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,
There is so much to say, I don’t know where to start.
Basically, I am either having seizures (more likely) or psychosis (less likely) and our dear friend Shannon is going to drive us home to BC, where early next week they will do an EEG and then go from there.
Mostly, things are better than ever and with the prescription adjustments I’ve had over the last month I am experiencing enough clarity to recognize that hey, maybe I am not crazy and my brain shouldn’t be a constant electrical storm where I feel like reality is time lapsed and full of strange auras and sensations. And I mean, I am open to me being totally off the wall fucking nuts, I am. I am even at peace with that. Either way, the $800 a month worth of migraine and anti psychotics and such hasn’t actually done anything but mood stabilize me to the point where I could view my brain with objectivity. I really need to be post brain check ups to comprehend all of this, but thought I would let anyone interest know, from me what is going on. I feel like I have a week to get things more sorted out, before I hit my pre ovulation experience.
I’ll update sometime next week. I am feeling rather optimistic about things right now.
At home, the new wood stove is in, the propane generator is all hooked up and running perfectly (although more loudly than the website and seller promised.) I am not really sure beyond that. Our plan is to just wing it, depending on how all the medical stuff plays out. I emailed Coach Rapper’s school and told them to send the bus for him next Wednesday morning. He needs time to adjust to the change before adding in another one. We have a hotel room booked for tomorrow night in Fort Macleod, so will be half way home then!
Looking forward to seeing Mr.T and checking out my gardens in the winter. Maybe digging out my dahlia to see if I can save them for next year.
If you were an animal you would be a sparrow
wild and free
split tailed and tornadoing downwards
in a spiral of glory
you would know where old time wheat grows wild
in ghost farms of the rural south
content in the gabels of a composting barn
you know the weary arms of a farm woman; modern day
work undone even after all these years.
Show me your prize roses, still in bloom,
Show me your peach preserves.
You are a woman, soft and warm.
Yield to love, love is unyielding.
Suddenly, as I was driving my mood lifted and I felt genuinely happy, a calm happy, safe secure.
Finally. It’s been 6 days since I have felt much of anything, which was a mixed blessing. I just had a fairly major medication overhaul. The first few mornings I awoke with a weight in my heart and by late morning felt emotionally flattened which stayed for several hours. Then I was hit by how productive I felt.
Last month during my cycle I just didn’t post for 3 weeks. During those weeks, I had a darkness. Everything felt clouded with grief and my chest ached. Nothing had changed around me. Plenty of things changed inside me. I have Bipolar Mood Disorder. Which basically I have had two major depressions and one major manic period. To me, it doesn’t feel like a mood disorder- it feels like an energy disorder. Lucky? For me my moods have a bit of a schedule:
When I ovulate Severe migraines with auras. Hyper sensitive to criticism. Weepy.
A few days later- really “up” mood, go go go, edgy, snappy. I start getting OCD about this time- about whatever I happen to be into at the time. Usually in a productive way.
After a few days of high production, little sleep I fall into a darkness. I ache. I retain water. I am cold all the time. Migraine auras bring me in and out of consciousness, the pain is so intense. I have great difficulty paying attention to my surroundings. I just want to sleep. I must surely die, I think. For 3-4 days I am in agony and misery. It hits like a wave.
People tell me that I don’t seem bipolar to them.
That’s because I stay away from people I know when I am depressed. My moods change so quickly that only after 14 years of menstruation have I finally begun to chart in detail.
The last 7 years have been insane, with 5 pregnancies (two early miscarriages, which I am at peace with, but mentioning because that was a special hormonal roller coaster in and of itself) and continuous nursing. During my first miscarriage, I was just 20 and Mr. T and I were relatively new to our relationship. I went crazy. Totally bat shit crazy. I tried to use mind control to plead people to help me. I wanted to die. I felt as though I was dying. I had severe constant nausea and vertigo and completely delusional that the baby must not have died. There was some mistake. I now know I was rapid cycling and had amazingly severe migraines.
I was convinced deep inside that I was schizophrenic (which heck, maybe I am) and I was scared as hell. My brain was constantly moving, flipping through images like a Rolodex. Mr. T yelled and stomped his feet and was generally angry to be around.
Mr. T and I parted ways for almost a year shortly after that. I think we were both scared of how badly the whole thing went down.
I tried to find Jesus with all of my heart. I opened it all the way up. When I couldn’t find Jesus I looked for God.
I felt immense solace in communion and prayer. I went to church several times a week and to a bible study here and there.
Months later, after a 10 day silent Buddhist retreat I found atheism, which has been a comfort to me over the years.
During the Buddhist retreat I found the solace I was looking for in meditation.
I also came to terms with the fact that I would marry Mr.T, and left the retreat no longer resenting him, much. We had not spoken to one another for ages.
I didn’t even really like him. Seriously.
But I was drawn to him and I swear, we are just starting to like each other now- and it’s been 8 years. We share the same vision, and we just happen to be the person who is in the others perfect future, so I suppose we rode it out hoping we would get to where we are now, still alive and still married.
