Posted by: hockeygrl1 | December 23, 2013

How I was Diagnosed with Lupus

I’m going to commit myself to writing. There it is; I said it. This is after I read Nikki Sixx’s This is gonna hurt and The Heroin Diaries. If he can do it (yes I know he’s famous and that’s why he has a book) than I can do it. After all, I’ve looked up to him since I heard “Shout at the Devil” at age 12; followed by my all time favorite song “Home Sweet Home”.

I suppose this is enough of the ode to the beautiful Nikki.

What should I tell you? My life has not been easy. I’ve lived in the lower middle class my whole life. Now it seems that the dollar amount that was considered middle class has swung to the right while incomes have not…. It leaves me as lower class now. Yes a lot of people are doing a lot with less these days, my family included.

It feels like since I’m starting over, I have so much to tell you about my messed up life. Here’s a brief summary: Bullied all through school, only got a handle on it my Jr. and Sr. years of high school, fighting with my mother (I love my mother but this is a big part of who I am today), a disease that was hindering my progress that was only finally diagnosed at age 35, a marriage and a divorce, 2 kids that I raised mainly alone with some help from family, a controlling boyfriend, a not controlling boyfriend but he couldn’t handle me being sick, buying a house, losing a house, moving into my parents basement and now trying to figure out what I want to do with my life. (you can breathe now)

Where do I start? This is where I get stuck.  I have too much to tell you and I don’t know how to get it all out of my head.

I was just flipping through the pages of This is gonna hurt again for inspiration. Between the pictures and writing, there has to be something that gets me going. I look at the pictures, all beautiful in their own way; the lighting, the subject, and the pose; it all brings the picture together to tell a story. And it’s beautiful.

Seeing a picture of a gravestone reminded me about the day I had to face my mortality. Not because of drugs (I can’t say I’m totally innocent here but alcohol is my drug of choice) but because of a disease. This is something I had my whole life, but no one knew it. I can name countless times I was in what they call a flair and doctors told me to slow down because I’m just over tired and never looked for this *shakes head in confusion*. Who can sleep all day and then still sleep at night? Me. The doctors never found that odd enough to run some simple blood tests. Oh well, it’s done. Can’t change it.

My body crashed on October 3, 2007.  I will never forget that day and how it has drastically changed my life and the life of my children. Thinking back brings tears to my eyes. Really what I see is my dad sitting at the end of my bed as I’m rolling around in pain with my bucket incase I vomit. He is trying to look strong, but is wringing his hands. I know he’s scared shitless. Maybe more than I am at this point because I’m so sick I’m not even sure what is going on around me.

They ask me to pee in a cup before I change into my hospital gown; all the while doctors and nurses are flying around my room getting things ready. Even now, I’m surprised they let me out of their sight. I do all the things you’re supposed to…. wipe with the special wipe from front to back and make sure it’s a mid-stream sample. Then I lift the cup up and holy fuck! My pee looks like coffee. I sit there for a moment already feeling like I’ll puke and start to sob.

What is going on with me? I was just in the gym the other day running on the treadmill. I drink water instead of pop and cook my meals at home. How can this be happening?

I get myself together and go back to the room. I sneak a peek at dad as I set the sample on the counter. He’s trying to hold back tears. He shakes his head as he tries to hold of the urge…. He’s trying to be strong for me.

I get into that sexy gown they have and climb under a warm blanket while they look for a vein in my arm. (Me, my mother and daughter have the worst veins for drawing blood and placing IV’s) It takes a few tries because I’m dehydrated. Needing to settle for my hand as a last option, I let out a squeak of pain as I feel the needle slide up and in my hand. I’m thankful it’s over.

And thankful for what comes next considering the prick in my hand was way less painful than the feeling of someone hitting me with a sledgehammer in my back – oh wait, I need to vomit again – . I’m writhing in pain. There are no questions from the doctor as he just gives me morphine. I feel the warmth take over my body slowly from the needle in my hand. That arm first, then my belly, now legs and finally my head and back. *sigh*

Finally, some relief. You know how you don’t really know how much pain you’re in until it’s gone? No? Then you haven’t felt real pain.

Slowly I begin to settle down and lay still under my warm blankets. Always with the bucket close by.

Now the questions come: When did this start? What do you rate the pain at now? Can you hold down water? When was the last time you ate? When did your urine change color? Do you have pain in any other area?

I do my best to answer the rapid fire questions coming, to my surprise from the doctor instead of the nurse. He is looking in my ears, nose and throat as he asks. You know the standard thing doctors do every time you visit their office. He looks to my dad to see if he has anything to add.  Dad just shakes his head. I can tell hes holding back his emotions again for my benefit.

They push more morphine when the first blood tests come back. The doctors realize how much pain I am really in; Pancreatitis with lipase numbers in the thousands. I think normal is around 100 or something. Yes, this is a very painful affliction. I seriously think someone is stabbing me in my back. I surrender to the warmth again, but unforchantly this causes the next couple hours to become a blir.

