Luck Fupus

A lupus blog…

“Have I read too much fiction? Is this how it happens?”

It’s twenty after eight on Sunday night, and already the streetlights are on and it’s completely dark outside. We are on the last legs of summer. I always get a little sad when it begins to get dark early, but after this unusually hot and humid season, I am welcoming the cooler weather and no more air conditioning with open arms.

The past few weeks have been an emotional roller coaster, lots of ups and downs. It doesn’t have anything to do with my recent birthday, although I do have to say that I’m not where I thought I would be personally and professionally at the age of 31. I had these grand plans of being a mother and nurse practitioner by now, and it pisses me off that lupus has put a big, fat F*CK YOU into those plans.

In other lupus news, I’m finally getting a port to start IV infusions. I’m not having the surgery for another few weeks, so until then, it’s still just high dose steroids, but alas, relief could finally be on the horizon. I met with the surgeon last week, and got the green light from my cardiologist and hematologist. I’m already thinking of all the super cute Band-Aids to cover it that I can get to match my clothes!

I made the decision to leave my rheumatologist that originally diagnosed me with lupus and my other assorted auto-immune diseases. We had a good run of 4 years, but I think it was time to get a new set of eyes on me. I saw her last week to give her one last fighting chance, and she let me down. She flat out refused to put a port in me, but said we could try IV meds only if they were given peripherally. So after maybe 3-4 treatments my veins would be completely shot, and she’d still refuse a port, and I’d be back to the drawing board again.  No thank you, I think I’ve suffered long enough. The new rheumatologist I saw impressed me, and not just because he agreed to a port. As I said, I’m hoping relief is on the horizon.

My dads cousin Jerry passed away suddenly a few weeks ago. It really saddens me because it was only after Mom-Mom died in 2009 that I got to know Jerry. We stayed in contact over Facebook, and he always wrote the funniest things. I remember last year on the day of my first Benlysta infusion, he wrote “It’s the eye of the tiger, it’s the thrill of the fight!!!!” on my Facebook wall, so I will always think of him whenever I watch Rocky or that song comes on. He didn’t want a traditional funeral service, but had a celebration of his life complete with “I Went To Jerrys Celebration of Life Service and All I Got Was This Stupid T-Shirt,” t-shirts.  It was beautiful to see just how many lives he touched, and everyone had the chance to tell some wonderful stories. Like everyone, he had demons, but was able to overcome them and live a truly good life. My only regret is that I didn’t get to know him sooner. Families can be funny like that. The older I get, the more I realize how important family is, and you have to let go of the petty bullshit before it’s too late.

I have 3 other blog posts that I started last week, and I will probably get them up this week. I did not keep up with my August Blog Challenge. Epic. Fail. Maybe if I write 2 a day til the end of August I’ll make it.

Yeah, I know. Never gonna happen! I did have another post on What The Jules Blogger In Residency section. Check it out, my friends!

Happy Sunday <3

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Somebody’s watching me…

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