Self Care; Selfish or Essential

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Self care is important.

I think its important for anyone and everyone. 

We live in such a busy society that we often put our jobs, partners, kids, pets and friendships before ourselves. 

Each new years eve I always made the resolution going forward to say no more often.

To say no to events, to say no to outings, to spend more time doing the things that I wanted to do or to do the things that fuelled my soul and filled my cup, and I never fulfilled the resolution.

It took a long time to get to this place, but I am here.

I think my disease made a lot of it happen for me.
At this point I need to worry mainly about myself!
I am at a point where my health comes before anything else, and when I say anything else mean it.
Before my husband, before my kids, before friendships and before my job.

Because the reality is and I think we understand the thought process behind it but until life stops you to make it a reality, we don’t seem understand it fully.

You can’t pour from an empty cup.

Theres a meme I see often spread through the endo community and it says
“Do you ever feel that your check engine light is on, but you just keep going through life like, ya its all good”

And as much as that is true, its also not okay.
We need to fuel our minds, bodies and spirits.
I think finding my passion, my drive and my purpose has changed a lot for me.
Its awakened something within me that I have never felt before.

But a thought that I have often is, when does self care become selfish.
I know the importance of taking time for yourself, to ground yourself, to refill your cup.
But at what point does it become selfish?
And does it ever become selfish?
Or is all of it selfish?

I think thats where society comes into play, self doubt comes into play, or constantly telling ourselves that we aren’t worthy of the time and care because we should be doing something for someone else because there is always a long to do list to accomplish.

Finding balance in anything is important, balance is key for any aspect of life.
I think self care balance is really hard to level.
Being chronically ill, I am constantly on the self care bandwagon.
But I also push myself daily to accomplish tasks.
Some that need done and others that don’t, but if I don’t do them than I don’t feel like I have accomplished my duties for the day, even though no one has those exceptions of me except for myself. 

I am often in the bath, heading to bed early, going for massages, going to pelvic floor therapy, or working on my social media platform.
Because all of those areas fuel different aspects of myself. They all help to fill my cup in all different ways.
But I am also noticing that since this shift, more is falling on my husband and more is falling on my kids.

And its not a bad thing, its just a change and change is hard. 

Once again no one has these feelings except for myself.
My husband is constantly pushing me to do all of these things and more, as he is always wanting me to be my best, happiest and healthiest self. 

My kids have not complained and I honestly feel like they are enjoying some of the independence it is creating for them. 

Find your passions, find the things that fuel your soul, and embrace them whole heartedly.

Find the time to put yourself first.
Find the time to fill you cup.
Find the time to do what you truly want to do.
And even though it may take some time, do not feel guilty for it.
A car can’t drive without fuel.
You can’t get coffee from an empty pot.
We can’t give our all when we have nothing left to give. 

Another Emotional Disaster

 

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To say this past week has been hard would be an understatement. 

I was an emotional disaster, and that’s putting it lightly.

I was up and down, side to side, I didn’t know which wave of what feeling was coming next, and honestly I didn’t know what to do and I didn’t know how to process it.

I am a very logical person when it comes to pretty much everything.
It takes a lot to ruffle my feathers, cause me anxiety or make me upset.

But this week, this week it didn’t take much at all to feel all those things.

I was upset with my self, I was upset with my outer appearance. I was upset with my disease, I was annoyed with my kids and I was pissed at my husband. 

FOR NO GOOD REASON!!

Don’t get me wrong, husbands and kids know how to push your buttons from time to time and my patience runs thing when I am flaring, so at those points it doesn’t take much to set me off. 

But this week was different. 

I had convinced myself that my husband was having an affair – when really he “worked late” because he was out buying my birthday present! *face palm*

I wanted to retract away from the world. 

I wanted nothing to do with anyone or anything. 

And that is NOT like me!!

I started to look back at things, and then it clicked!!
I had been off of Orilissa for 6 weeks this past Wednesday!

They say for medication it takes about 4-6 weeks to get out of your system, and boy were they right. I am pretty sure I felt the last leg of the surge in hormones. 

It all made sense, but that doesn’t mean it was okay.

