I need to just rant for a minute. Or 5.
So here’s a little background story of who I am.
Growing up, I was abused and came from a very messy family situation; despite this, I was at the top of my classes, classically trained singer, contemporary dancer, artist, band nerd, science major, etc. I did everything and anything and was good at it. I’m not stating this for fun or because I’m a narcissistic asshole, my point is that I was highly motivated and enduring; that I could push past tiredness and pain and accomplish whatever I wanted to.
Notice the tense of this is past.
I’ve always had problems with depression. When you’re repeatedly raped and beat by family members as a kid, that sort of thing happens. And yeah, it took a pretty big toll on my body- not wanting to sleep because of vivid nightmares and self harm that’s left me with some fairly embarrassing scars- but even at my worst depression in the past, I have never felt like this.
Enter high school, the upperclassman years. Occasionally I can recall having really bad abdominal pains from time to time.
Post high school, those pains continued and every now and then they would get so bad that my friends would insist I go to the ER. No answers ever came from that, however. Labs were clean, no STDS, infections or physiological evidence of the cause for pain. Eventually Dr.s just started saying I probably had PID and just to deal.
When I was 20 I was working in the hospital, graveyards in Vegas. The ER was nuts, and I loved it. The rush was amazing and I loved coming home feeling completely drained. That sort of love you have for the post workout burn. I had met what would be my future husband, and pretty much cut out all of the disgusting people in my life. Things, for the first time were great. I was making good money and as an adult, and was free from all the BS that kept me down before.
I got married and immediately we decided to have a baby. I honestly didn’t think it would work as quick as it did, due to the dx of PID and abnormal mensies. Alas that was not the case, so when I started feeling really ill after a few weeks, I figured something went terribly wrong.
Boy was I right, at 6 weeks; we discovered I was having twins (joke, the kids are pretty cool). Not at all what we expected to hear. But because of the double dose of baby, I got a double dose of hormone and was suffering from hyperemesis- which, for those who don’t know is like the angry Hulk version of morning sickness. I went into the hospital/Dr office every week to receive IV nutrients, since I was basically vomiting after swallowing my own spit. I lost 15 lbs. I was put on bed-ridden disability from work for my whole high-risk pregnancy. I still snuck out of the house and did yoga once a week. Yeah, I took it easy, but I had to do something.
At about 5 months pregnant, the hyperemesis started getting better. I could eat wheat thins and fruit. Things were looking up until the swelling started. I was given a new dx of preeclampsia and hospitalized at 32 weeks. I started going blind and after falling for the 2nd time (while at the hospital), the Dr. decided an emergency c-section was the only thing that would keep me from needing dialysis at this point.
So the kids were born 2 months early, and they were little, but over all, they were healthy. They stayed in NICU for a month, and I was given heavy doses of blood pressure meds. I was still blind, and basically physically useless. After some time, though, the swelling resolved, I got my vision back, the kids came home and we were well on our way to being a normal family.
I ended up having to quit my job all together, because paying for daycare for twin infants was basically my whole check, and not worth it. I became a stay at home mom, which drove me absolutely nuts, but I found things to keep me busy. I homeschooled the kids (preschool years), homesteaded everything, raised chickens, created art and all of that. I went rollerblading. I tried to join the navy (that’s a whole different story)- I kept active and healthy. My weight has always been up and down, but I’ve always had weird reactions to hormones, and I never really got “obese”, just a little thicker on the curvy parts.
I started getting random pains here and there. Being a dancer, I chalked it up to old injuries and just general wear and tear. I never did too much about the pain because I have a rather high tolerance (Break a toe while dancing? Great! Keep dancing!). Occasionally I would wake up from a crazy bout of sleep paralysis, but nothing too bad.
Then the pain started getting worse. My hips. My back. My legs. It would kill me one day, and then be completely gone the next. No one ever found anything whenever I would inquire at check ups.
My girls turned 4 and since they could go to school now, I decided to go back to school as well. After my first semester, we decided to move to Guam, where my husband is from. We both enrolled at the university and began our new exiting island life. Because we had no income, we enrolled in Medicaid. This is where things turn for the worst.
Back in college, my husband and I were still slam-dunking life; top of our classes, starting student orgs, volunteering and doing research all over the world. I took double the course load every semester, and still came out with 4.0s. We hiked, swam, scuba- we are not lazy people.
One day I woke up, and I couldn’t walk.
It was so, so terribly painful. It felt like my muscles were jello and suddenly forgot how to hold me up. My leg was weak. My back was so tight that my muscles protruded much farther on one side than the other, yet they were basically useless. I went to the ER. There is no stretch, no position that provides any relief. They pound on my back a few times (does this hurt?) which made me scream and writhe. They tested me for STDs again, kidneys, bladder etc.
Nothing. Go home. See a general care physician.
After a couple days of pain, I woke up one day and everything was completely gone, as if it had never happened.
