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,
Google it! Fun fun. I forgot to add that I had to stay in the hospital for so long because it turns out I am allergic to the anti seizure med lamotrigine and ended up with lovely face/chest rash that once it started to hive and blister I was pulled off it cold turkey and kept longer. 7 days of Benydryl and all is good.
Okay, gimme the bad news.
I shit my pants.
The good news?
My belly doesn’t hurt anymore.
True parenting conversation I had this week.
So, where did I leave off? Mid November? I came back, cleaned and organized like mad while my Dr’s tried to get me into a neurologist/eeg/mri. I finally have an appt for a Neuro consult in early Feb. Things weren’t working out quickly enough to get me in before Christmas and so I was coached through how to get into the hospital through the ER to end up on the Med floor not in the psych ward so I could actually get an eeg instead of a benzo. And it worked! But the Med floor was full of the elderly and the dying and honestly I did not need to be in the hospital so to my agreement and delight I was moved to the Psych ward for the rest of my
vacationstay. It turned out to be full of interesting times, including 9 hours of oxygen in the ambulance for severe vomiting- they were threatening to put me on IV and the other patient being transferred having a heart attack. The paramedics were so on the ball I didn’t even realize what was happening at first and they had her stabilized and back to the hospital lickity split. I was 2.5 hours late for the EEG and pretty much missed the neuro appt where they told me my brain looked lesion free and I could go ahead and have the reproductive evacuation done. No clear answers from that, but nobody was really expecting there to be. It’s looking more and more like I will be spending a couple weeks at UBC in hospital having a neuro/psych eval done. Should I have a poll- neurotic, psychotic or both?
Internet time is up!
Christmas was lovely!
We are warm enough.
We are out of propane.
We are *hopefully* moving to Trail for Jan 15-April because hiking in with kids, water, wood, food, going to the laundromat, pool, etc is tricky, especially with all this health stuff.
Love to you all. I’ll try and update sooner.
PS. 158lbs baby! That’s something like 108lbs of weight loss!!!!!!
September spun by with a cool breeze and warm sun. This morning was first frost. A light one, but definitely a frost. My green tomatoes hang heavy with my first bumper crop, I think I wasn’t aggressive enough in pruning them back this year and they became quite the jungle. Towards fall when I was worrying about this day coming I started ripping off new blooms and excess growth. I did this twice earlier in the summer as well. The compost alone I’ve gained from all the tomato greens has certainly paid for the transplants. I am looking forward to ‘harvesting’ my compost in the spring. I must tell you that the compostable chip bags do not compost in 18 months and made last years compost unready this spring.
The kids and I are heading off hopefully this weekend for a few blissful weeks of water and central heat and fun city things to do. We will be in internet zone for almost a month, so hopefully I can get back in the swing of blogging.
Mr.T is going to juggle some building work for us and for a neighbour and we will come home when our laundryroom/family closet/bathroom is built. I’ll warn you, it’s gonna be rustic.
We will be back in the Kootenays for November for sure since I am having the following surgeries- Laparoscopy, Bilateral Salpungectomy, Hysterosypy, Ablation and possible removal of endo/hysterectomy. I’m planning on watching the surgeries on You Tube, but haven’t gotten the chance yet. If you’ve been through any of these and are feeling chatty- fill me in. So far, the big question for me is “Is that going to make my belly button hurt?”
Oddly, the Gyno told me that that isn’t what most women ask, they are usually more worried about the scraping down/removal of internal organs. I however am pretty darn excited about missing out on 30 more years of menses!
Coach Rapper is enjoying school. He is in love with his teacher who he describes as “slim and beautiful with long blond hair”. It’s true, she is lovely, and very sweet. I met her today and the adoration is mutual. We are having a few little hiccups along the way as my little man works out the big bad world of social dynamics of the school bus, including a marshmallow gun going off right into his eye with some nasty swelling and our nieghbour and his little friend deciding he is “bored” of sitting with him. He is rolling with the punches though and comes home happy with his day, and lots of questions.
Well, I better be going home right away, it’s almost 11pm!
Still Married after all these years (Happy Anniversary to me and Mr.T) A fall retrospective on off grid living and parenting.
Summer has come and gone and I feel half a sense of relief and half a sense of terror.
Life in Erie Kingdom has been full of one step forward and two steps back. Our gas generator is broken and our gravity fed water has dried up. This means daily chores now take up far more time. I have made the most amazing friend over the summer, I’ll call her Auntie M. She is in her 70’s and my summer included many visits to her screened in porch for a martini while the kids watched Treehouse on her bed. She is truly a kindred spirit. She is also where we get all our water, and gather it in those blue culligan man water bottles.
Other than Auntie M my life has been strikingly void of women these past few months. Quite simply we are too busy for much socializing. I welcome these busy days where time slips by like magic, dusk coming sneakingly quick, boys sleeping like drunks. As I become more aware of the passage of time, and the fact it isn’t slowing down any, I come out of my head more and pay attention to the present moment. These slices of joyous life I want to save with laugh lines not memories and so have been allowing myself to just live. The Trifecta of Terror is perfect, they are all so oblivious- These sweet little warriors, mostly of virtue (except for when they bite you in your thigh or say “Die Anyway!” idle their days away playing with bugs and dirt. I am mostly being reemployed as referee these days.
The mornings are suddenly cold. We can see our breath. I’m counting down the days until the new wood stove is in. Suddenly, the sun comes over the horizon and it is hot. The picnic table is covered in hats, wool socks and sweaters. Bathing suits are found.
Mr. T has been organizing and stacking lumber lately and doing some work things- but we now have pretty darn full lumber racks and our ‘turn around’ no longer is full of the movie set salvaged goods and the all the discount cedar we have. All of this means- the propane truck could make it up, drop off and fill up a 1000lb tank. I honestly can’t even imagine what it would be like to have electricity at this point. We have enough electricity to grind coffee and that’s about it. The kids don’t care though, which is interesting. They don’t ask much for screen time (anymore- haha), don’t complain about the cold mornings (we have a campfire most mornings these days) and even the Evil Wizard (3) can spot Vega.
Public School starts for Coach Rapper on Tuesday. I have mixed feelings about this, especially since he will be taking the school bus. However- I don’t want to take all 3 kids to the Laundomat- so to public school he goes. Luckily Coach Rapper is deliriously happy about the whole set up and is rather excited to sit next to the older boy who taught him the word “sucker” last week.
I am terrified of the cold. And the dark. So I am not really sure of what is to come over the next few weeks. The kids and I have a visit planned to visit my folks for several weeks while Mr. T builds me a bathroom/laundry room/family closet.
I’m riding it out waiting for several different appt’s to see if we can get my migraines figured out. They are very much hormonal and this last month I had 17 migraine days. If all goes well we will be heading out in late September, if appt’s get in the way- well who knows.
#2 just pissed his pants, and we are at the park, and it’s getting dark. Apologies for not rereading this or editing at all! eek!
Lastly- I love you Mr. T. Happy Anniversary.