Wellness Wednesday- Dealing with Doctors

“I don’t know why while I take prednisone my joints feel much better and as soon as I am off prednisone, I have such intense pain.” I shared that with my then GP. His response was to ignore my comment and focus only on what he wanted to go over.

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That is called Medical Gaslighting. It is when a doctor downplays a patient’s concerns, ignores them, or tries to convince a patient it is imaginary or due to something else.

Anyone who has lived with chronic illness has probably experienced this at least once.

“I don’t want an autoimmune illness. I am not a hypochondriac, but these things run in my family. My older brother has M.S., my older sister has Psoriatic Arthritis, asthma runs in my family, I have relatives with Type 1 diabetes.” I told my current GP that a few years ago. After I told him that, he began to take me seriously.

An excellent book for anyone about dealing with doctors was written by a doctor whose blog I follow. Phoebe Chi is a doctor and her blog is phoebemd.com. Her book is Being Empowered,,,, for a healthy heart. Just the first chapter on being an empowered patient makes the book so worthwhile to buy and read.

After reading her book, I changed how I approach doctor appointments. I kept a symptom log including how often, when, triggers etc. I also began asking more questions during appointments. I became an informed and empowered patient.

Since 2017, I have seen 2 different rheumatologists, a gastroenterologist, two different dermatologists, two different orthopedic specialists, two different physical therapists, spent half a day being x-rayed, seen an ophthalmologist, had so many blood tests and more. In only 3 years, I have been diagnosed with Celiacs Disease, Fibromyalgia, Degenerative Disc is my neck, and Sjogrens. That is on top of the Hashimoto’s Hypothyroid and asthma I already knew I had.

I share all of that just to let you know that I KNOW the frustration of dealing with many doctors.

What has helped me?

1- I pray before I go to a doctor. I invite Jesus into the process. This helps me to focus and also asks the Great Physician to come along with me.

2- I keep a journal of symptoms such as when I have a low grade fever and for how long, rashes, pain, etc.

3- I let each specialist know that various autoimmune problems run in my family.

4- I ask questions.

5- I read information from reputable sources such as Web MD, Mayo Clinic website etc.

Thank you for reading. God Bless.

A Reprieve- Sort Of- For Now

I have had a bad knee for a while. It is bone on bone. Walking is a drag in the literal sense as I tend to drag my leg sometimes. I had an appointment with an Orthopedic Surgeon yesterday. I thought he would say knee replacement surgery.

But I was granted a reprieve, sort of, for now. 🙂 lol

Instead it will be 3 injections, one a week for three weeks, to try to stave off said surgery until COVID clears up. As of now hospital beds are filling up with COVID patients in my city.

In the picture is me clowning around a bit when I had an injection in said knee this past June.

Does it sound weird that I am thankful to have injections? Well if it means avoiding surgery, at least for now, I am all for it. 🙂

As the surgeon was looking over my records, he said, “Maybe you should see an Endocrinologist.” My response was, “that might be a good idea.” But inwardly I was thinking more along the lines of, “ugh another specialist.” That is the life of a spoonie living with chronic illness. Life is a line up of appointments with specialists. Yes, I know one should be honest, but hey this guy might be doing a surgery on me in the future. 🙂

I am thankful the first injection will be the Tuesday before Thanksgiving and hopefully it won’t put a damper on my Thanksgiving plans.

So today I am thankful for injections. 🙂 haha

What are you thankful for?

Thank you for reading. God Bless.

A Glimpse into My Spoonie Life- Chronic Illness

Living with Chronic Illness presents me with minor inconveniences and also major obstacles at times. My hope is to handle either scenario with God’s grace and to extend grace to others. It also entails extending grace to myself, because let me tell you, I do not always have patience with obstacles in my way. I used to play American football when I was younger and the mentality of run through obstacles stays with me at times.

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A minor one happened yesterday. One of my chronic illnesses and the one I find easiest to manage is Celiacs Disease. I have done well with being gluten free in my diet since I was diagnosed. But there are times it can be socially awkward.

Yesterday one of the moms in my class was so kind to offer me a piece of cake. She did not know I have Celiacs. I explained to her why I can’t eat cake. I did not leave it at that. I also told her that she was so nice to think of me and bring me the cake and that I really appreciated that. She smiled when I said that to her. It is a small thing for me, but to her for her teacher to say that meant a lot.

