Another day, another test.

Tomorrow morning we are back to London for the 3 month checkup! Fingers crossed that W is still in remission and that the CAR-T therapy is still working.

Physically he looks great! He has more energy than he has had since last November, he is able to eat again and it seems he has stopped losing weight! All good signs! He has some of his strength back and I have been urging him to do some exercises to build and keep his strength up so that when we do go through with the stem cell transplant he will be able to tolerate and bounce back faster.

On the kinky front, Bear and I have been enjoying some intense and much needed reconnection to our way of life. The last week and a half not withstanding! lol Life never fails to step in the way but we are not backing down, my health is usually the culprit followed by W’s doctors appointments and procedures. We certainly can’t do anything about those things but we can work around them! *smiles*

Our dive into M/s has had us trying out some kinky ideas that I never would have thought we’d be interested in. Never say never I suppose. Then again, if you look at the list of ‘yeses’ and ‘hard limits’ when we started out and the list now, you’d see some stuff has simply switched columns!

We’ve (or should I say, I’ve) gotten smart about our kink and the simple fact that we make it our own! I know, I know it’s something we hear and say all the time but just like most things in life – the idea is simple, the application for some reason seems so much more difficult!

It’s opened up a bunch of new kinks that we are/and have been trying and has made our kinky travels that much more enjoyable. I think Bear has also finally found some acceptance and peace in the life that we have chosen. I think he has finally just let himself be …. that, plus my new take on communication, too!

Basically – radical honesty! Thought we were doing that before, found we could actually do more! Always learning, always trying, always talking ….

That’s what we’ve learned and that’s what’s been making even this current life situation manageable!

Till we meet again …. ❤

Just a few updates!

As I mentioned before, we’ve been home since the 1st of July, goodness it’s nice to be home!! W and I have spent probably the last 4 1/2 out of almost 8 months in hospitals. Him in a bed of course and me mostly sleeping in chairs! The stay at Sick Kids did afford me the use of a bed/couch area in his room which was such a blessing! I don’t think my back and neck could have taken too much more! lol

The first week was pretty basic, just some low dose chemo to prepare but the second and third week were hellish! I do not wish that on anyone, to watch my child go through it was surreal and scary as f*ck! I knw I don’t normally swear but ….. I just can’t even begin to explain the feelings.

He lost the ability to use words properly, what he wanted to say and what was coming out was all jumbled for a few days. He couldn’t see much, his face was swollen and his eyes bulging out and hurt like hell. He couldn’t even walk well or do the simplest of tasks without getting confused and turned around.

Trying to get him to the washroom was something else! Let me tell you. He is bigger than me, taller and heavier and he could figure out how to sit or place himself properly etc. I’ll spare you the rest of the details but I’ll say that was the most afraid I have ever been in my entire life.

I don’t scare easily, I don’t tend to lead with emotions. I’m pragmatic and no nonsense, I get to the heart of the issue and take care of business. With a clear head and a plan, everything works out as it should ….. not this time!

Thank god for the nurse who was with us those few days, she even came in on her day off for an extra shift just to be on W’s care. I think I may have very well lost it if not for her. Bear was not with me as he was travelling back to work Mon to Fri and then with us on the weekends. While there he also stayed in the apartment while I was in the room with W over night.

The worst night I did get close to calling him in, it was a weekend and he was there …. I doubt anyone would have stopped him at the door. They are quite understanding there, I just can’t say enough for those folks working everyday to help kids and parents through this. Anyway, i got about 45 mins sleep that night and was very glad to see him (Bear) in the morning!

The first weeks were hard but the next few weren’t as bad. We were still stuck in TO but at least W and I were back at the apartment by then. trips back and forth to the hospital a few times each week but it was a 10 min walk away and we had a wheelchair for W, so it worked!

By the first we got the all clear once more, the bone marrow and spinal fluid were all clear of cancer and the CAR-T cells are doing their magic destroying all leukemia cells.

