What's Wrong?

The quickest answer:

For as long as I can remember, I’ve always had what I called “random achy pains.”  Some of the pains were more severe, others were simply annoying.  I didn’t have an accident or sports injury to explain it, and it wasn’t in any one specific place.  Sometimes my knee hurt … sometimes my shoulder … most of the time, my neck and back, too.  I didn’t know any better, so I thought that was just normal – pain was a part of life.

What troubled me most as a child was severe abdominal pain (I still blame it all on my third grade teacher, but that’s another story for another day).  When I was about 8 years old, I ended up in the emergency room because it was so bad, and it's never really gotten better.  Years later (when I was a teenager), I finally saw a gastroenterologist.  After lots of poking and prodding, and literally examining me from the inside out, he diagnosed a duodenal ulcer – basically, an open sore in the lining of the small intestine.  He also described a “spastic colon” – the muscles in my intestines were cramping and contracting, interfering with the normal flow of things.  About ten years later, that came to be known as irritable bowel syndrome, or IBS.  Dozens of medications provided no relief; the pain ultimately became something I would just have to learn to live with.  Since then, I’ve also developed gastroesophageal reflux disease, or GERD, where the acids in the stomach come up into the esophagus, erosive esophagitis and gastritis as a result of the GERD, and hiatal hernia, a condition in which a portion of the stomach pops up above the diaphragm.

Around the same time, I developed a different kind of lower abdominal pain.  Again, I thought it was just the typical monthly consequence of being an adolescent girl.  If I was especially bothered, it must be because was too sensitive, not because there was an actual problem.  WRONG!  In my late teens, I was diagnosed with endometriosis, a painful condition in which cells from the lining of the uterus grow in other areas.  Over the next 10-20 years, I developed ovarian cysts many times: some went away on their own, others required surgery.  I also developed fibroids, benign but painful tumors in the uterus, which led to a hysterectomy at age 33. 

Lucky me - I've got all of these!
In addition to the abdominal pains, I also started getting headaches sometime during high school.  The gastroenterologist I was seeing was also a general practitioner, so I spoke to him about it.  He said they were tension headaches, caused by muscle tension in the head and neck.  He told me “stress really does a number on your body,” so I just took that to mean there was nothing I could do about it: stress is part of life, so apparently, pain is too.  Over the years, the headaches got worse.  I have different types of pain (sometimes it feels like my head is in a vise; other times it feels like there’s a burning rod going through my eye; still others, it feels like my head is going to implode), and they come in different parts of my head, but there's almost always some kind of head pain.  I saw an otolaryngologist (ENT), who diagnosed and operated on enlarged turbinates – the tiny bony structures in my nose were interfering with airflow; she thought that reducing them might relieve the headaches.  That helped me breathe easier for about a week or two (did I forget to mention the chronic sinusitus?), but did nothing for the headaches.  I saw a dentist, who created a device to help with temperomandibular joint disfunction, or TMJ, a painful problem with my lower jaw; again, this did not relieve the headaches.  A neurologist did dozens of tests and offered dozens of medications, all to no avail.  An optometrist suggested that my astigmatism, an irregularly shaped cornea, could be responsible for both blurry vision and headaches, and offered eyeglasses for relief - I wore those for nearly a year, but they did not help either the blur or the pain.  I'm currently on medication for migraine, severe headaches accompanied by other neurological symptoms.  Even with glasses and medication, I still have headaches every day.  They vary in intensity, type, and location, but there is almost always something there.  The latest treatment we tried, suggested by my newest neurologist, was botox (in a lower dose than what's used for cosmetic purposes): 31 injections in my face, head, and neck, to be repeated every 3 months.  You've got to love a treatment that hurts as much as the problem it's meant to address! Even that didn't help, and when I chose not to continue after 9 months (3 rounds of treatment) of botox, my neurologist said he was out of ideas.

In addition to the severe head and abdominal pain, there were always the aforementioned “random achy pains” that I thought were just part of life.  In 2007, they got a lot worse – so much so, that I finally sought medical attention.  I hurt everywhere, I was exhausted all the time … and overall, I just felt “not well.”  I went to a few doctors, but they couldn’t figure it out, so they suggested it was all in my head – I was just depressed.  I knew that wasn’t it; I knew that something was really wrong with me.  When I washed my hair in the shower, my arms felt like I’d been trying to bench press 250lbs.  My whole body was sore, like I’d just run a marathon.  I couldn’t sleep … I had dizzy spells … I felt nauseous and weak all the time.  I didn’t know what it was, but I knew that this was not normal.  The MRIs and CT scans revealed a pituitary microadenoma: a tiny benign tumor on the pituitary gland.  Still, the doctor insisted that it did not explain anything, and that it wasn't even really a problem.  About five years and ten doctors later, I was finally diagnosed with fibromyalgia – a complex (still not fully understood) syndrome that involves chronic widespread pain, debilitating fatigue, tender points, and sleep disturbances, and often goes along with a number of other conditions.

