Behind the Scenes with Debra Jean (Realizing what a woman with chronic illness goes through daily).

I “met” Debra when we helped launch a Bible study for another friend. During networking week, when we could ask for anything, I asked people who suffered from chronic illnesses to help me understand what they were going through. These last few years that we’ve walked through Autism with my son, I have heard so many hurtful and judgmental things (among encouraging and loving things as well). To be completely fair, I’ve thought many of those same things before my own son was diagnosed in 2015. For the last year, I’ve had this dream to let you in, Dear Reader. To allow you to see behind the veil and the masks we wear, and see the nitty-gritty and the hard places of our lives.

We are part of the Body of Christ, and each of us, need the other. As the Bible says in 1 Corinthians 12 :12-27 each part of the Body has a function. The eye needs the hand, the hand cannot live without the foot, and all the members of the Body are subject to the Head, Jesus Christ. In the same way The Church needs all of its members. The special needs children and their weary families. The sick and the ill and the depressed and the healthy and the joyous and the energetic. As Christians we’ve heard of the advice to older men and older women that Paul gives in Titus 2: 1-8 to teach the younger generations. Sometimes we do so, sometimes not.

What if we learnt from other groups too?

What if we learnt resilience from the families of special needs children?

What if we learnt to continue to pursue God from the people who suffer from chronic illnesses?

What if we learnt to stay in God’s will from those who constantly ran away from God and have now come back to Him?

What if we learnt methods to study the Bible from our pastors and teachers and leaders?

What if we learnt how to serve people from the people who make up our hospitality teams and cleaning teams in churches?

What if? I believe we have things we can learn from other people in the Church. I believe we can teach others in the Church as well. I believe we can encourage each other with the comfort we’ve received. The comfort God gives us in our valleys and hard places and sorrows and struggles. I believe we can receive comfort from someone else going through those places or have come out from those places.

My hope is that you will be encouraged if you’re going through this situation. My prayer is that maybe you will find something to encourage someone you know going through something like this, once you read these posts. My goal always, is to glorify God. While we talk about our valleys, we want to make sure we give God the credit He is due. None of us would have survived and then learned to thrive without Him giving us His Strength.

I want to welcome Debra Jean to our site. I hoped you are blessed by her post. Please leave encouraging and kind comments. Thank you so much 🙂

 

Debra Jean Curto

My name is Debra Jean Curto, I am a child of God, wife, mother of 2, and Christian blogger. I love reading, photography, and crocheting among other crafts. My hope is to share my testimony and the insights God gives me and to bless others as we grow in Christ.

 

 

 

 

 

Interview with Vanessa Samuel

Background: I was diagnosed in 2009 with fibromyalgia. In 2015 I was diagnosed with breast cancer, I opted for a mastectomy over radiation, and in Nov 2015 I was deemed cancer free. In March of 2017 I woke up dizzy. After ruling out vertigo from the inner ear doctors believe the dizziness is caused by migraine syndrome. The dizziness has not stopped although the severity varies from day to day. The migraines seem to only be increasing. Currently I get about 5-10 days a month without any migraine, some days they are less severe than others. I’m still trying to find a medication that will work.

Who were you before this?

A wife, mother, daughter, sister, aunt, friend, and homemaker with a career in finance and budget. I had a very full and busy life. Like most people I took my health for granted and kept my schedule overloaded. I still am a wife, mother, etc.… only now I have a mostly empty schedule. Who I am has not changed, what I can or can’t do has changed quite a bit.

What lifestyle changes did you need to make ?

In 2009 when I was diagnosed with fibromyalgia many changes came to our home and family. We had someone come in and help with house work, my husband picked up doing a lot more around the house as well as running errands and food shopping. My mom has been immensely helpful through all of it, I’m not sure we could have managed so well without her. I quickly learned that my energy, which was suddenly limited, was better spent with my kids, then being particular about how the house looked. We also had to learn that making plans is great, however, ultimately it depends on how I feel then, not when the plans were made. Some days I can push myself other days I can’t.
With the migraine syndrome I have had to resign from work and I am unable to drive. Most everything is difficult, some days nearly impossible. The computer for example, there are some days I’m okay with an hour or two on it, other days I can’t do five minutes. I can’t clean my house, if I’m able to do a load of laundry and pick up after myself I’m happy. My daily goals have simplified, they are simply making the bed and get dressed (dressing is yoga pants and a baggy tee most days). Truly everything has changed. I am grateful that both of my children were grown about the time it got to this point. They are now both out on their own in separate states, I miss them and I am glad I am not burdening them. This time is for them to be young and have their own lives.

What was your lowest point?

Not a proud moment. When I was going through the tedious process of being diagnosed with fibromyalgia and I didn’t know if I would ever get back to work. I remember one day this was getting out of the shower I was out of breath exhausted, and thinking what a burden I have become to my family, and the next thought was ‘it would be better if I was dead.’ Immediately I knew this was flawed thinking and I prayed. God gave me a clear message letting me know that I wouldn’t be here if He didn’t have a purpose for me and that this would be used for His glory. This has given me hope even in those days, weeks, and months that I can’t possibly see how. Through it all, I know that He is able. God also seemed to be asking me, what is it that parents give you that is so important? It has so much more to do with love, time, care, and conversations than cooking, cleaning, running around, etc… And I could still do that, even today I still can and do.

What was your highest point through this or you found an effective way to function?

I haven’t reached this with the migraines, they still seem to be able to get worse rather than better. Although, I do remember about 6 months before I was diagnosed with cancer, thinking that I was starting to manage things better. I felt like I was finally learning how to balance limited energy, I wasn’t pushing myself and I was using what energy I had wisely. So, that gives me hope that I will get to that point again one day.