The following day when I regained normalcy, it was filled with apologies. 

Apologies to my husband who is more patient, understanding and compassionate than any human I have ever met and I truly don’t deserve. 

Apologies to my kids for being short fused, grumpy and tired, which as bad as it is and it’s sad they had to learn this way, my disease has turned them into compassionate and empathetic kids. They have the biggest hearts and are genuinely concerned for other peoples feelings. 

So we are onto the next chapter of it all,

Dealing with the symptoms daily.

Dealing with full blown hormones.

Dealing with no longer being subdued into menopause.

I am seeing how effective it was to begin with, and I feel like this coming week will be the true test of how beneficial Orilissa was in my journey, or did it actually lose its mojo after 3 months.

Im holding on and warning my family for this rollercoaster.

Friendships

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I assume my illness is at the point where it starts to become an inconvenience for others around me. 

It was brought to my attention the other day that an old friend of mine was upset with me.

She was upset of the fact that our friendship wasn’t what it used to be.

She was upset of the fact that a phone call didn’t get returned. 

She was upset of the fact that we aren’t as close as we used to be. 

Her theory as to why this has happened was “I guess thats what happens as you get older and people just grow apart and I guess its time to put the big girl pants on and deal with the reality of it.”

Sometimes I have the patients and energy to spend dealing with situations like this. 

Sometimes I don’t have the patients and energy to deal with any of it. 

The day we spoke, I did. 

My reply was something along the lines of;

“In all honesty; 

A lot of my friendships have changed. 

I’ve been really sick and I’ve gotten a lot worse over the last 12 months.

I barely have energy to manage my day to day on a good day. 

I get spurts of 2-3 good days and I have to harness those but being chronically sick and it essentially getting to a point of taking over my life, being a mom, being a wife, running my own business 

– it’s a lot. 

I’ve been chemically induced into menopause for the last 9 months too which changes my mental stability as well. 

I’ve lost a lot of friendships, well I wouldn’t say I lost they’ve just subsided. 

At this point I have to look out for myself and help myself as much as I can and for the first time in a long time, start putting myself first.

My close friends and those who support me get it, understand it and aid me in all of it. 

They don’t hold it against me. 

We talk about it when situations arise, but mainly they are understanding and compassionate about it all. 

The last year to year and a half have been really hard.

I am sorry if it’s offended you, made you sad or upset, or even pissed you off at points. 

But I am not the same person I used to be, if you want to support me and continue through our friendship than that’s awesome, if it’s to much of a change for you than I understand that and that’s okay.”

A lot of people wouldn’t be okay with it, a lot of people would be upset with the loss’s that are accompanied with what chronic illness takes from you. 

But there are many more important and pressing issues that illness takes away than friendships. 

Friendships are important and its important to cherish and harness those great friendships. And especially in dealing with things such as chronic illness’s friendships of support and compassion are the ones we need to keep close by our side. 

The hardest part I find that I have with friendships and when situations like this arise, is I wouldn’t have had any idea that this person was upset with me or upset about where we stood if I didn’t push and pry for more answers. 

I noticed a while back that she had stopped following my social media platform, and within this conversation is when I found out that her hurt feelings of where our friendship had gone was the reason she stopped following my journey. 

Which in all honest just shows where the compassion, empathy, understanding and support of it all lays. 

I have my people.

I have my support. 

I have my family.

I have my friends.

But above all else, I have myself.

And I am finally in a place where I am more than comfortable and confident with myself. 

If you want to support, love and understand this journey along side of me, I am truly grateful. 

If your more concerned with the way things used to be, I am sorry to tell you but things won’t be the way they were. 

I have come to terms with that, and so have others around me, but I understand that change is hard. 

I will always be here for my friends when they need me, but I need to be here for myself first. 

OhNut

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I heard about the OhNut a while back.

I was interested, but didn’t know a whole lot about it. 

I am also one of those people who gets really weary buying something online if I haven’t heard from a reputable source that its amazing.

It was a bit pricey at the time for my budget, along with taxes, shipping and the USD-CAD conversion rate, it was gonna be HELLA EXPENSIVE!

