It Might Be Fibromyalgia!

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

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

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

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

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

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

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

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

Until next time!

XO, Windy

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Gluten Anyone?

So for those of you who know me really well, you know how much I love good food! I guess you could say I’m a self proclaimed “foodie”.  My husband Carl and I like to try new places to eat. Carl has created a list that he keeps in his phone of places he wants us to try.  Our friends often call on us when they are planning a date night and want a yummy place to eat.

Now, let me tell y’all what happened to me about 2 years ago!  I still can’t believe it myself…

I guess it was Summer of 2018.  I’m starting to get used to the daily IV infusions, when I began to experience some issues with my digestive system.  Right after I would eat, I would begin to experience some discomfort, however it was inconsistent so I didn’t really pay too much attention to it.  As the days and weeks went on, I began to notice pain in my stomach that at times hurt so bad that I would double over in agony.  My joints would begin to hurt, first in my left shoulder, then it would progress all over my body.  It was so strange, and I could not understand what was causing the pain.  A few times I would become nauseous and begin to vomit until whatever I ate was out of my system.  This went on for months until I mentioned it to my doctor who would run a series of tests to try to figure out what was going on.  A few days went by and the phone rang.  The doctor asks me if I had ever heard of Gluten.  I said yes, and asked what that had to do with me.  He said, “Well your test results are back and you cannot have Gluten”.  Say what????  He started talking to me about Celiac Disease and then asked if I’d always had issues with food causing me pain.  In that moment I couldn’t think of anything, I was still in shock by what I was hearing.  Honestly, the only thing on my mind was bread and how this news was going to impact my love for it.  I mean bread is one of my favorite things and now that was gone…at least that’s what I was thinking in this moment.

Fast forward one day when talking with one of my college friends, she reminded me how I would get so tired and not feel well after a meal.  I would always complain of my shoulder joints hurting, feeling sick and needing to lay down.  Then I spoke with my dad who shared that he and my mom had a hard time finding formula for me because I had a hard time with it. In 1972, my parents didn’t know what Gluten was (I guess my pediatrician didn’t either-Ha!).  So, it was concluded that I’ve had this issue with Gluten my entire life, but the Lyme Disease triggered it in such a way that I could no longer tolerate it, even in small amounts.

Nowadays, whenever I eat even a very small amount of Gluten, I begin to feel extremely sick and my small intestine tightens up and my body is flooded with intense pain and inflammation.  The only thing that helps is for me to bring up whatever I’ve eaten and even then I still feel the side effects for about a week.  I hate dining out now because I feel like I am interrogating the server to make sure there is no Gluten or cross-contamination.  You might be wondering what cross-contamination is.  To put it as simply as I can, it’s when you have food that does not contain Gluten and cook it (or use the same utensils ) on the same surface, skillet etc as you would food that does contain Gluten, that creates cross-contamination.  For me, I am so sensitive to Gluten that even the slightest error will cause a huge issue for me so I have to be careful.  Many restaurants will tell you their food is Gluten-Free, but there’s so much cross-contamination going on in the kitchen that the Gluten Free food is no longer Gluten Free.  It’s hard to explain…

I would love to see a lot more education about Gluten/Celiac Disease in the restaurant industry. More needs to be done for restaurant owners, chefs, and their staff , to better understand the risks.  Additionally, to understand how to properly prepare Gluten Free options and more importantly, how to eliminate cross-contamination.  I do see some progress, and there are quite a few places to eat here in the Austin, TX area that understand and do it right.  I feel safe at the places that know what I mean when I mention cross-contamination or have a protocol in place when someone requests GF options.  Here are a few of my favorite places (in no particular order) that have many options and/or have a protocol in place to avoid cross-contamination:

These days, during the COVID-19 pandemic, we are cooking most of our meals at home, but one day I hope to enjoy a few of these places again.  Until then, off to the kitchen we go!

Until next time,

XO,

Windy

P/S

If you know of a great place to get Gluten Free options in the Austin, TX area, please comment on this post or shoot me an email to windy@windyjcumberbatch.org

Windy Eating Dee's Cupcakes

Me eating a GF Red Velvet & Chocolate Chip Cupcake made by our daughter, Dee, owner of Dee’s Sweets & Treats!

My Mom Is Sick, Now What?

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

Below are Chanel’s unedited responses to my questions:

Q: What is your relationship to Windy?

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

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

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

Q: How has Lyme Disease affected your life?

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

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

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

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

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

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

Windy and Coco after Infusion

Until next time!

XO,

Windy

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