We are back to our regular oncologist now and the following Tuesday when we went for a check up he informed us that the next step should really be a stem cell transplant to make sure the marrow starts producing ‘good’ cells not cancer cells going forward. Basically, it our best way to try to ensure no more relapse!

Say what now … !?!?!? We were not expecting that. We thought it would be checkup and such but as long as the cancer was gone, W could be done with all the big procedures. We all got a bit of a surprise! Nothing finalized yet but we go back on the 5th of August and I imagine we will get more clarity then.

This will mean another trip to TO and hopefully back to Sick Kids. We know the people, know our way around AND I can stay with W over night no questions asked. His panic attacks are all but gone and he has made huge strides in his anxiety BUT it’s not going to just magically disappear. Any time I was away for more then an hour or so he would text and start asking when I’d be back. I’m going to go out on a limb here and assume he is still not ready to be in hospital over night without me. But that’s a problem for another time …

If I understand correctly the stem cell transplant should be done around 3 months after CAR-T in these cases which would see us back to TO likely the beginning or September, since his CAR-T transplant was June 3rd.

In between all this Bear and I have taken any opportunity we can to strengthen out dynamic. I think it’s probably more intense now than it had been in a long time, maybe even ever really. Since we were moving towards a more M/s centered feel before all this began, we have picked up again in that same vein.

I’ll take it while I can, fill up on that energy that keeps me balanced while we are afforded the time and space to do so and let it carry us through the days we focus solely on W and his recovery. It’s a strange dance back and forth some days but we (the 3 of us) are all getting what we need and when.

I can’t say I can ask for more at this time. 🙂

Hope you are all well and happy on this Monday morning!

Rinse and repeat! More hospital stays and drama, ugh.

*long one* be forewarned.

So we’re here again! Two weeks after the last admittance and we are once again back, in the same room even! lol Almost think we should have just moved in ….

Some back story to the last few weeks:

W was admitted 2 1/2 weeks ago on a Tuesday to our usual hospital for cancer treatment because his numbers/bloodwork was just horrible. He needed chemo and other products to get him back to stable and ready for Sick Kids in a few weeks for the CAR-T therapy. We did that, then went home the following Sunday afternoon.

Our doctor here had requested our family doctor back home take charge of the case and have blood work and transfusions done in our local hospital until it was time for Sick Kids. I was hesitant but it did offer much less travel and much more time at home for W and for us. He’s having a hard enough time physically so anything to ease the wait time was going to be great, right!??! lol

Yeah, no!

First off the Oncologist’s requests (and mine of course) for call back and set up of times and dates was never answered. I got a call from here telling me the appointments were being cancelled as they were to be handled in my home town. I said, no please don’t, keep the dates on schedule and I’ll call you back once we get booked here because frankly I’m afraid they won’t come through. Guess what, they didn’t!

Unfortunately, me thinking all was set and settled was silly enough to get in the shower. The phone rings, W takes the call and agrees to cancel the appointments since he is told that they are to be done at home. *PANIC TIME* I call back trying to get them reset and explain that I have yet to hear anything from my family doctor and he needs his transfusions on time. I’m afraid they will get missed …. so now nurses and practitioners are scrambling trying to get him set up again because those other times have now been filled for others. UGH!

This is now Tuesday afternoon, still no call back from our home doc …. I’ve left messages, the oncologists here left messages the Friday afternoon before! The practitioner working with our oncologist has phoned and left messages many times as well. *crickets*

Fortunately they do squeeze him back onto the schedule – that’s the Wednesday they realize how low his numbers are and he’s there all day with dad getting things stabilized again. In the meantime Dr. D’s clinic (oncologist) works with me to set up at least one more week of appointments in hopes of setting things straight here in our town by then.

FINALLY!! The damn family doctor calls back. It’s now been over a week since the specialists reached out, Apparently cancer and no immunity plus requiring stabilization for a major procedure in one of the best hospitals anywhere is just NOT ENOUGH to get his attention and response. With all those letters and names not getting responses, what chance do I have???

Explains why my chronic rare condition gets no help either, humm. But that’s for another day.

