I suppose it’s time I provide an update on me: shoulder and lupus status!

The reality is, it hasn’t been great. Don’t get me wrong, it hasn’t been terrible (not like back in March/April) but I did have a few weeks of life being downright shitty. I want to say things are starting to improve – hold on to the hope that my immune system will finally start calming down – but it’s really hard some days. It often feels like just as I’m on an upswing, I’ll get a significant flare or issue and be knocked back to requiring the use of the handicap bathroom stalls.

My physical ailments just seem to keep on adding up and the most recent flare resulted in a combo of a pulmonary embolism (a blood clot in the lungs) and pleurisy (lung inflammation). So I’m back on the prednisone and have added a heavy duty blood thinner to the drug mix.

I’m waiting for a biopsy on my kidneys (FINALLY a date booked for that), the results of which will be guiding a new drug regime. Kidneys are the number one organ that lupus attacks and the lupus has decided not to give me a break on that one, either! Good news about the kidneys is they do seem to be stabilizing since June. Getting that question answered will be a huge relief and figuring out a new drug regime should really help me. The general consensus being that, 6 months in, I should not be having these major issues still.

Do I sound like a downer? Probably. I just don’t feel that I can be Lil’ Miss Sunshine every day. When breathing is a chore – when meditating proves too difficult to accomplish – the days start to get pretty rough. It’s been really hard adjusting and accepting that I now have a life long, chronic, potentially debilitating, disease.

In spite of all of this, I am currently on the upswing (yay, prednisone!). I know I’m not supposed to like prednisone due to all of its horrific side effects but…I can’t help it! It lets me function! And I’m continually hopeful that these last few weeks of breathing difficulty and extreme chest pain were the last of the major flares. I don’t doubt for a second that my lupus issues were impacted by my broken shoulder. On one hand, I have heavy duty meds flowing through my body telling my immune system to CALM THE FAWK DOWN and then there’s a huge trauma to my body that is calling out to all the healing workers in my body to RAMP THE FAWK UP! What’s a body to do but to be confused in all this mixed messaging?!

My shoulder is healing but it will likely take a bit longer than it would have due to lupus. It appears the coracoid process has healed fairly well back together but my clavicle may not be fused back yet. Time is about the only thing I can do for it right now. I am out of my sling, which is great, and working on my range of motion. All that time in my sling really shifted and pulled the muscles, bones, etc around so now my back is just super tight and sore. Hopefully a couple more weeks of physio will loosen that up: I’ve already noticed a massive improvement since my first appointment one week ago (I’m able to type!).

As alluded to above, I’m still coming to terms with a lack of mobility and activity level. You may have noticed (via Facebook or Instagram) I finally achieved a little goal for myself: hiking up a mountain in the area. At 5km and a 120m gain, it was actually a huge accomplishment. Yes, I am totally stoked I did it. Yes, it’s a huge improvement from earlier this year. Yes, yes, yes! But then I have this nagging thought of “This shouldn’t be such a big deal”. KC Mountain never used to be difficult or constitute an accomplishment so readjusting those expectations are proving difficult as I’m essentially readjusting my identity at the moment. I’m working through it. One friend says meditation helps her but I found a bag of Skittles worked well, too 🙂

And so it continues! The body is not fully cooperating but hopefully new solutions are forthcoming. I recognize the huge strides I’ve made since the first onset of symptoms back in March and I’m most definitely appreciative and happy about that. But there’s always a but: is this my new normal? Is this it for me?

I have my sights set on ski season pretty heavily right now but if things don’t work out quite as planned, I guess I’ll figure out something else. What other option do I have but to reevaluate and readjust, right?

Thanks for all your caring and thoughts! They don’t go unnoticed and are truly appreciated.