Six drops a day!?

Good day, Shabbat shalom, hello! Trying to sound cheerful because I’m not feeling it! Fake it till you make it, right?

Instead, I’m feeling sick and uncomfortable and sad and slightly worried. But let’s begin with the first small drama of the day. Last week, Ms Talkative Twin cried and cried. The first thing she had asked me when she saw me after she woke up, was if she will grow up to become an animal. Preferably a cheetah.😩My “No, my Angel, you’ll always be a human.” Was met with angry disappointment as if I’m the one who decreed that humans be human! Not my fault!

Today, the drama of the morning was that her twin got into her bed. How dare she? Forget that she was out of it and meant to be getting dressed! She wanted her sister out.

Yes, she always covers her head with something. Duvet cover, comforter, since she was a toddler, she used something on her head, to soothe her when lying down.

Let’s go to me. Awful abdominal pain. I don’t know what it is. It comes and goes as if my intestines are twisting.

I don’t know if I have joined the group of AS patients who also have Sjögren’s syndrome (another autoimmune disease commonly occurring in women with Ankylosing spondylitis) or what, but the dry mouth, throat and eyes are bad. When my eyes become too dry, I start not being able to see properly, when I don’t drink within five minutes of my last drink, my throat starts to hurt from being dry. Like the walls are sticking together. My mouth and teeth feel scratchy and teeth feel like they have a thick rough layer, and I feel like my eyes are heavy and they too become scratchy if I take a while to put eye drops in. You can imagine how awful I am during the night when there are no eye drops and no drinking water every five minutes. One time in my sleep, I tried to scratch away the sandy feeling in my eyes and scratched my eye. You can imagine how the pain shocked me into wakefulness!

Pain, eyelids heavy… it’s disconcerting! Sjögrens apparently more common in AS patients with interstitial lung disease. Me. Great.

I’ve just checked. Sjögren’s also causes dry gastrointestinal tract too. And can impact the liver or pancreas. What if these symptoms are all linked and I’ve been complaining about weird IBS for the wrong reason? And like all autoimmune conditions, there’s no cure. Just keep treating it the way I’ve started. Eye drops, dry mouth capsules, dry mouth spray which I’ve ordered, capsules… Maybe there are prescription strength ones that wouldn’t require me to keep putting eye drops in my eye and keep drinking every 5 minutes. I don’t know, guys! If this is Sjögren’s then the daily abdominal pain and bloating?? How do we sort that out? I struggle to drive for more than five minutes because my eyes dry out and I can’t see properly no matter how often I blink.

Then we go to our boy, seen below after I put eye drops in his eyes.

Yes, we have a theme.

I got his father to take him to the opthalmologist today. I cannot risk being in the same vehicle as he (as well as the other small children) he’s still got his very wet, chesty flu cough and bad rhinitis. Plus someone has to keep watch over the crazy calves (Surname means Cow for any new readers.)

The first step will be to use more drops for infection. Four times a day. And just in case the redness is caused by allergies, he also has two drops a day of allergy eye drops at different times to the other type. When I was giving his big brother instructions, he said, “So really, it’s six drops a day!?” And he refused anyway so I shouldn’t have bothered giving instructions. He said he is scared his hands won’t be steady.😅

The opthalmologist doubts it’s simple though, because we’ve already treated Micaiah with eye drops for infection and the symptoms aren’t going yet by now he should be fine. So… He will go back in two weeks’ time for testing if his eyes are still messed up.

As mentioned in the previous post, I’d asked the behavioural optometrist to take a look as the appointment with the ophthalmologist was too many days’ wait. She had indeed said it could show an autoimmune disease, or a disease of low immunity. We will see! Poor boy. I guess that’s what they would be testing for. I really pray it’s nothing. Oh, he also has an infection of his actual eyelid. So we must wash that carefully so it doesn’t enter his eye and make them itchy as the scratching makes his eye inflammation worse.

It’s not great. It is not good. I want to take care of my children more than I can. The stomach pain gets so that I have to come hide. I’m making natural medicine for the horrible flu. Those fevers have been awful. The one nights it was a Sid someone had poured a bucket of water on my poor Twin A’s bedding and pyjamas.

Wait, do you know that I’d never seen fresh turmeric till this week? 45 years old and never seen it. I’m deprived.

So I give them the turmeric, ginger, lemon, honey, sprinkle of cayenne pepper mix, herbal cough mix, homeopathic rhinitis syrup for their leaking thick but blocked noses, Vicks rubs, normal ADHD and ASD meds, normal supplements, echinacea, humidifier… It’s just ongoing. But I feel like I’m not doing enough because I’m doing it behind two masks – so uncomfortable- and I can’t just sit and massage them. I go do one child and then run back to ‘safety.’ Then another…No hugs. But the twins can’t stay away from me. And they’re both using their mouths to breathe on me. It’s scary.

If you’ve read the entire blog, you know that catching an upper respiratory virus is deadly for me. So balancing that fear with being the only caregiving parent is hard. Hoping my children get well soon especially as twins’ autism is not helping. They’re both extremely miserable. And as the days pass and the sickness continues, Talkative Twin is more tearful and sensitive while her twin wants to go drive way too often. I wish their noses would clear up! And no, nasal aspirators don’t work.

I had a light hearted post ready. I was going to post about how Amarissa was asking if you’re jealous of my homemade ice cream and frozen yoghurts. 😊But I’m doubled over in abdominal pain as I type, I’ve taken muscle and pain capsules for back pain, and sad for my miserable children and worried about my boy. The possibilities don’t sound curable. Surely my incurable diseases are enough for my family! Why more?

Hoping for the best. That’s all I can do!

Until next time,

Signing out

Grace by any other name…