So I passed, and thought well maybe another time. 

Than I went to the Endometriosis Summit in March of 2019 in Hoboken NewJersey and to my excitement and disbelief THERE WAS AN OHNUT TABLE!!!!
I got to meet Emily the founder, creator and genius behind it all, she also put me to work as I was there early and she was struggling with some boxes hahaha.

I thought to myself, this is the best time to purchase this!!
I don’t have to pay shipping!!!!! 

I was soooo excited to bring this thing home and see how it all works!!

My husband was slightly skeptical! 

Ive ALWAYS had painful or uncomfortable sex. 

Prior to my hysterectomy the only comfortable less painful position I could handle being penetrated was doggy style.
For some reason now, after my hysterectomy every position is fine except for doggy style. 

Sometimes depending on the time of the month or where I am in my cycle, sex can be more painful than other times, it often feels like I am being stabbed in the stomach, I am going to vomit or he is going to puncture through my belly button. 

There are times where he just feels to large for me to be able to handle, and that it just becomes super painful and unenjoyable.
There is always constant questions during our intimacy 

“Is this okay?”
“Does it hurt?”

“Is this hurting you?”

“Are you even enjoying this”

The OhNut is amazing at so many multiple things.
It is 4 individual donuts thats link together much like lego. You can choose how many links you want and that creates the amount of a buffer that you need. Anywhere from 1-4 donuts; I prefer 3.
You link them together and you slide them onto the base of the penis; lube is super important in this step. 

My biggest fear with this products guys, was that he was going to feel the restriction. 

That he wasn’t going to enjoy it. 

That he was going to feel the difference. 

Because thats usually how things with endo go don’t they? Something that gives you a benefit always has a downside, us endo warriors have dealt with that for years with treatments and options.

But guys!!!!!

HE DIDN’T FEEL A DAMN DIFFERENCE!!!!!!

FINALLY, it was good for him AND ME!! 

I didn’t have to worry about the pain, I didn’t have to worry about pushing myself higher on him so he couldn’t get in as far, I didn’t have to worry about clenching my fists and than telling him I cant do this. 

And there’s an added benefit to it!!

Yes thats right, it has even more benefits!!

It acts as a cock ring as well.
If you’re not familiar what the benefits to a cock ring are, they help constrict the blood blow to the penis and help maintain a longer lasting erection. 

Aka- he doesn’t ejaculate as fast. 

We use the Ohnut often and it has definitely helped our issues of painful penetration. 

If you are interested in trying the Ohnut for yourself (I highly recommend it) check out their website, you will find a lot more information on the Ohnut there!!

https://lddy.no/8pnt

Also if you are wanting to purchase one, I do have a $10 off promo code!! 

Whoop Whoop!!

At check use code ACAMARA

My Marriage

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Well my last blog post on marriage and chronic illness gained quiet the traction.

So I figured I would do another one which is a lot more in depth. 

My last blog post on marriage was a very small snippet of everything, and I had a lot of comments and replies with questions, and essentially asking for more. 

So here is more;

Let me start off by saying that my husband is one of the most patient people I think I have ever met.
Which trust me when I say that can be a blessing and a curse. 

Like I had mentioned in my last post, we started dating when we were 17.

 I became symptomatic at the age of 7 and then my symptoms increased and became more relevant when I was 14. 

I was diagnosed when I was 19. 

So really, I had only been dealing with full blown endo for 3 years prior to dating my husband. We were together and 2 years into our relationship when I was diagnosed. 

The fact that he got to learn, understand and see the disease first hand along side of me I think helped things in a sense. But at the same point he is a typical male and would get and still gets a glazed over “ I have no idea what you guys are talking about “ look on his face when we go to doctor apts.

I have always explained things to him in as much lament terms as I could possible come up with and I still have to sometimes, especially now when my disease has progressed so drastically. 

Its hard to say the least, and I see a lot of it from his perspective. There are times where I am not sure who its harder on, myself or him?

I deal with the physical aspect as well as the emotional and mental pull of it all. 

But he has to deal with the emotional and mental aspect of essentially losing his wife to a disease and becoming a different person that who he ever knew. 

