Tag Archives: Lupus


Ooh, looky here… it’s past one o’clock in the morning and I’m still up! Not reading, or watching a movie or listening to music or anything pleasurable like that… no, I’m up itching! Ugh! I’m going to buy a scalpel and cut all the way down to the subcutaneous fat layer of skin or the subcutis for short, and then peel it all off! Sounds gross, eh? I don’t care, I can’t take this shit anymore! There has to be something that can be done about this incessant itching. Ya know, I don’t think my rheumatologist takes me very seriously when I say I want to cut my skin off. As awesome as he is, sometimes I think I’m invisible to him. When tiny cuts manifest themselves on my fingertips from seemingly nowhere, thanks to my Raynaud’s, he says “wear gloves”. Um, yeah, ok. That’s ok in the winter, to a certain extent, but in the spring, summer and fall seasons, it’s just not feasible. But I digress. Back to the itching and my invisibility, my doctor prescribed Loratadine which does absolutely nothing and I take so much Benadryl that sometimes I think my body has become immune to it. I guess I’ll just sit here and scratch myself raw. Ugh!


I have been really strong for months now… taking everything in stride, not feeling sorry for myself, never really crying or grieving the loss of my beautifully slender ankle… until now. Wanna know why? I am experiencing pain that cannot be explained away. In fact, the doctors have no idea what I’m talking about. Since I broke my ankle, my knee has been bothering me, like really bothering me. At every progress visit that I have had with my physical therapist and surgeon (separately), I would describe the pain and they would each look at me like I had two heads. I’m not making this shit up! It’s just like when I was sick all of those years with different ailments, 10 years in fact, before I was ever conclusively diagnosed with Lupus. I was so relieved to finally have a diagnosis, after so many years of my family and different doctors thinking I was crazy or a hypochondriac.

But I digress. Here’s the deal, I go about my day doing my usual activities, and I’ll do something as simple as crawling across the bed; as soon as my knee hits the bed, the pain shoots up through my knee and I cry out, sometimes with tears in my eyes. To add insult to injury, I have these huge bruises that won’t go away. My surgeon said that it may be years before my leg returns to it’s normal, uniform color; he followed that up by saying that my bruises were like tattoos from the iron and blood deposits that pooled in my leg during my convalescence. Tattoos!?! So I have these ugly, shapeless, semi-permanent tattoos all over my right leg. That sucks! And last but certainly not least, I have yet another pain that I think may be related to my broken ankle; when I stand up from a sitting position, it doesn’t matter what I’m sitting on and for what length of time, I have a horrible pain in my tailbone as if someone kicked the shit out of me! My husband asked me if I wanted him to take me to the hospital today and I said no. The reason I said no is because I don’t wish to be poked and prodded right now. I’ve had enough of that. With my Lupus, there’s really not a day that goes by where I don’t experience some kind of pain. I am always in pain. Some days are better than others. However, the pain is usually just dull and constant. Pain is my cross to bear. So why am I complaining about it right now? Because the shooting pain that I have been experiencing as of late is not my norm and I’m afraid that it may become my norm. That is all. I don’t even know how to end this post…



I am in a world of pain right now. Like, I seriously wanna cry. I was on my feet for waaaaay too long today cooking… I haven’t “cooked” since before my injury and now I see why. OMG! I couldn’t really take pain meds as I’m not stable on my feet and I was using knives. I always think back to the Final Destination” movies when it comes to things like that. Funny, I never thought about those movies while on the track doing roller derby. I can’t explain that.

That’s neither here nor there. Again, I am in a world of pain right now. Feels like someone is sticking scalpels (yes, plural), into the medial malleolus of my right tibia. I have a very high threshold for pain, as I am in pain almost everyday of my life thanks to my lupus and RA, so I normally don’t complain about pain; I push through it. No pain, no gain. But imagine, if you will, how easy it would be for someone with my pain threshold to overdo it, and perhaps injure myself even more.

Which is precisely why I’m done for the night! I will NOT be doing anything else that requires me to be on my feet; I’m horizontal from here on out. I just thought I’d share. Oh, and please do forgive me if I’m talking in present, past and future tense… I simply cannot bear to correct myself right now.

I’m in a world of pain right now.

I took my prescribed dose of pain meds an hour ago, at 4am. Here it is 5am and I’m awakened by a very sharp, shooting pain in my big toe. According to my surgeon, I am on the highest dose of pain meds that I can take safely, coupled with my daily Lupus regimen. I am going to try to get some more shut-eye by mentally blocking out the pain transmitters. I’ll let you know how I do…

Yet another flare…

OMG! It seems like I only post to this blog when I’m having a flare. Yes, I’m having a flare right now. This one for sure is stress-related. I don’t even want to get into the specifics of this flare because I will sound like a broken record. Okay, I’ll tell you one symptom that I’m experiencing right now: ITCHING! And as silly as this sounds, I cannot get the song “Itching for a scratch” out of my head!

Let me just say that when I went to my rheumatologist a couple of weeks ago I was fine. Of course. It never fails. I’m always the picture of health when I visit my rheumatologist and nephrologist. What’s extremely sucky about this flare happening right now is that I’m in the middle of prepping for a job and I wanted to get some reading and writing in this weekend. On top of that I have to prep for my roller derby skills testing next week and I need to study the WFTDA rules book.

I have one question, who are these people that are always bored? I mean seriously, there are not enough hours in a day for me to accomplish everything that I need to do, let alone want to do. Argh!

Itching!! ARGH!!

I am itching so bad right now I can hardly bare it! Trying not to cry but I can’t help it! There are far worse things to have and I appreciate that. However, it doesn’t really help me out at all, to know that there is someone out there worse than me! All I can think of is this incessant itching and the desire to take a scalpel and cut my skin off!! So, I’m wondering, is this a side affect of Plaquenil (the antimalarial I take to help with my Lupus and RA)? Can’t be sure. Does this mean something bad is happening with my kidneys? I will have to make an appointment with my Nephrologist to be sure. What I do know is that I feel like I’m going crazy! Like there are little things crawling all over my skin. I am itching inside and outside my body! Does that make any sense? Can you imagine being in a body cast (head to toe) and not being able to get at an itch? That’s exactly how I feel right now! Oh, and yes, I have taken Cyproheptadine and it’s not helping. It’s only 2:30pm, I’m not ready to end my Saturday just yet but I may have to. If the Cyproheptadine doesn’t start working soon I will be forced to take many Benadryl. Not a typo, I said MANY! The doctor has advised me against this in the past but he really didn’t have any suggestions that have actually worked so, I’ll just go to sleep for a long time….

I wanna slam you into a wall!!

I told my Rheumatologist today of my plans to become a Roller Grrrl! He asked “huh?”. I said, “a roller grrrl… you know, roller derby?” He didn’t seem surprised at all. He knows I can do it! And he had no objections. So, if my rheumatologist is okay with the prospect of me slappin’ some chicks around and getting slapped around myself in the process, there should be no objections from the peanut gallery!

Sorry Lupus, but I’m not going down without a muthafuckin’ fight! If I’m going to have bruises all up and down my beautiful 38 year old body, well at least I can have fun in the process!