Copy and Paste

Another edition of “What I wrote on the other forum.”

I was told this week that the AS is progressing. I was MEANT to see my rheumatologist in August and THEN have a discussion about next steps but the office phoned me this week to tell me it’s time to take next steps NOW.

(For the benefit of new ‘friends’ I’ll just say this. When you have found a cure for Ankylosing Spondylitis, talk to me. Otherwise, I’m not here for ‘remedies.’ I’ve spent 20 years living in the natural realm and everything I tried even BEFORE this year’s final diagnosis is the best out there diet and supplement wise.)

I’ve failed both starter meds and we are moving onto the big guns. Thankfully, I’m not scared of needles, because these will be regular injections for the rest of my life-unless I go into remission. I know some who have gone into remission and after being like that for a while-they are allowed to stop treatment.

Yes, it sounds like fighting incurable cancer because it is incurable. Some might go into remission fast, and some go through all the different biologics (the big guns) and still the disease progresses. THAT, is scary.

Long story short…

“Too late for that!” You exclaim.

One of the first (so I’ve seen) biologics that they use for many of us with our different autoimmune diseases is Humira. (She didn’t name them last time. Just mentioned the impact they have.) All biologics tend to reduce your immune system’s ability to fight disease. That’s after all the aim-to stop your BODY FIGHTING against itself so terribly. But some, like Humira, leave you wide open for TB to come wreak havoc inside you.

So, I went off to do a Mantoux test-They inject you with a bit of TB bacteria. (Or something along those lines! Doctors I’ve seen like asking if I’m a medical doctor because of the jargon that apparently rolls of my tongue so easily as if I’m trained -but this one was new to me.) Then a few days later, you go back and they see if you are positive. If your welt is back and raised quite ‘high’ then you have been exposed or have TB (dormant or not) and for my purposes, cannot take Humira unless I take TB tablets for the duration of treatment. NEVER!

So, off I went to do that and also have chest X-rays done.

Bravely wearing my warrior hoodie by Tk Taku Madzandefor that is truly what I am, and I mean it.

If healthy moms can shout at their children, lose their tempers, only a warrior can-according to her children-keep her peace and be “always so nice” despite the constant hum of fatigue and pain that builds to a crescendo by 4pm..or earlier if it’s flare time.

This Sunday, the you Net children came into my room not 5 minutes after I got done with a bit of laundry. One of them had the temerity to put their legs right on my surgical wound. I wanted to laugh. And cry. Ella came in, saw how they were all on top of me and exclaimed, “This is chaos!” And deserted me!

Only a warrior keeps going when the war is going against her instead of turning tail and running away. I’m getting worse, but I haven’t taken ‘disability’ leave. I’m still teaching, still taking kids for assessments and therapy. And many rightfully do go on disability.

And the best of all?

Despite how unfair my life apparently is -children with extra support needs included -I can still smile, and smile genuinely.

That gives me warrior status when you’re so exhausted that it feels like you’re wading though thick mud while carrying ton of bricks and have no energy.

The most RECENT comment was a cashier (again) telling me that she had to call the supervisor to over ride an error she had made as she she “was distracted” by my smile. Another was, “Your smile is so genuine! It reaches your eyes!”

I’m proud of me given what that smile hides.

I’m not earning much! I’m going to cost us a LOT🥹(Our medical aid plan doesn’t cover the meds at all and they’re in the thousands every month. And there are the tests I’ll need still for my liver and kidneys before I start) I have five children with extra support needs

But I can exude happiness ANYWAY.

As Paul said, “For I have learnt in WHATEVER state I am in, therewith to be content.” My version.😊
For we wrestle against bad angels, and higher powers, not against humans. Again, my version.

AS WARRIOR!

I was content 17 years ago when ‘poor’ and washing our clothes by hand, back and swollen fingers hurting but grateful there WERE difficult formal work pants to wash.
And I’ll be content today even with the call telling me “You’re getting worse.”

(Or die trying to be!😉)