He also has to deal with the fact that I can no longer function the way I used to.
Our entire house hold dynamic has shifted drastically in the last year and half. 

But lets go back in time a little bit and start from the beginning;

I cant remember the day and I cant remember how I told him, but I do remember we were about 18 and starting to get serious. 

I remember I was so worried about what his response would be, he is European and comes from a very family oriented upbringing, but I better get it on the table now rather than later. 

And I told him;

I have a disease that has to do with my uterus and the chances of having children are slim. 

I tried to explain it as best as I could in simplistic terms for him to comprehend, and in all honesty he seemed not to care to much, mind you

We were 18. 

I was on birth controls at the age of 14,  we tried it all to contain my periods and as much as the pain was excruciating that wasn’t my biggest complaint with this disease. It was the sister disease that came along with my endometriosis which I found out later was called Adenomyosis. 

We used any and all medications to try and shorten my cycles. My cycles would be anywhere from 16-26 days long and heavy beyond belief. 

Some birth control pills worked better than others, some worked great for 3-6 months and then just stopped working. Some didn’t work at all. Some made my symptoms worse. And the ones that worked great usually turned me into a psychopath. 

Thats when I knew my husband loved me. 

I remember it like it was yesterday. 

We were 20 maybe 21, sitting on the front step of my moms porch and it was a summer evening.

I had been on 300mg a day of Danazol

(essentially its testosterone to stop me from ovulating which would then stop my cycles)

I was a raging bitch. 

And thats putting it lightly. I would have serious roid rage. I would cry at the drop of a hat and I am not a cryer. Anything and everything would piss me off and I was mad at the world 80% of the time. 

We sat on the porch and he talked to me about my moods and my emotions and what has been going on, and he knew it wasn’t me and he knew it was the drugs. And at the end of our conversation he told me to get off of them because it had altered myself to a point of not being recognized.
He had told me as much as he loves me and wants to support me he couldn’t handle the back lash of mood swings and emotions being projected onto him and if I didn’t get off of them he wouldn’t be able to be with me anymore. 

And honestly, I was happy!!
I didn’t want to be on them but I needed a validation of getting off of them.

I remember my doctor started me on 150mg and the side effects weren’t bad but it wasn’t doing anything for my cycle and I was excited she was going to try the next option, but instead increased and doubled my dose. 

Its so hard when you are in the middle of the hurricane, when you’re the navigator and path way leader of destruction, to see the destruction you are causing around you on the outside. 

He was just so patient and kind with expressing his feelings with it all and lets be honest, which 20 year old guy would stay around while his girlfriend is flying off the wall and try and work through it with her. If that isn’t love than I don’t know what is.

I recently went through Lupron.

Lupron is a muscular injection once a month or once every 3 months depending on your dosage your given, and it chemically induces you into a state of menopause.
I was also given add back which essentially is a low dose of estrogen to try and settle the side effects. 

Lets just say add back didn’t do a whole hell of a lot. 

Oh guys it was bad.
It took my endo symptoms away which was amazing but holy hannah, lets not do that again.

I mulled through my work days and the moment I was done work I would head upstairs and get into bed, and plant myself there for the night. 

I essentially was a shell of a person, I had next to no interest in absolutely anything, except for sleeping and being in bed.

I lost 12 lbs and I was either crying or sleeping.

And my poor husband had to endure it all.
The moment he would bring anything up I would just yell at him or break down crying, screaming “its out of my control, I know you don’t want to see me like this, but I don’t know if I have any other option”. 

I made an apt with my endo specialist when I realized I cant live like this, my husband doesn’t deserve to live like this. 

The biggest thing I can say with all of if, and sure I can sit here and pull apart each experience and the reactions, but that would make this post a heck of a lot longer than it already is.

The biggest concern and worry that my husband has when it comes to my illness is the inability to help, to fix it, to make me feel better and to understand it. 

He will still mention here and there during the days that a flare hits in the afternoon

“I just don’t get it, you were completely fine 20 minutes ago”.

Which trust me, I KNOW I WAS…..

