Testing! Testing!

My poor girl had the same issue with starting a new grade level yesterday morning. Grade 2 Reading (Literature) and she panicked just looking at the first page.

What the OT is seeing during assessment is exactly what I’m seeing with her school work. It’s a mix of both so you can’t even tell her, “No, don’t worry, it won’t be difficult!” because it very well might be. It does make me worry even more about her skills. Or rather, her future.

Before the appointment yesterday, I’d told them how she feels bad she’s not at grade level but at the same time is not doing great even now. We’ve been doing contractions eg. Will not to won’t for ages but she doesn’t remember the term even though every day the book asks her to “Correct these contractions” or match the phrase with its contraction…” Same with prefixes. We’ve been doing them and she knows how to find the root word, but she freezes when she has to tell you what it is. And she gets it wrong. It’s like her brain is a sieve and information falls out with only remnants left. I see it often with Zulu words. She asks me multiple times over multiple weeks, what a word means. I don’t know how to make things stick.

I don’t know how their brother did with his part of his assessment with his occupational therapist, but Twin A did wonderfully. She told me as soon as they got back that she tried her best to remember something and she actually DID! She did “an amazing job!” Which was confirmed by her therapist.😊I wish I could share her abilities and confidence with her sister. My boy is relaxed though he thinks he has better skills than he has.

You just want your children to be ok! You want them to have a bright future. But it’s becoming dimmer and dimmer for my 11 year old and I wonder what that report will say. Last time’s was already sad enough with her emotional age so much younger than her actual age which I still see today. It’s more that her challenges hurt her emotionally. That is the part that makes the heart ache. And I can see we will have a lot to take in when they’re done with their assessments.

Another night with multiple wake ups, night sweat and pain, might as well type! I’ve noticed that my mouth dries up when I talk. Doing videos is becoming frustrating. Mouth closed, not as big a problem. Why?

My friend’s question made me put all my symptoms together and do a search. It’s all still pointing to Sjögren’s disease which I really hope it’s not! I went to a support group and oh my word, I see why Venus Williams had to take a long break from playing. And also besides age, why she is struggling to get as close as she used to get.

The sore throat I get when I breathe in deeply is just the start! It’s now sore on one side especially and been sore for two days. Your throat can become so dry that you choke and die cos you can’t swallow! What????? Heck no! I already have enough throat constriction worries with AS! So they go to their gastroenterologist for him or her to stretch their throat every few years. 😩They too mention how if they keep quiet, their mouths don’t dry out as much! Just yesterday, I was struggling with my upper lip joining my lower lip in dryness and oh my, their lips crack and tear!! I’m already taking the suggestions and using them. One has been a failure. I’ve been using it already for my horrible lip. (According to my mother and shop workers who ask why it’s so dry.)

And that’s the other thing. Everything goes dry! This disease impacts every single moisture producing gland in the body. It’s good my husband stopped being a husband in every sense when he got his floozy and became her sugar daddy. Cos no way! Menopause already caused problems.

But it’s scary, the same issues I have with my lungs- the fibrotic bands and scarring- happens with Sjögren’s disease too. Kidneys, lungs, heart… And what did I recently say about fearing lymphoma? It increases the risk and lots in the group already have it and have gone on chemo for it. Others had lymphoma before they were diagnosed. And others are currently in treatment. What life is this when every autoimmune disease raises cancer risks? How do you relax when you’re already on high alert due to caring for special needs children, sickness and pain and now have to worry about your AS treatment and side effects and impact of the different diseases I have?

But, I MIGHT have a reason for how slow the rheumatologist has been to respond. I’m hoping so at least. Though your blood test can be negative for it – which my blood was for AS- you have lots of tests. Pulmonologist -already have one and annual tests. I didn’t go last year. I am bad. I will make an appointment as soon as I return from Twin A’s educational psych feedback appointment this morning.

You also have a opthalmologist to test your eyes’ dryness and treat them. You get cataracts so he will then do surgery. You have damage from the dryness which he treats too. Like the scratch I got on my cornea one night.

And the lip! A dermatologist ignored me years ago about the lip. But what if it’s not psoriasis but Sjögren’s? It can start like that and stay as the only symptom for years because Sjögren’s is a slow disease to form.

And one of the scarier tests is the lip biopsy. They need to cut the inside of your bottom lip and pull out salivary glands to check how they are working. Stitch you up and off you go. Inner lip. Remove salivary glands. Nooooo!

Maybe she’s putting together the testing? Maybe she’s on leave.

I am hoping she or the GP if I get no response today, will diagnose me based on symptoms alone. Please!! I need help. See ya later!