Living with chronic illness means mornings waking up with pain and stiffness. On such mornings, I give the day to Jesus and ask him to help me be a blessing. I love this song Come Alive-Dry Bones by Lauren Daigle. Some mornings I listen to it as I ask Jesus to help me be a blessing.
Dry bones is a reference to Ezekiel 37 in the bible where God shows Ezekiel a valley of dry bones and that God will breathe new life into them.
Jesus can breathe new life into us, into our dried up lives. He can restore broken relationships. He can give strength to the weak. He can lift up those who are down in spirit.
May this song be a blessing to you as you start your week.
Last Wednesday I had a follow up appointment with my Rheumatologist. It went well and I was pleased with the appointment.
Finding a good Rheumatologist who takes time to listen is so important for getting a diagnosis especially with something like Psoriatic Arthritis that does not show up on blood tests. I am grateful that after two previous Rheumatology clinics, I went to the one that is my current clinic.
Getting a diagnosis for any chronic illness is like going through a maze. It can take years. For me it took five years after first seeking help. As I think back, I realize I had symptoms long before I sought help. For example, I thought I had dandruff when I actually had psoriasis on my scalp. Since starting treatment, it has cleared up.
It is so important to be our own advocates. We can do so by keeping a journal of symptoms, asking questions, and seeking a second opinion if needed. I think of the woman with the issue of blood in Luke chapter 8. She pressed in through the crowd to touch Jesus. Those of us with chronic illness need that kind of persistence.
A few more thoughts:
My blood tests came back with good results. I was worried because I did not study for them.
I realized I was born to be an optimist. My blood type is B Positive.
Today is my follow up appointment with the Rheumatologist at the University Medical Center Nebraska. In June he diagnosed me having Psoriatic Arthritis and prescribed a medication. I have made a pros and cons list of the medication with the pros far outweighing the cons. Progress has been made. I am thankful for the progress and for Jesus getting me through the first months of treatment.
So off we go into the wild blue yonder to see a doctor who actually doesn’t stress me out. When I saw him in June, after spending an hour with him, my blood pressure came down- A LOT. lol
A friend is taking me there. It will be a good time of fellowship before the appointment. I never know what will be done at the appointments, so an ounce of prevention kind of thing. Also I don’t need the stress of freeway and interstate driving right before the appointment.
Also Hello September my favorite month. I love September because my morning class starts and autumn begins. I would say college football but my once great favorite college team has been terrible in recent years.
Yesterday I shared Jesus Will Come Back For Us. As someone who lives with chronic illness it caused me to think about what I won’t miss after Jesus comes back for those who believe in him.
I won’t miss morning stiffness.
I won’t miss chronic pain.
I won’t miss constant fatigue.
I won’t miss doctors.
I won’t miss flare ups.
The list could go on of things that I won’t miss. But I also realize what keeps me going through it all is something that I will miss. It is what gets me up and keeps me going. It is what keeps my attitude from going down. It is my motivation for my life.
What will I miss?
I will miss sharing the love of Jesus with people who do not know him. In heaven everyone knows Jesus. Everyone has experienced and continues to experience the love of Jesus in heaven.
There is one more thing I would miss. I would miss teaching English Second Language. I don’t think there will be a need for that in heaven.
What I won’t miss causes me to wish for the return of Jesus today. What I will miss causes me to hope for more years in this life.
Yes each Friday I deal with a hangover. Are you surprised? I am a Christian blogger and writing about a hangover.. Okay I admit it. I am having a little fun with the post.
It is what those of us who take Methotrexate call the Methotrexate hangover. I take it on Thursdays, so each Friday even though I have thoughts of doing something, those thoughts quickly evaporate as I realize all I really want and perhaps can do is sleep and relax.
I gladly put up with it because the medication has already improved some aspects of life for me.
