Sometimes the Chronic Journey is Scary

I don't know where to start..... so much has happened since last week. Sometimes you go for a checkup and are nonchalant about it. This was one of those times. I had a routine ophthalmologist appointment. I have to go every year to make sure that the Plaquinel I take for Sjogren's doesn't damage my eyes.

During one of the eye tests, the doctor noticed that there was optic disc edema. He talked to me for a long time and I could tell he was worried. Because I was having some random stabbing pain in the temple, he got even more worried.

He said that I need to see a Neuro-Opthamologist in order to find out if I had Giant Cell Arteritis. This would be an emergency, because you can lose your sight. He said that I wouldn't be able to get an appointment for many months, and that I should go to the ER.

The next morning, hubby took me to the ER at a major research hospital near us. We waited and were taken to a room after about one hour. We saw regular doctors and then two opthamologists came to examine my eyes. They said the only way they could screen my eyes was to do an MRI.

I had questioned my ankle surgeon earlier and was told that the manufacturers of my 3D printed Talus bone couldn't tell me whether or not it was safe to have an MRI. That was so frustrating, because I was asked over and over to let them proceed with the MRI.

Because I didn't know what would happen, I said that I couldn't. Finally, two radiologists came and told me that they knew what was in the replacement bone, and that it was safe. That's all I needed to know. I said yes.

The radiologists were told that I was sensitive to the gadolinium, and that I would need pre-test Benadryl. They got it mixed up and thought I was allergic to Iodine and didn't prepare me. When we got to the testing room, I asked about the Benadryl. They said that they didn't have time to wait for the Benadryl to take effect and did the MRI without contrast.

The MRI showed that I had blood clots. The neurologist came and told me that I really needed to have an MRI with contrast. It wasn't my mistake, but I needed to repeat part of the MRI.

I was injected with Benadryl, and then the contrast. The MRI was repeated for only about 10 minutes of the original 45 minute test. This showed something totally different. There was a mass, and not a blood clot.

The neurologists were coming and going quickly from my hospital room. They were all conferring and decided that I had a Small Incisural Meningioma. This is usually a benign tumor, but can press on a part of the brain and cause symptoms.

Because I was having new headaches and blurry vision, this made sense with the diagnosis. There are treatments and of course, surgery. I don't have any idea what my treatment will be. I will see the Neurology Surgeon soon.

I really dread that. For now, I'm trying to be positive and praying that it will be so small that they will only watch it. It's in a risky area for surgery, so I'm told. Ugh. It's not like I want brain surgery anyway.

I'm thankful that the neurologists didn't think that I needed an emergency visit with the neuro-surgeon. Hopefully that means that it's a slow-growing tumor and won't cause me serious symptoms. There is chance of seizure and other things.

I'm trying to think of other things. My home is still needing work. After moving in, I still need to decorate. There are no pictures hanging on the walls and a box or two left to unpack. My flower beds need serious weeding, and I'm glad that it's a very small area. I hope that I can get some of this work done.

Decorating is fun, but I have to do some creative shopping. I'm checking antique stores and thrift stores for items that I like. My favorite style is English Cottage and I hope to create a warm, comforting home.

Comfort is my first priority, because with all the chronic back pain I need soft surfaces. It's exciting for me to "hunt" for the things I really love. I just have to not spend too much money.

I will enjoy some small treasure hunts and will probably find something that makes me smile. Each day is so precious.

@2025, copyright Lisa Ehrman

Disclaimer: I'm not a medical expert. This post contains my opinions and experiences and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.