my journey into radical self-love

Didn't realize it had been so long since I've written here. This illness has kicked my ass.

I read a forum for aspies, giving and requesting advice for relationships - one to another and NTs with aspies. It was quite inspiring. (and yes, that name for them was in the name of the forum) I feel like I learned a lot. Stuff I already knew, but now I know it with a different label, and a different way to relate to the knowledge.


Today, which sucked, and in which I chose myself first (over and over):

So I went back to work for the first full day in almost three full weeks. I'm glad I chose Friday before holiday. It was pretty quiet and everyone was as mellow as they get. Next Tuesday, I anticipate much suckage. But today was pretty tolerable. I remembered to feed myself at lunch. I remembered to pee. I remembered to take myself across the street for a snack before they closed and because I just needed to get out for a minute.

I have someone at work who had a baby, even though she had not known she was pregnant. Quite a shock; and after I got over all my empathy and shock for her, I got very sad, because i realized I'm out a staff person! I went to see them tonight (baby is not yet home) and it was lovely to see them. When I left, I realized I felt distressed and unsettled, so I thought about what I could do to comfort myself.

When I got home, I called my parents. It was helpful just to be able to talk about it out loud. Also, (because my life wasn't fun enough with all this illness) my step mom had a biopsy this morning. So I got to talk that through as well. She was surprised, she hadn't thought it would hurt quite as much as it did. Probably no results for a week.

But it gets weirder.
CBF calls and he's plastered. And hungry. (and without a vehicle) So he asks if he can come over for food. So I say sure. I heat up leftovers for him. He has two bites, and goes to heave all over the bathroom. Yay. Nothing says I love you after a break like heaving all over your bathroom. right?

So he sits back down, and keeps eating. Then starts talking about having a heart attack. Then he asks if I'm going to let him crash in my bed. Riiiight. 'Nope'
And he leaves.
Not really surprised, am I. Not even disappointed. Just wish it was different. Wish we didn't have to go through it.
ETA: I also shared with a good friend on fb, so I knew someone knew what I was up to. And because sharing helps.

FBF has told me he's afraid of the day when I call and say something's happened to CBF. Because it will be me who has to call everyone. OTOH, it may never happen.

I'm really happy I'm waking up alone tomorrow.
 
I'm not very regular at this blog thing. :D

[follow up to the last post, CBF just last week told me a story about telling his boss 'who I am' - and used every possible name except 'ex-gf'. I think he's clear on the concept, I do; but because we're still friends, he, and, sadly, his mom, are a wee bit confused on the concept of not-the-girlfriend-anymore.]

Okay, I feel the need to confess. Declare, maybe more likely. I did confess to TGIG, and that just made me want to say it more. Wondering if there's anyone here who might understand this.

Went to see Carmen (it's my third time to see this performance from The Met, and my fourth Carmen (saw it at La Scala last week)). Elena Garanca is the diva who did what I hadn't considered could be done to me. I'm not given to star worship, or even generally, crushes. But this Carmen, I want to BE her, I want to TAKE her, and I want to be TAKEN by her. I have often experienced one of these three feelings for real people I know, or actors, or characters. But I can't recall ever experiencing all three for one person.

I am so not butch. I have moments I'm inspired to butch-ish acts. But I'm just not. Spent a fair amount of time in therapy working that out (stupid people have spent a lot of time telling me I'm butch, or too butch, because they don't know what to do with a woman who knows, speaks, and follows her own mind). But every now and then, there are women (and I've had few moments with some men), who just make me want to grab them by the hair and throw them down and make them quiver. This Carmen is one.

But I think mostly I want to be her. Not the getting murdered part, obviously. :) But her sheer delight at snatching life out of very thin air. Her defiance of others' wills for her. Her acceptance of fate, while still living her life. And holy crap, she's gorgeous.
 
Hallooo everybunny!

Well, it's been WAY too long. So much has happened. Finally got a new boss at work (about just after I wrote that last post). I applied for the job I'd been 'acting' in for over a year, and someone else was hired. He actually was a great choice, I just think they handled everything so badly. So, because he turned out to be so fabulous, I decided I could step back and stop being a supervisor. [I actually got a raise as I stepped down, so that was sort of awesome. Barfy to realize I had been supervising several people who made significantly more money than I did.]