And then there are those strange cravings. Chocolate ice cream with bananas, chocolate ice cream with Greek yogurt with any fruit, corn chips, but yesterday I did manage to include one healthy meal of chicken and veggies. 🙂
Saturday comes and I am ready for the coffee shop. Sunday comes and now I can stand during worship without back spasms. Morning stiffness is lessened, but I still require my morning coffee. 🙂
Speaking of Saturdays, due to school starting Fridays will become the day I take my meds, so Saturdays will be my new Methotrexate hangover day.
September 1st I will go see my Rheumatologist for a follow up. Hopefully no added meds. I do have some promising news to share with him.
Just a glimpse into my spoonie life-someone living with chronic illness.
Currently I am halfway through my first prescription for the medication I take for Psoriatic Arthritis. The common wisdom is that it can take up the three months to see results. I am six weeks into taking it and have seen improvement already. I realize each person’s experience differs and at times a lot.
When I first started it, I could barely walk across a room without having back spasms. Now I am walking four to six blocks a day which would be longer but that one knee ugh.
What really caught my attention was standing during worship as we sing at church. I had not done that for a long itme.
I still have cravings the day I take it and the day after. Chocolate ice cream with bananas is one. For some reason Fritos Corn Chips is the other. That one is surprising because I hadn’t eaten those in years.
My hope is to make so much progress that I resume my international travels next summer. 🙂 But I am also realistic knowing flares can come unexpectedly.
It seems longer ago than only seven weeks ago that the Chief of the Rheumatology Department at the University Medical Center I went to in June told me, “You present us with an interesting situation.” Words no one wants to hear from a doctor. lol
Whether more progress occurs or not, the main thing to me is to do as Paul wrote in Philippians 3:
Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me
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.
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.
An experience I will never forget is being in Rio do Sul Brazil, visiting a friend’s acreage that had fruit trees, and picking an orange off the tree and eating it. It was so sweet and delicious. Nothing like fresh fruit as in freshly off the tree. 🙂
The one thing I like about summer where I live is the plethora of fresh fruit. I love fruit and actually can’t choose a favorite. I also love fresh veggies. Needing to eat gluten free doesn’t bother me so much because I can still eat fruit and veggies and of course meat. Sadly in the winter and spring we don’t have much variety, so I enjoy as much as I can while we have it. But I know they will be back the following summer.
It is the unknowns of chronic illness that are not so easy to handle. What will the lab results be? What will the doctor say this time? Will I have a flare up? Will I need to let go of things I love to do?
Part of living with chronic illness is wondering if things we enjoy will still be doable. One thing I love is international travel. COVID shutdowns took away plans for summer 2020. Spending money on doctors prevented travel plans for this summer.
I also wonder about 2022. If the treatment I am on works well, I hope to travel internationally. If the treatment does not work well enough, will it mean letting go of one of my favorite things to do. I love experiencing other cultures, drinking coffee in another country, eating the foods of the culture, and best of all interacting with and getting to know the people.
So I will be praying that traveling to other countries and sharing the love of Jesus is not one of the things I will have to let go of because of living with chronic illness.
Yesterday I shared about chocolate ice cream being my breakfast the day after taking my once weekly medication for psoriatic arthritis. I had thought I might go to a coffee shop, but something happened.
I stopped by my church office to pick up something. While I was there, I talked with a man who can video the short films I want to make based on short stories I wrote in my other blog encounterswiththeancients.com. I also spoke briefly with the woman who is our Worship Leader at church about filming and about my writing and drama experience.
There is a cereal that uses the slogan breakfast of champions. I cannot eat that cereal because I have Celiacs. A normal breakfast for me is an apple and a cup of Greek yogurt. But I decided to treat myself the day after I take Methotrexate the medication I take for Psoriatic Arthritis.
So what is my breakfast of champions the day after you might ask? Thank you for asking. My breakfast the day after is chocolate ice cream. 🙂
Chocolate ice cream is easy on my stomach, tastes WONDERFUL, and my little way of rewarding myself.
My schedule is clear today, so that means a day of relaxing. I think a coffee shop will be on my agenda later today, My bed is telling a nap might also be on my agenda for the day.