My Life with Lupus!

Living with Lupus has been a very trying road. I often have rants/venting session on my personal FB but always to have a positive aspect. I never want to let anyone know how hard it really is or bum any of my friends and family out. I am apart of many online support groups and follow many groups on YouTube and FB. But I do also have my private rants. Upon finding out my little sister also has Lupus, I'm choosing to share some of my private rants to help others understand what MY life is like living Lupus...Maybe it will shed more light on why I am so passionate about Lupus Awareness. Before my diagnoses I had never even heard of it. I didn't even know I had it! I went in for my 3-year check up (I had the all clear after having my second child) and since I was there I asked my Dr. about my "black thing in my ear" (Turned out to be discoid Lupus after a biospy, originally they thought it was melanoma) and my achy joints, swollen hands (originally my Dr thought it was R.A. so she order the ANA test) and my fatigue. I didn't go in sooner because I thought it as due to being a mom of two and getting older. My Dr just laughed and was like "NO! You should feel like this at 27"=) At first I was excited to have a reason for all these random symptoms. But as my list of symptoms has grown so has my research about Lupus. It's so hard to wrap my mind around the "But you don't look sick disease". My Husband and kids do understand how difficult it is. But I don't like appearing weak to anyone. I am learning to open up and let others in as I cope and accept this very confusion auto-immune disease. So here are some of my very private daily struggles in rant form......

2013
I f*&%ing hate lupus!!! I don't know exactly how to express how frustrating it is to feel like your body if failing you in a new way everyday. If it's not the hair loss, constant headaches, body aches, random blindness,  numbness of hands, legs, arms, toes, having my skin randomly tingle in one spot or all over, feeling foggy most days and not remembering anything. I feeling like I'm losing my mind. At the gym I'm been afraid to take a class in fear I wouldn't be able to finish. I haven't been able to run or do the stairmaster since my toes always go numb and I easily lose balance. I got new insoles thinking that would help. It didn't. Garrett got me new shoes. Still didn't help. I'm left to the elliptical and bike.  I have been giving it my all yet its not enough to make my weight loss goals happen.  Not to mention my sore throat I've had for a week. My intestine problems I've had for the last 3 days. I'm so sick of not being symptom free. I'm sick of not being able to push myself. I'm sick of pretending I'm ok and everything's fine when I feel like I'm barely getting through the day. I have gone sat on the toilet to go to the bathroom twice with my underwear still on! It's those little things that make me feel like mind is GONE! I write down or leave the plate out or leave the dishes in the sink just so I can remember if I fed Neva some days. Know wonder Texas was so awful. I hate feeling robbed! Robbed of my happiness and health. I try to remain positive but some days it's nearly impossible:-/

2013
I feel like I'm going to explode! I'm drowning in life. My anxiety is so high its paralyzing.  My whole f$%#ing body hurts. My f*&%ing lower abdominal uterus area feel like they are ripping from the inside out. This pain is excruciating.   My emotional stability is not good.. I'm so lost. So confused and feel all alone. Is this really what I have to endure the rest of my life???

2013
Yesterday I had diarrhea. Today started off with it. It was so draining I had to lay down for a bit to try to recoup from my fatigue. I thought I was feeling better but just as I was getting ready to go do the yard work I have been wanted so desperately to finish when it hit! The all too familiar abdominal pain. It rips through my whole body. The sweating, the whole body ache, the light headedness and then the excruciating cramp. It feels worse than a contraction during labor. The pain in so extreme I feel (and sometimes do throw up) my head hurts, my vision blurs, the tears start and I literally feel like I am going to die. I pray to stop hurting, for God to just make the pain tolerable. Or to make this wave end so I can recoup, and catch my breath before the next one hits. Then within seconds of the awful pain starting to subside the next one begins. I resort back to the labor breathing from years ago before I end up screaming an agony. Just wishing I could feel any other pain but this. Poor Neva checks on me and normally I'd embarrassed but instead I can't even think. When it again subsides all I think is if I pass out will she know how to call 911 will the find me pantsless on the floor? Then it all goes away. I like the pain never happened. I feel fatigued and weak. I lay down recoup for a bit until I feel like I go on. I may be super slow but I will do something productive.  I will embrace the fatigue because its better than the pain. I wish this was a one time thing but its not. It maybe the end for today but will a next time. It never gets easier,  never less painful but I find solace in knowing I can survive it, until the next time.

2014
I know I should be happy but I'm resisting the urge to cry. I know I need to get up and weed wack but I just want to sit. I know I should have motivation but I don't.  I got sleep but am still tired. All I want to do is go to bed but I don't wanna dissapoint the kids. Normally I would be balls to the wall but not lately. Know matter what I do I can't shake it. I'm sick of being cranky,  irritable and snapping.  I don't like feeling angry and tense. This this a thyroid problem?  A hormonal imbalance?  My anxiety getting stronger or depression setting in?

2014
Why does my list of issues keep growing???
Discoid Lupus
Lupus SLE 
Asthma (courtesy of lupus) 
Secondary Depression (courtesy of lupus, caused it physically not chemically) 
Acanthosis nigricans (courtesy of???????) 
GI issues (courtesy of Lupus but real cause????)

2014
So it's been a few months but it's the 4th time my insides have done this! Today early afternoon I  plagued with that all to familiar excruciating pain. Severe cramping worse than contractions. Feeling like I was constipated but nope total opposite.  I felt light headed, hot, began sweating and screaming out in agony. The pain was worse than ever before. I slept, laid around and lightly munched til about 10.  Since my episode the rest of the day my bloated tummy was filled with mild lower abdomen pain and extreme gas.Then another episode=(


Thankfully I found an amazing Chiropractor and seeing her on a regular basis has taken care of arthritic system, my eye problems and lots of my brain issues.