Last Thanksgiving, both CBF and FBF were at my apartment for your traditional roast beeste dinner. ;) This year, they were here and did a turkey. FBF is very worried about CBF. CBF's mom died early in 2014. I was so sad, she was such a good friend to me. Someone said at her service that she made every one feel like they were her favorite. A while ago, CBF also lost his job. He's kind of a wreck. FBF was really pissed because CBF did something rude and stupid; and now he's trying to figure how to convince CBF to save himself.

2013 Christmas was with FBF, and The Hogfather found us and left prezzies in our shoes! It was so sweet. Until I woke up with a ridiculous fever on Christmas day. Was deathly ill again for weeks. Went to ER, on doc's advice, wasn't seen after 6 hours, so came home. And had norovirus on top of whatever I had. Seriously considered death a better option. Made a new rule: No ER unless I'm unconscious or bleeding and have to go in ambulance.

Sadly, I've been there twice more this year. May 2nd, I went after having a specific pain in my gut for two days (after ignoring medical advice to go on the first day). Unlike not being able to breathe, apparently gut pain gets you right into a bed. My doc looked like Stiffler from American Pie. They gave me lovely drugs. CT scan showed I had stones in my appendix. IKR? Ridiculous! They recommended I get them out.

Two weeks later, I fell down with all my weight on the right knee. Every medical professional to whom I have shown the picture, takes a sharp breath and flinches. People, it was leopard-spotted (only red and purple and green and blech). Got the appendix out 6/30 and thoroughly enjoyed not being at work.

In October I had a six month follow up for a thing they might or might not have seen on mammogram the previous April. Then had ultrasound. Then biopsy on 10/24. Two masses - Invasive Ductal Carcinoma. Spent an insane two weeks - it felt like I went to a doc every day (wasn't quite that much, but it was insane). On 11/20/14 I had a bilateral mastectomy. Just today I had my first follow up appointment. [Although I was in ER again last Friday, because the surgical drains were infected. They took them out and gave me super strong antibiotics.]

The margins were clear. Deep margins, not just millimeters, but centimeters. No cancer cells in all the tissues they took, except the masses. There was a third mass, that wasn't invasive (it was in situ). No cancer in the two lymph nodes they took. I'm unhappy about losing the lymph nodes, but two is pretty few. The surgeon said my incisions look amazing. (uh, okay!)

The first thing I did when I left the ultrasound was call my therapist. Then I called FBF. Was able to have a session with therapist the day after biopsy. My sweet primary care doc didn't want to tell me. She went to shake my hand and I was like, pull it in for hug. She's such a tiny thing that me sitting in chair was perfect for a hug. I said, it's just another diagnosis, it doesn't mean anything. It just meant I had to do the next thing, and the next.

I had a moment where I considered reconstruction, but then I saw the video and talked to the plastic surgeon. *shudder* Not for me. I had a nice moment in my first shower when I realized that it must be a wonderful moment for transmen, when they first see their body matches who they are. It wasn't a super moment for me; but it wasn't a horrible moment either.

The word that keeps coming when I think about it is 'free.' My tits were annoying. Now I'm free of them.

FBF has been so lovely. He frequently says the absolute perfect thing. It would likely not be perfect for many other people, but it was for me. On Thanksgiving, he offered to sleep elsewhere, but I really did want him with me. He held my arm like it was a teddy bear (had to sleep on my back and couldn't really move). He was here pre-surg, and left me a t-shirt, and smelling him is very comforting. He left it so I could wear it back to work, and I'm so excited about doing that. The picture is the Knight, and the text is 'It's only a flesh wound' (come back, I'll bite your ankles!)

I'm grateful to have some time to be back here and catch up a little with all y'all. <3
 
Hey, NR - been wondering where you were, but JEESH that's a LOT to go through! wow. Here's to 2015 being less...eventful.

Glad to see you back though.

JaneQ
 
Well, then. Now it's been even longer. My 'been through a lot' did not end there. :p

About the time I was getting diagnosed (it's all a blur), I started having a weird tingling in my face. It felt cool and wet, like I had drooled - but it was dry. It came and went and I couldn't get any of my army of docs interested. One night, not too long after surgery, I was in the grocery store, sneezed, and had a massive burst of the tingling. I waited a minute, it passed, and I went on. The next morning, there was a wrinkle under the left side of my mouth. I know I'm old, but I'm pretty certain that wrinkles don't happen overnight. I had two doc appointments that day and no one was interested - or could even see it. Finally, a nurse got concerned, as I realized my face was getting numb. Long story, blahblahblah, I was sent for a 'head & neck' ultrasound.

