Category Archives: Lupus


I know I’ve been missing in action for months now. I am exhausted! Life is kicking my ass. I just wanted to say a quick hello and let you know what I’ve been up to in as few words as possible.

As I already mentioned, I am exhausted. I’m suffering from extreme fatigue right now thanks to Lupus. I haven’t skated since June because, in addition to my fatigue, I have an issue with my sciatic nerve. I just started physical therapy again last week. Ugh.

I have been very selective in booking jobs because of the pain I’ve been experiencing. And as a direct result of having absolutely no energy, I am behind in post production. Just the thought of how many galleries I have yet to edit makes my head spin.

So, I will try to stop by everyone’s blogs as I find the time. I miss reading your musings. Hope all is well.

Lenette 😉

Just got off the plane…

I’m here. They’ve been waiting for me, holding up a sign with my name on it. I have officially arrived in my dark place; looks like nothing has changed, it’s just as I left it. A place so dark that I can’t see through my veil of tears. Nothing and no one is welcome here. I do not wish to talk to anyone on the phone or in person to tell them how I feel, because quite frankly, I may tell them to fuck off! So, the only way that they will get any insight into my dark place is to read this post.

Happiness being relative, I can honestly say that I am unhappy. I don’t give a fuck if anyone thinks that I have it better than some people. Who are they to say that? From the outside looking in, they may assume that I have it better than most and they would be way off base.

No material possession can make me feel better right now. No one person can make me feel better right now. I am responsible for my happiness. Of course I cannot control someone else’s actions but I can control my reaction and I haven’t been doing a great job of that lately. It would appear that I am a glutton for punishment, I assure you I am not. My lack of focus and apparent misery prompted the following question, “Is there someone else?”, to which I replied, “Yes… Me. I am the other person”. To be clear, I am in my own way and that’s what’s so fucking sick about the whole thing. In my heart I know what I need to do in order to make myself happy, which in turn will make everyone else happy, yet I can’t.

There’s this fear that has me paralyzed. The fear of failure. I know that if I don’t move, I will die; perhaps not literally, but my very soul will cease to exist and I will merely inhabit a physical form. Actually, if I continue to have these overwhelming feelings of helplessness and hopelessness, I may kill my physical self; not at my own hand, mind you, but as a bi-product of depression and/or anxiety coupled with my Lupus, Sjogren’s, Raynaud’s and Rheumatoid Arthritis. Stress makes my illness(es) flare-up, so living stress-free is tantamount to my well-being. This very moment, my spirit is on life support and my stress level is off the charts. I almost wish it was over already.

Not to assign blame, but there are some members of my family that really fucked my head up! All those years of rejection added up to me creating this person who I thought my loved ones wanted me to be just to stay in their favor. My first few years on this earth were rife with instability, turmoil and rejection, I felt worthless; no child, especially under the age of 5, should be made to feel that way. Once I was in a more stable home environment, I was told over and over again that I was smart, pretty and funny, but the damage had already been done.

Everyone in my life may be having an easier time than me dealing with my illness or, it could be argued, a more difficult time. Their support or lack thereof, doesn’t diminish the fact that I am sick. The physical pain is secondary to the emotional pain and I don’t know how long I can live like this.

I made a vow to myself, sometime last year, to live authentically and I was making progress, truly. However, I may have fallen off track and reverted into this being that is foreign to me, all to appease the people that I love. I feel like I have to choose between their happiness and mine, which sucks.


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…


I am feeling so… Ugh… I can’t even think of one word that can convey all of the emotions that I am feeling right now. I am in an “in-between” state. One minute I’m up. The next minute I’m down.  No, I’m not bi-polar, or at least I have NEVER been diagnosed as such. However, I have been diagnosed with depression and anxiety, both of which I take medication. Did I tell you about the time my doctor prescribed zoloft for me? OMG! The worst time of my life. Please allow me to explain. Being diagnosed with depression and having your VP’s and SVP’s at work tell you you’re “not being yourself”, is bad enough. Once my doctor prescribed zoloft to me and I began taking it, I lost any and all desire to have sex. Although I may have been feeling more upbeat during the day, I didn’t think about sex at all… like… ever! As far as I was concerned, sex was non-existent. That whole “being under the influence of a controlled substance” was soooo not cool. Ok, I know what some people might be saying “Sex? Who cares?”. I do. I am a very sexual person. My sexuality and spirituality are entwined. That’s not to say something blasphemous, like I want to lay with an angel or anything crazy like that. No, but I need to be able to connect sexually and spiritually with my significant other. When I go “there”, I go “there”. Needless to say, the zoloft regime was short-lived, to be replaced by Wellbutrin. Guess what? The Wellbutrin is not working right now…. Ugh!

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!

Feel. My. Pain.


Lupus Flare… Today’s symptom: Incessant itching!

I am itching all over! I am completely miserable! The soles of my feet are itching! Do you have any idea how difficult it is to walk around with itchy soles? I really want to cut this skin off right now… Like, seriously!!

Lupus Headache. Right. Now. Going on 12 hours. 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….