Lupus

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On to the next area of my life that is a bit… well… effed.

Ever since I was a kid, I have had unexplained pain and I was tired a lot. I had the usual childhood desire to do everything there is to do and to get in all sorts of trouble. I was ordinary in that way. However…. there were telltale signs there was something wrong with me.

– More often than not, I was still awake when my alarm went off in the morning. Despite being exhausted from running around all day, I couldn’t sleep.

– Pain. I had headaches and joint pain a lot. I kept hearing from people “oh it’s just growing pains!” No. This wasn’t normal. I doubt most kids have constant joint pain that comes and goes for no particular reason.

– Constipation…. I won’t go into the gorey details on this one. Let me just give you the number: ONCE every month.

I was deemed lazy. Why was I so lazy? Why was I so tired? Just some of the annoying questions I was asked constantly. I wasn’t lazy! I wanted to do everything all the time… sometimes I was just really tired!

My teen years the exhaustion got MUCH worse. Now I had a bad attitude and was lazy. Oh how I hated both these blabberings. People being on my case put me in a bad mood. Feeling like crap when all my friends had neverending energy… put me in a bad mood. Not sleeping at night….. well you get the idea. If you know a teenager that sleeps a lot and has no energy or ambition… don’t call them names. Find out WHY, find out if you can help them.

When I was 21 I got pregnant. I have never slept so much in my life. I also had never felt sicker or threw up more times in my life. I would wake up at night because I was puking. I pooped 3x the entire time I was pregnant. That, by itself, could account for how tired and horrible I felt. The only good thing is that I slept but it was absolutely ridiculous how much. I couldn’t keep my eyes open when I wasn’t at work. I worked and I slept. That was IT. Most women enjoy their pregnancy. I hated it. Hated. It.

After I had my munchkin, oh my god. I can’t even tell you how tired and horrible I felt. Now not only did I not sleep at night, he wouldn’t let me sleep during the day. My entire body hurt. I was TIRED. TIRED. TIRED. I would put my son next to me on the bed and sleep. But those of you who have babies or have had them know you can’t sleep solid with a baby next to you. They make a peep and you wake up. They MOVE and you wake up. But if he wasn’t next to me, he’d scream. It was great.

When he got older, not old, couldn’t crawl yet, but oldER I’d put him in his high chair or bouncy chair and I’d turn on the TV and I’d SLEEP. Every minute I could. And this kept him entertained for a long time. Bad mommy, I know. I didn’t know what else to do. I had NO help from my husband at the time, who I call Sperm Donar or Spermy or Wusband. I was a stay at home mom and I was sick as hell.

People said I was depressed. People said I was lazy. People said I was a bad mom. All these labels sure perked me up and helped me feel better about myself ~smirk~

By the time he was two I could barely see. My joints hurt so bad I had to brace myself and clench my teeth when I picked him up. It hurt SO bad. I’d bring him outside to the park and I’d lay down and watch him play. Laziness, right? OMG I felt like I could die at any minute. I had a low grade fever every day yet no one could figure out what was wrong with me.

A friend introduced me to Dr. Schulze and his all natural herbal cleanses and my favorite, his Formula #1 that got me regular after 10 years of going once a month. That helped my joints and my vision went back to 20/30 or whatever it was.  I had energy. I started juicing and eating organic and healthier. I made my son juice from the juicer and he LOVED it. We played more, we danced, we went places, I even started jogging.

I have wanted to be a jogger my entire life but I just never had the energy and my legs would hurt after just a short distance. Now I was jogging…. not far, since I smoked from the age of 15 until I got pregnant. But it was something.

Then BAM! back to pain, tiredness, fevers, and I couldn’t figure out what had happened. I later learned that stress was a HUGE trigger for flares and at the time Spermy was cheating on me, being spotted all over town with his whore, and his drinking was getting worse by the day. When he was drunk, he had a BAD temper. But that’s not what this post is about.Things were stressful and I was sick.

When we moved out, I got better again. Not knowing it was lupus, and not knowing stress was a trigger, it was baffling to me. Soon after when bills started piling up and we were barely making it and Spermy was stalking me…. another flare. Oh if I had known then what was wrong… I would have worked less on eating right and trying to figure things out and more time on STRESS RELIEF and relaxation.

