I had avoided, slowly and will only eat many of them in moderation if at all.  I’m still not back to my having my daily Americano from Starbucks, but’s that probably not a bad thing!

Still fighting,

Windy

 

 

 

 

Help Is On The Way

On By Windy J Cumberbatch, CPCIn Uncategorized2 Comments

As you likely imagine, by this point I am feeling very disappointed and hopeless.  Not knowing if I would ever find out what’s wrong with me is very disturbing to say the least.  At night while my family sleeps, I pray to God to guide me in the right direction to get the answers I sought.  He did just that!

In a previous post I mentioned that I met someone who also had Chronic Lyme Disease.  I reached out to her to gain more information about her treatment and the doctor she that was treating her.  After many hours of discussion and research, my husband and I decided it was worth a shot.  You see the doctor that I would begin seeing is located in Louisiana!  6 hours away from where I live in the Austin, Texas area.  The costs of travel and the unknown costs for copays, labs and potential medicine was worth me getting the answers I needed and longed for.  You may be asking why I need to drive all the way to Louisiana.  What I am learning is that in Texas there are not many doctors who are Lyme literate (more to come on that) and I have heard of people with Chronic Lyme Disease traveling as far as Chicago and California to seek treatment.  I know, it sounds crazy but it’s true.

So off we go to Louisiana.  As you can imagine I am feeling a wide range of emotions at this point.  Excited about getting some answers to scared of what I might find out to anger that I had to drive all this way because my own doctor brushed me off.  My wonderful husband is doing a great job at keeping me calm and focused.  He’s great at that…that’s one of the reasons I love him so.

We arrive.  We walk in an there are several patients in the waiting room.  My husband checks me in while I get situated in the lobby.  I am comforted by the many scriptures posted around the office.  God knew I needed to see that.  When I finally get called back to see the doctor, I provided him with all my medical records and he asked me a series of questions and such.  He did an exam, drew blood for lab work and some x-rays of my head.  Based on what he saw in my file, my symptoms and his examination he determined that there was a strong likelihood that I did in fact have Lyme Disease as well as a Co-Infection of Lyme Disease called Bartonella.  To be completely certain of a positive result, he wanted to wait to get the blood tests back.  

At this point, you may be wondering just what kind of symptoms I am having so I thought I’d share some with you (this is not all my any means):

Hand tremors, Brain Fog, Short Term Memory Loss, Unable to Focus or concentrate, pain, tingling and numbness in my feet/legs/arms, shooting pain in legs, insomnia, loss of balance, involuntary muscle movement, involuntary movement of limbs, weakness in hands/legs/arms, dizziness, abdominal pain, vertigo, extreme exhaustion (all the time), low-grade fever, loss of voice, eye infection, tenderness in the crown of my head, swelling and tender joints (fibromyalgia),blurred vision and back pain.  In total, I have a combination of 140+ symptoms.  Not all at the same time and not every day.  Each day is different, so I never know how I am going to feel when I wake up each day.

Finally after about 4 weeks, I go back to Louisiana for my second visit and got my test results.  I tested positive for “Chronic” Lyme Disease and during this appointment he also determined that I have Fibromyalgia and of course the Co-Infection Bartonella.  He started me on a treatment plan which consisted of a combination of various antibiotics and other medicine that would get me started.  He could mot make a determination how long this treatment would last though it has been said that for every year a person with Lyme Disease goes misdiagnosed, you need about 4-6 months worth of treatment.  I have been misdiagnosed since 2003…

On the way home and I am feeling relieved that I finally got some answers.  I am happy and a little nervous about what lies ahead, but with God on my side I know that I am up for the challenge!

Thanks for reading,

WJC