This will teach me to not spend so much time watching YouTube videos by people with the same chronic illness I just started treatment for. Each one I watched talked about how rough the medication is the first few times taking it.
So I went out and bought ice cream and Greek yogurt to be ready for easy eating. I cleared my schedule for the day to be able to stay in bed. I planned out shows to binge watch.
Then I woke up this morning feeling normal-normal for me. I had no side effects. I think it helped that people were praying for me.
So since there are no side effects, can you guess what I will do with a cleared schedule today? If you guessed go hang out at a coffee shop, you are right. 🙂
My goal for today is to stay in the air conditioning. It will be another hot day but not as hot as yesterday. Yesterday we go up to 107 F, 41.6 Today it will only be 95 F, 35 C.
Buyer’s remorse is when a person regrets a purchase for various reasons. I observed that a few times when I sold office furniture in the 1980s. I am experiencing buyers remorse but not about anything I bought.
After several years of advocating for myself, being gaslighted at times medically, being told I did not have what it ended up that I actually do have, seeing various specialists, I got the official diagnosis last Friday. It felt anti-climatic at the time.
This week the reality of the treatment regiment is on my mind. I must confess I am one of those people who reads about meds and potential side effects. After reading about potential side effects, I almost wish I had not been diagnosed. Thankfully I can dialogue with others. One young woman who has what I have and is also a Christian shared this with me in a Facebook message.
“God will meet you where you are, but treatment is the start of a necessary journey that will help you, but know that it will take time.”
Such wisdom at a young age. No wonder I have always been impressed with her.
I will take my first dose Thursday evening. From what I understand, the next day can be a downtime day. So Friday I am planning to be a day to relax, listen to worship music, and binge watch some shows.
I would like to share one of my young friend’s YouTube videos about living with chronic illness.
Yesterday was a double header with doctors for me not exactly the kind of double header a person wants. It wasn’t too bad though.
The first one was a visit to the orthopedic surgeon for an injection in my knee. It was the first of a three part series of something I can’t pronounce. I call it hydraulic fluid lol. It seems to help my knee though. He was kind enough to answer a few questions I have about a few other issues.
The second one was the moment I had been waiting for. It was full circle for me. What started with me telling my GP I thought I have Psoriatic Arthritis which led to a string of various specialists, I received the diagnosis. I actually do have Psoriatic Arthritis. He prescribed a medication for me to take which is a DMARD-Disease Modifying Anti Rheumatic medication.
So after almost five years, thousands of dollars, and other chronic issues being diagnosed- Celiacs and Fibromyalgia, a Rheumatologist at the leading medical center in my state diagnosed me.
We will see how the medication goes. It feels a bit anti-climatic, but now I know. Such is the life of a Spoonie-person living with chronic illness.
I can’t imagine going through all of this without Jesus. My prayer times with Jesus in the mornings have made a difference.
Waiting is something that could be a bit frustrating at times. I am not talking about waiting in line at a check out at a supermarket or waiting for someone to get ready. The waiting I am talking about is waiting to go over test results with a specialist.
Anyone who has seen a doctor specializing in any area of medicine knows what I am talking about. It can be stressful to wait.
I saw a specialist last Wednesday. He left me a voice message saying he wanted to discuss next steps with me. I had been waiting for a week to do so but wouldn’t you know it, I was teaching when he called. Hopefully we can connect today so I can get the next steps. I would much rather wait to get thorough results that have a quick answer.
Waiting on God is not the same. In Isaiah 40:31 says
but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
The phrase ‘who hope’ is sometimes translated’ who wait’. Waiting on the Lord does not mean we nervously wait wondering what the answer or results will be. Waiting on the Lord in Isaiah means spending time in the Lord’s presence hoping in the Lord. If we do that, we will be refreshed and renewed.
So this afternoon I am enjoying time with Jesus while I wait for the doctor to contact me.
Yes, I survived the doctor yesterday. He was friendly, easy to talk to, and informative. Just waiting for him to have liver function tests come back before starting a prescription.
