Where Do I Start?

I had a wheeze. Then it became a cough. Then the GP did the X ray in Friday that had I posted that I would have but saw nothing. Her guess was that “the infection has not yet consolidated” so I must go on a second round of augmentin to stop it building it up.

I decided to NOT.

I knew I’d be seeing the pulmonologist and I hate meds at the best of times, to treat an invisible chest infection just didn’t sit right with me.

I went. I did the lung function tests and allergy tests. I’m no longer allergic to fur but I’m still allergic to dust. VERY allergic. So he told me to get rid of my children’s soft toys. I told him that would be impossible. So he then said I could keep one for each child, and freeze them for 5 hours once a week and someone else must then vacuum the dead dust mites off. I must also do some allergy spray for the rest of my life. 60 seconds with my head upside down so the spray goes where it should go.

Also, he could hear my cough but given my chest x rays were clear, he veered towards it being caused by a sinus infection. So he prescribed a ten day course of zinnat antibiotic. If I feel it’s not improving on day eight, I’m to go back to the pharmacy and add on a further five days.

He too can’t hear sound at the bottom of my right lung, and my lung capacity is reduced. And that’s where we worry… I must return in three weeks’ time and he will take a listen again. If it’s still off, he will send me for CT scans on my lungs and in my sinuses -my head. He fears it could be Ankylosing spondylitis impacting my lungs.

Speaking of AS. You know I’ve been waiting on tenterhooks for biologics. And you might know I emailed twice to ask what’s happening, last month. I was meant to have an appointment with the rheumatologist tomorrow but on Monday I got a text ‘confirming’ my appointment for next week. I phoned the next day to ask what that’s about, and they said my rheumy will be unavailable so they’ve moved my appointment. Thanks for DISCUSSING it with me and for checking that I’m available!! NOT!

Then a few hours later the admin phoned me back. “Well actually, the doctor has canceled your appointment. She wants you to have started your biologics first.”

Who said I didn’t have issues to discuss with her? Like, my lungs??

I asked, “Where are we with regards to that?”

My heart sank. She said they first have to submit the biologic application to SARAA which is a rheumatologist panel. Then if they approve, it will THEN go to my medical aid company for them to (not) approve! Guys, she has always said the next step was to submit to medical aid. Never did she mention this first one! I couldn’t believe it! I wanted to cry! How much longer am I meant to wait? The pain is increasing dramatically and my methods aren’t working anymore!

I ended the call.

Then I phoned back again. I told her I was in extreme pain and was there anything they could do for pain relief while waiting for biologics. She was shocked, “So you’re not on any pain medication? No NSAID??” I told her how the doctor took me off them at the end of May as they weren’t helping and my disease was progressing so no, I’ve been on NOTHING!

She said she would chat with the doctor and see if they could send me a script.

Then she phoned back. “Alright, these are the meds we will prescribe. Tramadol and StilPane. But you do realise these won’t slow the disease down, right? You do realise you need biologics for that?”

No kidding! Why else would I have emailed twice, and asked TODAY where we are in the process of getting them?? And my knowing doesn’t help. It’s not like the delay is because I’m not coming to pick my injections up!

I asked in a Facebook group about timing. Two replies said the panel has no set schedule and one of them said they are slow to meet. And they might need a certain number of cases before meeting to discuss.

I feel so helpless and abandoned. I finally got a diagnosis in January. But here I am in August with no treatment and no idea when I will start it.

And meanwhile, the disease continues to kill me slowly.

And this is PRIVATE HEALTHCARE!

I thought I’d be able to be the teacher and mom that I want to be. I thought the hiccup would be medical aid saying no and then when that would finally be sorted, the next hiccup would be it perhaps not working and needing to move onto a different biologic.

I didn’t know it would take unknown months to get nowhere.😭