Invisible Illness Awareness Week

This week is invisible illness awareness week. Invisible illness covers a lot of illnesses that others may not see a person have. They include lupus, psoriatic arthritis, rheumatoid arthritis, POTS, chronic fatigue syndrome, and many more.

The cartoon expresses the frustration people living with chronic illness feel when people say things like, ‘you don’t look sick’ ‘maybe you need to try yoga’ ‘do you take vitamins’ etc.

What people living with chronic illness wish friends would say are:

“Can I help you with anything?”

“I understand you can’t make it at times, but I like inviting you”

“Can I give you a ride to the doctor?”

“How about we chill out at your place and watch movies”

I am grateful that most of the time my chronic illnesses do not prevent me from doing what I want to do, but it has caused me to modify the things I do. For example, I used to love bicycling, but can’t anymore. I can, however, walk in an aqua track.

A special shoutout to my readers who live with chronic illness.

Thank you for reading. God Bless.

Wellness Wednesday- Almost Missed A Blessed Sunday

Missing out on moments in life is a part of living with chronic illness. Spoonies, people with chronic illness, always want to be invited, but also know a flare up could hit at any moment or simply just have zero energy to do anything.

My weekly routine now is take my once a week medication on Thursday, relax on Friday and do a half day on Saturday, By doing only a half day on Saturday, I am okay for Sunday morning and church. But last Saturday I had a funeral in the afternoon and it was important for me to be there. That meant a full day on Saturday.

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The result? I woke up Sunday with no energy and almost canceled my Sunday morning group and stayed home from church. But then I prayed and did my self talk of , “Man up and go”, and got ready. I was drained but went.

Am I ever glad I did.!!! An American friend from church joined and helped with my Sunday class for the first which was spontaneous. The students were delighted. During worship after class, a young Hispanic woman sat next to me. We talked after worship and realized we knew each other from when I visited a Hispanic church when she was a teen. We talked about ways she can help with ministry. Then as I was walking in the church, a woman and two teens were talking. I know the woman and her husband speak Spanish, so I greeted her in Spanish. The two teens said, “we need a Spanish group in church.” That is something I have wanted to do for a LONG time.

After church I came home and enjoyed a three hour power nap full of gratitude for how the Lord worked Sunday morning.

Thank you for reading. God Bless.

Music Mondays- Same God by Hannah Kerr

God who created all we see is the same God who loves us and is always with us. There is never a moment God is not with us.

He is with us the middle of everything we go through, I have experience his presenced on days when chronic illness flares. I feel his presence by the songs in my spirit.

I have experienced that in down times through the little and big ways he lets me know he is with me.

Whatever you are going through, the same God who created everything you see, the stars at night, the trees, the birds,, is the same God who sees you, knows you. knows your struggles and loves you.

Thank you for reading. God Bless.

Music Mondays- Peace Be Still Featuring Lauren Daigle with The Belonging Company

I don’t want to be afraid
Every time I face the waves
I don’t want to be afraid
I don’t want to be afraid
I don’t want to fear the storm
Just because I hear it roar
I don’t want to fear the storm
I don’t want to fear the storm

I love this recording by Lauren Daigle. When I listen to it, it reminds me to look to Jesus in while going through difficult times such as waking up with pain wondering how I will make it through a day.

There are two times recorded in the bible involving Jesus and his disciples. followers, being in a storm while in a boat. There was the time Jesus walked on the water through the storm and the time Jesus was sleeping in the boat when the storm came.

In Mark 4 we read about Jesus sleeping in the boat in the midst of the storm. The disciples were freaking out and woke him up. Jesus simple said 3 words, “Peace, be still,” and the storm stopped and the waters calmed.

In Matthew 14 we about Jesus walking on the water in the midst of a rough waters and says to his disciples who thought he was a ghost. “Take Courage, It is I. Do not be afraid.”.

Storms come and go in our lives. We face difficult times. In the difficult times, Jesus comes to us just as he did the disciples. Our worst problems he can quiet with a few words.

When Peter tried to walk out to Jesus on the water and faltered, Jesus didn’t let him drown. Jesus picked him up out of the water.

What so easily overwhelms us, Jesus has power over it.

I live with chronic illness. Jesus comes to me in the mornings as I pray to give me strength for the day.

We might live with depression, anxiety, eating disorders, addiction, yet Jesus will come to us.

Sometimes Jesus calms the storms in our lives and sometimes he joins in the midst of the storms and tells us to take courage because he is with us.

Thank you for reading. God Bless.

Wellness Wednesday- Keeping A Sense of Humor

This morning I will go to the Orthopedic Surgeon for an injection in my knee. The injections help delay having knee replacement surgery. He injects hyaluronic acid but I like to tell people it is hydraulic fluid because it gives me a lift.

Photo by Karolina Grabowska on Pexels.com

Keeping a sense of humor while living with chronic illness helps me to not get too down about it. Laughter is good for the soul.

When the Lord restored the fortunes of[ Zion,
    we were like those who dreamed.
 Our mouths were filled with laughter,
    our tongues with songs of joy
.

I love Psalm 126 because it doesn’t just speak about laughter and joy It talks about having been through an ordeal and experiencing the joy of the Lord. Psalm 126 does not deny life’s difficulties. It focuses on the Lord not the difficulties.