I wondered if the x-ray tech thought I could do yoga. lol
For example, for some x-rays, the x-ray tech wanted me to have my toes pointed inward. While doing so for several x-rays, I wondered why I had to do yoga poses. lol
I may have told some jokes to the nurses. At the nurses station as I was leaving, I told the nurse I was talking to that sometimes I have to stop driving because the tires on my car get dizzy. She thought I was serious at first but the other nurses laughing told her it was a joke.
As the four vials of blood were being drawn, I wondered if they were for tests or for a vampire. lol
The best part was the conversation with my friend on the way there and back. We discussed our Life Group from church, shared humorous stories, and talked about life. It was good to get to know my brother in Christ better.
So pending liver function tests, a new med will be on my list. I survived the doctor. 🙂
The day has arrived. This afternoon I will have my appointment with a Rheumatologist at the University Medical Center. First appointments with a Rheumy can be a bit of a wait. It feels almost a bit anti-climatic.
My friend from church will drive me to my appointment. That is real friendship driving one hour to and one hour back from an appointment for a friend. 🙂 The reason I am not driving is fatigue. I am not sure if I would feel like driving the one hour back home.
I am somewhat hopeful for a diagnosis today. Hopefully a treatment plan can begin. But I am not getting my hopes up. It is wait and see. So off I go this afternoon for another appointment to be x-rayed, have blood tests, and be examined. Other than that it should be a good day. lol
After the appointment, I will reward my friend with a steak dinner at a restaurant for driving me there.
Have you ever had one of those conversations that you realized God arranged for you? That happened for me this morning in church.
My Rheumatology appointment is this Wednesday. After having seen various specialists the past five years, I must admit in the back of my mind I have had doubts about my upcoming appointment.
This morning in church I was talking with a few women who asked me what my appointment is for. I briefly shared with them about my experiences trying to get a diagnosis. One of the women is a retired nurse. She shared with me about how her son has gone to the same clinic I will be going to and how great they have been.
As she shared with me, I realized I am going to the right place. When I walked to the worship center, I thanked God for that brief conversation.
If we are open to God’s leading, he will direct our paths even in little things like the conversation I had this morning,
One week from today it will be time for my Rheumatology appointment at the University Medical Center in my state. This is the top hospital in my state and also happens to be one that has done world class medical stuff such as successfully treating Ebola patients.
Normally this is how I would feel about going to any doctor.
But I feel a certain peace about this visit. When I received an information packet, there was a form to fill out inviting me to part of a research project. When I first saw that, images of me running on a wheel like mice do came to mind. But it is only for anonymous statistical research.
I have been dialoging with a few people who have what I think I will be diagnosed with-Psoriatic Arthritis, It’s not just me thinking that but my GP and a dermatologist too. I have been educating myself about the various treatments as well.
A few humorous things occurred too.
When I was getting my haircut, I told the young woman cutting my hair that I have scalp psoriasis, so don’t worry if she sees red patches, She mentioned she saw one and pointed to where it was. I started scratching it, she said, “well don’t pick at it.” and laughed.
I had been trying to use a medicine for something on the bottom of my foot that I was mistaken when I self diagnosed it. The medicine did not help. It made it worse. I found out what I have there is psoriasis. So much for my medical career. I think I will stick with teaching and ministry.
Just a glimpse into the life of a spoonie-person living with chronic illness.
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.
“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.
It FINALLY happened. My city went down to green on the COVID risk dial. Our mandatory mask wearing is going away. It is time to celebrate. Life is getting back to normal but what the new normal will look like will be an adventure to explore.
When we went from red to orange, I bought oranges to share with the teachers at my school. When we went from orange to yellow, I bought bananas. I am not sure what to buy for going from yellow to green, but I will buy something. I will go to the school this morning to close out my room for the school year. Maybe I will just buy chocolate and candy.
Two weeks from today I will finally have my appointment with a specialist at the University Medical Center in a city one hour from my city. My hope is that there can be a definitive diagnosis now that there is proof I have psoriasis. I am not sure if I will start a treatment program that day but I sure hope so. I am tired of waking up at night with pain in my left hand.
Hopefully the city where my appointment will be will also do away with their mask mandate so I don’t have to wear one to the appointment. I am not opposed to wearing a mask it is just that it wrecks havoc with my asthma.
So we are in the green here-FINALLY and my appointment is only two weeks away. Such thoughts lift my spirits.