FFWD to a few years ago. I bloated up to 40 lbs heavier than I had ever been besides during my pregnancy. I kept having kidney infections no matter how many kidney cleanses I did. No matter what I ate. When that stopped,I thought it was smooth sailing until I started coughing up blood and soon it was coming out the other end, too. I was in constant pain, started having pancreatic attacks, my liver was swollen, my joints hurt, I couldn’t remember anything and was getting dizzy, my vision once again became garbage. 

After years of tests $$$$ and 3-4 Drs visits a week there were still no answers. I saw every specialist you could think of. They all wanted to deal with me individually and were too dense to realize that everything going wrong was connected. I didn’t just suddenly start going into multiple organ failure by coincidence.

When I woke up one morning completely unable to move without screaming… I knew that was the end of me. Either I figured out NOW what was wrong with me, or I was a goner. I couldn’t walk, couldn’t take care of my son, couldn’t work. I was in bed for 3 days before my son finally found my phone charger and plugged it in and I was able to use my phone. I had a male coworker come over and literally carry me out to my car and he took me to see a Dr. 

This led to a trip to the rheumatologist because my my Dr thought I had arthritis. In my organs? YES, THEY ARE ALL CONNECTED, THIS HAD TO HAVE SOMETHING TO DO WITH MY ORGANS FAILING.

After weekly visits, blood and urine testing, and monitoring how I was responding to certain drugs, he noticed my arthritis numbers went down with the use of steroids while my lupus antibody count was tripling at every visit. Diagnosis: Lupus SLE

When I got home that day, I was so confused. I had only known 1 person with lupus and the skin on his hands was rotting off and sometimes they’d hurt so bad he couldn’t even open a door by himself. Nothing was wrong with my skin. It wasn’t just my hands that hurt. I knew so little about lupus I didn’t know there were three kinds. I didn’t have the kind that “just” attacks your skin. I had the kind that attacks connective tissue; organs and joints.

I did some Googling. I have to say I clicked on all the WRONG links. The first thing I saw was a video of a man talking about his wife and how she had been trying several drugs to settle down her lupus flare. She was doing better, feeling better. Then one day she called him and said she felt unusually tired and sick and she wanted to see her Dr. He said he’d meet her at the hospital. By the time he got there, she was dead. Her heart had given out. WHAT!?!?!?!?!!!!????? I had read that lupus is rarely fatal.

Well… if a person with lupus dies of heart failure, their cause of death isn’t lupus. It’s heart failure. If a person with lupus dies of kidney failure (what usually kills us off) our cause of death is kidney failure. Not lupus. I read horrible stories until I found a blog by a woman whose two teenage children had the same symptoms I had. She seemed positive so I read on to find out what regimen they were on and how they were doing.

They were dead.

I’m telling you right now… if you have an incurable disease, do NOT read about it on certain sites. If you see something negative move on. By the time I gave up on learning more about SLE, I was bawling and thought for sure I would die and soon. What did that do to my immune system? Nothing good, I can tell you that.

No one I read about that had died even seemed as sick as I was. I was in my 20s and was shopping for shower chairs because I couldn’t stand up long enough to take a shower. I couldn’t lay down in the tub or I’d never be able to get back up gain. Since my knees and hips wouldn’t bend and it KILLED with PAIN to use my hands or arms, getting on and off the toilet was comical. I was looking to have rails installed next to my toilet to help me get up and down. I WASN’T EVEN THIRTY YEARS OLD.

I looked at my son and pictured what his life would be like without me and it wasn’t a pretty picture. His dad is an absolute P.O.S. His step mom couldn’t give a smaller shit about him. My parents…. well I’ll possibly delve into that topic one day but not now. It wasn’t a positive future for him if I kicked it. That was the ONLY reason I didn’t give up. My son saved my life.

I won’t go into a million details. I’ll just say the past few years have been HARD. Trying to keep my job, which is NOT a sit down job. Trying to keep my son active and healthy and leading a normal life. Trying not to sleep my days away. Dealing with the teeth grinding, cursing under my breath PAIN every night.

It has been rough. I have learned a LOT over the years. I am not one of those people that passively sits there and lets Drs kill them. I refuse to take 13 medications for the rest of my life that do more damage and will kill me faster than the lupus will. I’m not the type of person to blindly accept that I’m gonna die because THEY say so. But I’m also a realist. I know this will never go away. I don’t expect to be in tip top shape all the time. It will be a battle. A slow, hard battle. And I won’t give up.

For my son.

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About Happy Lupus

I'm just a single mom with lupus trying to make it in this crazy world!
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