Just me at yet another doctor’s appointment. This one was at a dermatologist last Friday due to a rash that was spreading. Had to make sure it wasn’t a psoriasis flare. Next week will be an injection at the Orthopedic Surgeon’s office. Life with chronic illness is a never ending series of doctors.
You may have noticed a change from my post My Realization. In that post I looked like this
I finally paid a visit to a barber and now I look like this
I think I prefer the scruffy look. What do you think?
Visiting the barber is much more relaxing than visiting any doctor. Barbers deal with the part of my body that doesn’t hurt-My Hair. Barbers are better at small talk. Barbers cost less. Maybe I should see a barber for all of my health concerns. lol
Joking aside, I am grateful for the good doctors Jesus has led me to. The Rheumatologist at UNMC is excellent. The Dermatologist office has two good ones. The Orthopedic Surgeon is great. It is just the barber doesn’t stick me with needles, draw blood, or move my body to see if something hurts. I always wonder about that. For example, tell a doctor a knee hurts and the doctor wants to bend the knee. I mean really can’t they just take my word for it. lol
I will continue to go to both doctors and barbers, but I do prefer one to the other.
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.
Today is World Arthritis Day. This is a club no one wants to be in. The club of the various forms of arthritis, rheumatoid, psoriatic, AS, etc. Being part of this club means going through a maze of doctors to get diagnosed, living with chronic pain and fatigue, and more.
It is a club I am a member of due to having psoriatic arthritis. It took six years from the first time I asked if I have psoriatic arthritis until I got diagnosed. I have been to ten different doctors, my GP and nine different specialists. I have been x-rayed to the point I think I should have some kind of mutant super power.
I am thankful Jesus has given me the strength to continue teaching and continue ministry. Some of my fellow sufferers have it worse.
So on this World Arthritis Day, I just want to give a shout out to all of my fellow Chronic Illness Warriors.
I had not been body slammed with a flare up for a while, so when a nasty one hit me Wednesday and Thursday morning, it was rough. Thursday morning my prayer time was basically- Jesus you are going to have to carry me through this day. That was it.
He came through. The day went well. My students enjoyed their classes. My fellow teachers had no clue I was in the middle of a flare up.
A highlight for me was my morning class. On Thursdays we have speakers come. I arranged for a woman doctor come to talk about breast cancer and women’s health issues. The translators were all women. I left the room, so that only women were in the room. The moms asked many questions and when I returned, I noticed the session meant a lot to them. When I introduced the doctor, I told the moms that I want them empowered with information.
While they had their time with the doctor, I was in the school library getting caught up on some paperwork. By being in the library, I could sit in a comfortable chair not one of the plastic chairs in my classroom.
For me a flare up means pain everywhere and loss of appetite. It means wanting to just lay in bed because of no energy. I lessened as the day went on yesterday, but it was a rough day nevertheless. If you want to understand how it feels, imagine pain everywhere except your hair.
I am so looking forward to the day Jesus takes me home or even better returns for his church-The Rapture. Then there will be no pain. 🙂 Until then there are people to show the love of Jesus.
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