They found calcified masses on my thyroid. Then I had to get a biopsy. Papillary carcinoma of the thyroid. First week of March, I had it out. I lost my nut. I talked to everyone and read everything. I cried at the surgeon - and said, 'I know my reaction is way out of proportion to the situation, but come on.' I told everyone it was my third surgery, and I expected the fourth to be free.

My roommate was amazing. I had zero to complain about. She had to get stuck 12 times, by seven people, before they could place her IV. Due to complications, she had to be CONSCIOUS when they intubated her. It took five passes to get it in. They had ordered a special mattress for her - way in advance of surgery, but when she came into the room, it wasn't there. Just stunning. Sweet lady with a sweet husband.

At mastectomy, I told FBF he didn't need to be there - I didn't really want him to see me that way (in hospital). At thyroidectomy, I told him I need to see his face before I went under and when I woke up. Then he had to go and I was fine with that. Everyone wanted to talk to me, and all I wanted to do was sleep and not talk.

Then in May, I finally had the only surgery I wanted - I got the pins removed from my knee. I was amazed to find how much pain relief I got from that. I thought all the pain was because I have no cartilage in there, but the screws were causing a ton of pain. I still need a new knee, but I'm kinda traumatized from all that surgery and not ready to do it again. :p Plus, new knee recovery is something I'm not quite up to yet.

Then my fabulous primary care doc left. My new boss I spoke of in previous update turned out to be a loon, and finally left. I just got a new one Jan 4. LOVE HIM.

CBF got his inheritance and bought a house and is filling it with orphans right and left. I went over there for dinner and boardgames and it was SO MUCH FUN. Deelightful. And when I left, I was full of the feels and kind of sad. That was supposed to be OUR life. That particular situation wouldn't work for me at all; but a houseful of people is what I've always wanted. I need to work on that.

I am pretty involved in my local poly community - we have five (5!) facebook groups! And I try to have a life, so my online time is less (and more broad when I am on).

I just tonight recommended polyamory.com to some locals and thought I'd stop by and check in.

<3
 
oh but wait, there's moar!

In August, I had a mole checked, and the doc called to say the biopsy was 'weird.' Yes, actually said weird. I told him, 'that would be MY biopsy then. Weird is what my body does.' But they had to excise it - freaking 13 stitches! Office procedure, but annoying.

Then in October 2015, my dad passed. I had the privilege of being with him when he left. It was one of the most amazing experiences I've ever had. He was in hospital for a week and a half (I think). They did some surg, but he never fully came back from the anesthesia. He opened his eyes when I came in, but I don't think he was really there. We talked and sang to him.

They took him to hospice and it was a stunningly beautiful facility. Completely surrounded by farmlands, green grass, huge room. The entire thing was created to support the dying and their families.

To witness my step-mom's fierce presence and love for him was life-changing for me. For the last hour, we never took our hands off him, and she kept telling him it was okay, and he could go. When he left, she wept over him - and I realized, in 33 years, I never once saw her cry before. My step-sister and I went back to their house and we spent a day helping her with arrangements, then we spent a whole day looking at old photographs. I got to make a slide show, set to music, for the service. I blubbered through all the words I said at the service.

I wondered what I'd learn about him at the service that I hadn't known before - and damned if I didn't. It was a nickname they had for him that I had never heard.


I've been so busy. and I'm pretty tired. Apparently, I'm not done yet, as I'm still here. :D
 
NR - I can't believe how much you have had to endure over the past few years!

MY big ordeal was that I broke my elbow and had to have surgery to pin the bone back in place (two screws and a wire)... and I thought I was bad-ass because I relocated my own elbow that dislocated in the process (I'm sure YOU understand:rolleyes: - weirdest thing is my left elbow only straightens as far as most peoples' now - feels weird, because the other goes 20 degrees past:rolleyes:). I was in the process of chasing down a cute boy with dread-locks that I was making out with and a crib got in the way...the cover story is that I fell down the stairs. Anyway, all is mended, his new girlfriend is knocked up..and everything ends on a friendly note!:eek:

Anyway - NO more shit is allowed to happen to you. Ever. I demand it!
 