I’m trying to remember the tests that were run that night; CAT scan, more vials of blood, x-ray and who knows what else. I wonder if I was that doctors only patient. It sure seemed like it that night or maybe it was the morphine.

I know I wasn’t in the ER long before they decided to admit me.The treatment for Pancreatitis is to not eat or drink until your lipase and albumin are closer to normal. At this point I was so sick, I didn’t care.

Dad had the difficult job of arranging care for my children and dog for my hospital stay. I had the job of contacting my employer to let them know I’d be out of work for at least a week.

I didn’t know that this wasn’t the end of the story at that point. There were other worries the doctor was checking on, but I was so far gone from the morphine that he didn’t tell me.

My dad gave me a big hug and kiss on the forehead and told me to just rest and get better. He’d take care of the kids.

I had never rode up to a hospital room on a gurney.  Even when I was in labor, I walked. This time I was so sick I hardly remember getting to my room.  Looking back, that day is all a big blur. Doctors, nurses, IV’s, blood drawn, X-rays, CAT scans, more drugs.What did happen to my ice cream bucket?  I really didn’t know what was going on and if I did I would have been scared shitless.

That first night every 4 hours I’d push the button for more drugs. The pain was worse than labor and I didn’t know if it would ever end. There was no mention of lupus at this point. The focus was to make me comfortable and they did with lots of drugs.

Don’t go to a hospital expecting to rest and get better. I guess getting better will happen, but resting is a whole other thing.  They wake you up in the middle of the night, yea, every 4 hours to take your vitals. I don’t get it. Why wake a sleeping sick person? Nothing pissed me off more. And they’d ask you your name and date of birth. Read the bracelet; I was happily drugged up. (enough of my rant)

The days started to run together and I’d swear that it was a week before anyone mentioned lupus. I knew all about my pancreas and they were trying really hard to figure out why it was acting up, but not a single word about lupus.

Funny thing, they thought I was an alcoholic, yep me. They tested my blood because they didn’t believe me. (I don’t need to drink. I choose to drink. There is a big difference.)

I knew it would be about a week stay because I couldn’t eat or drink while I waited for my numbers to go down. I was sharing a room with someone that could eat and drink so mealtime sucked. Yes, I got to smell food I couldn’t eat 3 times a day and when my mouth was dry I had to swish and spit; nothing by mouth except a tiny amount of water with pills 3 or 4 times a day. I thought I was going to lose my mind, but by the third day the stomach stops growling and I didn’t even know I was hungry anymore.

The hardest part was when my kids visited. I didn’t know how to explain my illness to a 12 and 14 year old. It was really hard when they weren’t sure what was wrong with me or how long I’d be in the hospital. My mom and dad were helping with the kids and dog as I mentioned before. My children wanted to stay in our house alone with the dog, so mom and dad would feed them dinner and bring them home. They spent 2 weeks like this. The guilt I felt was unbelievable.

The second day I was in the hospital, the doctors sent me for a special scan of my pancreas, gallbladder and all the pipes and stuff attached to it.  The tech told me it was going to take an hour and I had to lay with my body in the tight tube still as I could the whole time. About half way threw the tech needed to step out of the room for a little bit. I don’t know why I didn’t have a button I could push if something went wrong…. but I didn’t and something went wrong.

I got that familiar feeling in my stomach. The awful nausea that I had for months leading up to this hospitalization. I couldn’t do anything. I was in a tube up to my neck, laying on my back. All I could do was turn my head and vomit in my hair. I started to cry. It’s just unbelievable to me at this point. How could this happen? What was wrong with me? Would I ever feel better? I was laying on a metal table puking in my long hair. I wasn’t just crying; it was sobbing. I was thinking, “Why me?” and there was no answer.

I had to lay there, in my vomit until the tech got back and then he cleaned me up the best he could because if i moved, the hour long test would have to start over. A nurse had to help me wash my hair. I was too sick and exhausted to do it myself. Really all I could do was sleep. There was no eating; just lots of pain medication to get me by.

I guess that’s why much of this was a blur; the morphine, but without it, the pain was unbearable. Maybe not being able to remember is best. It was a scary time… a time that brings me to tears when I think about it to this day.

I think it was days before the rheumatologist was brought in. I could be wrong. My urine was still red. Red with blood. This is when lupus was brought up. When they said something was wrong with my immune system the first thing that popped into my head was AIDS. It seems stupid now, but that was what I associated with an immune system disease. I panicked for just a minute thinking “How will I tell Eric” (my boyfriend at the time). Than the nurse said, “It could be lupus.  We are pretty sure, but we’re going to do a kidney biopsy to confirm.”

Ok, lupus…. What the hell is lupus? I’ve heard of it. I think my friend from work Mary has it and gets sick easily, but what does this really mean. Did I catch this? Why didn’t someone catch this sooner? I thought, “What the fuck am I going to do?” and began to sob, I mean ball for the first time since I entered the hospital i was really scared.

I asked the nurse if they had any information I could read on lupus because I wasn’t sure I knew anything about the disease, the treatments or prognosis.

