The year of the Box.
I am mostly well following my gyno surgery. I ended up having the ablation, laproscopy, tubal (can’t remember the name) and the hysteroscopy as excepted as well as the endometriosis that was riddling my belly removed. My intestines were pretty glued together and everything feels very strange as it settles back in.
I am stuck back on a couple of days of strict bed rest and a reminder of how little 10lbs is after overdoing it a bit near the end of last week. 2 full weeks on half assed bed rest now and mostly I am bored of it. I either feel like NOT being in bed, or so crappy that I just want to sleep. I am tucking away some time here and there for writing though, which feels good. Mr.T and the Trifecta of Terror are at the yurt today leaving me alone in the motel. Let me tell you though, I have been dreaming about being alone for years. I have taken advantage of some mint chip ice cream, had 1000 baths and have watched plenty of movies and read several novels and slept in often.
I used to love to fill days with nobody but myself, before children, just lost in my own head. This whole experience with the surgery and recovery has felt much like a birth and newborn, except I am my own hatch-ling.
The past year has been such a year of growth for me as I have learned to advocate for myself and my health. I am becoming a better mother, by becoming a better me. I had to learn when to step down from myself. I have always had such big dreams and visions of what I should be able to do so it has been really difficult to admit defeat.
With regards to my health: I finally got to see a good Neurologist and we instantly hit it off. She feels like she can indeed help me feel better, but it might not be a straight road. I have EMG’s ordered for both of my hands and another EEG and an MRI as well. my Dr’s still don’t know what is going on but they keep throwing MS around like a 4 letter word.
My short list: Bipolar, migraines with auras, extreme trouble with heat (new the last 2 years), this weird “numb gun” sensation in the top of my neck on the right hand side that shoots off tingling zaps down my arm and spine and up around my head like an electonic spiderweb, passing out randomly (I don’t have a driver’s license anymore because of this), memory problems, and episodic pain and numbness in my hands, legs and lower back. I’m tired a lot. Sometimes the pain hurts so intensely my bra straps feel like weights and the keys in my pockets like knives. I ache like a lead blanket lays between my skin and muscles. Some mornings I wake up and the pain and stiffness is unbearable. My hands have been crippled in pain like I imagine my grandmother’s as she died. Suddenly the symptoms change as quickly as they arrive. I awake and my hands are not quite fine, but useable. Am I losing my mind?
I’ve been struggling with some of this for the last 10 years. It is hard to know what is endometriosis, how much of the chronic lower back ache, cold flashes/hot sweats, migraines, mood disorder, nausea is related to that? I have about a 40% chance of needing endo surgery again. How much is not? It’s pretty obvious that isn’t the only thing going on. To be honest, I didn’t even really register the difficulty of things (eg living in a tent with 2 boys under 5 while pregnant and your husband is 1200km away) because my internal world was so painful. I was numbed to it, in fight or flight. Being in that state of urgency kept me focused. Keeping me focused kept me in reality. Anytime the focus slipped, so did my grip. I’ve always felt like for me bipolar was more of a symptom than a diagnosis. It never answered the chronic pain, extreme fatigue, electrical storms. I mean, don’t get me wrong, I do agree that I fit the diagnostic criteria for Bipolar 1, no doubt, it just doesn’t explain enough. Having a mental health crisis can be overshadowing, I guess.
I’m in a really good spot right now with my marriage, my kids, and mostly my health. I’m fitter and healthier in many ways than I have ever been in my life. At times I also feel sicker. I feel really good about this spring and settling into our little valley and becoming a more engaged part of the community. I’ve just been in survival mode for so long that it’s nice to be able to sit back and breathe a bit, I have really quite enjoyed surgery recovery. I really like all my health care givers and am feeling confident that no matter what diagnosis I end up with, my quality of life will improve. It pretty much has to. It’s looking like I am going to go to either a MS clinic or a neuro/psych clinc in Vancouver sometime this year for diagnosis, since nobody really knows what to think, and it is unlikely the MRI will give enough information.
Love to you,