The days have been passing by quickly. I really haven’t done anything…except exist. The last few winter days have been very warm here, but now it’s cold again. I have a little bit of a sore throat, all in all, but life’s pretty boring.
I still haven’t taken down my Christmas tree and all the other decorations. This has never happened before and I really don’t like it. As soon as hubby can bring the decoration boxes inside, I will try to take off a few ornaments each day until it’s done. Then, I know I will feel lighter inside.
A few people have made me feel guilty for not attending church. Most people understand that it is so hard and wears me out for days afterward. I can understand how healthy people just can’t believe how horrible it is to overdo it.
I always was hoping that the next drug….the next doctor…..or the next treatment would give me the ability to function again. Each time I’m reminded how it feels to never get better. I want it but don’t really expect it to happen.
My dizziness has gotten worse. I feel very faint when I stand up and sometimes the room will spin. Once I literally felt like sections of my body were collapsing and I got to the floor. It was a new experience which really scared me. Everytime that I have a new physical problem, it turns out to be a bigger problem than I expected.
The tremors led to more tremors that became a daily problem. Then the myoclonus started and got worse over a few months. My jerks have gotten bigger, but not more often. They feel bad when my entire torso jerks me so bad that the recliner moves backward.
I’m not sure what to do about my fingers. I can barely use them for the pain. I’ve had a split or two the last few years but now it’s so much worse. My skin just opens up as if I had sliced it with a knife. Then the other skin on my thumbs just peels off. The layers just keep peeling. When there is healing my skin is very thick, like a callus.
The skin is so tight that I can’t straighten some of my fingers. It will be a long time before I see my dermatologist again. I’m not expecting any help from her. She comes in and tries to treat only one condition. She isn’t caring to check my moles or anything else I have a question about.
When I do have a question about my skin, she answers me as she’s walking towards the door. She doesn’t look at my skin or seem at all interested in helping me. I’m so sick of doctors like that. My rheumatologist is also dismissive and wants to keep the appointments short as possible.
If I ask her a question she instantly starts responding with a quick and shallow answer. I’ve learned more about Sjogren’s by reading and researching online. She holds to the theory that Sjogren’s only causes dry mouth and eyes. She says all my pain is from Fibromyalgia. She doesn’t want to hear about anything complex.
Specialists never try to look at how all my diseases connect, but act like they have no inkling about how all the body works together. It’s so crazy when they answer questions with, “you need to ask your general practitioner.” Ugh. What a vicious cycle.
When my physical body is so screwed up, I really start to get depressed. When I start thinking about my weaknesses, it eventually brings me to my faith in God’s goodness. I truly believe that He’s “working out all things for my good” because I believe the Bible.
Acceptance of my life and where my journey is now difficult, is a daily choice. Each day is challenging and the challenges usually come from a different issue. When I combine the physical struggles with my emotions, no two days are the same. I guess it would be boring to have the same life issues every day.
I’m thankful that the time when I need it most, the peace of God surrounds me. This is how I know that God’s peace transcends any circumstances! What a relief!
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Phil. 4:7
@2023, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my experiences and opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.
