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!

Still sick?!? Ugh!!

I am still sick… how can a person have a “cold” for three, going on four weeks? I’ll tell you how… LUPUS! To say I’m totally sick of being sick would be an understatement! LOL

This time around, I had mouth ulcers which made my top lip swell up for a week. This in itself was funny because I was making fun of Lisa Rinna on the premiere episode of Celebrity Apprentice and I kept calling her “trout mouth”. Well, the next morning when I woke up I had just that, a trout mouth! And I couldn’t help but to laugh at myself and say aloud “that’s what the fuck I get for calling Lisa ‘trout mouth’! God don’t like ugly and he fixed my ass!”

Another issue I am still having is a bloody nose. My nose has been bleeding so much that one day my garbage can looked like a “medical waste” container from the doctor’s office. Full of bloody tissue. Not the type of blood that is mixed with mucous when you blow your nose. No, the kind of blood that soaks through the tissue because it is completely liquid and bright red. Have you ever had a stopped-up nose and you try to blow out your nose lightly, just to see if that will move things around so you can breathe? Well, when I do that a spray of blood shoots out, so I don’t do that anymore. Don’t want to mess up any of my vintage clothes! Blood is hell to get out!

I must say though, that I am in pretty good spirits considering all of the silliness that’s going on with my body. I have to just laugh to keep from crying. I’m pretty used to be being in pain on a daily basis. I always get the “You don’t look sick” remarks. I’m used to those too! I’m sorry, what should I look like? A leper? Sheesh!!

Breathe. Breathe. Breathe.

So now I just can’t breathe. I can’t breathe. I CAN’T BREATHE! Can you hear me now? Have you ever been so full that when you try to cry it gets caught in your chest and you can’t breathe? I cannot breathe/I cannot die. I am full/I feel empty. I cannot get everything out/there’s nothing there. I can tell you that all is well/I don’t want to tell you anything. You understand/you’ll never get it. I don’t want to exist/I want to live. Life is hard/death is easy… for losers. I am a winner/I am losing. He makes life bearable/he makes living easier/they make life a necessity/they make living enjoyable/she made life possible/she makes living lonely. I am not a loner/I am lonely. Life in constraints is freeing/living freely is prison.

You have Lupus/you suffer from anxiety/you are depressed/you have Sjogren’s Syndrome/you also have Reynaud’s/you are still grieving/your PMDD is getting worse/I think you may also be suffering from RLS/your ANA results were positive/you are a textbook case/you are quite lucky that your kidneys are not involved…. yet/You have Lupus. You have Lupus. You, my dear, have Lupus.

Think you’re having a hard time trying to figure out what I mean? I’m having a hard time trying to articulate it.


Why do I continue to hurt those that I love? How is it possible that I can be so miserable when I’m surrounded by people who love me? I don’t know. I don’t have the answers to anything. I don’t even know why I feel unhappy. I have no idea why I cry uncontrollably at times. I cannot grasp the concept of taking my own life, yet I have always felt that I will die young. I am in so much pain. The emotional pain sometimes overshadows the physical pain that I endure on a daily basis. Lupus was a diagnosis that came with a sigh of relief for me. I was relieved to finally have a name for all of the pain that I have endured for years. Yes, years!

I made up my mind on Saturday that I would no longer seek happiness for myself, rather I would make sure that everyone around me was happy. And then on Sunday, something happened that pretty much derailed my plan….


Do you know it personally? I do. We are very intimate. I am in so much pain…. emotional, physical, spiritual, financial….PAIN! What gives? I can’t win for losing. I don’t mean to take a defeatist stance but as soon as I feel better about any given situation, something comes along and the rug is pulled from under me. I can’t take much more.

I am inconsolable. I am inconsolable. I am inconsolable. I am miserable. I am miserable. I am miserable. I am hopeless. I am hopeless. I am hopeless. I am depressed. I am depressed. I am depressed. I am anxious. I am anxious. I am anxious. I am unhappy. I am unhappy. I am unhappy. I am inconsolable. I am inconsolable. I am inconsolable. I am repeating myself? Yes! Is the repetition driving you crazy? Yes! Imagine how I feel. You get to read it, or not. I have to live it!! There is no “not” to it, for me. Everyday is like groundhog’s day for me. And I just want to wake up one morning and experience a new, different day.

That was all my emotional crap coming out. I haven’t even touched upon the physical. I have been in physical pain for 4 consecutive days now. I haven’t been laying around feeling sorry for myself. No. In fact I have been to the gym the last two days trying to work out the kinks, to no avail.

So…. what to do? I can’t go through life with puffy eyes from crying and not getting enough sleep. I don’t get enough sleep because I’m anxious. I cry because I don’t get enough sleep. I cannot control it. The tears just flow. I’m not even a crier, waterhead, crybaby, Sensitive Sally, or any other name that you would call a person that cries a lot. I am such a strong person, but Lupus is kicking my ass!! Argh!!

Lupus is a minor inconvenience……

…sometimes and sometimes it can be the most devastating aspect of my life. My rheumatoid arthritis is rearing it’s ugly head today. Right now, I feel so sad. I feel depressed. I feel anxious. I feel sick to my stomach. I am inconsolable. I feel full. There are tears welled up in my eyes. My back hurts. My neck hurts. My legs are sore. My hair is falling out. I am fatigued. I am sleepy. My fingers are sore, thank God they’re not swollen today. I feel like my body is falling apart, like in that silly movie “Death Becomes Her”. 

My hair is VERY important to me and always has been. When it first started thinning, I didn’t let it bother me so much. My husband was surprised, as was I, that I was taking it so well. Well, today as I was flat ironing my hair and I see how much further my hair has thinned I am taken aback. I’m not sure if I can handle it so well this time.

For the last few years I have been able to “grin and bear it”, the pain that is. I have been consoled by the fact that although I felt like shit, I looked good and no one could tell that I was sick. I didn’t hide my illness. I just didn’t tell everyone because I didn’t want anyone feeling sorry for me or treating me differently. Well guess what? I need to be treated differently. I don’t have the same stamina that many women my age have. I cannot walk long distances sometimes and it’s not because of my shoes (I wear heels the majority of the time, my Steve Madden gym shoes even have a heel). Flats make my shins hurt because I’m not used to working the muscles used when wearing flat shoes.

I am trying to live my life one day at a time. Most days I feel blessed that my kidneys are not involved in my illness right now. My nephrologist, Dr. Keith Bellovich, is the greatest doctor. He tells me that I am very lucky that I am in the condition that I am in right now. This condition can probably be attributed to my eating and excercise habits. I normally don’t eat garbage, and I walk a lot, go swimming, rollerskate, and play tennis. All of these activities take my breath away and I usually have to take a break every 25-30 minutes, lest I pass the hell out!

I don’t even know where I’m going with all of this. I guess I just wanted to put what I’m feeling, no matter how nonsensical it sounds, into writing. I’m all over the place with my thoughts and this is because my feelings and body aches are all over the place. There is no rhyme or reason to what my body does. It is attacking me. I am not the enemy. Lupus is.