In the midst of all of this (before I’d gotten the fibromyalgia diagnosis, when I was still bouncing from doctor to doctor without any explanation, being dismissed because my bloodwork was normal and I looked ok), I developed new symptoms.  My feet, ankles, and knees began to swell, and I developed a rash of some sort all over my legs.  Within a few days, my feet were so big that I couldn't fit into my shoes.   I could barely walk, but I was excited because this was visible - there was finally something my doctors couldn't deny!  I went to a new rheumatologist, who said that I clearly had some form of arthritis, or joint inflammation.  It was autoimmune, meaning that it was caused by my immune system attacking healthy cells in my body, not by weight or overuse.  However, he couldn't specify which autoimmune arthritis disease it was.  I switched to another rheumatologist, who also had difficulty deciding:  I had psoriatic arthritis … no, I had rheumatoid arthritis … no, I had lupus … no, I had undifferentiated connective tissue disorder, which meant that my disease had not yet decided which of the above it would eventually grow to become.  We cycled back around to lupus and RA again, settled on Adult Onset Still's Disease for a while, and back to lupus again.  

Ultimately, we've settled on Sarcoidosis, an inflammatory disease that can affect any organ in the body and cause systemic (whole-body) symptoms as well.  So far, tests have shown that it is affecting my lungs, my skin, my joints, and my nerves (Small Fiber/Autonomic Neuropathy), as well as causing systemic symptoms like debilitating fatigue, fever/chills, etc.  There is no cure; the best I can hope for is to achieve remission, a period of low disease activity. Even then, the symptoms can always come back for any reason, or for no reason at all.  I've been able to get some of this managed through a variety of treatments, but I am still experiencing symptoms like pain, fatigue, and temperature dysreguation regularly.

As some of these symptoms have persisted, I began to think there was still more to my story than all of that (and all of that was a lot to begin with). Because I was still having severe pain, especially in my back and other joints, I asked my rheumatologist to consider additional arthritis diseases, but she refused. I didn't even have to ask my new rheumatologist (yep, I changed to someone else who understood my rare disease better, and would work with me as a partner in my health management): at my first appointment, she took 19 vials of blood, running tests that all the doctors of the past 10 years never did. Her thoroughness added RA (rheumatoid arthritis) and Sjögren's Syndrome, another autoimmune disease that affects joints and causes dry mouth and dry eyes, to what she calls "my own flavor of ... autoimmune soup."

I’ve got a handful of other ailments that don’t bother me as much but may be worth mentioning, just to keep the list complete.  Hashimoto’s disease is an autoimmune disease specifically attacking my thyroid, causing hypothyroid, or underactive thyroid (slow metabolism).  Raynaud’s phenomenon restricts blood flow to the extremities, causing discoloration, pain, and numbness in my fingers and toes.  Sleep apnea is a breathing disturbance that interferes with my sleep cycle; fortunately, I have a mild case, since the CPAP machine was more disruptive than helpful.  Cold-induced asthma makes it more difficult to breathe when it’s cold outside.  Leukocytosis, or elevated white blood cells, frequently alarm my doctors and send me back to the lab over and over, but so far it doesn't seem to be the big problem that it can be (it is often a sign of leukemia, but for me it seems to just reflect the excessive inflammation throughout my body).

I currently take over 25 pills/day, give myself (or have my husband give me when my hands aren't capable) 4 injections/week, get 4 infusions/month, and go for physical therapy twice/week; I frequently use ice packs, heat patches, a TENS (transcutaneous electrical nerve stimulation) machine, and an acupressure mat ... and I'm still in pain pretty much 24/7.  It is worth mentioning that many of the medications cause side effects that can be health problems on their own.  Weight gain, headache, dizziness, blurry vision, nausea, and upset stomach are among the most common.  In addition, many of these meds increase the risk of other health problems (cancer, osteoporosis, liver problems), so I've got to be extra careful and my doctors have more to monitor.  Since Sarcoidosis, RA, and Sjögren's, involve the immune system, treatment involves suppressing it. which means I'm more susceptible to illness or infection, and less able to fight anything I am now more likely to catch.

What’s ironic is that this multitude of symptoms and conditions is all on the inside.  Though the Sarcoidosis does cause joint swelling and skin rashes, with regular autumn clothing cover, I look fine.  Overall, I look healthy (aside from being overweight from the years on steroids).  The many conditions I have are what we call invisible illnesses, a category that often brings with it stigma, doubt, mistrust, and questions (though they’re not usually asked) from friends, family, and even doctors.  Many people have difficulty reconciling the idea of such severe illnesses with the appearance of perfect health.  As a result, they think that I must be exaggerating or making it up altogether just to get attention. 

I assure you – I am not a hypochondriac.  I am not “just depressed.”  I do not suffer from Munchausen syndrome.  If I smile and appear happy, I very well may be – I do the best I can to focus on the silver linings, push through the pain, and live a positive life.  That does not mean that I am all better – it means that I will not allow my illnesses to win.  They may mess with my body, but they cannot take my spirit.  I may not be able to do all the things I used to do, but I can be sure to be the person I have always been.

People ask how I keep smiling despite everything I’m going through.  Part of that comes from making a conscious effort to focus on the positives in my life instead of the negatives.  A bigger part comes from the fact that there are so many positives at all.  I hurt, but I am happy.  Some cope by going to happy hour.  I do it by being a happy “ow”-er.

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