Anyway, finally we get a response, keeping myself patient and respectful, I take the calls, get the info and set appointments. Cancel with the regular oncologist and move forward. Monday we go for bloodwork, depending on results we will be back Tuesday for transfusions. Pretty much expected at this point, no biggie.

Monday we go in for 8 am. Monday by 10 am I get a call that the transfusion can’t wait, come in this afternoon, there is a 6 hour wait to get the blood products he needs but they are on the way. Okay, no problem we can do that … but wait, W has started with a nose bleed and heavy bruising again, that plus his blood counts … 4 calls later and much back and forth with the oncologist – my family doctor says we need to bring him in now. He must be isolated and we must stop the bleeding! YIKES, more panic, off we go.

To emergency he says, I’ll tell them the issue, go now! When we get there it’s packed, of course. All sorts with germs everywhere! I explain to the nurse, i explain to reception …. take a number! Umm, he needs to be isolated, she checks with the person behind the glass, take a number, I guess you can wait in the door way …. :O What Now???? Come again?

He has cancer, he has literally no white blood cells after chemo so no immunity, and no platelets so he won’t stop bleeding ….. plus the doctor told me to come here asap, that he would tell them he need to be isolated! … take a number….. *fumes*

50 minutes later, after moving him about in a wheel chair inside and outside trying to stay away from all the coughing and sneezing and germs, they finally call him in. His nose has been bleeding heavily this whole time. Lots more stupidity like this later they get him a bed in the ER.

No precautions really but at least there is a curtain, sort of closed up around us. W unfortunately over hears one talking to another saying that he’s just here with his mom, she babies him ….

Finally the family doctor shows up, all of a sudden he’s in full protective gear, triple masked, triple gloved etc and still keeps his distance because he doesn’t want to make W sick. I’m guessing our oncologist read him the riot act over the length of wait for his original call back so he finally gets the urgency. Some of the nurses though aren’t quite up to speed I don’t think. Pretty sure it was after that when W heard the comment

Big surprise, after hours in this mess W spikes a fever! I finally got his nose to stop bleeding but they didn’t let us leave despite my saying he would be better at home to wait for the needed products, safer. And now this …. shit hits the fan, I guess they finally realize I wasn’t the one in the wrong.

Two, yes two units of blood have been lost from mornings lab work to now. That is how much his nose was bleeding. Damn fools. The ER doctor didn’t quite believe it, many tests are ordered to try to figure out where else he may be bleeding from. Nothing, maybe she does believe now, anyway.

We go from the ER to the ICU, await blood from all over hells half acre … hours later, 4 more units of blood he needs to get stable! YUP totally babying him, yup totally fine to stay in the waiting area for close to an hour. For F*CK sakes!

The following day we are told he is getting transferred back to the usual hospital, they are better able to treat him and ‘home’ doesn’t have the knowledge or resources. The first part I could have attested too earlier! So here we are again.

Been here since Tuesday, we decided to drive him here ourselves and get released from one hospital without waiting for transport. We would have just been stuck in the ICU with all the other sick people until likely midnight or longer. Not a waste of time we wanted, or risk for that matter. We wnet home, grabbed a few things and were admitted here by 6:30, we had left the other at 4:45, not bad turn around if I do say so myself. The trip itself is almost 1 1/2 hours.

It’s Thursday now, we should hopefully be on the way back home Friday afternoon. You’ll never guess what, they want follow ups done here, not in our home town ….. 😛

At least here he is safe! Got word tentatively that we will be going to Sick Kids next week anyway. Scary and exciting at the same time. The procedure is dangerous and the first 2 weeks after will likely look very scary I’m told but that should then change for the better and the rest of the stay for follow ups there will be as outpatient, set up in our own private little apartment close to the hospital.

*exhale* long post I know, lots of stuff not even covered but here are the highlights.

Till next time … be well! ❤

Of lessons learned.

Since I’m sitting here on my own again, sleeping ‘alone’ again and waiting til the next doctor comes calling or the next time W needs something, I find my mind wandering.

