A Battle Not Easily Won: Part 4

house it's not lupus


Part 4: I go to mayo clinic and see a crapton of doctors. I have a lot of tests done. But i get answers and now I’m going to share those with you! hurrayyyy!

Off to Rochester!

Fed up, I made an appointment with the world-renowned Mayo Clinic in Rochester, Minnesota. I now lived 5 hours away from it, and my sisters were treated there. I hadn’t been there since the youngest died. It was scary, actually, to consider going back to where she had her transplant. But I made the appointment and prepared.

Going to Mayo Clinic is like… going to a Godly hospital. The doctors there give a shit about you. They take their time. They listen. They run appropriate tests. It’s also like going to a convention, but instead of panels, it’s going to tests and appointments. I met with a doctor who scheduled me to see a rheumatologist, an endocrinologist, and a gastroenterologist. They were still concerned that I possibly had Celiac but no positive antibodies. And they, like the other rheumatologist, were more concerned about my bones than anything else, but I didn’t really care. I was going to see ALL THE DOCTORS!

What the tests said:

  • Yep, you got some tissue destruction going on. Your ANA w/ reflex is still positive.
  • Wow, your creatinine (associated with kidney function, aka lupus fun times) has steadily gone up and is on the verge of being too high. But it’s not, so our systems aren’t going to flag it.
  • Your vitamin D is okay–should be a bit higher, but that’s okay! It’s normal now.
  • Your kidneys aren’t pushing out TOO much calcium. So we don’t know why you’re
  • Your thyroid is a bit slow, but as it’s been tested 2 other times and was normal, we’re going to ignore that.
  • Your bone density is still crap.
  • You have minor scoliosis in your neck, upper back, and lower back. Also, you have arthritis in your lower back. Your lungs and heart look pretty good.
  • Your joints are not swollen. They are enlarged somewhat, but not full of fluid, so it’s probably not RA.
  • Your fingers look a-ok under a microscope. You do not have enough criteria to diagnose scleroderma at this time, but there’s some crap going on that we must monitor. You could develop it in the future.
  • Your endoscopy (boy was that a fun time–I hallucinated that a lady had two heads) says your stomach and intestines are fine. You do not have Celiac disease.

And then I got the diagnosis that I simply had IBS. Okay, well that’s fine. I kinda knew that.

But here’s where it gets good.

When I was talking to the rheumatologist, he had me hold my arms out completely straight. He tapped my elbows and went,

“Huh, looks like you have a bit of Ehler’s-Danlos Syndrome.”

Wat. Is that.

It’s a genetic connective tissue disorder where your joints, connective tissue, and blood vessels are hypermobile. Now, there are a lot of different manifestations of this disorder. But it ranges in severity from “this is a pain in the ass–literally” to “your blood vessels could literally burst and kill you at any point in your life.”


So he did more hypermobility tests and pinched my skin.

“You have VERY soft and elastic skin. This is a very prominent symptom of EDS.”

So that other idiot rheumy who commented on it didn’t even associate it with the disorder? God, he was a waste of money.

So I made an appointment with a genetic counselor to talk more about it. That guy totally did not think I had it at first.

But the more we talked the more he said, wow, you really have a lot of minor symptoms. I’ve had joint dislocations, My vision frequently blacks out when standing up (postural orthostatic tachycardia syndrome–where your blood doesn’t flow right and your heart races when standing up.. fun acronym, too: POTS) One of the most unexplained and bizarre symptoms is the scoliosis and… drum roll…


So all in all, I have EDS and it caused my osteopenia/osteoporosis. IBS is a part of it. Endometriosis is extremely common with it. Cracking joints and pain is another big part of it.

My other diagnosis was undifferentiated connective tissue disease. I was put on prednisone to help with the pain. This could be the early stages of Lupus, Sjogren’s, or Scleroderma. I must be monitored forevs. I also need to have an echocardiogram to see if I have a mitral valve prolapse, which is common among EDS patients. I have some symptoms of the vascular type of EDS (easy bruising, prolonged bleeding, easy scarring) but since no one in the family has up and died randomly from an aneurysm, it’s unlikely that I have it.

For more information on EDS, go here: Ehler’s-Danlos Network

But I have answers. I have a genetic disorder and a disease that affect the same damn thing (connective tissue) but I have answers.


A Battle Not Easily Won: Part 3

osteoporosis progression

Yes, and that something is a goddamn enigma wrapped in a mystery.

Part 3: doctors run tests and discover that lol, i actually have something else wrong with me: an autoimmune disease. But it still doesn’t explain my shitty-ass bones.


Tests Are Fun. Just Kidding.