I am sharing my story upon multiple requests. I am at a place where I can write about it now. I didn’t write, journal, take may pictures, make art for most of my motherhood journey. I was just too damn tired. I don’t regret it really, because I carry it here in my heart. And there is a lot I have forgotten and would rather keep that way. I’m at a place where I don’t need to be worried about. I have a great doctor, a supportive husband, amazing parents and extended support. After 7 months of mood stabilizing meds, the cocktail still isn’t quite right. I cycle between low production and high production and feeling like I am dying and like it might possibly be the best day of my life. I’m sorta striving for the middle ground, which is a bit confusing, because there are days truly, many of them, where I feel exceptionally great, and in between I’m very good at faking it, which feels like many tiny little lacerations on my spirit. Other days I can’t get out of bed.
I’m pretty sure that pre puberty I was quirky, but not yet crazy. At 16 I went on the pill because I was having really bad cycles. Right before and during my period I had/have hot and cold flashes, aching kidney feeling, nausea, migraine auras (which I just just figured out what they were. At that time I thought everyone’s vision was like that. I frequently have had the sensation I am going blind and dark bars slide in from the side. For me auras are strobing lights, bars, boxes. A true aura of fading rainbow colours around objects. I have a strong sensation of dejavu and the feeling of watching the scene from outside of it. I frequently have a hard time telling what was reality and what was an idea or dream. I see things move out of the corner of my eye and hear buzzes, beeps and other non specific sounds. Today I swore I could hear a cat meowing loudly, but the kids swore it was quiet. I’m pretty sure most of this is migraine related, because I have some rx meds for migraines that take care of all of these symptoms.
I literally feel like I am going insane after a few days of migraines. Last month I waited 17 days of on again off again migraines until I went to the ER and begged for help. The little dissolve in your mouth discs cost $20-$60 per dose, depending on if the first ones work, or the migraine comes back 8-12 hours later. I am having a brain freeze on what it is called….Even after I have taken it, it is still extremely difficult to keep my attention focused.
this was my idea
little house on the prairie
you went along with it
I am sure to prevent
20 years of me convincing you, what a great idea
this is where my roots are
woven into thin black horizon and sparse tree
frost etched windows ache in the wind
trees more dead than asleep
took me all day to turn up the heat
never thought of it until
tea bag in hand, baby on hip
I realized I was crowding the kettle
By this time I was wearing earplugs and sunglasses for extended periods of time, both indoors and out.
This rock has never been held by hands or eyes
this rock is immortal
It is history, a record, a time piece
I wear no watch
and through it I am immortal too
I wonder what these strange hieroglyphs say
white line through slate black
They transform before my eyes, glinting in the sun
I squint and feeling how I was trying to feel when I was a church goer and looking for Jesus
this feeling that I am part of something more
I lick it, I always got off on communion
It tastes like…rock
And I am grounded, just like that
suddenly blinded, lush, green, light
The children’s thirsty voices break my fog
and I dip my vessel , watching clear new water spring out from the rocks
they drink it clean
So, you know the moment- 4:30 and someone asks you what’s for dinner, and you genuinely had not considered this dilema even once that day. And dinner is kinda like the SAHM opus, so you are supposed to have something planned. Now the last many months I fully admit my Mum has been making most dinners. I fail to plan ahead though (join me this summer in meal planning 101). She thinks about it the day before, the afternoon of. Then there is suddenly dinner ready. I am so greatful for my parents, throughout my life, and especially the last 6 months. They really stepped up to the plate when I fell off it, and well, have taught me what unconditional love is. When my Mum took the midnight bus (not really sure if it was really an overnight bus or not, but I thought it sounds better and come to think of it it must have been a 24 hour bus ride anyway, so yeah, it was totally the midnight bus.) When my Mum took the midnight bus to me this fall, she had no idea what she would be arriving to. None of us really did.
Maybe I was still in the Hospital when she got there, maybe I was already at home- I don’t actually remember. What I do remember is the intense feeling of comfort and relief. And I was 27- with 3 children of my own.
So anyway, thanks Mum. I appreciate all the dinners you have made me all of my life. Because making dinner sucks ass. Am I allowed to say sucks ass on here? Probably. I’ve heard the internet has changed a lot in the last 10 years.
But you know what is amazing? Putting together quick and beautiful meals that nourish your family. To know that your children are developing healthy relationships with food, their bodies, cooking and you are creating a sort of emotional security in your child because they know they are cared for in this way. Which is why my Mum cooked for me and my kids all winter, both grievously and lovingly.
So, first off I took frozen Haddock out of the freezer and defrosted it by putting it under cold running water for almost 5 minutes. At this point I was trying to calculate how much water I was wasting and feeling really guilty about it. So then I let it rest in a bowl of cold water for another 5.
Then I cut the haddock in strips, dipped it in egg and drenched it in crushed corn flakes. That’s it. It was amazing. I cooked it in a frying pan for about 4 minutes on each side.
Son 1 had 2 pieces with “fries” made out of red pepper and cucumber.
Son 2 had apples and peanut butter. Sigh.
Son 3 ate 3?!?!?!?! pieces of fish and a couple red pepper sticks.
My salad is a bed of mixed greens with a yogurt and apple cider vinegar dressing (3 parts astro necterine fruit on the bottom nectarine yogurt without the necterine part stirred in to 1 part apple cider vinegar) topped with pecans roasted with a touch of maple syrup and hot sauce. Very yummy dinner quickie!