How has God made Himself real to you in this/these situations?

In every way possible! I love the book of Job. I wonder if Job had been told a year or three weeks before the disaster stared what was coming, would he have known that he would or could stay so faithful to God through it all? It isn’t until you need God for everything that you realize He has always been everything. There are days that are so bad, that light, sound, smell, or touch are crazy painful. At this point all I can do is pray and I have found that when I choose to praise God instead of beg for relief, my heart is filled. It doesn’t change the pain it just shifts my focus and that can do more than any pain relief can. Don’t get me wrong praise doesn’t always come easily in these moments, however, it always seems to feed my soul and be just what I needed.

What is your favorite Bible verse?

When I was first going through the diagnosis process for fibromyalgia my mom gave me a plaque with 2 Cor 12:9a “My grace is sufficient for thee for my strength is made perfect in weakness.” I read it many times every day. I had also read it many times in my Bible reading. Yet, somehow when I was diagnosed with cancer the second part of this verse really spoke to me, it came together. It seems odd to me that we always see the first part without the second because together it is so much more powerful. “And he said unto me, My grace is sufficient for thee for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.” 2 Cor 12:9
I love to think of the power of Christ resting upon me when I am weak. Therefore, I like Paul will gladly boast in my weakness.

Bust some myths for us, tell us what this illness is not.

Fibromyalgia is not a label given to hypochondriacs, please do some research before you say that. It takes a lot to be diagnosed with fibromyalgia, it is a long drawn out process, just because they have not found what causes it doesn’t mean it is not real. People used to die of cancer all the time and it was called “natural causes.” Migraine is a whole lot more than a bad headache, if you have never had one you really can’t imagine, you should consider yourself blessed. Both of these conditions affect different people differently. With fibromyalgia there are a long list of other conditions that are common, not every patient has all of them we each get our own personal concoction. Some migraines can cause stroke like symptoms including temporary paralysis.
I just ask that we be slow to judge. With the dizziness I occasionally look like a stumbling drunk, I very rarely drink, yet I have seen the looks and heard the comments. Both hurt equally and are unfair to my family and friends.

How do you care for yourself?

It really depends on the day. Usually I can manage to shower and get myself out the door if I have to, although, I can’t drive so I have to get a ride. I can usually get myself something simple to eat. The biggest problem I have is not being able to do house work. It is one thing to pay for someone when you are working, it’s another to need help when you are always home. I simply can’t do most household chores, this is a source of irritation and frustration for me on a regular basis. I do have family, friends, and a supportive church family if I ever need anything or get stuck in a bad spot. I don’t call for help much, however, it is a great source of comfort to know that there are people willing to help if and when needed.

How have your relationships with those closest to you changed?

WOW, this is a loaded question. In so many ways, many of which I couldn’t put into words that would truly convey the sum. I will say that not all the changes have been negative either, illness has a way of making you look at everything differently. Cancer was awful and yet God used it for good, so much good. He used cancer to save my husband and our marriage (For more about my thoughts on cancer please read, “Let’s turn CANCER into cancer” ) Still, as hard as cancer was my husband has said that fibromyalgia is worse. I realize that this is not the case for everyone, I lost my youngest sister this year to cancer. I do grasp how lucky I was, my cancer was not very aggressive and it was found very early. The point my husband was making was that in our situation, we dealt with cancer for a about two years (now it’s just blood work and two appointments a year for five years) the fibromyalgia on the other hand, you just have to learn to live with an invisible disability. Fibromyalgia doesn’t get better it gets worse and, in many ways, it has disabled our marriage and our family.

What would you like people to know about the realities you face?

I don’t want being sick to be what defines me. My name is Debra I am a child of God, a wife, and mother. I don’t want any illness to be on the list of who I am, it is a struggle that I deal with every day, it is not me. I don’t want people to feel sorry for me, just to believe me. Also, when I say that I am fine, I’m not. Really what that means is 1. I get sick of “hanging in there” 2. I don’t want to go into details and 3. It means I’m mostly status quo, whatever that is at that time. Please, can we talk about something other than how I feel? Ask about my kids, tell me about your kids, I want to hear your praise report and your prayer requests. And I want to share all that with you too. Usually it has little to do with my health anymore. However, please know that I always appreciate your prayers and I know that they do make a difference.

What would you like to tell people going through similar situations to give them hope?

1. God really truly can use it for good. Rom 8:28 He is so able; just trust and wait you’ll see.
2. Don’t focus on what you can’t do, focus on what you can do.
3. Distraction is a good form of pain killer. I have found that when the migraines are absolutely debilitating sitting under the covers hiding only allows me to focus on the pain the problem with that is that it only increases the pain. When it is at its worse I pray and praise the Lord, even a little thing like prayer can shift my focus away from the increasing pain. When they aren’t quite that debilitating, I hide in my dark room often with a movie paying quietly and I crochet. For me crochet is muscle memory, I have been doing it for so long I rarely have to look at it. It doesn’t cause much movement and so it is enough to distract me without causing more pain. I also like audio books (quietly) for when I can’t read. Before I had visual issues, I loved the adult coloring books, and needle point. I have also done paint by number and the diamond painting, there is a lot out there so find something that will work for you, something you can do. Prayer always works, don’t be afraid to cry or even get mad. Be real with God let your feelings out, God already knows so there is no reason to try to hide anything from Him. Plus, He is the best at listening and helping sort it out.

What is your favorite worship song?

I don’t think I could just call one my favorite, there are so many great songs that have helped me get through at different points in the whole process. Although, there is one that I pray and I sing often that I think reflects the attitude I hope to have, it is “Bring the Rain” by Mercy Me.

 

 

Until next time, dear friends,

Vanessa.