It is HERE!

It has been such a long wait! For something that I don’t even know will help! But, here it is. My Enbrel. After Discovery refused to find it because I’m not on the top two (read-most expensive) plans, we asked the doctor and nurse to proceed with an appeal (as they’d said the next step would be).

Next thing, I get a call from the rheumatologist’s offices saying that we’ll, an appeal would not work because of the plan I’m on.

“So, why? Why did we even begin the process if you already know the outcome? Why did you make me wait when you knew I was waiting for nothing!?” I wanted to scream.

But, I don’t scream.

She then proceeded to tell me about a cheaper drug than the Enbrel the doctor had said would be best to start with.

Again, my head spun. “Do you realize that none of you ever told me the cost anyway and you’ve always all assumed I won’t afford it? But if this is the best, then I might as well try! Plus it might not work anyway, or the side effects might be so awful that I’ll have to quit and try this other one. So, let’s just bring out the big guns before trying something less suitable. Why are you patronizing me by not giving me all the costs and siting for ME to tell you I can’t afford it?”

All this time, I’d been told by a patient that they are paying R5600 per injection. But when I asked for the cash price, it’s R5200 for the 50mg injection. (You can get a 25mg one but I was prescribed the larger dose.)

We can make a plan till next year. It will require lots of sacrifice in other areas, but it’s much less than I’d been told. So I told the office manager that we’d do it cash for now.

I don’t know. I just don’t like the way things have been done. The very first time I saw the doctor, she said we’d apply for the meds. And if they said no, we’d appeal, and then if no, apply for ex gratia funding from them.

Suddenly, all that has fallen by the wayside now that it’s time for her to write an appeal… I just don’t feel good. It’s like I was being fooled with empty promises. We’d already planned to take out a loan to fund treatment- don’t ask me how we’d repay! But they never asked. Just went an a path of assumptions and made me wait and fill in forms for no reason.

Oh well. Anyway! On Tuesday, I ordered the injections from Dis Chem and received the call saying they were there yesterday.

Having done IVF before, I know how to inject myself so I just asked the Enbrel nurse about what to expect.

1. If I have a skin reaction, no matter how mild it is, I should go to the pharmacy. If I ignore it, it maybe get much worse the next day and become a runaway fire.

I did get a minor reaction so I went.

Right now, it’s swollen but not red anymore. It’s a wider patch that has swollen than yesterday but no pain and itching.

2. I might get a headache.

I woke up with one but my life is a mess with sinusitis and hormone issues so who knows. Either way, it’s a very mild headache.

3. Extreme fatigue

I’m starting to feel it now, 21 hours later.

4. Some people said they don’t feel like themselves.

I feel like me. So far…

So, we wait and pray and hope. Not only for it to work and to work quickly, but for the windows of heaven to shower us so we can afford all our expenses. I know He is faithful. Two friends have sacrificed a lot already without even knowing how bad things are-one all the way in east Africa! I’m already going to cancel my pulmonologist visit due to low funds. We can’t do it all. Unplanned glasses, vision therapy, having to pay for the Enbrel ourselves, food, mortgage payments, my dad’s electricity, son’s driving lessons and car hire for the test.

Let’s see, people.

Watching..and praying.🙏🏾