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A New Chapter

Tuesday, 9 February 2016

8 February 2016

I have been putting off talking about this since September 2015. I have sat down to write this 3 different times. Dealing with my left knee replacement surgery and recovery was enough to juggle it felt like. So I shelved it really until I could realistically digest another thing. I’ve been rather reclusive the last several years this is one of the main reasons why, though I didn’t get the official diagnosis until last September. A very few closest to me knew already but I haven’t shared it publicly until recently. Mostly because I haven’t had time to really digest it myself. I guess it’s time; New Year, new book of life and all.

Just a few days before my surgery at the end of September 2015 I received the diagnosis of Lupus (Systemic lupus erythematosus or SLE). Part of me was relieved because they finally had an explanation for so much stuff. The other part of me was like “Crap! Seriously?” We had been chasing the rabbit for over a year and a half of trying to figure out what has been going on with my body for the last 3 years. They will re-test in June to confirm the diagnosis but that’s pretty much just a formality at this point. From what I know of Lupus through my own research and having known several people who have it this piece of the puzzle seems to fit with the symptoms I have been experiencing.

I do not want another chronic illness. But, it is what it is and I WILL persevere damn it! I will find a way to surmount this and live my life, be active and healthy as possible! I’ve had a few months in the dumps about it and now it’s time to move forward. Most people have heard me talk about the “Spoon Theory”. If you aren’t familiar with it, the concept is to help people who have chronic illness explain energy levels to those who may struggle to understand how those with chronic illness struggle to get through each day at times. Life is a lot about allotting spoons the best way possible these days. I can have a couple kick ass days and then spend the rest of the week wondering how to move around the house to get the basics done.

I have been fortunate to find a wonderful rheumatologist that is a straight shooter and on top of things 100%. She sent me for all manner of diagnostic testing and pre-medication testing so that there is a benchmark to refer to as we go forward. A week after my knee replacement surgery she started me on a medicine to help prevent organ deterioration: Plaquinil. There are other meds to manage flare ups etc. but apparently Plaquinil is the only game in town to try and slow Lupus down at this time. Thankfully I haven’t had any adverse reactions to the drug thus far. Which considering my track record for having awful side effects, is a much welcome miracle since there’s no other drug to replace it.

So, please be patient with me if I don’t reach out as much as previously, we make plans and I am struggling or have to cancel. It is NOT personal. It is just because I am working toward what normal is now and how to make that the best oddball normal that fits me. 😉 I try to be as cognizant as possible about my spoon allotment and management but there are days I just don’t get it right.

Love to you all.

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