NovemberRain, your post made me cry! Not because of the hardships you've endured, but because of the joy that still radiates from you.

When I joined this forum in 2010, I was deep in my own grief and searching for a way forward. There were a handful of people on this forum whose story/ blog/ life resonated with me at the time, and gave me hope that I could find a future me hope that I could find a future for myself. You were one of those people.

I am glad to see that your own life is still joyful to you, in spite of everything you've been through and will go through. Thank you for checking in.

If I may ask, what were the results of your mole biopsy? Please tell me you've only been diagnosed with 2 separate cancers, not 3 :(

Best wishes.
 
I was so happy to see a blog update from you but then read with growing astonishment about all the hardship you had to endure the past years... But like MeeraReed said, THEN I was astonished about the way you write about it, with such strength and positivity.

When I first joined this forum, your blog was one of the ones I really enjoyed to read. I hope the bad times are over for you and I wish you all the best, love and health and happiness!
 
Dear NR - I'm so sad to read about all that you've been through. Pleased that you seem to have found ways to deal with it while keeping your love of life. You truly are an inspiration.

I'm another who enjoyed your blog way back when I first joined the forum and was trying to figure out if poly could have a place in my life.

IP
 
I'm so touched by your replies, thank you.

When I was a kid, in my dysfunctional family of origin, I was the 'lost child.' I was actually all of them, because I was an only child - but lost child was my deep comfort zone. And I frequently forget that now.

Until someone 'sees' me. I am tickled that you see me; and honored that you find me positive and wanted to tell me so.

I have really damn good therapy. I have worked hard in my life to overcome my childhood. I didn't start out with the intent to be joyous and positive, I just wanted to stop the pain. And an awesome byproduct of working that hard is that am pretty joyous and positive.

I'm quite surrounded by sourpusses. They seem happy that I didn't die of cancer, but no one wants to go out and play, y'know?

Sometimes people tell me they're amazed that I get up and face life daily. The alternative is laying down to die; and I'm not ready for that. [though honestly, since my dad went, I think about it. I know he was a little jealous that my mom went first; and I guess I'm a little - only a very little - jealous that it's not yet my turn. just when I'm extra tired.] I try to focus on all the amazing things about this world.

Even my stupid job. It's an awesome distraction from the pain.

but I digress. I came to say thank you - your words have encouraged me tonight. <3

<3
 
oh, and MeeraReed, the mole was nothing. Thirteen freakin' stitches for NOTHING. It was just under the top of my bikini line, so it took forever to heal. It's actually still purple which I think is not good, but no one seems to think a thing about it. I had gone in to Dermatology because I found a black spot on my shoulder. They don't know what that is, either. They said sometimes blood vessels do that. They pressed on it with clear glass slide - to see if it would change. If it was a vein or blood vessel it should have disappeared when they pressed on it. It only changed a little, it didn't disappear. I love that everything I is not-normal. Anyway, it's not getting bigger so everyone, including me, decided to stop worrying about it.
 
It's actually still purple which I think is not good, but no one seems to think a thing about it.

We don't necessarily scar like other people because our collagen acts differently. For me, what I have noticed is that my scars tend to stay purple for a good while but never get lumpy or attached to other tissues. After I am fully healed (a year or so) my scars are soft, white and get increasingly harder and harder to see.

JaneQ
 
NR, it sounds like your scar has become a keloid. I had a mole removed from my arm (it was right in the center of my bicep, large and raised) because it started changing colors and I'd always hated it. The scar became a keloid that wound up being twice the size of the original mole. Ugh. They didn't find anything wrong with that mole, thank goodness. My other moles that were removed didn't scar that way, so I don't know why this one did, but I do remember that the Band-Aid came off accidentally while it was healing.

A keloid is a scar that has more collagen in it than other scars, and tends to happen more often to people with African ancestry (as I have). A keloid is benign.
 
We don't necessarily scar like other people because our collagen acts differently. For me, what I have noticed is that my scars tend to stay purple for a good while but never get lumpy or attached to other tissues. After I am fully healed (a year or so) my scars are soft, white and get increasingly harder and harder to see.

JaneQ

Wait, you are one of us? Did I miss this? :) How did I miss this?

