My Chronic Illness Story, 2015Read Now
I've had allergies and asthma since I was a kid that caused some issues but my chronic illness journey didn't really start until I was 12 years old. In October of that year I was hospitalized for a week when I needed an emergency appendectomy. I came in to the ER with a pain, a high fever and, unbeknownst to us, pneumonia and ended up in surgery fairly quickly to have my appendix removed. A fairly standard operation ended up keeping me in the hospital for a week as my fever shot up very high every evening as I healed from both the surgery and pneumonia. Everything seemed fairly normal after I left the hospital though, I was very tired and couldn't do a lot of exercise but that was to be expected. Over time when the fatigue didn't abate and I started getting more symptoms, such as high heart rate when I was standing, dizziness, vertigo, and nausea, we went to our family doctor trying to find answers. It didn't even occur to us that it was side effects from the surgery since it had been quite a long time by this point and I was healed. In truth the surgery and ensuing hospital stay wasn't the reason that I was sick but it was, most likely, the trigger that set everything else in motion. When you have dysautonomia it isn't a disease you catch but rather something you are predisposed to developing.
The journey to find answers to the mysterious illness that was slowly taking over my life took 6 years and included several cardiologists, a pulmonologists, a gastroenterologist, a sleep therapist, a couple of neurologists, an endocrinologists and even a psychiatrist when they thought that maybe depression was causing the insomnia and possibly more. The therapist sent me home with us both in agreement that I wasn't depressed. At points later I will admit though that depression did come into play in my life but it wasn't the cause of my illness(es).
Symptoms ranged from gastrointestinal issues like IBS to heart problems such as tachycardia and blood pressure spikes/dips and more but it seemed like no one had the answer to what the diagnosis should be. There were some wonderful doctors along the way who cared very much and did their best to treat the symptoms I was experiencing and then there were some doctors... we'll just leave it as they weren't so wonderful in their treatment of me. Eventually I was diagnosed with POTS, NCS, and NMH. All three are forms of dysautonomia which is a disregularization of the autonomic nervous system. Having a diagnosis didn't really change the treatment I was receiving very much though as, at the time, treatment was mostly symptom management which was what we were already doing. However, it opened the door to support groups around the world that were all dealing with the same issues as me. That was a blessing beyond measure.
Over the years my symptoms have had good spells and bad spells but I know so many others with the same conditions as myself who are in much more difficult situations medically. I am very grateful that I am able to work for instance- I can't work outdoors in the heat and I can't do a lot of physical labor type tasks but I can work in an office or a classroom. I am grateful that I am able to walk- not everyone with dysautonomia can stand for more than a few minutes, let alone walk far. My limit used to be 20 minutes for standing which made regular activities such as grocery shopping, going out with friends, and getting around an airport rather tricky to say the least. As I have found physical coping mechanisms, changed lifestyle habits, and perhaps just gotten better somehow, I have been able to reduce a lot of my symptoms and I can stand for much longer now.
Within the past few years a few new things have come my way on the medical front. A diagnosis of MTHFR, a genetic disorder that affects detoxification and menthylation within the body, was one that came on the heals of a scary time for my sister. She had some issues and the doctors discovered that MTHFR was the problem. Since it is genetic the whole family needed to be tested. I had to fight for a year to be tested as they told me there was no cause to test because there isn't a treatment and that it 'really doesn't cause any problems.' So far research has linked blood clots, aneurysms, miscarriage, depression, fatigue, migraines, certain mental disorders, anxiety, high blood pressure, and other issues to MTHFR- some of which I experience myself. This does not mean that MTHFR is the cause of these issues though, further research is needed to determine causation, as of now we only have a link or association. I have defects on the two main genes they test for when checking for MTHFR but I only have one copy of the mutation on each gene rather than two (this would be called compound heterozygous) so my symptoms aren't as pronounced as someone who would have both copies but worse than someone with no copies or a copy on just one gene.
The second issue that has come up is pain... All of the pain. Every morning I wake up and roll out of bed hearing a dozen snaps, crackles and pops in the joints of my body. They usually do not hurt much but if a joint subluxed, or partially dislocated, while I slept there is pain. The joints that are more common for me to sublux in my day-to-day activities are my hips and shoulders but my ankles roll regularly and my knees give way without warning as well. Recently my thumb has begun to start subluxing more often as well... that isn't particularly fun but it will eventually be just like when my hip or shoulder does- put it back and move on with my day. All the pops and cracks along my spine especially tend to mean pain and inflammation. Luckily I have a wonderful massage therapist who I see regularly to help with the knots and tension that inevitably occur from all of this. Without her I would likely be dependent on pain killers and anti-inflammatory meds which would be bad for the next issue I'll talk about. I'm still waiting to be seen by a geneticist but symptom wise (there are more but this post is getting really long so I'm skipping past them) I'm likely looking at a form of EDS.
The last issue that I've been dealing with lately is headaches. I pretty much live with what I now consider to be a low grade headache 75% of the time. Sometimes that low grade headache will go away (hurray!) but other times it turns into a migraine, higher intensity tension headache and even the occasional cluster headache. I am working with a neurologist to see if we can discover the cause but so far we have ruled out rebound headaches. I have an MRI later this week as well as an ophthalmologist appointment upcoming to check for some of the worst issues like swelling in certain areas of the brain, descending cerebellum and tumors. After the doc looks over the results I may be looking at a spinal tap as well (no fun...). I am hopeful that we can find the answer and if not fix it then at least find some ways to combat it.
That's a pretty quick overview of the last 15 years of my life from an illness perspective. There have been a lot of bad things but also a lot of good... I wouldn't be who I am today without having gone through everything that I have in my life. I like who I am so it makes the good list. Further, I have met some amazing people on this journey that I wouldn't have met otherwise. I've been able to help people that I may not have been able to otherwise. I also discovered Paleo/Primal/Real Foods Movement along my journey... it has changed my life for the better. My symptoms are so much better and it has opened new doors to my understanding of my body with researching the diet and lifestyle that surrounds many of its practitioners. Basically... it's not all bad, I'm used to a certain level of pain and live a fairly regimented life most days but it is who I am and I am ok with that.