BRUISED BUT NOT BROKEN
I have tumid lupus. It is rare. It has all the symptoms of SLE (systemic lupus erythematosus) which range from;
- severe fatigue
- joint pain
- joint swelling
- a rash on the cheeks and nose, which is called a “butterfly rash”
- hair loss
- blood-clotting problems
- fingers turning white or blue and tingling when cold, which is known as Raynaud’s phenomenon. Other symptoms depend on the part of the body the disease is attacking, such as the digestive tract, the heart, or the skin <<<< this is my Lupus… all mine.
Tumid Lupus attacks the skin from the inside out leaving permanent bruises. When I was first dating my husband, many thought he was harming me due to these bruises. To me, it was actually quite funny. What else can you do but laugh…
I was in a serious car accident during the first months of us dating. During my hospital visit, not only the OPP Officer but also the Nurse asked: “what are these bruises!” (on my right arm) while glaring at my boyfriend\now husband. We thought this was hilarious because if you know me, you know what if anyone were to physically assault me, they need to make sure that they’ve knocked me out because their life would be in immediate danger. I responded “it’s my lupus” …which I hate because I am stating that I own it, it belongs to me but I don’t want it there. I didn’t invite it into my body. I don’t enjoy being its host. This is also why I give “lupus” some character and call it Mr. Lupus.
It’s become this unwanted guest that eats all your food and drinks an enormous amount of booze and just hangs out causing annoying factors in your life. I picture Mr. Lupus with his hands in his pants on the couch like Al Bundy, but instead of shouting chauvinistic statements, Mr. Lupus shouts directives to the T cells (lupus cells) “attack the arm … make it burn… tomorrow we attack the back”. AND when I inject my Methotrexate meds, I picture that I can hear Mr. Lupus screaming… “RUN!!!… RUN for your cell lives!!… I’ll get you another day my pretty!”.
Oops sorry, that was a huge brain fog… thoughts off track…. LMAO
I couldn’t imagine what it would feel like to have suspicions aimed at you for possibly hurting someone. Many cannot think outside the box, surprisingly this happens in the health profession as well. Once Mr. Lupus is disclosed many say “oh that makes sense”. My husband usually responds with, “if you knew my girlfriend\wife you’d know I’m the one at risk for being harmed” …. And then we laugh and laugh. Not because any of that would be true and\or happen but because I grew up in government housing, the projects and had to learn how to “whip” some ass if needed. I am a very strong woman: mind, body, and soul. I don’t take shit from anyone. Not from any person and certainly not Mr. Lupus.
I am going through the longest Lupus flare that I’ve had in a long time, almost 6 weeks. Mostly due to the inconsistency of the weather. When Mr. Lupus is active and attacks, I am beyond tired. No amount of sleep is enough sleep. Those bruises burn… like a bad sunburn and when really bad, my skin is on fire or a better way to describe it is… the bruises can feel as though someone is burning me with a cigarette. This is usually when the lupus is most heightened. My gums also become inflamed and bleed for no apparent reason. Mr. Lupus can also bug Ms. RA and cause her to flare as well. I’m lucky, this time around the Infusions (biologic medicine given via intravenously) is protecting Ms. RA with “the wall” it has created around the RA cells to slow down the progression and minimize flares.
I have been trying to function with all of this going on. I’ve been trying to work through it using yoga. Yoga right now is my BFF. Other than weekends, I work, do yoga, and go straight to bed. There is not much more I can do right now if I want to continue to win this battle (flare) against Mr. Lupus. You only heal when you sleep.
The trick or ammunition to use in fighting a chronic illness and\or auto-immune disease is living your life. Even if it is in small spurts. Live, laugh and love is the key. I’ve gone camping, even though I hate… LOATH dirt… to be with loved ones and around laughter. I have gone to yoga 4 times a week for the last few weeks and used my body to its limits. This has caused me to gain strength in body and mind. I have also broken down and cried cause some poses cause me a great deal of pain. I cry and get back up, to try again. I have worn heels (if only for an hour) and felt like my old self. I have socialized and loved and laughed. I also strongly believe in mind over matter and my thoughts continue to be “I am genuinely bruised but I am not broken”. I can do this…
I am living my life the best way I can while fighting these unwanted diseases AND right now I am winning. Keep fighting… you may be bruised but you are not broken.
2 thoughts on “Brusied But Not Broken”
I’m bawling as I read this. I, too have Tumid lupus. I don’t have RA, but I do have Crohn’s disease and a rare form of psoriasis (Palmar pustular). My head hurts, I haven’t slept in 3 days. My feet hurt so bad (joint pain), had low grade fever and chills all night last night. My Crohn’s is really bad right now, so I can’t even have Tylenol for my headache, much less ibuprofen for this relentless joint pain. All I can say is thank you for making me feel understood. I feel so trapped in this cycle right now… it’s been weeks of wave after wave of Crohn’s, then lupus. I just want to feel rested. Thank you for knowing how I feel.
Thank you for being brave enough to share your story with me. I am glad you found some comfort and understanding in my posts. I also hope you will find some insight as well. It is not easy being chronically ill but we do deserve to find a way to love and live anyway… keep fighting ! Ox