Doctors were baffled at my DEXA scan results. They ran a lot of tests to find out if I might be secretly ill, because it’s just not normal for someone my age to have such “old” bones. I went through thyroid and parathyroid tests, but nothing was wrong. My kidneys and liver were tested, but nothing was found there, either. (It was a test where I had to pee into a jug for 24 hours. That was fun to deliver to the lab.) Blood tests showed I had a vitamin D deficiency. Since calcium can’t really be absorbed without adequate vitamin D, the docs figured that was it. I begged for a Celiac panel to rule that out. It came back negative. My back was killing me and I was exhausted at the end of every workday. I couldn’t concentrate on anything. I went to a mental health specialist to find out if I had ADD. Nothing ever explained what was going on with me. I tried to work out and do yoga and walk, but every time I did yoga my joints snapped so much my boyfriend asked if I was breaking myself. On top of that, my periods had gotten even worse and my headaches were appearing regularly. I couldn’t even go into work when I had my period. Thank GOD my manager understood. She has been so kind to me throughout everything. I still work for her and appreciate all she’s done for me.

Anyway, I was desperate, so I got an IUD to try to quell some of the horrific depression, cramps, and bleeding. I’ve had more issues with the IUD than I should have–SURPRISE, cramps and 21-day spotting cycles–but I’m not bleeding so much I can’t go anywhere. Except for one time. That was scary. But overall, it was an improvement, I suppose.

I lost my health insurance when I switched jobs in August 2013. My sister left to pursue her PhD and my boyfriend and I made the decision to move to where my family lives to save money and talk to more doctors. We were sad, in a way, but I couldn’t tolerate what was happening anymore. I needed to talk to someone who knew more about bones. Once we got back, I went in to talk to a general practitioner and she ran some blood tests.

Surprise! Something Else is Wrong.

I wasn’t expecting to find anything different than the tests in California had shown. But something came back strange. ANA with Reflex was the name, and when I looked it up, I was floored. Associated with autoimmune diseases such as Lupus, Sjogren’s Syndrome, Systemic Sclerosis, and Polymyositis, this test wasn’t anything to ignore. My doctor ordered more tests and I watched as the results flooded in. Weird tests for double-stranded DNA, and antibody after antibody that I had to Google to understand. All of these results were coming in on a night when I was headed to a friend’s house. I had been wearing a hat and wanted to fix my hair once I got there. When I went to the bathroom to fix it, I noticed a small bald spot on the top of my head, just under the size of a dime. I panicked. I knew it was a symptom of many autoimmune diseases–hell, autoimmune alopecia (alopecia areata) is a disease unto itself. I felt feverish and got tired well before I normally did. I felt like I was falling apart. Thus began the exhausting 6 weeks of December through mid-January.

Then the bone thing just faded into the background.

The test results finally came back in a few days later. My doctor emailed me saying that my antibodies for CREST syndrome (also called scleroderma or systemic sclerosis) came back positive. So my results were, in her words, “indicative of systemic sclerosis.” I googled it. If you do not know what scleroderma/systemic sclerosis is, it is a horrifying debilitating, progressive, and sometimes fatal disease that robs you of your self-confidence and independence. I am sorry if anyone reading this has it. There are ways to fight it, there are ways to get support and maintain your confidence and independence, but let’s not kid ourselves–this disease is real, raw, and goddammit, why does it even exist.

I cried. A lot. Like, nervous breakdown sobbing. I am an artist, a writer, and I enjoyed yoga and simple things–you know, like brushing my teeth and fixing my hair–without worrying about my hands balling into inflexible claws. I didn’t want my face to become so tight that I couldn’t smile like I used to. I didn’t want to get gastric reflux so bad that I had to elevate my bed or risk barfing all the time. I didn’t want to get pulmonary hypertension. Or have my fingers’ circulation get cut off so badly that I got ulcers or–God forbid–had to have them amputated because of gangrene. THIS DISEASE IS HORRIBLE, IN OTHER WORDS.

What the fuck was wrong with me? Why was this happening to me? Haven’t I gone through enough in my life? Illness has haunted me like a fucking poltergeist since childhood. Two of my sisters died from a genetic disease. My grandmother has Parkinson’s and I am watching her slowly become so disabled she can no longer care for herself. My relatives on both sides of the family suffered from “rheumatism” or what’s now known as RA/rheumatoid arthritis, which is in the same family as lupus, scleroderma, polymyositis, and Sjogren’s. 

I set up an appointment with a rheumatologist. I wrote down all my symptoms. I did research. I spent hours documenting things and culling through my memories of pain and bizarre symptoms. I realized I had much more in common with Lupus and Sjogren’s than scleroderma, but it’s possible my disease was caught in its infancy. I saw that endometriosis is very common in people with autoimmune disease. Nothing about bones, though. So I focused on the immediate problem and brought a huge file to my doctor.