I’m shaking my head right now.  I was 35 years old when this happened. I just bought a house, got a new job, had a boyfriend and a dog and now the shit has to hit the fan.  Why me?

I was reading the printout from the nurse…. “Lupus is a chronic inflammatory disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.” Great it can affect anything, not just my kidneys. “ The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.” What face rash? I’ve never gotten one. No wonder why the doctors didn’t catch it.

On to the symptoms section… “No two cases of lupus are exactly alike.” Really? This isn’t sounding good. “Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.” This could be permanent? Yea, it did kick my ass suddenly. “The most common signs and symptoms include:

  • Fatigue and fever
  • Joint pain, stiffness and swelling
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
  • Skin lesions that appear or worsen with sun exposure
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches, confusion, memory loss”

There has been some fatigue lately. I have been falling asleep on the couch right after work before I have even made dinner. But other than dry eyes, I haven’t had any of these.

Causes: “Lupus occurs when your immune system attacks healthy tissue in your body. It’s likely that lupus results from a combination of your genetics and your environment. It appears that people with an inherited predisposition for lupus may develop the disease when they come into contact with something in the environment that can trigger lupus. The cause for lupus in most cases, however, is unknown.” Unknown????? What do you mean UNKNOWN???? How can they not know why I have this fucking disease? If they don’t know why, how can they fix me? Am I going to die? what about my kids? I need to be there for them. Why me???? (I’m balling at this point.  Just sobbing into my pillow and of course a nurse walks in)

I had to let her take my blood pressure, temp and pulse again.  Every 2 hours. It drives me crazy. I said it before, you don’t get rest in the hospital.

By now I’m really freaked out. My urine looked like coffee and it felt like someone was stabbing me in the back and all I wanted to do was sleep and now I had to battle a disease with an unknown cause; unbelieveable.

The complications section is long so here are some highlights…. “Inflammation caused by lupus can affect many areas of your body, including your:

  • Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and leg swelling (edema).
  • Blood and blood vessels. Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).
  • Brain. If your brain is affected by lupus, you may experience headaches, dizziness, behavior changes, hallucinations, and even strokes or seizures. Many people with lupus experience memory problems and may have difficulty expressing their thoughts.
  • Infection. People with lupus are more vulnerable to infection because both the disease and its treatments weaken the immune system. Infections that most commonly affect people with lupus include urinary tract infections, respiratory infections, yeast infections, salmonella, herpes and shingles.
  • Cancer. Having lupus appears to increase your risk of cancer.”

This disease sounds just lovely. I’ll lose my mind and body and have an increased chance of cancer. I can’t get a break.

It was late at night by now and I was scared out of my mind.  They were taking a kidney biopsy in the morning and I have to stay awake while they do it. I decided to read the rest of the information on lupus in the morning.  I got morphine and a sleeping pill that night.

I didn’t really read the treatment section.  I was stuck on the things that could and were going wrong in my body and facing the biopsy was scaring the crap out of me.

The next morning was the big procedure. I told them I was a wimp when it came to needles and things so they gave me a valium to relax me but not put me to sleep.  It was done in an operating room, you know, freezing cold, sterile, bright and scary. There was a CAT Scan machine in there so they hit the kidney. The worst part was numbing the area all the way down to my kidney with novocaine. It took many shots, but who knows how many because I was loopy again.

Then it was time to stick the big needle gripper thing in my back.  At this point all that was felt is pressure because the novocaine was working.  I went in and out of the CAT scan machine multiple times until the doctor had the needle in the right spot and wola! a piece of kidney was pulled out of my body.  It looked like raw liver by the way.

I had to spend the rest of my day laying on my back because of the chance of internal bleeding. Yes, everything was risky and there was hardly any good news. Oh yea, it was going to take 2 weeks for the results. I was thinking, really?? But they were already sure it was lupus, they just didn’t know the extent of damage to my kidneys so on come the medications.

I wrote earlier that lupus is different in everyone so the treatment is different in everyone too. The doctor wanted to give me chemo. Yep, the treatment for lupus can include chemo. I chose not to get chemo because it could make me sterile. Instead we decided on CellCept, prednisone, and plaquenil. None of these drugs were developed to treat lupus.  CellCept is an organ rejection drug, prednisone a steroid and plaquenil is an antimalarial.

This was the beginning of the end of my stay in the hospital.  I was on a soft food diet; broth, pudding, bananas…. nothing exciting and my numbers were saying the pancreatitis was getting better. My urine was still brownish red, but it would stay that way for months. One of the joys of having kidney problems as well as having to store urine in your fridge when you do 24 hour urine tests… gross!

Eric (my boyfriend) brought me home. I was so weak. He was a sweetheart and got pizza for dinner for the kids. I don’t think I ate any.  Bella (my dog) missed me so much she climbed on my lap and would leave my side.  She even came to the bathroom with me. My kids watched a movie with me that night to get some mom time. It was all I was up to.  I was still so sick and the exhaustion was unbelieveable.

This was just the beginning of my journey with lupus. I’m still trying to adjust to life with it and make life better for myself and others. Who knows what the future will bring.


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