We have had to have some conversations around the way in which he delivers his concerns. Sometimes he just says it how it is and thats fine, but when you are already emotionally unstable from the side effects of your medications, it doesn’t usually get received well, so that is something he is working on.

But in all honesty I think a lot of it just comes from the fear of it all. 

To have you wife happy and healthy and being productive during the day to all of a sudden having it seem like she’s hit a wall, cant walk, cant breathe, cant handle what is raging inside of her body has to be absolutely petrifying, while you stand there unable to help in any regard.

But he does help. He thinks he doesn’t but he really does.
Doing the dishes, bathing the kids, making lunches, vacuuming, laundry.

All of the things I cannot muster up the energy to handle or tackle he manages to get done. 

He manages the house, the kids, the work and my needs while I flare without making me feel bad for it;

And that is more help than I could ever ask for. 

Marriage & Chronic Illness

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I read a recent article; about types of love in relationships.

I have been with my husband for 14 years and married for almost 2, we started dating when we were 17. 

I read each one of the 7 different types, and I read each caption in relation to what that type of love entails.

And I have to say guys, I have gone through and felt and experienced all 7 of those types of love with my husband. 

I sent it to him, made him read it and he agreed as well.

  1. Infatuation;
    This is the period when people barely know each other, yet feel a mutual attraction. In such a relationship, two people often don’t have the faintest idea of whether or not they have anything in common, but they stay together anyway.
  2. Liking;
    In such relationships, you can always be yourself. In this type of love, people are usually united by common interests, views on life, and the feeling of being understood. Psychologists believe that such intimacy without passion and commitment will more likely result in friendship than full-fledged love. 
  3. Empty love;
    Couples experiencing this type of love have only commitment without intimacy and passion. Sometimes this type of relationship appears after a big, fervent love, and sometimes it’s vice versa: people who experience empty love can change, which adds passion to their feelings.
  4. Fatuous love;
    This type of love includes commitment and passion and is familiar to many couples. This is the kind of love that exists when 2 people are really attracted to each other and are ready to follow certain traditions like lavish weddings, exchanging vows, and sharing home duties, but don’t have true intimacy.
  5. Romantic love;
    This kind of love includes passion and intimacy. People in such couples are attracted to each other and feel comfortable next to one another, but they’re not ready to make serious commitments. Relationships of this type often don’t reach the level of cohabitation or marriage.
  6. Companionate;
    Companionate love consists of commitment and intimacy. Such relationships are much stronger than a usual friendship, and there’s a true attachment between the partners. Yet this is a rather chaste agreement because this type of love lacks passion. Psychologists say that the companionate type of relationship can arise after long years of an acquaintance or marriage.
  7. Consummate love;
    This love consists of all 3 components: passion, emotional intimacy, and commitment. Of course, their levels aren’t always equal, but it’s important to note that they’re all here. You can rarely see this type of relationship, yet if people manage to build them, they truly love each other. Such couples will most likely be able to live a long life together and enjoy their marriage.

As different as all of these types are, and in this article from brightside.me it comes across as each relationship you have in your life time would fall between 1 or 2 of these 7 types.

Where I see different points and different times in my relationship and now marriage with my husband, where we have fit into each one of these categories. 

I guess thats what happens when you start out young and stay together. 

On the outside looking in it all looks so simple and so easy.
It looks like a well oiled machine and It looks like we have our shit together.

But the reality is, we don’t. 

Its far from easy, its far from well oiled, its far from having it all figured out and it most definitely isn’t simple. 

And would I even want it if it was? Probably not. 

Would you appreciate a set of abs if you just woke up one day with them, or would you appreciate them more if you worked hard for them?

Would you appreciate getting a job at the top of a business, or would you embrace it more when you worked to climb the ladder? 

Its work, its a lot of work and we both choose each and everyday to wake up and work for what we have. 

We are constantly learning with each other because we are constantly changing.

We worked through our late teen years together, and then we ventured into our early 20’s of being “an adult”  and now we are into our 30’s.

I have to say personally I have changed A LOT since I turned 30. 