Well, let’s just say he sucked and didn’t really care why I was there. He pinched my skin and said “no, you don’t have scleroderma.” Then he wrinkled his nose and was like, “Actually your skin is very soft, like REALLY soft, and quite flexible.” (This, I would find out later, is a really important symptom, and he as a rheumatologist should have seen something here. He of course, did not.) I was floored at how I was treated. He was more concerned with my bones than anything else, and ordered a bunch of tests (which I’d already had done) for me. He even insinuated that my pain was in my head and then gave me the diagnosis of fibromyalgia. 

I believe fibro is real. I do. But I do not have it. It is a bullshit diagnosis for someone with clear connective tissue disease and pain associated with it. He did an xray to check for pulmonary hypertension and interstitial lung disease (associated with scleroderma) and sent me on my way after offering me painkillers, which I refused.

Part 4 continues!

A Battle Not Easily Won: Part 2

fight endometriosis

Sure you can. By having surgery after surgery to laser scar tissue and blood-filled cysts from your organs, or going on drugs to induce a lovely, rage-filled menopause–the drug is also known to compromise bone density. FIGHT ON, SISTERS

Part 2: I have the insides of an 80 year old, and there’s nothing I can do about it because there’s supposedly “nothing” wrong with me.

Fuck Relationships and Endometriosis, Too.

Things didn’t get better fast. I bled uncontrollably. I could hardly function at work. I’d wake up with horrible headaches, and later be reduced to tears because of cramps and the fear of being unable to go anywhere without bleeding all over. It was debilitating. And in a job where I worked primarily with men, it wasn’t something I could really talk about much. I could talk to a few women, one of whom had looked out for me from the very beginning like a mother, but I knew she had her doubts about how well I was doing. I wanted to be okay. But I felt very isolated and, well, lonely. Even though I’d gotten married only about a year and a half earlier, I could see things unraveling. It began to put me into a very real, very deep depression. Between the pain, my crumbling relationship, and my growing anxiety and depression, I felt ready to quit my job. But I pushed through it because I wanted to save up money.

My husband started working out again and I decided to go with him, in the morning before we had to be at work. My hips and lower back began to feel better with working out, and felt better for a few hours during the day, but locked up at night and in the morning. He showed me some stretches, which I did regularly. He had to rub my back to force my muscles to relax so I could sleep. I got a sharp, nearly constant pain under my right rib, which I Googled and immediately regretted. I ignored it (great pattern, right?). I began to sleep less, waking up frequently, and eventually I fell into a cycle of 3 hours a night. My husband drank all the time. I knew he had feelings for my best friend. I couldn’t get him to admit to anything or change anything.

And then I fell apart.

In the end, I wasn’t a good wife any more than he was a good husband. He asked me, after I broke down, if we could ever make it work. I looked him in the eye and said, “No.”  Driving him to the airport was difficult. I felt like a failure. I felt like no one would ever believe me or think I was a good person ever again.

Journey Uphill

I started going to counseling. Living alone, I wanted to adopt a cat to keep me company, and I started talking to my friends online and tried to remain positive. It was difficult. No, actually, that’s being modest–it was nearly impossible. After about four months, I adopted a cat and got a roommate, one who I am with to this day–my boyfriend, Steven. He was supportive of me, but I pushed him to the limits of his patience. I was still climbing uphill, and I wasn’t moving very quickly. I began working on creative projects and focusing more intensively on my strengths, building a portfolio for my writing and learning how to do animation and video production. This proved to be a good investment of my time, as it helped me land my first writing job. I wanted to go to the doctor and see why I always felt so tired and in pain, and I was really stoked on the fact that this job offered good benefits, despite its shitty pay. We struggled with bills, and my sister moved in with us to help while she applied for PhD programs. It was helpful to have her around to talk to. After four months of hounding my boss and HR, and filling out paperwork 3 times because of ineptitude, I finally got health benefits.

It was only about two months later that I heard a radio advertisement for a medical study. This study called for endometriosis patients to test a new pain medication, and it paid a decent amount of money. Being poor and still suffering with bad cramps, I thought this would be perfect for me. So I enrolled.

A part of the test included a bone density scan, called a DEXA scan, to ensure you didn’t have osteopenia or osteoporosis. I asked if that was for the post-menopause participants, and the director said yes, and not to worry about it. The pill could compromise bone density, so it was just a screening measure that wouldn’t affect me.

Except it did. I found out the scan showed osteopenia and osteoporosis in different areas in my hips and spine. I was floored–growing up, my mom forced us to get our 3 glasses of milk a day. We ate so much dairy that it was impossible to have something like this, right? My mind drifted back to being vegan, to not taking care of myself during my stressful job. Did I do this to myself somehow? And thus began the doctor’s appointments to find out…

A Battle Not Easily Won: Part 1

This is going to be posted in 4 parts because honestly, it’s not going to hold anyone’s interest that long. lol. This is part 1.

autoimmune disease

And depression, that’s in there too.