The major obstacles are the ones that I resist the most. Due to difficulties from Degenerative Disc Disease stemming from an accident when I was younger, and the pain I am always in from Fibromyalgia, I could probably get a permit for my car for handicapped parking. But I do not want to let it win. By it I mean Chronic Illness.

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Funny though that I readily accept the need to naps in the afternoon due to fatigue. Fatigue is one of my constant uninvited guests. I love naps. As I round the corner financially, my hope is to get a comfortable recliner for my home office chair. Then I can sit at my desk, which is really a 5 foot table, and work and write but take a nap as need be. It is one of my dreams. 🙂

I can’t imagine going through all of this without Jesus. If this life was all I had, I would not feel any hope. But with Jesus there is always hope. By giving him whatever we experience, he can do amazing things.

Just a glimpse into my life with Chronic Illness. My wish is to help readers understand what people they may know go through.

Thank you for reading. God Bless.

Music Mondays- Louder by Alisa Turner

I love how Louder by Alisa Turner starts- “I am no victim though I have walked through fire.”

Those are lyrics by a woman who has suffered with Lyme Disease, so she knows suffering.

I also love the lyrics:

I have a weapon
That all of hell can’t stop
It is my worship
My song is waking up

When we worship God in the midst of hardship, we invite him into our struggle. It also lifts us up and lifts our focus to Jesus away from our problems.

There have been times in my life that due to chronic illness it seemed I could not do anything that day. But after spending time praying, listening to worship music, and giving the day to Jesus, wonderful things have happened both small and big.

I hope this song lifts you up today.

Thank you for reading. God Bless.

Naps for Self Care?

My pastor often says that sometimes the most spiritual thing a person can do is take a nap. There is a truth behind his comment. We were created having body, soul, spirit and mind woven together. If one gets out of balance it can affect the others and it is so true in regards to our physical selves.

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God knows this about us and has shown it. A classic example for me is the prophet Elijah in 1st Kings 19. Elijah had been through an ordeal, had been on a journey. Elijah was feeling down spiritually due to exhaustion and was hungry. I love reading this section of scripture in 1st Kings 19:

“Then he lay down under the bush and fell asleep. All at once an angel touched him and said, “Get up and eat.” He looked around, and there by his head was some bread baked over hot coals, and a jar of water. He ate and drank and then lay down again. The angel of the Lord came back a second time and touched him and said, “Get up and eat, for the journey is too much for you.”

God sent an angel to care for Elijah. The angel gave Elijah food and water. Then Elijah went back to sleep. The angel came back a second time and again gave Elijah food and water. God knew Elijah needed physical care of rest, food, and water.

Self care is a buzz word at times. It can be overdone. But self care can be appropriate. We need to take care of ourselves, so we can bless others.

Living with chronic illness, I have come to appreciate a schedule that allows me to take naps in the afternoons. Sometimes they are short ones and sometimes they are power naps of over an hour.

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A great example for me was last weekend. I was in the midst of a chronic illness flare. During blogger chat on Saturday my little sister in Jesus Vanessa of braveblessedandbeautiful.com prayed for me. After an Instagram interview that day, I took a 3 hour nap. That was followed by a 2 hour nap and a 10 hour night of sleep. On Sunday I slept a lot too. It helped so much. I was doing much better by the time Monday came around.

So if you take a nap, maybe it is God working in your life. 🙂

Thank you for reading. God Bless.

What Helps Me Keep Going While Living with Pain

One morning last week, I had a conversation with a fellow teacher at the school where I teach in the mornings. I shared with her that I need to have a knee replacement surgery, but I will wait until the end of the school year. She asked me if it was painful, I said yes, but that it wasn’t a problem. She couldn’t quite understand how I could say that.

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As someone who has lived with chronic illness for over 25 years, pain is something that is a constant in my life. It is only a question of how much on any given day. I shared that with her, but she still did not quite understand where I was coming from.

The conversation was just an example of what it is like to be a spoonie, someone with chronic illness, trying to explain to someone what my experience is like. In my mind, pain is just part of my reality, so just press on with life.

Knowing that Jesus understands pain and that I can share my experience with Jesus when I pray, makes the difference for me. When I pray, it is a reminder that everything in this life is temporary. It is eternity that matters to me. I know that in heaven, there will be no pain. So each day here in this life, is one day closer to when Jesus takes me home. Until then he has work for me to do here- Share and show his love to others.

