Tag: Advocate

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

On By Windy J Cumberbatch, CPC7 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 3 | Evenings

On By Windy J Cumberbatch, CPC1 Comment

The final part of my “Day In The Life Of” series will be rather short and to the point as there’s not a lot going on for me at the end of the day. The priority for me and my family after about 6pm is…what will we eat for dinner. This is a point of stress for me, my husband and my daughter because we can never really decide what we want to eat, but we surely know what we DON’T feel like eating which makes it hard to make a decision. Is it just our family? Surely not…Lol! #cansomeonemakeadecisionalready!

For those of you who have been following our blog and/or podcast you know that I cannot have gluten or else I will become very ill. This drastically limits what we can eat near our home. We are surrounded by tons of fast food, none of which are places I can eat safely. That means we will either have to cook (Ha) or drive somewhere a little further out to get something that is safe for me to consume. There is typically a lot of back and forth before we land on something. Recently my husband made an announcement that going forward, if we are eating out or ordering in it will be up to me to decide what we will eat. That comes with lots of pressure as someone in our family is a picky eater (Not saying any names)! My husband is not interested in the back and forth that ensues every time we need to decide what we will have for dinner. I understand his point of view as it can become quite exhausting. You might be thinking to yourself, “Why don’t you just cook”…that would seem like the obvious solution but I don’t really have the energy to cook. It wipes me out unless it’s something that can be thrown into a crockpot and left to do it’s thing.

Whew…

Once we’ve had dinner, the only other thing that’s left on my list of things to do is…yep, you guessed it…SLEEP! I wish I could tell you that it’s easy for me to fall asleep as tired and fatigued as I am, but it’s not. Not only does it take me a good amount of time to fall asleep it’s also hard for me to stay asleep. I wake up in the middle of the night in pain throughout my entire body. The pain is so intense and it feels like I’m on fire. I will take some RX and try to fall back asleep. Sometimes I can and sometimes it’s not that easy. Insomnia is a very real thing that I deal with on a weekly basis. It leaves me even more tired and exhausted the next day. When I can’t sleep I will usually read my Bible and pray. Eventually I do fall asleep and prepare for everything to start over again the next day!

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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Here’s a picture of me finally falling asleep on a day that I was feeling absolutely horrible!

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

On By Windy J Cumberbatch, CPCLeave 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, CPC2 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, CPC1 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:

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FB: @windysjourney

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Chronic Illness & My Love Of Fashion

On By Windy J Cumberbatch, CPC4 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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My Life Before Chronic Illness

On By Windy J Cumberbatch, CPC2 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

Follow me on social media:

IG: @windysjourney

FB: @windysjourney

T: @windysjourney

The Cold Makes My Fibromyalgia Worse

On By Windy J Cumberbatch, CPCLeave a comment

I have been living with Fibromyalgia for over 20 years now and I must say I never look forward to the winter months here in Texas. Around the month of February is when we start to see more traditional winter temperatures, that’s the time of year my body dreads the most. As the temps start to drop my body begins feeling the cold in my bones which makes the already intense fibromyalgia pain worse. Once I get cold it’s hard for me to warm up. The aches and pains in my entire body run deep.

Day after day my body tenses up due to the cold which causes a fibromyalgia flare up. This is likely because of the numerous sensory nerves in the circulatory system. It’s hard for me to relax because I can’t regulate my body temperature. I mean my skin even hurts if you can imagine that. When I get cold my nerves become agitated which causes the nerves to act improperly, thus causing increased pain.

No matter who you talk to, those of us who have Fibromyalgia seem to have this in common, we hate the impact cold temperatures have on our bodies. I belong to several chronic illness groups and it never seems to fail that when we get into the winter months you start to notice more and more posts where people are in increased pain due to the cold weather.

Pain Management

What helps with managing the increased pain levels for Fibromyalgia sufferers during the winter months? Here are a few things that help me:

◦ Hot bubble baths (As hot as I can stand it)

◦ Heating blanket

◦ Fluffy socks

◦ Wearing lots of layers

◦ Eating more hot foods

◦ Weighted blanket

◦ Sipping on hot water with lemon or hot tea

◦ Turning up the thermostat (This can be a balancing act with other family members in the house)

◦ Keep a sweater in every room of the house as well as in the car

I have read about instances in which a family will move to a warm weather climate to get away from the cold temperatures, however I do recognize this is not a simple solution that many can make.

Here’s a recent picture of me in the backseat of our car (driven by my amazing husband) in so much pain due to the really cold temperature. You can almost see the pain in my face and the many layers of clothing I am wearing to try and get warm.

One note of caution…you will want to be careful when trying to get warm, you don’t want to warm up too fast as this can also cause a flare up of symptoms and increase pain for getting too hot too fast. It’s a balancing act for sure and you will want to ease into any routine until you find what works best for you and your body. Remember everyone is different and what works for me may or may not work for you! Please be careful!!!

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

On By Windy J Cumberbatch, CPC9 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

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What’s Wrong With My Thyroid?  

On By Windy J Cumberbatch, CPC5 Comments

Over the past several months I have been having an issue with my weight.  Since the end of 2021 I have gained over 20 pounds.  I don’t really eat much, maybe twice per day so that inspired me to reach out to my doctor to see what was going on. After a series of trips to the lab I found out that my thyroid is underactive again.  This is not the first time I’ve had an issue with my weight and my thyroid.  Back in 2018 I had a similar issue and my RX was adjusted and I was able to lose the weight. This time, the bloodwork showed that my levels had decreased again which meant I needed to have my RX adjusted. 

According to thyroid.com, More than 12 percent of the U.S. population will develop a thyroid condition during their lifetime. An estimated 20 million Americans have some form of thyroid disease. Although it feels very personal to me, I know I’m not alone in my struggle.

Over the course of a year, my medication has been adjusted twice, however it does not appear to be working.  I am not able to move comfortably, I cannot fit into my clothes comfortably and just don’t feel like myself.  With the Fibromyalgia and Chronic Lyme Disease, I am unable to exercise to try and get the weight off.  It’s hard for me to walk long distances and it’s equally hard for me to walk for a long period of time without my heart rate increasing to the point of becoming dizzy, and feeling like I am going to pass out.  My hands start shaking, I become lightheaded and weak. It’s actually quite scary when I think about it.  My doctor suggested water exercise, the only thing about that is I’m not a swimmer. I’m thinking I will be ok in a hot tub or a pool in the shallow end, but I have not yet started and I know I need to.  

Since the weight gain I can tell I’m a bit more self conscious and anxious. You see I don’t like the way to look and feel and in my head everyone has noticed. I know those close to me love me know matter what but I get in my head and just want to crawl under a rock or just stay in bed. I ask my husband more regularly if I look ok and of course he thinks I’m beautiful. My girlfriends think I’m as stylish as ever and their support means a lot. Some days I look in the mirror and feel sorry for myself. In those moments I feel a little depression trying to creep in. It’s a battle every single day, physically, mentally and spiritually. I cannot allow my illness to define who I know God created me to be. I am more than how I look, I just have to be intentional about reminding myself who God says I am and control the things I can control. Some of the things I’ve been working to implement are:

  • Eating less carbs and sweets
  • Eating more fish, fruit and veggies
  • Drinking more water (Especially lemon water…helps with inflammation)

In the meantime I will wait to see what the doctor says about making additional changes to my thyroid medication and go from there. I do realize that it’s not just my thyroid, it also has to do with the amount of inflammation and swelling in my body. Lot’s going on but God is still good!

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