Strictly speaking, this background isn't even necessary for the rest of the blog, but I find the context is important. The regular text is my physical health. I have some notes on my mental and emotional health in italics. Read only if you wish. I am going to break this up into a few posts, if you are going to read them, it is important to read them in order. This is the third.
At the end of our last episode I was starting to lose hope I would ever be free of pain, and I was wondering what on earth was next.
I think we all felt that way a little bit. Like...."what now?" Because our cure-all had proven itself to be....well... not snake oil, I mean it solved a very dangerous problem, but certainly not the miracle cure we had all put our hope in.
It was after this that my family physician performed the physical test for a condition called fibromyalgia. Guess what...I have it. I have a severe case. Of course. Some of you may have heard of it. Most of you are misinformed about it. I am going to massively oversimplify fibromyalgia.
There are two kinds of fibromyalgia. Real fibromyalgia, and leaky gut syndrome misdiagnosed as fibromyalgia. Both have very similar symptoms: easy bruising, all over pain, nerve pain, numbness, tingling, more severe localized pain, slower healing. We think I have real fibromyalgia based on how my pain level has not responded to diet change. With Leaky Gut Syndrome your symptoms can be treated and all but eliminated with diet control to help heal the lining of the stomach, preventing the leaking through the lining of the gut. People with real fibromyalgia also show an excess of AV shunts in their blood when tested, but they do not yet know if that is causal (the reason for the pain) or correlational (just happens alongside the pain).
In addition to this, until the proof of a physical symptom in fibromyalgia (the AV shunt studies as an excellent example) after 2010, many psychologists claimed fibromyalgia was completely psycho-somatic (all in your head.) Now how people all over the world could have nearly identical symptoms and trigger points (ugh just look that one up on google) without knowing each other, many of them, like me, never having heard of the condition is beyond me. But thanks to studies in more recent years this has been proven to be a false accusation. But a lot of false information was disseminated during this theory and remains available, confusing many who do a cursory search about the condition. But unfortunately there is still a stigma about fibromyalgia to many who are not up to date on their research.
Fibromyalgia is thought to be genetic, or otherwise with you from birth, but the symptoms do not begin until you have an "extreme pain event." This is when your pain system is overloaded by something, in my case a spinal fusion, and afterward (again to massively oversimplify) your pain system never resets to "0". Your new normal is a.....1, or a 3, or in my unfortunate case a 7.
Oh. I graduated Valedictorian. A sad life it is when that is just a footnote.
I wasn't able to sing (properly) much during the 6 months before and the year after my surgery. Apparently those muscles are important to proper singing (who knew? - everyone who sings actually, I don't know why I didn't see it coming ahead of time) and I wasn't able to project properly or train. But by the time I was in college I was singing more. I took part sporadically in the worship team at my university's Campus Crusade (Cru). I also pursued some books and Bible study times hoping they would bring me peace. But peace was still a tenuous concept.
Over the next 4 years fibromyalgia systematically destroyed all of my dreams. Yes, I know, melodramatic. I had once dreamed of becoming a vocal performer. I had to quit singing for two years because of the surgery. I also dreamed of becoming a fashion designer, so I chose to pursue that dream at college. And I had always wanted to write novels as a side gig. I got in to a prestigious (then top 40) university with the Founder's Scholarship, and I began my college career at Syracuse University with a dual major in Fashion Design and Writing and Rhetoric. After over two years of training in Fashion Design, my body just couldn't keep up with the strain. The 4 hour nights of sleep, lifting mannequins, bending and kneeling while pinning hems, and long hours bent over sewing machines began to take their toll. In addition a wide, spread-out university campus which required an unhealthy (for me, not in general) amount of stairs each day was a real problem. So I took a gap year to do physical therapy and focus on my health.
I worked on a med-x machine for a year, which is essentially a torture machine where they strap every part of your body down so that they can isolate (as much as possible, no muscle is truly isolated) the area that needs the most work.
The therapy was pretty successful actually, and while my pain didn't decrease, my functionality and ease of movement improved vastly. This paired with a new partnership with Syracuse's amazing Disabilities Services department to help reduce my stair walking made me confident to return to school...but not to Fashion Design. Through a lot of talks and tears we decided that Fashion Design was not the best choice for my health and I switched to a single major in Writing and Rhetoric.
And another one bites the dust.
I haven't seen the movie breakthrough yet, but just from the trailer I know that "Why you?" is a question a lot of people had trouble with during the real-life events that transpired. I immediately think "Why You?" is selfish. We should take joy in others' healings. I think "Why not me too?" is more where I was at the time. But while perhaps that isn't selfish, it is certainly selfcentered.
I graduated in 2013, one year late because of my gap year. I had to carefully pace the rest of my college experience, only taking 12 credits a semester and taking the expedited "Maymesters" (one month intensive semesters with 6 hour classes daily) and online summer credits. But it was wise and helped keep my health in check.
During my gap year I had met someone. By the time I graduated we had already been dating for awhile, and he was from back in Michigan. After I graduated, I had looked into areas that were good for writing jobs (at the time the Carolinas for example) and good for my fibromyalgia (Maui and San Diego). During a family vacation to Maui we had discovered that the reports that climate massively affect fibromyalgia were not exaggerated. Maui has one of the best climates in the world for inflammation and nerve pain. San Diego is the closest on the mainland but not quite as good. It has to do with the following negative factors: 1) high humidity, 2) fluctuations in humidity, 3) extreme temperatures, 4) sudden and significant changes in temperature, 5) either extreme in barometric pressure (high or low), and 6) dramatic changes in barometric pressure. Unfortunately all six of these factors are bad in Michigan.
The man I was dating had not yet graduated university and I decided to wait until he graduated to move with him, either getting married before moving and living together, or getting engaged before moving and living apart for a time. But it became increasingly obvious that he was unwilling to move away from his family. Because of this I got involved in a job with Michaels, which I loved in principle. I ran the events program and did crafting spots on TV. But eventually it was almost like I was stuck in a job that didn't use my degree and in a relationship that was never going to allow me to work in my degree.
Watch one of my DIY Video Spots. It's not one of my best ones, but it was one I could find.
And so my dreams of being a writer slowly died. Three down. If you count how I wanted to be a dancer when I was younger, that's four. (The dreams of being a dancer morphed into dreams of musical theatre and broadway, so I personally still count it. Sure as heck couldn't have danced on broadway during that time in my life).
It was actually for other significant reasons we ultimately broke up. There was a lot of toxicity that I had to work through after. Now I wish him the best, he is happily married now.
During this time, even with the help of my boyfriend, my family, and family friends it became clear that I just couldn't live a normal life. Working used up all of my energy as well as all of my pain tolerance, when I came home I was incapable of basic chores like washing dishes, cooking, and doing laundry. And I don't mean I dislike those chores. Cooking especially I adore, I meant I literally could not physically accomplish them. Grocery shopping was a nightmare. I couldn't carry the groceries inside. It was too painful. I eventually started separating my groceries into frozens, refridgerate-ables, and non perishables. I would carry the frozens in, rest for a little, carry in the things for the fridge, and then rest 2 hours before carrying in the rest in two increments. I had to plan every bit of my life in order to even accomplish basic tasks. My living situation became messy and unhealthy. It was clear that living on my own in Michigan's climate was untenable.
Shortly after breaking up with my boyfriend of over 3 years an opportunity popped up to go to Hawaii.
I'm sorry this chapter was a bit shorter, but if I continued, there isn't a good stopping point for three years. :)
No comments:
Post a Comment