The mole in question was under my panty line. Around the same latitude as my hysterectomy scar, but further to the right side. So, a challenging area to heal. It's not raised or lumpy at all. Just darker than most of my scars. The appendectomy scar - he went in the hysterectomy scar - which was kind of stupid considering my Ehlers Danlos. It spit the dissolvable stitches.

In my mastectomy scars, though...When they do a biopsy, they put a little clip in - so they can locate the tumor on future scans or whatevers. Poor resident missed. I could tell they were all trying really hard to not freak me out, but trying to fix it. I sort of assumed they had removed the one that missed. I was really pleased with myself for pre-medicating. Also, they have the most adorable teeny tiny soft ice packs, so you can tuck 'em in your bra.

A few days later, I notice what I think is a flap of skin at the wound. I don't pick at it because I'm on my way to work. The next day, however, it's bigger, and I tug. Out pops the damn clip! I took a picture of it - next to a ruler. It looks like a damn fish hook. I called them - because I didn't think this was supposed to happen. The poor phone answering person. i had to repeat my story like five times. Then she was repeating while the doc listened. He finally got on the phone and made me tell it again. Again, they were trying to be nonchalant, but I could tell, they were surprised. He tried to assure me it was all fine. I showed the picture to everyone who could consent to look at it.

So after all that - there should have been two clips left in there (they put in three, I pulled one out). Apparently, THERE IS STILL ONE IN ME. Really? RLY, people? You scraped out all my breast tissue, but managed to leave a clip? And NO ONE was going to tell me, but I read my test results and they published my xray report (had a chest xray for what I can't recall) and it mentioned the clip.

So, on one scar, I have about an inch of raised scar, right in the middle. My theory has been it was the clip, but as I write this, I'm thinking maybe the tumors were on the other side. [there were actually 3, they found the third with MRI (breast MRI is super annoying, btw)(you lie face down, on top of a frame, and they hang through - it's super weird.)]

Anyway, my thyroid scar and most of my mastectomy scars are really beautiful, as scars go. Even my knee - where they also used the same scar as the original 20-year-old scar - is pretty good. I think it's kinda wide and kinda thin, but proper.

Okay, more there than I intended. :)
 
In other news, I'm going to be needing to do a bunch of radical self-love.

I think he's actually moving in with me. eeep! :eek: He's threatened to more than once over the years. He mutters about going broke and ending up sleeping on my couch. I told my friend I think he said it to scare himself and then pulled a miracle so he wouldn't have to. Then I told him that. (this is FBF I'm talking about)

But last weekend, he said 'I think I'm really going to like living with you.' and my heart soared. for 5 seconds. Then I was terrified.

Then he said 'I could really use some stability in my life.' and I wanted to punch him. That is going to require more conversation. I'm not stable, I'm broken. Were I healthy, my life would look really different. This morning, I woke up and my knee didn't work. Well, it works, but it's stupid painful - and it's not good to make it work when it's twisted. I can't untwist, and usually I can. Waking up in a country where I don't speak the language - that just doesn't seem like the best idea when my body is this unreliable.

So, it probably doesn't matter, the why, when the result is I've lived in the same apartment complex for at least 8 years, and I've worked for the same 'company' (gubmint) for the entire time he's known me - I can see how that looks like stability.

But that he thinks it will translate to him? That troubles me.

I've considered making lists.
These Are The Things About Me That Have Driven Former Roommates Batty.
There Are The Things About You That I Know Already, That May Drive Me Batty.

As I've mentioned, he is not the most communicative person. (I know. I know.) I'm fairly certain he's neurodiverse, and that's a contributing factor.

I need to re-arrange a LOT of furniture to make room for him. And I'm not sure I'll have the strength. If not him, I still need to do this. I should take a roommate anyway.

I really want to not view this as relationship escalation. But I know there's a sneaky little part of me that's trying to hope it's so. A lot of me is saying that because I hallucinate that will make it easier when he moves out. I guess I don't want to damage the relationship further by living together. I want to know him always, even if we stop being lovers.

I'm also afraid it will be really difficult for me to be so nearby during the time he needs for aloneness. His need for alone time is massive.

It's been helpful to noodle this out in this post. Advice is welcomed. (It didn't seem to fit in any of the 'topic' forums)
 
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