Despite all the twists and turns of our current journey we have still tried to keep up with some of the comforting things we use in our kinky lives. My health issues will often complicate that too … oh joy! Regardless, we often try to revisit things of the past and try to implement them once more, sometimes tweaked and sometimes just try again.

A collar at bed time is one of those things. Bear has a leather collar he likes to use for bedtime and my bunny chain 24/7. My condition will often make it so that I can not regulate my body temperature and I find that even something as small as a collar will cause me to overheat. Last summer it had to come off because I was spending too many hours as a furnace and not sleeping. To be honest I overheat so much that even Bear was being kept awake! Humm,maybe that was 2 summers ago! Yikes!

Anyway, recently after having returned home from the hospital stay Bear decided to start using the collar again, for as long as we could this time. It’s not yet summer weather here so it was a good time to try. That and our minds could really use something calming to focus on at bed time.

We used it for a short while with no real issues but one night I seemed to be having a hard time breathing. Something was making me cough and it felt like my breathing was being restricted. Guess what? It was!

Bear decided that it was time to remove the collar and figure out the details in the morning after a good night sleep, his hope was that it was the collar and not some other issue causing me to choke and gasp for air. I didn’t like it but in the middle of the night, in the dark as he tried to remove the collar it seemed to somehow be stuck. I mentioned I could try since I could feel the where and what and be sure not to make it worse. He agreed and I soon figured out that the rabbit choker had somehow wrapped up and around the leather buckle and end flap … it was twisting in such a way that it was literally strangling me!

Now that was a first!! We’ve had an issue in the past with just a linked chain and that quickly became a no-no for bed or any other unsupervised wear but never with this! Anyway, it was removed and the next day bedtime came and went without much fuss. The rabbit is always on, that is the main ‘collar’ of choice for Bear, that and my cuffs that never leave my body.

I was a bit confused and a bit unsettled I guess you could say, that he hadn’t chosen to try again or try something else. We do have a few options for collars that we have played with along the years. I had hoped he would pick one, but he hadn’t.

The next night came and it was the same scenario. And the next … I half thought about saying something, questioning him BUT I didn’t. Not because he doesn’t like it, he’s never once not answered all my questions and concerns, but because something in me told me I didn’t need to. I shouldn’t really because I figured he would do whatever he felt was best and tell me in his own time.

A few days later when once again getting ready for bed, he undressed me as he always does but before tucking me into bed he brought out a brand new collar he had found. It is black and rounded. A very small profile compared to the others with no hooks or D rings to snag a sleeping rabbit! *smiles*

I am rather proud of myself for not pressing and pushing before he was ready to handle the situation. With all the other stressors in our lives right now it would have been easy to fall into that mindset of pushing and pressing the issues that I want dealt with instead of letting him lead the way.

I’m much happier in this case than I would have been if I pressed him on it anyway. Now, if I can just get back home to wait for him to place it on me again …. *smiles*

Detrimental?

Has my D/s dynamic been detrimental to myself and my mental fortitude?

I was never in ‘need’ of anything or anyone before, but these days I find that I feel an absence if he’s not there. If he’s not aware, if he just doesn’t get it ….

I’m an adult, I know that sometimes things go sideways, sometimes things need doing or sometimes people need time. I get that. But I never needed anything, outside of myself, ever!

Now that I’m dealing with Leukemia, relapse AND and stressed out Bear ….. not to mention mental health issues for W, and trying to find the right words to say so that they will just listen and not question when I say he requires a support person etc etc .

I find my down fall to be that I expect a certain response or at least concern from a certain Bear – and he does the opposite.

I get it, I do, it’s stressful for him too, of course!! But without D/s I wouldn’t have had this need.

Yes this is a BDSM D/s site, but I want to tell the truth of what it takes to be a submissive. For some of us it’s like we’ve given away our super powers. Is it worth it?

Lost

I’ve noticed lately that I’ve been feeling a bit lost in my day to day. I mean I feel like I’m wandering through the day instead of living with purpose.

