My Mom Is Sick, Now What?

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

Below are Chanel’s unedited responses to my questions:

Q: What is your relationship to Windy?

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

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

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

Q: How has Lyme Disease affected your life?

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

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

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

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

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

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

Windy and Coco after Infusion

Until next time!

XO,

Windy

Good Day-Bad Day-New Day!

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

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

My Journey With Lyme Disease

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…

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You’re Tougher Than You Think

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

2019, A Year of Growth

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

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

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

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

Happy New Year!

WJC

A Day In The Life Of Me

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

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

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

Until next time,

WJC

 

What Is Chronic Illness?

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

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

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

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

XO,

WJCfullsizeoutput_1239

*Denotes Chronic Illness Windy has been diagnosed with

What Happened?

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

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

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

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

Until next time,XO

Windy

 

 

 

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

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

Why Me?

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

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

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

Still fighting,

Windy