Where to start. I am not a writer and not an expert on Blogging so please be kind ... These are my words and my experiences.
What is Lupus? Wikipedia describes it as-
Systemic lupus erythematosus, often abbreviated as SLE or lupus, is a systemic autoimmune disease in which the body’s immune system mistakenly attacks healthy tissue. There are many kinds of lupus. The most common type is systemic lupus erythematosus, which affects many internal organs in the body. SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. The course of the disease is unpredictable, with periods of illness alternating with remissions.
I describe it as- What the Heck happened to my Life? Why am I always in hellish pain? Why do I feel sick all the time disease, Instead of being able to do normal things I am stuck to the How do I feel today and the can I do that won’t need three or more days of recovery time? My life is now dependent on how I feel each morning and I can honestly tell you IT SUCKS! I feel so lost and so depressed that it is somewhat a daily deal. The hurt I feel is real and I can’t describe it to anyone. Okay let me try, Agonizing bone crushing pain that I feel all over my body, it’s like needing to pop your knuckles but you just can’t in a way. It’s like Hook me up to a Morphine Drip and let me be, it’s like when was I in a car accident? (Mind you I have never been but I can imagine) it’s like where are the zombies that are ripping out my internal organs?
How was that? Because this is how I feel daily. This is extremely hard for me due to my Non-Tolerance for pain. And at times all I can do is medicate myself and move on, let the guilt of lying in bed and letting my life slip away happen. But amazingly I never do I rest for a few days and start to feel better and I start the process all over again. I don't understand the why and how this happened to me and probably never will, all I can do is TRY to make each day count and know that I am doing the best I can. (This for me is beyond the hardest thing in the world Pain takes a backseat to the guilt and depression I feel when I am immobile and useless to the world) I do have to say that I am blessed with an amazing support system. My wonderful, understanding husband has been by my side from before and when I was finally diagnosed with this chronic disease. He is my rock and I honestly don't think I give him enough credit. (Thank you my sun and stars) My kids are amazeballs they are there with a helping arm to steady me when I walk and to help me with anything really. They don't let the fact that I am taking 15 mins to try desperately to get in the Smiths door to do a few items of grocery shopping distemper them , for this I am grateful . My few wonderful friends who are there to listen to me vent, cry and just feel sorry for myself, who love truly unconditionally and who don't take offense that I just can’t get out and do things the way I used to. The ones that if I break a promise or a get together understand that it’s not my fault but this disease. Who will be patiently waiting for that day that I can and trust me that day is one to remember... For you I am truly blessed.
This summer has rocked my world I spent time in the hospital for a few different issues and my bed sick because the sun affects me. I joke that I am Nosferatu but its true the rashes that I got from 5 mins in the sun lasted days. The sun would touch my fingers barely and it felt like they were on fire.
I would attend Logan's football games looking like it was winter (Leggings, Levis, long socks, tennis shoes, shirt, sweatshirt, hat, sunglasses and at times Gloves.) If the sun touched my neck it seared the pain more so the hood would be up over my hat, as I looked around at all the parents in tank tops shorts and sandals I hated them secretly. Then I would see my son plays and that all would disappear. I understood that sitting down for his game would cripple me and that it would take me 20 mins to walk to the car but I didn't care. I couldn't let my son down I had to be there for him so he knew that I cared so this is what I endured. The 4th of July was spent in Bed watching Fireworks from my bedroom window crying with Lonnie right there by my side.
Have I accepted that this is my life now? Sort of, no, not really I don't think you ever want to accept that to feel NORMAL is a lot of medications. It takes a lot to smile and say I am okay and not burst into tears.
As a Licensed Master Esthetician Not being able to prevent the rashes kills me I have learned so much about skin care and there isn't a darn thing I can do. I still am religiously using my Sunscreen, Moisturizer and nightly care. Using the same cleanser, eye repair and moisturizer, toner and the other night I applied as normal but there was a major difference the pain I felt was too intense I washed my face and still felt the burning sensation on certain parts of my face. It felt as if I had giving myself a Chemical Peel. That is the day I realized that I may have to change my skincare routinely because I am not in control of what my skin is doing. The products I used were Philosophy cleanser and Simple Moisturizer, Products that I haven't had any reactions with before.
Makeup helps in ways to cover the rash but when I look in the mirror I see the pain and hurt I feel beyond the makeup. The Mask I have on will never cover that up.
It is amazing how this disease affects the skin! Products I have used for months can one day just burn my face, Foundation that I love and I know works for me can suddenly irritate my skin to the point where I have no choice but stop wearing it. This makes me constantly on the lookout for products that I can use that will help me to feel normal and pretty even if it’s for a few hours.
(On a very non-existent budget) I NEED TO FEEL THIS WAY to survive. I have reached out to companies to see if they would be willing to send me samples to try so that I can help educate the Fighters of Lupus what works and what to stay clear of. We will see how this adventure works out so far I haven't heard anything back. I am still trying to spread awareness about this disease and hopefully now with the recent Celebs that are also facing this we can get enough attention to the World and one day have a Cure. Well my fingers are throbbing and I am exhausted yet again so I must rest. Till next time keep on fighting and know you are never alone. (Too Get this through My Mind as Well)
Love, Hope and Health,
Misty
Posting a few pictures of different days and Different Rashes This is very hard for me to show these are the days I feel the most depressed, beaten and exhausted. Be Kind
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