Obviously I have a purpose when it comes to my son and all the appointments, medications, physical and mental health needs etc. I feel rather more of a nurse lately than anything else. Well a mom of course, that never goes away …. I’ve also just started working again – babysitting basically for before and after school kids here in my neighbourhood. That is a nice change from the last 5 months but I’m not sure how long before I need to take a break again.

We had a video conference with W’s doctor on Tuesday and it seems that nothing we have tried so far has been able to clear the cancer from his brain/spinal fluid so we need to try something new! I’m relieved that there are options, or at least we think so, he’s gotten a referral but we haven’t heard back as to whether or not he has been accepted. However, this option would have us once again in hospital for an extended period of time.

I’m not sure if it’s an inpatient treatment or outpatient but this hospital is in our province’s capital and over 4 hrs away! As such I find myself preparing for the mental focus and strength to be away from home again, possibly have to advocate for the right to stay by his side so that he doesn’t have panic attacks and refuses treatment and to be on our own this time because there is no way Bear can travel back and forth 9hrs per day! It just wouldn’t make sense. We might be able to get him accommodations but we might not.

As a ‘planner’ it really makes me unsettled to have so many questions and no way of receiving answers.

As a submissive it makes me ‘lost’ to have no real set of kinky rules or rituals to adhere to. No set list of chores to be of service. No real intentional dynamic to concentrate on. We keep trying but every effort is interrupted by bad news and new directions, medically speaking. My own physical health has also been an issue ……

Now, I’m not complaining about having to support my child, I think anyone in the community would know that that’s not an issue, it’s just the gap that it leaves behind in my D/s life is felt! We had moved in the direction of a Master/slave dynamic as well which for us was more intentional and powerful (!?!?) feeling, Not sure how to describe it but to say that it’s more intense for more hours of every day. We haven’t moved away from Bear and bunny or any other aspect of our dynamic we simply added on to it. I’ll have a whole other post on that if I want to explain it properly! lol

I’ll leave you with my inspiration for making the move in this direction:

It’s true that I have very rarely ever been punished for anything and I think this quote fits my way of being very accurately. I don’t do things worth being punished for because my intention with Him is always to please.

Anyhow, I hope you are all having a great day and I hope to be back soon with news. For now we wait to hear about the referral and try to piece together any fragments of our kinky lives that ‘life’ hasn’t put on hold!

Even when we’re low-key

My life might not be all kink and BDSM right now but it is still ‘us’. Coming back here and reconnecting with old friends, and some new, has reminded me of that.

What I like about having a Bear around is that I have the privilege of saying ‘i can’t right now. i need you to do it …’.

I have never in my life depended on, or trusted, anyone else with my needs, my wants, my anything. Once we added D/s to our lives that truly changed for me. I had already picked him, obviously because we had been married 15 years by that time. Life and stress had started taking its toll and we needed a change, we needed to reconnect. D/s did that.

So … we might not be all whips and chains right now but we are ‘WE’. And I still have someone I can go to when I – JUST – CAN’T – right now.

Tomorrow is a busy day, back to the hospital for treatment for W and standing by him in support for me. It’s the first time we are doing this as out patient and I’m not looking forward to trying to find my way around! LoL I’m pretty good at getting ‘turned around’ and not so great at find the right hall to go down or the right door to enter. That’s normally a ‘Bear problem’ but covid means only one of us can accompany W. Directions are not my forte, but being his mental health support system is.

Wish me luck! *smirk* Happy Thursday, friends. ❤

Hello

Hi folks, sorry I’ve been away again. Kink has been on the backburner for a little while, more or less, so I haven’t had much to think on or write about.

My hEDS has been in a flare up for a while and it seems that I also suffer from MCAS – yay me! Basically I have been crazy sore, gaining bruises and swelling left and right and now having allergic reactions to EVERYTHING, including new and interesting kinks that we had decided to try and now I can’t have anything on my body or skin.