Part I: Exciting Backstory 

IIt started when I was twenty years old. Or at least, the pain did. Everything else just seemed to pile on in the midst of life drama and worsen in an abusive workplace, and it would be passed off as stress and anxiety and depression for years before nearly destroying my ability to get through the day without needing to pop some pain killers. But I’m getting ahead of myself.

When I was twenty years old, I woke up one morning and my knee hurt. I thought I must have pulled it while working or that I’d been too lazy and needed to start working out more. I never thought to see a doctor about it. It didn’t seem serious enough. Over the summer, I began jogging on a daily basis and I started lifting weights. I was sore a lot, as one would expect, but I felt more energetic and happier with my body overall, and even though my knee still hurt, I just ignored it because the pain wasn’t that bad, and it came and went whether I worked out or took a few days off to rest.

When winter rolled around, I started getting a tightness in my chest that I couldn’t really explain. It was difficult to breathe. I’ve had issues with pleurisy my whole life (if you’re not familiar with it, it’s where your pleura, or the lining of your lungs, inflame and rub against one another, making it feel like someone is stabbing you with a knife every time you try to breathe), but this was different. It was like someone had reached into my chest, grabbed a hold of my sternum, and squeezed as hard as possible–and never let go. After a while, I began to become concerned that something was wrong. I was winded when I shouldn’t have been. I worked out on a nearly daily basis. It wasn’t normal, and I finally decided to go in to a walk-in clinic and see if I had an infection.

When I went to the doctor, they made me blow into this tube that measured the force of the air exiting your lungs. Mine was not great. They just shrugged and said I had “cold- and exercise-induced asthma”, gave me an inhaler, and sent me on my merry way. It did help a bit, but it seemed like eventually, the pain just went away on its own. I never went back for a refill.

Fuck Uteri and Fuck Ovaries

I’d always suffered with really bad periods, too. I’m talking full-on depression, horrible back pain, cramps, bleeding heavily, and getting fevers and breakouts. I kept dealing with it all by just taking ibuprofen, and trying birth control pill after birth control pill until I finally found something that didn’t make me want to throw people out of windows. Or myself, for that matter.

Then I went to grad school and the migraines started. I don’t think it helped that I was in a bad relationship and probably drank more than I should have. I felt so small and insignificant. Something changed inside of me that year. I started getting worse lower back pain than I’d had in the past, and my headaches got worse, but I chalked it up to stress and my quickly downward-spiraling quality of life.

When the economy crashed and I wasn’t able to get a job, I figured my issues were caused by depression and anxiety. Pain was a normal part of my day, but I was sleeping on a friend’s couch, so I ignored it. After a nasty breakup, I moved to California. And that’s when it all started to get worse.

And Then I Joined the Circus.

Not really. But the job I started required 70+ hours a week for weeks on end, heavy lifting, and dealing with sexual harassment regularly, along with healthy doses of drama. I didn’t mind, to be honest. I made a lot of money and could support myself on my own. I had an idea that I could accomplish everything I wanted to, if I just tried hard enough, and my positive attitude did help me fit in after a bumpy start. Then, only two months later, in the summer of 2009, after another messy personal situation, several bad–no, traumatizing–things happened to me in a very short period of time. I won’t go into detail here. But suffice it to say, it broke me mentally. I went back to things I’d relied upon in the past. I thought it’d be different, given the gravity of the situation. It wasn’t.

It was about this time that my periods got pretty much out of control. One day, while leaning up against a wall on a long and physically difficult set up day for work, my left leg buckled and I felt pain shoot down my back like I’d never felt before. I sort of played it off like I was just sliding down to have a seat; it worked, because no one noticed. After that, it started happening regularly. My hips started to hurt. I dreaded my menstrual cycle more than I ever had. After a year of this, in August 2010 shortly after my wedding, a stabbing pain in my right side lingered for over a month and started traveling down my leg. I finally went in to see a doctor. But I didn’t mention the joint pain–I assumed it was the difficult work I did. I found out I had a cyst. The doctor just told me it was normal, but that I had the option to try to quell my body with a new birth control pill designed to help with migraines and endometriosis (at this time, it was just a hunch that the doctor had–I hadn’t been diagnosed.)

I cried for 18 hours straight two months later. Unable to stop myself, unable to stop thinking of horrible ways to end the crippling depression and the pain (which was still there, constantly), I went of the pill and told my doctor I wanted surgery to find out if I had endometriosis once and for all. I agreed to have a surgery in March of 2011.

Well, of course I did. I took down that story, but someday I might put it up again. It’s graphic and at the time I was contributing to some other professional site, and I realized people who are into advertising might not want to read about my crappy uterus.

Part 2 up next.