Spending time with Jesus gives me the strength to keep going. It keeps me going spiritually, mentally, and emotionally.

Thank you for reading. God Bless.

May Is Awareness Month For………………….

May is awareness month for mental health and for several chronic illnesses including :Lupus, Fibromyalgia, Lyme Disease, Arthritis, Celiacs, and others.

Which ever chronic illness a person is living with, there are some things shared in common such as social life being affected, limited, or in some cases nonexistent. Doctor appointments seem unending and are costly. Some experience loneliness and depression.

One person who will never leave us is Jesus. I love the promises of Jesus and would like to share a few.

John 14:23-
Jesus replied, “Anyone who loves me will obey my teaching. My Father will love them, and we will come to them and make our home with them.”

Jesus wants to be our roommate.

Matthew 28:20

 “And surely I am with you always, to the very end of the age.”

Jesus will always be with us.

I would also like to share a song that has meant so much to me. It is My Prayer for You by Alisa Turner.

Thank you for reading. God Bless.

Don’t Judge A Person by Their……..

You know the old saying don’t judge a book by its cover? A version of that has come to mind for me recently of- don’t judge a person by their title.

Four years ago I told my GP that I thought I had psoriatic arthritis because it runs in my family and I had a large red patch on my elbow. My GP said it wasn’t psoriasis. However, he referred me to an orthopedic specialist, who in turn, referred me to a rheumatologist. The rheumatologist diagnosed me with Celiacs but said I did not have psoriasis or psoriatic arthritis. A dermatologist said the same.

Photo by Karolina Grabowska on Pexels.com

Two years ago I was referred to a different rheumatologist who diagnosed me with Fibromyalgia and who also said I did not have psoriatic arthritis.

What did all of them have in common? None of them looked at my scalp.

In March this year I went to a different dermatology clinic because that red patch was back again on my elbow. It had been coming and going. But this time it was accompanied by pain in my elbow. I did not see the doctor. I saw the physicians assistant. At first when the appointment was made, I was concerned I could not see the doctor first. I was WRONG.

The physician’s assistant was the first medical provider who looked at my scalp. He was very thorough. When he looked at my scalp, he said, that’s psoriasis. The person with the lesser title was the person who was the most thorough.

Don’t judge a person by their title.

Thank you for reading. God Bless.

Wellness Wednesday- Why I Share about Living with Chronic Illnesses

The minute you tell someone you are sick you suddenly become the disease not a person

This line is from the movie Midnight Sun which is about a teen girl with a rare illness. While it is true that for some people once they hear about someone being sick it is all they see, when I heard that line it caused me to think about why I share about living with chronic illnesses.

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There is a bit of a back story. After the Lord intervened and helped me recover in 1995, I began to share with people, “I should be dead but I am not.” I did so to get their attention so I could share my story and by doing so share Jesus with them.

As Paul wrote in 2nd Corinthians 12:9

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

By sharing about my experience, my hope is that others are drawn to Jesus.

Another huge reason is to encourage others who live with chronic illness. My thinking is along the lines of what Paul wrote in 2nd Corinthians chapter 1:

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer.

I am not concerned with receiving sympathy. I am not concerned with what others think of me at this stage of my life. My one overriding concern is that whatever I experience, it is for Jesus and to share him. This life is so short. I am nothing like Paul and can only wish to echo his words to Timothy:

 I have fought the good fight, I have finished the race, I have kept the faith

Thank you for reading. God Bless.

Full Circle Moment with Doctors for me

This story from my life might seem like a weaving and winding road or better yet a maze or perhaps even a jigsaw puzzle,

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Four years ago I told my GP I thought I had psoriatic arthritis. He said the rash I had was not psoriasis but he wanted me to see an orthopedic specialist about my knee. I went to that specialist who told me knee replacement is in my future but he wanted me to see a rheumatologist to find out why I have widespread pain. I went to the rheumatologist who diagnosed me with Celiacs Disease. So we thought that was it.

Two years ago I had a mild ANA test, so my GP wanted me to go to a rheumatologist. I went to a different one but days before I went there I was put on steroids for bronchitis and the ANA test came back negative there but he did diagnose me with Fibromyalgia and Degenerative Disc in my neck.

So after spending a lot of money on specialists, ones I mentioned in this post and others, I decided at my age what is the point. I decided to stop seeing specialists for rheumatology.

My GP had me see an ophthalmologist late last year who diagnosed me with Sjogrens. I thought well that is enough no need to see anymore specialists.

Lo and behold due to a rash on my elbow that won’t go away I went to a dermatologist yesterday. He found psoriasis in my scalp. my elbow and other spots. The issue that started this winding road 4 years ago has come full circle. I was right, I have psoriasis and next I will go to Omaha to the University Medical Center to see a- you guessed it- rheumatologist. Only this time I will have a diagnosis or two, well five, to take with me.

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Such is the life of a spoonie-person living with chronic illness. We bounce around from doctor to doctor. I am once again a pinball patient.

What keeps me sane? (some may question that) One word- Jesus. If it wasn’t for my prayer time with Jesus I do not know how I would cope with it all.

Thank you for reading. God Bless.