Pain play and impact play/BDSM are still hard to come by due to first privacy and secondly, my illness. I should see a doctor but mine seemingly knows nothing about this condition, at least not the last time I spoke to him over a year ago! *fumes* But that’s for another blog site ….

One month ago we also lost our German Shepherd, that was hard of course.

So I’m still here, we’re still here. Still trying to get on with life as are all of you too I’m sure. Crossing my fingers that this flare will end, or at least settle down enough that we can get some sort of energy to play! I’m trying not to focus on what has been missing and focusing instead on what (hopefully) lies ahead.

I haven’t really had any sexual appetite lately, I bet you can guess why that might be! LoL Not entirely sure what to do about that. *shrug*

Happy Friday my friends! Stay safe, stay kinky if you can too!

In need of a w[h]ine night!

It doesn’t happen often but I do sometimes miss the action and comradery of having a group of like minded people to talk to. In real time ….

I find it helps to keep motivated when it comes to kink and to my submissive journey. This solitary kinky existence leaves us both lacking in motivation and frankly, flat!

Photo by cottonbro on Pexels.com

Not really sure what to do about that. All past attempts at real time chat, and even pen pals, have fizzled out. My personal energies towards kink have also practically fizzled out. I tend to be the one with the imagination and spark to get things started and when I don’t, it doesn’t ….

Gets to be pretty tiresome I admit. It’s a personality thing with him I know but it would be nice if I wasn’t always the one who needed to add fuel to the proverbial fire.

That is all. 🙂

What a strange summer … and submissive mindfulness.

This summer break has been a really odd one for me. I think things have been odd for many people with the pandemic and all the changes that it has brought! But, that’s not what I’m talking about.

For me, this was to be a ‘back to normal’ summer. Normal in terms of time and holidays and having time to myself! Last summer I ended up having to work because the littles I take care of during the school year had no where to go if their parents were ‘essential’. Sure there were spaces for childcare made by the government but they were few and none here in our town!! :O So instead of taking my summer off I worked.

It was hell on my body and that didn’t help my submission either. By the time the day was done and everyday chores were done so was I! *chuckle* This year I took the summer for myself again.

It’s been a month and a half now and it feels like I haven’t started my holiday yet! Mentally and physically I just don’t feel ‘right’. I don’t feel rested, my body is still struggling to get back to my normal, I’m still not ‘well’. Even with all the distancing and the ‘hibernating’ in the house I still seem to catch a ‘bug’ more often than not. It’s not covid but it still hits me hard due to the hEDS I suppose. My immune system is just not up to the job!! I keep hoping that if I can finally get some rest and back to a regular exercise program I can get my health back ….. but I really don’t know if that will come true.

For now I’m trying to not get down mentally and to enjoy what few minutes I do get but I may be starting to lose that battle. The closer it gets to September and school once more the less I feel like I’m going to have my ‘summer break’ at all. It hasn’t helped our kinky dynamic either. We make plans and have rituals set up and then they need to be changed or stopped due to ‘life’ and illness.

I like to have rules and rituals set up, it helps me to get my mindset right where I like it. It seems to make things feel more real, more intense. When those are more suggestions than rules it gets harder for me to stay focused. It’s not impossible but it certainly is more work mentally!!

I keep going back to mindful submission when I notice that it’s more of a daydream than a settled feeling. I find that the key to my submission is allowing those thoughts and feelings to flow freely inside of me. I try to tap into that well of knowledge that I have gained over the years and I let those thoughts and feelings out.

When I adjust my outlook my perception of the things he does also changes. Domination and leadership doesn’t need to be harsh or loud, it can be understated and subtle. When I pay attention I notice his dominance coming through more, that feeds my submission and so it comes through to him, Then he again notices too … and the cycle continues.

I think that when my submissive thoughts and feelings are flowing freely his dominance is fed and so it too flows more strongly. The reverse is true for me as well. When we are in the heights of our dynamic it happens without notice. When things are a bit quieter for whatever the reason, it takes some effort to tap into but it’s still there.

Submission is a choice, it’s up to me to chose to let it flow. To continue the cycle …