14 years ago I was diagnosed with lupus. A year ago that diagnosis was changed to MCTD. Today, I am taking back my life. This blog is my journey.
Lupus didn't change my life that much--at least not as much as it could have. I had tests for my kidneys. Tests for my antibodies. Tests for my heart and lungs. Tests to determine if more tests were needed. I took meds, starting with Prednisone on which I gained many, many pounds and a dark feeling in my soul. I dropped the Prednisone, dropped the dark feeling, and dropped the doctor. I found a DO who would prescribe meds and help me do natural remedies. I was sore, I was tired, I had Reynaud's and I learned about RA (rheumatoid arthritis). I had periods of time when I was exhausted and friends brought in dinner and mopped my floor.
I told my parents I had lupus; I might have told some of my siblings, but I am not sure anymore. I know I said little to them. Mostly, I went along refusing to deal with the disease and refusing to see it play out in my life. I was uneducated and I didn't care. When I had a "flare," I decided I was just tired or just over-extended. When I had surgeries and I bled out, I refused to see any connection between them. If you asked me how one got lupus, what the blood tests were, or how it progressed, I wouldn't have been able to answer. I even glibly told my parents not to worry because I didn't have "systemic" lupus. In my mind, no kidney involvement, no systemic.
That changed for me, though I didn't realize it, about four years ago when I first began to notice my heart rhythm. If you notice it, it's not normal. The rest of the world just moves along not thinking about the fact that your heart is beating away inside of you, performing its functions. Shortly after my heart gave notice it was there, I began to have unexplained pain in my muscles--almost as if the muscle were torn. Then I could no longer wear contacts because I had "dry eye." I began to have shortness-of-breath, even while laying down. At times it would wake me up. This was followed shortly by increased arthritis, no longer confined to my hands and hips, but now in elbows, my back, and my feet. And the exhaustion--always the exhaustion. The mind-numbing, at-the-core, spirit sucking exhaustion that made it impossible to think, let alone move. As each symptom came along, I continued to ignore it.
A year and a half ago, in my primary care physician's office, he told me he wanted me to go see a rheumatologist for "my" lupus. Because by that time, I had taken ownership of it--almost like a pet, except slowly, almost insidiously, it was beginning to own me. Off to the new doctor--who ran a few tests and told me that I was depressed, needed to lose weight, and to get on an anti-depressant. In fact, I believe his exact words were "you're just depressed and fat and need to go on a diet." I don't think it takes a genius to figure out I was destroyed. I retreated. Three months later, I put a toe out and went back to my primary care physician to report what the "specialist" had said, to swallow my pride and ask for an anti-depressant. He sent me to a new rheumatologist.
While I am always the authority on anything my kids need or suffer from, I knew nothing about my own health. If a doctor told me my child had a disease, I would have researched, gotten a second opinion, taken charge and "stormed the castle" in their behalf. When it came to me, I meekly accepted that it must all be in my head and that of course, The Doctor Was Right. God watched over me though, and my PCP (Primary Care Physician) disagreed for me. Off to the new doctor I went; who ordered new testing. 12 vials of blood later and a joke from the tech about "having enough to get home on," I wandered home, waiting for the next thing to happen "to" me.
"You have Mixed Connective Tissue Disease," she said. As far as I could tell, it was apples and oranges: one auto-immune disease was as good as another. And MCTD seemed like a step up. After all--it just sounded like my ligaments and tendons weren't happy and how great is that?! I reported the change in diagnosis to my parents and to my sister, telling them it didn't mean anything, it really was just a new name for an old disease.
I continued to get more and more sick until just over a month ago, I fell apart. I had hidden this well up to then. I chose carefully the days I would visit my sister. I called my parents only intermittently, afraid my Mom would hear a difference in my voice. I did my best to hide it from my husband by slopping something in a crockpot that resembled dinner so I could say I was still taking care of my family. He lived with me every day, but I somehow thought he didn't know. I waited till the house was asleep, exhausted yet unable to sleep, to cry.
Last month in the doctor's office yet again, after failing again with the "old" meds, my doctor explained that she would give the new meds until July, at which time they would have to "get more aggressive." I could no longer hide nor handle this alone. This disease, step by step had robbed me of myself and everything I believed I was: a strong, healthy, and physical being. "My" disease had come to define me.
In a few short months, I have become this person. Each morning, I am unable to get up out of bed for two reasons: I am too tired from not being able to sleep and I am in too much pain. The pain is excruciating at times. My shoulder feels as if it has been dislocated, my joints are swollen and painful, my muscles feel as if they are torn and on fire. I debate how badly I need to use the bathroom to determine if I can stay in bed just a little while longer. Some mornings it is 10 or 11 before I can muster up the courage to take the few steps to the bathroom or face the possibility I will fall out of bed when trying to get up; leading to another round of swearing and yelling at the pain. Each morning, my husband cuts up a small bowl of fruit and puts it on the nightstand for me. Some mornings I can eat it, some mornings I can't. After I eat it and take my meds, I often times will throw it up. I have scleroderma in my esophagus. Remember the "dry eye?" Turns out I have Sjogren's Syndrome which means the exocrine glands don't work: not enough tears, not enough saliva. Between the scleroderma, the Sjogren's and the nausea, I can only eat 1/2 cup to 1 cup of food per day, and some days not even that.