That is what keeps this spoonie going through the pain and fatigue.

Thank you for reading. God Bless.

Accept Limitations Due to Chronic Illness?

Having enjoyed 11 ministry trips to other countries, 4 of which I traveled alone, it could be said I embrace adventure. The 4 trips I traveled alone were my favorites ones because they gave me the opportunity to see how God comes through for us. It was awesome to experience those just God and me moments.

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So when chronic illness caused me to consider buying a cane, it was not something I embraced. I still haven’t bought one.

The other day a married couple from church brought some food to me. The husband saw my recycling and offered to take it for me. I thanked him and he took it for me. In my city we need to take recycling to one of many locations. I was pleasantly surprised he offered to do so.

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Shortly before I woke up Tuesday morning, I dreamed that I had a package and needed to walk home. As I was considering the long walk with a bad knee, I saw I friend of mine from church with his pickup truck. He gave me a ride home.

Normally I don’t put much stock in dreams. But as I prayed Tuesday morning, I felt the Lord showing me he will help me through friends at church. It felt peaceful, but I have to admit as a person who has not slowed down or let limitations hinder me for over 25 years of living with chronic illness, it is an adjustment.

I don’t know where this is going. I do not intend to slow down. Perhaps let others join me in the journey.

Thank you for reading. God Bless.

Up and Down Week with Chronic Illness

This week has been a up and down week so far. Sunday I could barely get out of bed.

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Monday I go a lot of writing done for my notes on John.

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Tuesday my Citizenship classes began again but I had a headache most of the day which caused me to miss some appointments online in the morning.

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Such is life with chronic illness.

So in the evening it was time for some music. Tasha Cobbs songs are special for me when I need to be lifted up. When we take time to praise and worship God in the midst of difficult times, it helps to lift heaviness off our spirits.

How is your week going so far?

This is the song I listened to on repeat. I love Tasha Cobbs.

Thank you for reading. God Bless.

Being A Friend to Someone with Chronic Illness

In saw something a doctor said about people who live with chronic pain. He basically said that people who live with chronic pain learn how to not let it show and go about life not letting many people know. He also said that the pain many people with chronic pain live with would cause a person without a chronic illness or condition be flat on the floor.

Perhaps it is a but of an exaggeration, but there is truth in it. People who live with chronic illnesses or conditions can tend to not let on to most people what they are going through. We hear things like- but you don’t look sick. maybe you just have stress, have you tried yoga, the list goes on and on.

My friend Barbara of mylifeinourfathersworld.wordpress.com shared something she found about people living with chronic illness with me:

If you have a friend living with chronic illness, these are some good things to keep in mind.

Some other suggestions I would have are:

Pray for your friend.

Spend an evening with them at their home watching movies.

Help them with cleaning or things they need done.

Chat with them on social media.

I am fortunate that my chronic illnesses do not prevent me from enjoying activities. I am wise in which ones I join in on and yes there are times I leave early because of fatigue.

Also please be careful about offering advice. There probably isn’t much advice your friend hasn’t heard and if it is a clique or ‘common sense’ it probably won’t help.

Just some thoughts if you have a friend living with chronic illness.

Thank you for reading. God Bless.

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A Secret About Me

Yesterday I was joking with my pastor via Facebook Messenger. He likes musicals, so I sent him a message saying I may or may not have watched Les Miserables last Friday evening, but I would deny it to protect my rugged image. He commented that he likes the movie version with Hugh Jackman. I replied I might have watch that one.

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The secret about me, and don’t tell anyone because I would have to deny it, is that I enjoy watching a variety of music on Youtube which includes Classical, Opera, and songs such as The Prayer.

Philippians 4 says:

“Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.”

Of course primarily I find that in worship music and reading the bible, but there is beauty in this life. I find it relaxing to sit back and enjoy beautiful music at times. In the same evening I might watch videos such as the one I am sharing of The Prayer and then also listen to some music in Spanish, Portuguese, and perhaps some Peruvian music from the mountains using the wooden pan flute.

Even in our fallen world there is beauty. I find enjoying it helps reduce stress and brings me joy. Living with chronic illness it helps to enjoy beautiful things like music. But don’t tell anyone my secret and ruin my rugged image. 🙂

Thank you for reading. God Bless.