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I don’t think that I have specifically gone into any of my physical medical problems on here yet. Part of that is simply that I’ve been trying to keep them managed and not think about them. But, I might as well type a post on it to give some background.

I have a connective tissue disorder (Diagnosed) called Ehlers-Danlos III (EDS). Essentially, it is a collagen mutation that causes all sorts of weird shit to happen in my body, the most obvious of which is the fact that my joints can sprain from doing normal-life stuff and it makes me prone to tripping, falling, and damaging myself even further at times. At the same time as being diagnosed with EDS, I was diagnosed with Fibromyalgia. Now, I consider this to be a bullshit diagnosis, not that people who are diagnosed aren’t truly suffering, but that in and of itself Fibromyalgia is a wide series of disorders that doctors aren’t really looking into the cause of and are making tons of money finding meds to treat it without even knowing what the problem is.

My compulsive researcher side is the one that has taken it as her personal quest to find out as much about medical information as possible. This is both a good thing and a bad thing because it helps the system find new ways of helping the body heal and treat things without the drugs docs always throw at us that seem to always make us more sick. However, it also has an immense downside of having nearly ever doctor we’ve come across believe that we are a hypochondriac, particularly since some of our main medical records do note our depression/PTSD (I don’t believe that anywhere other than our military psych records holds the Dissociative NOS diagnosis).

The background of our medical stuff is as such: I’ve had problems tolerating heat and sunlight for most of my life. While other kids loved running around in the sun on the playground, I stayed to the trees and wasn’t as active. That isn’t to say that I didn’t go out in the sun at all, but I always started to feel sick pretty soon after being very active, particularly in heat and sunlight. I tried to explain these things to my parents, but it never seemed to come out right, and was chalked up to being dehydration or my imagination. I also constantly had joint pain and it would feel like I sprained my ankle any time I ran without slowly working into the run: Sprints as a child were like a nightmare for me because even though I was good at the speed for short distances, the pain in my ankles would be immense from the first two steps onward.

Nobody believed me, so I kept going on, pushing through the pain, believing that everyone felt this way and I was just a wuss for not being able to handle what everyone else did easily. I got stomach aches each day at the same place in the drive to school. My dad thought I must be faking it and just trying to get out of school. I didn’t understand why since I loved learning, but they just dismissed it and I kept on going.

When I was about 16 or so I began to have severe migraines, blinding migraines where the world was tilted sideways and I very often would end up on the floor unable to even use basic functions to right myself. They didn’t do what normal migraines did…they stayed and stayed and stayed. I spent months with migraines, my body feeling on fire, like someone shot flames through my nerves all over my body and made me feel like I was dying. I pushed through, getting permission to wear dark welder’s “sun glasses” in school so I could manage to function with the hospital-bright florescent lights. During this time, my skin would not tolerate light much at all. If I had bare skin out in the sun it took less than 20 seconds for me to feel like my arm had 1st degree sunburns. I began to wear long sleeves over tank-tops all the time, something I still do to this day because it is the only way I can manage to not overheat and still wear long-sleeves.

I researched the hell out of everything that could be the issue and came up with two highly likely, but very different disorders. The pediatrician I was seeing at the time ran a battery of tests, completely ignoring my thoughts on what it could be, but after a few months of mostly trying me on drugs like depakote that made me insanely OCD to the point of wanting to kill myself because my brain was so obsessed with having everything “just so” that I didn’t eat or go to the bathroom for days because I had to have everything “done” before I could let myself stop. My mother just teased me and told me that she should put me on that intermittently so I’d do all the chores in the house more often (I’d been doing nearly all the chores in the house since I was 7 because of my older brother’s abuse, many since I was 4).

The tests from the pediatrician came back with nothing, I stopped going when she thought that I should see a psychologist. I tried a different approach and saw an Ortho doctor because of the joint pain: He told me to lose weight (I was 5’5″ and 185lbs). He never addressed my issues, just told me I was fat and that was why I was in pain.

Symptoms came and went, each year at least three months were spent battling colds, the body went though miscarriages that very few knew about and nobody but me seemed to care about. The body would be fine for a while and then get so much worse. During the time in the abusive BDSM/Poly cult scenario, the body was abused physically and tortured, but for the first time they someone believed me when I told them how much it hurt. They didn’t understand why I bruised so easily, how my joints would fail even when my muscles could obviously hold the weight assigned to me. Of course, this information was used against, me, but they recognized (two were registered EMTs) that something was different/wrong.

When I escaped all that, I was determined to prove myself. I lost 60lbs in six months from what was then my heighest weight of 210lbs and joined the Air Force. In order to do this I was walking up to ten miles a day, pushing through the pain and resistance of my body, and I was poor as hell, eating only oatmeal, occasionally salad, boiled chicken thighs, and energy drinks and M&Ms at work.

I managed to qualify for the Air Force, never mentioning any physical problems because if you don’t have a diagnosis it doesn’t exist, right? Well, it is true where the military is concerned. I signed up and shipped out, leaving for basic two days after Christmas. Basic brought its own share of physical challenges, one was simply that they didn’t allow vitamins and I knew that without them I was going to end up a lot worse than when I started.