I spend the rest of the day recuperating from my morning. I sleep in small snatches. The pain is too great to sleep well. I can't sleep on my side because of my shoulders and the hips. I can't sleep on my stomach because of my back and the gravity on my shoulders. I can't sleep on my back because it pulls the joints of my body. So I toss and turn, pulling pillows here and there. When I finally do fall asleep, my husband tells me I cry in my sleep every time I move. I've offered to move into a spare bed, but he isn't interested. During the day I also try and do the crock-pot. It helps me feel like I'm still a Mom.
In the afternoon, I walk out to the car to pick my kids up from the bus stop. Walking for me is no longer easy. Often, I shuffle when I walk. I have difficulty getting up and down stairs and often need help. I am dizzy all the time. If I am not in bed by 9 pm at night, the night meds and the exhaustion make me so tired and so dizzy that I cannot walk without my husband's assistance. I fall down the stairs, trip on carpets, trip on tiles, and trip on nothing at all. I once fell in the parking lot at the school after my son's choir program. There were approximately 100 people there, all staring. My son turned around and yelled "She's ok! Turn around!" He was 10 and had become an apologist for his Mom. Unfortunately, that has not been the only time I fell in public.
I have horrible headaches. Is it lack of sleep or the disease? Or both? My eyesight has deteriorated to tri-focals. The tendons in my feet are so tight that they feel like bone and I cannot wear most shoes because of the pain. One of my favorite activities, reading, is no longer possible because I could no longer concentrate or make sense of what I am reading. Other hobbies are also not possible: the computer (too heavy and difficult to sit in the position necessary to use it), knitting and hand quilting (no brain power, no ability to use my hands because of pain, and too heavy to hold up when using the materials) and certainly not the outdoors because the sun is a trigger for this disease.
And the indignities of the disease! In addition to falling in public, I have problems with my bowels and once pooped all over myself at Wal-Mart because I could not make it 30 feet to the public restroom. It ran down into my shoes, and all over the floor. I cried. It happened in the car, too, and my husband cleaned it up. He's also cleaned up vomit. I am afraid to go anywhere without a restroom close by and have quit doing things I like in case there isn't a bathroom there. I don't like to go out in public with my husband because I am embarrassed for him. More than half of my hair has fallen out with bald spots showing through. I cried then, too.
Clinically, MCTD is an overlap disease, which means that I suffer from the symptoms of lupus, rheumatoid arthritis, polymysitis, dermatomyositis, Reynauds, Sjogren's and scleroderma. And the f-bomb: Fibromyalgia. I was determined not to have that. I argued with the doctor because we all know *that* is a disease for hypochondriacs, right? The doctor finally stood up, walked over to me, started pushing on points on my body and when I jerked and cried out in pain, said "People only do that with fibromyalgia. Get educated." MCTD is a rare disease, and there is no cure and little literature. In short, MCTD has come to define me: my nights, my days, my every moment. It has come to determine my life. It is in charge and my soul is lost in the process.
One night, I found out that a dear friend's husband had an affair. She has been married almost as long as I have. Though thin and fit, she decided on a tummy tuck in order to make herself feel better, though I am not sure she knew that was why she was doing it. I looked at myself in the mirror. My hair hung dull, lifeless and thin. My eyes were hollow and with large purple rings around them, as if they were bruised. My skin was pale and I knew. I was never beautiful to begin with, but now I was a broken, ugly woman. Why, if this beautiful woman had a problem in her life, would my husband want me? That's the night I picked up the phone and sobbing, called my parents to tell them all about "me."
That night was probably the lowest point in my life. I had cut out family, friends, and most importantly, my Heavenly Father. But that's the night the Spirit inside of me decided to take back my life. I knew my husband wasn't going to hurt me or leave me and that he loved me. But I could not see past the darkness I had allowed to grow inside of me. When I picked up the phone, a small sliver of light appeared in the dark. I spent the next week calling my siblings and closest friends, one by one. I researched the Internet digging for people who had the disease: positive people, people who were winning. I started a twitter account, sending tweets out into cyberspace about MCTD. Eventually I found a few individuals and I started asking questions, writing down ideas. I met with a trainer to help me begin a physical fitness program. I met with a nutritionist to work on my diet. Slowly the crack is turning into a window. Maybe tomorrow it will be a door.
But today is the day I start. Today is the day I take charge. This disease is no longer "My MCTD." It is just MCTD; a side note in my life. Today is the day I begin to share the story, in all its dirty details. Because somewhere out there is a person who is drowning, alone, just like I am. And even if this doesn't reach them, at least it will reach and give courage to the one person I need to reach: myself.