Went to the Doc as soon as I could get an appointment. On Guam, if you have Medicaid, you cannot just go to any doctor. You are pretty much limited to “public health” facilities, and the problem is that they only take 3 adult walk ins per day, and appointments are a month out. There isn’t really much of an urgent care place, and cash pay is really expensive ($200 easy).
I gave the Dr. my history, and he literally googled “back pain” and turned the screen.
I asked him if he would do an xray or kinesis test or anything, and he laughed at me.
“You think you need an xray?”
“I think you need to do something besides a search on the computer.”
I went home empty handed, frustrated to tears.
Over the next year, I continue to get these little spurts of pain. A couple days here, a week there, then it was just gone without a trace. There was no particular trigger, and nothing seemed to add up. No one really seemed all that concerned. Sometimes my right leg, sometimes my left side back. My shoulder. My wrist. I noticed I would get a little shaky during these bouts, like tiny tremors.
In the summer of 2012, my husband and I (and the kiddos) spent the break at UCSD Scripts, doing some really cool research on the deepest part of the ocean. It’s honestly one of the best summers I’ve ever had. I noticed I was getting a little sore. I’d occasionally walk into something; I had almost dropped something else. Then the pain got really intense after about a week. After 2 weeks, I was having a hard time walking. I was working in the lab and was holding a large jar of reagents. My hand did this strong twitch, followed by a complete loss of tone and control, which resulted in me tossing the reagent across the lab, smashing the jar into pieces.
It scared the shit out of me. I was lucky that the chemical was benign, because I had been working with caustics and carcinogens and the typical lab risks. I was really worried that this was going to cause problems for me in my future career. Now this pain had gone on for 3 weeks and I was becoming a safety risk. I had to get this looked into.
I went to an awesome self pay clinic in SD. $40 and the Dr. ran every test under the sun that he could. He gave me some narcotic pain meds, which was great after the first few pills, but then became useless. Not only that, but when they did wear off, I realized how much pain I had become accustomed to, and when it came back, it hit me like a brick wall.
Dr finds nothing in particular. I tell him my mom had systemic lupus for 10 years before she tested positive on her ANA. She also had thyroid issues. My labs come back basically perfect- but my xray says that I suddenly have 12% left curvature of my spine. Scoliosis. Doc says that the pain I’ve been feeling is muscle spasms, and that he thinks my spine is only crooked due to the extreme cramping pulling my spine to one side. Other than that, he says, see your primary doc when you get home.
I finish my research and make an appointment on Guam. We only have one neurologist on island, and he doesn’t take my insurance. I get the prior authorization so he will take me, and I pay my $300 to see him. CAT scans say I have a thornwalts cyst, air mastoid disease, but no evidence of MS (which I discovered on my own, he never mentioned). Labs are still clean. Nerve tests say I have complete damage to both wrists, but everything else is ok. I explain to him that I also seem to be having IBS like problems. If I eat, I’m in the bathroom in like 20 minutes.
“I’m fairly certain you have fibromyalgia.” He says. Trigger points “confirm”.
He wants to zap me with a laser beam wand thing. Says I need to see a rheumatologist, but we don’t have any on island. Prescribes me some tramadol and cyclobenzaprine, which help calm down the tremors and cramps, but don’t eliminate them or the pain. Gives me Elavil but that stuff turns out to be the worst drug ever made. I sleep for 12 hours and am a zombie for 2 days after taking one pill. I skip the Elavil, but continue the others. He hands me a “fibro diet” pamphlet and tells me I should really cut out gluten, sugar dairy, nightshades, etc.
More things keep popping up. Suddenly my arms will go completely numb. My hand will be on fire at the slightest touch from my husband. My legs hurt more. My back is always killing me. For the first time in my life, I start getting headaches, then migraines. Something is always twitching. I start bruising like crazy.
I have to take a week or two off from school here and there. It’s getting harder for me to concentrate. My memory is getting pretty bad. I’m forgetting whole conversations I had the day before. I start writing everything down.
We’re eating dinner at a restaurant for granny’s birthday. The whole family is there. I’ve got to pee so I excuse myself and head to the bathroom. By the time I get there, my “stomach” (upper, in the middle of left and right quadrants) really starts hurting. I thought, maybe I ate something that didn’t agree, no biggie. By the time I wash my hands and head out the door, my entire rib cage is pissed. It feels like I’m being squeezed to death. Before I can even get to the restaurant, I end up on the floor of the hotel, in my dress and heels, trying not to flash the world my underwear as I scream in pain. I climb onto the lobby couch, still gritting my teeth and trying not to scare anyone with my new exorcist moves. In tears, I call my hubby and tell him he needs to come out and take me to the ER. Confused and scared, he carries me down to the car and off we go.
By the time I get to the ER, I am SCREAMING in terror. I have never, ever felt this level of pain. I am the type of person that will smile through stitches, but not that night. I was ready to tear everyone’s heads off if they didn’t help me NOW. I felt like I was dying. Every time I took a breath, it got tighter. The slightest movement of the wheelchair they rolled me in on was torture.
They doped me up. It did nothing. They gave me more, I was still crying. By the time they got to the point of barely touching the pain, they couldn’t give me any more drugs for fear of adverse reaction. Once more, my labs were nearly perfect, nothing really to remark.
