Update! The good, the bad and the ugly

I went for a doppler power sonar to help with trying to diagnose if I had Rheumatoid Arthritis. I was happy that the entry to the hospital had a screening section where you had to answer questions and Sanatize. They would then give you a sticker. All I could think was right, let’s do this. Get in and get out. I had to sit and wait for a specialist radiology doctor to do it as my rheumatologist specifically requested it. Holy hell! I was in so much pain. My knees were killing me so it was a real struggle to sit and wait for what seemed like forever. I was mouthing some pretty colourful words. I’ve noticed that the higher the pain level the more colourful the words get! I was reaching demonic level colourful words as I sat there!Some fluid was found on my wrist but the tests needed to be reviewed properly, so I left with no conclusive information.

Meanwhile at home I was still in such extreme pain. My knees were a real killer. Making me want to either faint or throw up from the pain. My rheumatologist had started me on a super high dose of an anti-inflammatory. This provided some relief. Taking the pain levels from 10 to 8. I had to combine this with lots of painkillers and I at least have a little reprieve for half of the day. Better than nothing!

The pain continued. I literally feel old and decrepit. My back is killing me, my SI joints are causing pain that go all the way down my legs. My wrists, ankles, elbows and hands are still in so much pain. Making everyday tasks so hard. I was getting frustrated because this had been going on for two and a half weeks and it felt like it was getting progressively worse. I just needed relief! In light of Covid 19 I was hoping that no further tests would be required.

Finally my rheumatologist called yesterday. It seems like there is NO RHEUMATOID ARTHRITIS! YAY!! I was so happy to hear that. Who wants to add another disease to all the existing medical conditions I have? Madness. So what the hell was going on? Clearly there were are visible symptoms like the swelling and extreme pain. This is new which my rheumatologist highlighted as well. In my mind I’m thinking “Oh hell no. Does this mean more testing?”

My rheumatologist then explained that I was going to have to up my immunosuppressents (chemo tablets) and prescribed other meds to help me with the inflammation and fluid on my joints. So it seems that my Lupus that I had better control over, just went completely nuts!! So we have a plan in place. Take the increased immunosuppressents for 6 weeks and see if it helps. However, if the pain levels continue we have to revise the treatment plan.

We will have to go in more aggressively. So I’m hoping the new meds and the upped immunosuppressents will show a difference really soon. If it doesn’t start dramatically changing the pain levels I will probably require hospitalization. My rheumatologist is trying to treat me outside of hospital. During normal times he is hesitant to have me in hospital because like he says I can go in for treatment and pick up a super bug. So we try to avoid hospitalisation at all costs. With Covid 19 running rampant, even more reason to try and fix this outside of hospital.

So let’s just hope all of this will kick in and I don’t have to be hospitalised or further increase my immunosuppressents. The timing is awful to smash my immune system even lower! The thing is, I’m going to just hang in there as it’s going to take a few days for meds to bring down my immune system further and then we should see a difference. So another week of literally gritting my teeth and just suffering through the pain. That’s ok with me. It is what it is. It’s a process.

So what caused my Lupus to get out of control? The only thing we can really attribute to this craziness is the messing with my medication while I was in hospital and then the change of meds by the neurologist after my hospitalization. Yes, messing with your medication can cause your Lupus to flare. This disease is so damn complicated. So now we wait and see. I think we can get this under control! Fingers crossed it happens soon!

The downside is upping my immunosuppressents during this Covid.19 outbreak means being even more vigilant. I was limiting my outings to a weekly food run. That’s going to be a no no now. I’m so happy that Woolworths delivers! So online shopping it is! I love online shopping so I’m happy to do it. It’s like getting presents! When the delivery guy shows up I’m like “is this for me???”. I then excitedly tear open the boxes like it’s Christmas! 😂 Fun times!

So all in all it’s okay! I don’t have rheumatoid arthritis! Yes, I’m in extreme pain but the new meds should sort everything out. I guess I have to stay on my surfboard for a little longer to ride the bumpy waves but then everything should get better. I’m really hopeful and positive. Ahhh I cannot wait for the pain to finally be over! I’m in my third week of pain hell. I promised myself I will finally start doing some short walks with the ankle weights I bought before going into hospital!

Watch this space! Thank you to everyone who prayed, sent positive vibes and supported me! It’s paying off! So thank you all again! I will keep you updated!


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