Hey Everyone

Yes I'm back. It was a bad time of it this go around but I'm pushing through. I still have painful RA episodes in my joints a few of my fingers are still swollen and the skin on the side of my pointer finger on my left hand is still split. I'm still wrapping that in a band aide with antibiotic ointment. I have a few bruises that appeared with no warning. I have no clue where they came from. But hey, I'm back.

What really put me out is the fact that I suffer with the Cutaneous Lupus (skin lupus). Sunlight affects me almost like it would a vampire. I have to avoid the sun and harsh lighting indoors. If I'm outside I have to wear a 70 SPF sunscreen cream or higher, a broad rimmed hat and long sleeved shirt or blouse and sometimes gloves. UV rays are the enemy and so is fluorescent lighting. I'm not making this shit up. It happens.

A week and a half ago, I was in a hurry to run errands and I started feeling pain in my fingers, wrists, elbows and shoulders. I blew it off because I feel like this all the time. Then the fatigue set in so quickly it felt as if I was blindsided. I realized I was having a full blown lupus flare and I could do nothing about it but hurry through and get home. 

Things escalated to say the least it felt like I was going to collapse right there in my car. What was the scary thing I started to cry because the pain and the brain fog was setting in. It was getting worse by the minute. The only thing that kept me going was that I had to get home, now. That was all I could think of.

When I got home the raised red patches on my skin started and then the itching and the lupus signature butterfly showed up. It was ugly, painful, and nothing could be done. I was in a full blown flare episode. I took 2 Tylenol because I was out of Arthriten, and a warm shower to cut the joint pain. I went online and told my friends I was having a "bad day" and I was going to be off line for a few days. Then I went to bed and silently prayed for sleep or death, maybe both. I don't remember. 

I spent the next four days and nights sleeping, not sleeping, and moaning in pain. Not eating. David got really upset and wanted to take me to the ER but I snapped at him, "and what would they do for me? They have no clue how to treat a lupus patient." That is the truth. 98% of all ER doctors have no clue what to do for women and men with Lupus. So I toughed it out and did what I could to make myself comfortable.

My symptoms were severe brain fog, I couldn't speak a coherent sentence if I tried. I just couldn't talk without reciting gibberish or wondering what I just said. Every joint in my body felt as if someone had my Voodoo doll and they were pulling body parts off of it. I had what resembled hives all over my hands, arms, legs, and neck. They were itchy as fuck too. At one time, I can't remember when, I got really cold and Raynaud's turned three fingers on my right hand crazy white then dark blue. The blood vessels were constricting for no reason, cutting off the blood flow to my fingers and they were feeling painfully icy cold. I had to hold them under running hot water to get them back to normal. That right there is not only unnerving but dangerous and it hurts like a muther when it happens. My fatigue was off the charts. I think fatigue and RA body pain were fighting each other to see who would win dominance over my body.

By Wednesday I was able to talk to friends on IM or email, somewhat. But I would get tired and go back to lying down and contemplating my existence. That happened in spurts. Then insomnia claimed the rights to my body and mind. I think I finally went back to sleep Saturday evening. I woke up and felt like shit all stiff and in pain but my mind was telling me to push through this shit. I wasn't going to let it have another day of my life. So I pushed. Hard.

I was almost back to normal by Sunday morning. My wrists and shoulders still hurt like hell right now and all I can do is take Arthriten for the RA joint pain. It helps for only 6 hours. It took 70% of my pain. Which is better than nothing. I can't take the meds for Lupus because of A fib. Hydroxychloroquine fucked up my heart when the last Rheumatologist prescribed it without checking to see if I had heart problems. It made my heart murmur worse. It caused my irregular beats. Lucky me. The rash is gone but some raised and thickened skin is still there and splitting because I can't seem to keep it hydrated with lotion. My fingers swell and hurt when they feel like I'm not hurting bad enough. 

All in all I feel like it's under control. Somewhat. A bit. For now. I guess. I've been a lupie for 40 something years, 33 of it undiagnosed or misdiagnosed. When I was finally diagnosed,  the doctor said I fell into the Mixed Connective Tissue Disease set. MCTD for short. Most Lupus patients have several different autoimmune diseases that will attack them in turn or all at once. I have Rheumatoid Arthritis, Raynaud's, and Fibromyalgia with C. Lupus. It's funny because Fibro can mask Lupus and vice versa.   I also have noticed weakness in my arms. I'm not sure what that is but I can't carry anything over 10 lbs. 

Being in my 70s now, it's getting harder to fight the tough fight. I know lupus kills and it scares me shitless. Kidney failure, heart attacks, brain seizures and the list goes on. Science is working on a cure and they are really close to it. I'm hoping I live long enough to see it happen. But until then. I have nothing else to do but fight this shitty disease along with the help of my family doctor. So yeah, I'm back. For now. With a pissy fucking attitude. Fuck you, Lupus.