I gave up and emailed the rheumatologist yesterday, asking if they can recommend anything for the mouth sores I have in my cheek, tongue… They aren’t as bad as they can get, but they are always there and can’t be ignored. But it’s a small price to pay!
I am praying that this is the start of a new me. The beginning of a journey back to the old me. I washed dishes last night. The most recent time I tried, I hurt my shoulders and wrists just washing one pot. So I stopped. But this time, last night, they didn’t hurt. I got through multiple dishes for the eight of us! Yes, it wasn’t like the old me. I had to stop three times and go lie down and wait for the back and hip pain to subside. My fingers are so painful and swollen list. Bu he f c. V. And by the time I was working on the pots, I was lopsided, trying to take pressure off my damaged right leg. It was grueling. I won’t lie. It was awful. I regretted it big time. Do you know how many dishes and pots and bottles a family of eight creates!? And because they are sick, there are also mugs of the famous ginger garlic mix too that needed washing.
Which reminds me of another win!!
My talking town at the ripe old age of five and a half years old is finally drinking water!!! I tried so hard to get the twins to drink water. The first two were easy! By age two, water was normal. The middle two were drinking but Amarissa pours her water out if I’m not watching her. But the twins! They hated water. I ended up buying a pure fruit juice concentrate and ‘adding’ it to a full bottle of water so that I feel a bit better. I could see the water. And I only add a quarter of the recommended amount into it.
But still, I had wanted them to just drink plain water! And my talking twin has finally done so since last week. I’m really happy, people!! And she’s so proud of herself because she no longer needs to chew her half Amfexa (ADHD tablet) in the morning and quarter in the afternoon and two sleep meds at night. She can swallow them with water!! And she’s proud of herself! Though she one day when she was just feeling so miserable that she struggled. I’m so proud too!
I’m also thankful for one more thing. The Rinvoq! And masks! I’ve been double masking because I’m so terrified I’ll get sick from the children. It’s so bad – their sickness – that I cancelled this coming week’s occupational therapy sessions for them.
It’s been torture. Watching them unable to eat, seeing them listless and seeing my nine year old so weak that he slept for three days. I almost felt like a bad mother for not taking him to the doctor. But he’s got his energy back! And their appetites are starting to come back.
Check our nine year old going to get something to eat at 2:58am!
Then, there I am sleeping and the door suddenly opens wide and in rubs my five year old. Shock of the decade! And she was so bouncy and full of energy🫣She said she’s hungry and wanted an apple! She’d also gone to her sister’s room who also came in and said she too wanted to eat (again!!)
It was crazy! So awake and I so in need of sleep! The commotion then woke non talking twin.😆😆My life is never boring!
And so, as I slowly start feeling stronger than I have been, I keep praying it improves so I can one day go on a trip to a park or something with my children. And maybe the next time I try wash dishes, it won’t hurt as bad. And hey, there will only be six to wash up for with the teens only returning in July. Please let there be an improvement!🙏🏾🙏🏾🙏🏾
I am typing here with a sore throat and wishing hard it’s just the Rinvoq. It’s been causing my throat to close up and it feels like it’s swollen. At night or even when it has made me suddenly fall asleep while I’m working during the day, the throat even closes up and wakes me as the air struggles to pass through. It’s something I need to keep an eye on. One of our members was waiting it out but eventually went to the doctor. He told her if she’d waited another two days, she’d have died in her sleep because of how swollen her throat was and how it would have stayed closed and deprived her of oxygen.
But, a sore throat is how the children’s sickness began too. Two weeks after it began, they are still not well. The congested coughs are awful to hear. How would I survive? And where would that put school given I haven’t taught since two weeks ago? It would be a very long school holiday… and bad news for my lungs.
Who would ever hope that a symptom they’re having is a medication side effect? Especially of one they hope to be on for many years before my body gets used to it and it stops working.
And how many people sit on the toilet and then wonder where they’ll find another rheumatologist to help with their incurable disease when their own rheumatologist retires? I hope to still be alive and mobile when she does. But then who would I go to? She’s the best …
Anyway! Let’s hope for no more random hungry girls waking me up. I heard the door handle and thought it was burglars, people! I was scared! Two blocks away they’ve been burglarizing people’s homes on one specific street at around 3:30-3-50am! They gave me a heart attack! And I wasn’t wearing my mask.🤪
They said I should write a book 