I naturally managed to have my entire body bruised from the obstacle course, ended up with two sprained knees and a sprained ankle during the six weeks, where I ran my final qualifying PT test while injured. To this day I’m pretty sure that my drill sergeant fudged the times for that run by about 30 seconds since I maxed out on every other area for the test. But this was the beginning of a long line of military-related injuries to my knees, ankles, and other joints that led me to a diagnosis a week before my med-board for my PTSD.

The migraines had disappeared on and off, but would show up again in large clusters again (very much more like cluster headaches) and the auto-immune situation was never good. I was working in a hospital while Active Duty and never seemed to be able to get ahead of the curve on whatever was going around the place at any given moment. I started seeing doctors again for the migraines, was officially diagnosed with migraines, was put on beta-blockers that seemed to help. I went over and over about my joint pain and auto-immune issues and was tested and tested and tested and they came up with nothing. Finally, they referred me to a rheumatologist who happened to be studying the connection of Fibromyalgia with a connective tissue disorder called Ehlers-Danlos, because research-me was inquisitive about his side comment, he described the disorder and I demonstrated key attributes and got a diagnosis.

I then went without medical insurance for two years. I didn’t see any doctors other than the ones medicaid covered for the second half of my second pregnancy. I was dealing with leaving my abusive ex-husband, moving to a new state, having a toddler boy and a new baby to deal with, and my own health took a back seat to making sure they were ok. Somewhere in there I managed a referral to a rheumatologist under medicare who confirmed both the FMS and EDS diagnoses and was trying me on various medicines, to include SSRIs, SNRIs, etc. that are commonly used to treat FMS. They made me worse. The SSRIs made me manic as hell, the SNRIs made me rage so hard that my husband had to physically restrain me when my older son did something minor and I flew off the handle, and after the third or fourth med that was making my life worse (and fucking with the system even more than was already there) I gave up and told the doctor I was done with that. The only good thing that came of that is that I had a confirmation of my DXs and had found through blood tests that my vitamin D was low so I could begin to supplement for that.

I didn’t really see a doctor again for a year, after I was married to Puppy and got insurance again. The doc ran some basic blood tests, showing that my hormones were a little out of whack and though that I should supplement with progesterone (it was low). However, I didn’t want to pay out of pocket for hormones that weren’t covered by insurance so passed on that and looked for other ways of handling things. I hit a low point that year where I was so sun-sensitive I was wearing Muslim hijabs, scarves, and full-body coverings any time I left the house because I would burn so badly that I would swell. I have a picture I took with my face so swollen from being exposed to sunlight, but no doctors seemed to even want to listen to me about this strange symptom.

2011 I saw doctors, but not for figuring out any of the immune crap, migraines, headaches, etc. I fell on some stairs due to loose carpeting while holding my then two year old. I folded my left foot in half, shattering the arch, snapping the end of my second metatarsal completely off, and spraining my left ankle, knee, and hip, and likely fracturing my hip as well (they never decided to take x-rays of anything other than my foot). It took a surgery with a fusion, a bone graft from my ankle, seven screws and a plate to put me back together again. I spent most of 2011 house-bound and slowly learning how to walk again as I was non-weight bearing on my left side for over three months.

In 2011 I ordered a genetic profile through 23andme.com to see if I could find anything that would cause my medical issues. One thing stood out that I have no recollection if I have been tested for. It is called Selective IGA deficiency that I have a marker for that could explain my auto-immune issues. I also participated in a genetics study with Pathway Genomics in early 2012 seeing that they tested for different things than the other genome service. They came back with three disorders that I showed markers for, one of which had two mutations indicating a high likelihood that I have the disorder. The disorder is called MTHFR deficiency which is a dysfunction of the enzyme that processes folic acid, leaving my body less able to heal itself and less able to do pretty much anything efficiently.

None of those results have been brought up with a doctor yet and I need to start seeing if I can find a doctor who will actually listen to me and see if they can determine what might be useful if these things are actually what is wrong. The selective IGA deficiency is associated with developing an intolerance to wheat (Celiacs), Lupus, and other auto-immune conditions. The wheat intolerance I already have determined through doing a challenge test where I eliminated the food for a month and then reintroduced it and ended up sick as hell with a migraine  within a few minutes of eating it again.

So now I have to start making appointments. Puppy is mad at me about the whole situation, saying I should have already been dealing with this, but I haven’t even had the ability to because we can’t afford childcare and the kids are with me full-time. He works 70 hours a week and can’t usually have time away to watch the kids for me to have appointment after appointment. I’m hoping I can get somewhere with this, but I’ve been through years and years and years of this testing with nothing but docs telling me it is all psychological.

I know it isn’t. Even my shrink for PTSD in the military was willing to write a note to my primary docs to tell them to stop blaming it on psychological reasons and figure it out, so I can at least be appreciative of that. Now to try and find a competent doctor (or even see a doc since most are PAs, physician’s assistants, or NPs, nurse practitioners).