Go home, nothing is wrong.
Some time passes, and things are still the same. Spasms daily, pain here and there, burning, itching. Now hot flashes. Etc. I stop carrying a backpack because it’s too painful, so now I have a dorky rolly bag.
I get a flare up during my semester and I stay home from school. I am used to self-teaching since I’m always taking time off and I’m fairly good at it. Something is different this time, however. I can’t concentrate, I’m exhausted. In so much pain. I can’t really do much but sleep. I end up taking about a month off of school. One week I am acing calculus, and the next, I can barely add. Literally. I stared at the same problem for an hour. I wrote a line of math and erased it. Rewrote it, and wrote it backwards. I added 2 + 2 wrong. I erased it. It was so hard to think that I had a nervous breakdown and walked across campus in torrential rain and ended up in the counselor’s office. I hate therapists. I was just scared and didn’t know what to do.
They really didn’t have any answers either.
I ended up dropping my classes that semester since I couldn’t make up for my month off. Due to this becoming an increasing problem, I spoke with the school and they suggested I get a disability statement from my Dr.
I did, begrudgingly. Now all of a sudden, this becomes real. I’m not totally sold on the fibro dx, but there is something very wrong with me, and it’s starting to really get personal.
I start having problems walking down stairs. I fall, a lot. My legs will just sort of randomly give out. I lay in bed and cry because I’m exhausted but my legs and arms are jumping all over the damn place. I can’t afford to see the neurologist all the time, and I don’t have any meds. He doesn’t seem to bother with me too much anyway. Now my flare ups are more like the normal, with a few good days sprinkled in. Sometimes, I can barely speak- things work in my head but just don’t come out. I stutter. I can’t get out of bed. I’m starting to have a really hard time in school, even though now I’m a senior and can’t wait to finish. I get a non-profit going. I continue to try to be active, but a single yoga class made me realize that I am completely incapable of even holding my own weight. I start to struggle with opening jars and packaging, or anything that requires fine motor skills.
I look into filing for social security disability (mostly in curiosity and fear), but since I haven’t really worked a 9-5 job in like 5 years, I am told that it’s not going to happen.
I go to another doctor after saving up some money and she prescribes Lyrica for me. I gain 30 lbs in 3 weeks (which was mortifying), but it did help a little with pain. She gets nervous about the side affects, and takes me off of it after 2 months. The pain comes back with a fury. She does some more blood work and my liver function panel comes out low, but nothing else is too out of place. Another Dr. puts me on Prozac for a while and it helps a little with my energy at first, but then everything goes back to how it was.
Due to family issues, and over all economical issues. I decide maybe I need a little break from school and I should work. I take a temporary job at the hospital. I get sick immediately (welcome back to healthcare!)… but then it really never seems to go away. I’m missing work constantly. Now I realize how bad this is. I’m scared that my twitches are going to put my health or a patient at risk. I’m in so much pain that I’m calling out at least once a week. Oh, and I should mention, that I’m part time, with no benefits. Making $10/hr.
Present day: Medicaid renewal time. They deny us. We “make too much money”. We both only work part time. We make less than $2000 a month.
I’m getting worse. I love cooking, but these days I can barely make a dinner without feeling terrible, so I barely cook. The house isn’t as clean as it normally is. I’m in bed almost all the time if I’m home. Suddenly now, I need to sleep for like 10 hours, and even then I feel like crap. Drinking alcohol is almost impossible, the tiniest amount makes me sicker than hell and I pay for it with all over pain and spasms that are ridiculously amplified. Cleaning the house means I spend the next 2 days in bed, guaranteed. I’m worried now that I wont be able to hold down a job, and even if I finish school, what good will it do me if I can’t attend work.
I have no meds, no doctor, little income, and no support besides my husband. I feel bad for my kids, and I hate hate HATE being in this damn bed all the time. I try to get up and do stuff, but I end up on the floor or hunched over a chair crying. I’m getting to the point where I feel like I’m worthless. I’m scared, in pain, and I have no will power left to push through. I feel like the last few years of “biting the leather” to get through has drained the last bit of drive I have. I don’t want to do simple tasks because it takes so much energy, even if I need to do them. I barely engage in social activities these days because a simple dinner party with friends is exhausting and puts me in bed for days. I could barely finish typing out this whole thing without wanting to stop and go to sleep.
I’m losing it. I feel like it’s all slipping away. I just want the pain to stop. I want my life back, but I’m not seeing any indication that this will happen.
I tell you all of these minute details, not only so you can see how my issues have progressed, but that I am not even the same person anymore. The usual fibro "stereotype" is someone who is overweight, unmotivated and kind of nut case (thanks doctors!), and I was once anything but that. How does someone go through years of adversity and push through it, and then suddenly lose the will to walk? A dancer, someone who has dealt with serious pain, is now in so much pain, I’m losing all my will. I am becoming that stereotype, and I hate it. And I have nowhere to turn. Please, please help me.
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