Sometimes I get off track.
Way off track.
It’s been over two months since I last posted on the blog and for that, I apologize.
My mind just hasn’t been focused or energized enough to get back into the swing of things.
I haven’t been feeling well.
I have also been inclined to turn my focus inward and outward expressions in this state of being, especially to thousands of people online, seemed forced and difficult.
You see, about a month ago, I went to see a rheumatologist for the first time about lower back and hip pain that came on about a year ago. It seemed to be triggered by a new bed I purchased that was way too firm for me, but after going through several replacements, the problem persisted.
It was as if my body got stuck in some pain loop that didn’t know how to resolve once the original trigger was removed.
It was severely affecting my sleep and still is, although to a lesser degree. The general pattern goes something like this: I fell asleep no problem and could stay in bed for 4-5 hours max before having to get up and move around due to the pain and discomfort.
My frequency started to increase in the early morning due to the exhaustion I was experiencing. Then, I couldn’t tell if I was waking up due to the back or hip pain, or the need to urinate.
For me, it’s never just been about the IC, although it’s by far been the most disruptive and challenging issue to work with. It’s always been a whole body thing.
I first started to experience signs of something being off with my health when I was just 13 years old. It started out as an increase in fatigue and foggy thinking.
In high school the fatigue and brain fog worsened and I had issues with sleep, mostly with falling asleep. I also became increasingly anxious and experienced a mild, unrelenting depression.
In first year university I began to experience bloating, gas and other signs of digestive distress (doctors labeled it as IBS) and not long after that I started to have increased urination and urgency and went on to be diagnosed with IC.
I suffered for another 6 years intensely with IC and the other health problems until I started to change my diet drastically, learned how to utilize supplements and herbs and took measures to alter my lifestyle.
I stopped going to doctors because I always left the appointments feeling frustrated, angry, unheard and very discouraged with the lack of support and solutions to my seemingly never-ending list of health problems.
Although I have improved drastically and some of my issues have been resolved, I often feel like there are still pieces of the puzzle that are missing. I have suspected autoimmunity for years, but it can be very elusive and difficult to diagnose.
Given my most recent symptoms of back and hip pain, I figured the rheumatologist may be able to do some further investigation into the autoimmunity piece.
I was skeptical when I walked into her office.
Let me back track a little.
While I was waiting in the narrow corridor, apparently also used as a waiting area, which consisted of a long black leather couch positioned across from a row of lockers (it was a university/research hospital in an old building), I saw a female doctor go by that looked to be only a few years older than myself. She was dressed casually and the only reason I identified her as a doctor was the stethoscope she wore around her neck.
I thought to myself in a moment of judgement, please don’t let her be my doctor, I need someone more experienced, someone who really knows what they are doing.
But she surprised me.
During the hour we spent together she asked me a series of questions and she did not dismiss my symptoms or elude to the fact that it was all in my head.
I felt heard.
I didn’t realize what she was doing when she started to press on a number of areas across my body, but I later found out she was trying to identify whether or not I had fibromyalgia. All of the pressure points she tested were tender and she explained to me that this is a defining feature of fibromyalgia . On the average person, there is no tenderness. All of mine were tender and some were downright painful to the touch!
So I left her office with two important pieces of information – I most likely have fibromyalgia and what she believes to be neurological dysregulation.
This doctor was able to synthesize all of the information I gave her and give me some new insights into how all of my long-standing symptoms and conditions may be connected. She also ordered further blood work to look deeper into the possibility of autoimmunity, which I was happy about, and x-rays of my spine.
Although on some level I understand that these “diagnoses” are just labels and fancy words that all tell me the same thing – my body and mind are not balanced and are in a state of dis ease, it does help me to re-assess my supplement plan and make better decisions as to where to spend my money.
It gives me further insight into what specific malfunctions may be going on still and where I need the most support. Improving my brain fog and cognition, as well as improving sleep quality, are my two priorities at the moment.
Given this new information and my propensity towards more natural, non-drug treatments, I am looking into neurofeedback as a treatment option, which is basically biofeedback for the brain.
I also have some further work to do on healing gut dysbiosis related to small intestinal bacterial overgrowth (SIBO) and Candida imbalance. These types of root causes often take much longer to completely resolve than we would like. It’s very common to ease up on your diet and other strategies too quickly and relapse.
I’m sharing this experience with all of you for three reasons.
First, to let you know that I am human. Although I have made serious strides in improving my IC and other health ailments, I still have struggles and setbacks.
Second, to let you know that I am still here despite these setbacks and am hoping to get back on track with the blog posts so that you can continue to get the support and guidance you need to get through this.
And third, to demonstrate that it’s important not to give up hope and to continue to seek the answers you need from others and from within yourself, so that you can piece your health back together!
The road to recovery may be long, with triumphs and joys, as well as disappointing setbacks, but we need to walk it. We have no choice.
The tricky part is to practice accepting yourself fully, exactly as you are in this moment, flaws and all, with compassion and simultaneously cultivate hope and work towards creating the best health possible.