My illness had progressed drastically in my 30th year and that has been a huge change for not only myself but my children and my husband as well.
Its trying to figure out and understand my hormonal mood swings of being chemically induced into menopause.
its trying to figure out what day I am going to be out of commission and have all the duties at the end of the day land on my husbands shoulders. 

Its trying to figure out which days are going to be my “good” days and see how much we can pack into those days to make up for the previous days lost. 

With turning 30 and with my illness, I have realized I just don’t have the patience for a lot.

With a chronic illness that restricts your ability to breathe, your patience tends to run really thin.

Not being able to breath and then dealing with bullshit on top of it, just isn’t feasible.
So I have started to protect my energy. I have started to choose what I focus on and what I don’t focus on. I have started to surround myself with positivity while I also emit it myself to project onto others, because what you give out is what you get back.  

Some weeks run smoothly for us, filled with love, laughter and life.

Some weeks the smooth road is under construction and its filled with anger, frustration and distance.

As long as you come out of the construction zone with honesty and communication to help you hit the smooth road again, that is where you learn valuable lessons. 

5 Tips To Manage Endometriosis While Travelling.

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I figured I would share a few tips on how I manage my endometriosis symptoms while travelling.

If you have read my previous post you will see that we took a family vacation.
Now that the hustle and bustle of the trip, unpacking, reorganizing and getting our normal day to day lives back together, I can sit down with my wine and share.

It was rough I wont lie.
Not only did we travel and stay in a family members house, away from my normal comforts of home, I was also struck with a flare an hour before we left.
So I was left to deal with managing my endometriosis while travelling.

We traveled by car for 9 hours.

Yes re read that;
9 bloody hours in a car.

5 adults and my 2 kids.
Thankfully we rented an 8 passenger vehicle so we had a decent amount of space, but the best part about this truck was it had outlet plugs in the back!!!!

It was like the car gods knew I was coming and they made it happen.

Tip #1.

  • Go nowhere without your trusty heating pad, and source all outlets near and far.
    I spent the majority of the trip with the heating pad on my pelvis and my chest and it was glorious. 

Tip #2

  • Peppermint tea.
    As much as you can get into yourself. It works amazing for nausea! So just go ahead and order yourself an XL at the nearest coffee shop drive through. 

Tip #3

  • Embrace the endo belly.
    Honestly guys! The time its going to strike is when on vacation, at the beach or pool side – its just the way this disease works lets be honest.
    Put on you suit and go enjoy your vacation, time, endo belly and all. Rock that bod, because ill be dammed if this disease is going to get in the way of my long awaited vacation and down time. 

Tip #4

  • Take time for yourself.Now this might seem silly off the hop. “What do you mean take time for myself? I am on vacation its all about taking time for myself.” But vacations look very different for everyone.
    Some are family friendly vacations where you have the busyness of keeping up with the kids for the week.
    Some vacations are filled with travel and sight seeing and marking off bucket list areas to venture to.
    Some vacations are filled with visiting family in far away places, and going out for breakfast – lunches and dinners, or bouncing from one relatives house to the next.

    Manage your self care, manage time out for you, to wind down to relax and recoup. Stress is a huge trigger for most endo warriors, so as much as vacations are lovely and they get us away from our day to day stressors they have their own set of stressors as well.

    I found on my vacay checking in on my Instagram page or blogging a few posts helped give me some me time back.

Tip #5

  • Try and source and find all tools and comforts of home money can buy. If you traveling to a under developed country than bring as many tools as you possibly can, These will be life savers!
    One thing I found EXTREMELY hard on this trip was not being able to bring my cannabis with me.
    Its legal in Canada where I live, but we went to U.S.A and I was not allowed to cross the border with it. Also we stayed in a state where cannabis wasn’t legal, so sourcing it wasn’t an option either.
    You don’t realize how much you depend on your tools until you no longer have them at your disposal. 

The best moment was jumping onto my bed when we got home. A sigh of relief I was in the comfort of my own home with all of my management tools around me. 

I am hopeful these tips and tricks help you even a little bit while you venture on your vacation.

Let me know if you have any tips and tricks you find helpful and useful when you travel while managing your endometriosis.

♥