Not Really Alone

(Some might be repetitive) An acquaintance at the church nearby asked me who was going with me to my doctor’s appointment. Let’s back up. I’ve had HORRIFFIC pain from toes to calf and I was sure it was nerve pain. I had weird skin issues on the other foot and the closest photo that Google found when I did a photo search was a type of eczema. It starts with painful blisters. Everywhere on the foot. Under, on the side, between the toes. So when you walk, you step on them and want to cry. When you wear shoes or socks which naturally bring your toes closer, you want to cry. Then they become discoloured patches. So, I’ve had even less sleep than the usual no sleep due to AS thing.

I’ll do a separate post on what THIS psoriasis looks like. From start to how it ends up when the blisters have gone flat. This is a preview.

I arrived at the doctor’s rooms and sat down to wait for him. The acquaintance- we haven’t hung out, don’t chat often, so I feel weird saying friend- asked me when my appointment would be, and who had accompanied me. Nobody had. I get so envious when I see couples at the rheumatologist’s rooms. It’s a serious disease that takes us there and support is wonderful. I’d love to have someone else with me when she tells me my back is not stretching as far as it had been. I want someone when there will be bad news. Or just further instructions.

I got home and funnily enough, our Vi also asked me if I’ve always gone to the doctor alone. She even felt like accompanying me! What his it with these ladies? Same day? Out of all the appointments Vi has seen me go for, she asked after THIS one? Funny coincidence.

I feel alone some days, and I’ve seen patients who feel even worse than I do, anxious, legs shaking, nervous chatting… I’ve been going to specialists since I was three years old so I’m used to all kinds of doctors but they aren’t. Im happy I could help the Gastro one who thankfully ended up not severely sick. That’s what I wish! To calm people and see them through their trauma and then move on to the next one. My friend is going to a specialist soon but I can’t be there though I want to be. She is me and I am her. Alone at the doctor’s.

But look at this!

The sound might be bad so you might not hear clearly. I had tried to wear shoes in the morning and leggings. My nerve damaged foot feels like it’s on fire all day and night. Add shoes and it’s worse. The leggings too and the pressure they exert don’t help. I was in the kitchen and my irrepressible six year old was with me when I stumbled which made me step hard with the nerve foot. I couldn’t control my reaction to pain, so I cried out, and she lovingly asks about me and offers to pray for me right there and then as she knew God would heal me immediately. How can I feel alone when my six year old stops and prays for me?

We have another first for our non speaker.

This is a big deal for us. Our not very talkative twin got out of her room and went shuffling along to the freezer, nobody heard her! She knew what she wanted! She took out some diary free ice cream and took it to big bro to open. Never done that before.

I may be going alone, but I know there is a girl friend somewhere, waiting to hear what the doctor will say. And I’m thankful for that emotional support.

We are starting the anti psychotic medicine commonly known as Abilify! On my ten year old. Her anger and aggression and snapping are extreme. So we are hoping she will be able to find a calmer existence. When I gave it to her this morning she asked what it was and I explained what it’s for. She asked if it would help her self harming. I asked when the most recent time was. She said it was when I’d sent her to time out for telling her sibling to lie to me to get something I’d already told her they wouldn’t be getting, (Their Samsung Tablets) that she then bit her knee when I closed my door because she felt abandoned. Sometimes I bring her into my room but then her siblings come and give her lots of input and fun that there’s no time for her think about never lying again. (An impossibility for her🫣) Other times, I’m very busy or recording videos. That’s exactly what we want to reduce- a destructive anger that builds up even when she’s wrong.

Takes a long time to start having an effect, about 6 weeks to two months! I’ll let you know if it works! We only took the first half tablet this Sabbath morning. So far, the side effect she has had is heat regulation problems, which is temporary. After a week, she will have an entire tablet. I hope it treats her well and HELPS us all.

Here are some random pictures. 😅

I wasn’t with them. I don’t know where our ice cream thief went. She was with them.

I hope I’m able to find a way to bring peace to my daughter.