what I should have posted ten months ago

I’ve been silent.

Not because I haven’t had things to say… more so because what I have to say is not easy to say. The below post was written ten months ago. Saved to my drafts, for my eyes only. Today I sit here, 7 months pregnant. I experienced a miscarriage in May 2015, a really hard summer of sadness and today, fear of what the next three months will hold. I wanted to share the below post, because while I am pregnant now and have thought a lot about motherhood, the below still rings true.

______________________________________________________________

When I was 19, and after a few rounds of tests and hormone medications, I was told by my doctor that I “would have a heck of a time getting pregnant”. Now being 19, I didn’t think too much of the diagnosis. I was 19, why would I?

However, years after hearing this I began to reflect and realize that I had two choices:

1. Ignore it OR
2. Accept it!

I chose to accept it, not because I lost hope in the idea of having children of my own or experiencing pregnancy, but because I really couldn’t ignore it any longer. After being diagnosed with endometriosis I gained new insight about my body and the researcher in me wanted to learn all there was to this new diagnosis, to be both informed and empowered.

Over ten years later, after two surgeries and many various trials with drugs and supplements, I am still unsure of whether or not I want to have children. This uncertainty of course has some relation to endometriosis; it affects every aspect of my menstrual cycle – my life – to not take it into account would be naive.

My life is not without children. I am an aunt to some pretty incredible kids. I’ve been blessed to take part in their upbringing, to laugh with them, enjoy their imaginations and to learn from them.

Living with endometriosis isn’t easy. Lately I’m pretty much convinced that it is quite awful. No one really asks what it’s like. Many people think “oh she just has bad cramps”, but it’s not like that at all. If only it were just a few cramps here and there. Living with endometriosis, knowing what the future holds, is devastating.

There is a line in the film, The Fault in Our Stars, where Hazel Grace tells Gus: “I also don’t really want this particular life.”. Without raising alarm bells for the fact that I may be sad to a certain level, and quite possibly depressed on some tough days, I often do not want this particular life (living with endometriosis). While Hazel Grace had a much tougher battle to go through, she makes a good point; sometimes life isn’t easy or joyful and it’s okay to not like what you are going through. It’s okay to be a little upset, frustrated and sad.

No one ever said life would be easy… I just wish it was easier.

While this disease may be destroying my insides, it doesn’t need to destroy my mind, mood or spiritual life. This of course is easier said than done. I’ve questioned a lot over the past few years. Sometimes I even wake up panicked that I may in fact never experience pregnancy, have not yet experienced pregnancy, may not want to experience pregnancy… and the list goes on and on and on. I struggle with seeing beyond the disease because it plays a role in so many facets of my life. From the number of hours of sleep I get, to my diet and exercise, whether or not I can lift my adorable nephew… it’s ever present.

And I doubt.

That is the worse part of all.

 

Advertisements

round two

uterus image

Thanks to my wonderful sister-in-law for making me this beautiful design.

A few months ago I underwent a second laparscopic surgery in an attempt to stabilize the endometriosis. It’s been a tough few months of pain, nausea, slow walks and disposables.

Side Note: The doctor advised against using tampons or a menstrual cup for the first few weeks. I had to resort to disposable pads as the cloth ones weren’t cutting it. My trip to the feminine hygiene aisle was overwhelming. The pads I once used were redesigned and repackaged. I felt like a 13-year-old who first got her period and didn’t know what to buy. I bought the wrong absorbency twice, was incredibly uncomfortable and felt extremely guilty about the amount of waste I created over the last few months.

Thankfully since then my DivaCup and I have been reunited.

While I had already been through the surgery once before, knowing what would happen didn’t make things any easier. And this time around, they took care of a fair bit of growth. The recovery was a long process and continues still today.

The staff at the hospital was however incredible, going above and beyond to make sure I was stable before sending me home. Also, unlike the first time around, the surgeon actually came out and spoke to me post-surgery. I went home knowing exactly what was done, what my recovery time would be like. Without going into too much detail, the growth was substantial (Stage 4 Bilateral Endometriosis), but the doctor is hopeful that I will have 6-12 months of better periods (my last three cycles have been terrible, I’m hopeful things will improve).

Overall the surgery was a good experience. There are however a few things I wish I would have been told before.

(1) The first few periods after your surgery will result in worse pain than the surgery itself (at least for me it did).

(2) Take at least two full weeks off from work to recover.

(3) You will feel better. Having the surgery near the end of the year was good with regards to work, but really disappointing for my personal life. I missed out on many nights out, Christmas with my family and a number of unpaid work hours. At the end of the day you need to take care of yourself, even if it means missing out on some social time with loved ones.

(4) Have a support system in place. Whether it’s your spouse, a sibling, parent or good friend, you will want to see people (even if you feel horrible). I am blessed with a loving family who visited often (thanks mom), friends who spent the day with me when my husband went back to work and who brought great books, meals and plants to fill my home with colour and life.

I may still be in pain, but I made it through what is hopefully the worst of things.

and U thought U had me…

(Disclaimer: I wrote this on a bad day, in the hopes that a better day would come)

Dear U,

A friend once commented on a post and listed her user name as “mad at my uterus”. That pretty much sums up how I am feeling today.

It’s now been 3 months since I heard the depressing news that your lining has decided to attach itself to other areas within me. Lucky for U, no one really know why this happens, and because it is too dangerous to remove, I guess I’m stuck with more of  U than I’d like.

If U were an actual person, I’m convinced U’d be laughing at me, or maybe U’d be sad for me, one or the other. While I try to be positive that the many amounts of supplements (Progesto-Mend, Zinc, Vitamin C, Calcium, Magnesium, Vitamin D, Pro-biotic, Omega 3’s, Vitamin B6) and dietary restrictions (goodbye wheat, dairy, caffeine… all things tasty) I’ve been trying out may lead to improvement in symptoms, the symptoms of this past cycle suggests the opposite.

I’m going to be honest with U.

U make it really, really hard to like U.

To want to keep U.

To care for U and above all respect U and the life process U offer.

Basically, I find it incredibly ironic that U can carry both intense pain and life.

The body is funny that way, isn’t it?

I’m not giving up. I want to, really badly, but I’m not going to stop trying to find relief. I like to believe that U are on my side. Some days are easier than others, but I know if U could, U would try to make things better. Or that’s what I tell myself to keep from simply saying goodbye to you for good.

I want U to be a part of me for a long time to come. I know U’d want the same. So maybe, just maybe U can step up your game a bit and pitch in every once in a while?

breathing for U, breathing for me

Dear U,

It has been one of those days (turning into one of those weeks) where meltdowns should be in order, but rage seems to cut in line. As my body tightens over the frustration that is “the situation” I can feel U tightening; pleading for calm.

And so I am learning to breathe… slowly, deep breaths, closing my eyes, paying attention to the time between each breath.

Sometimes it works and during others… well I can’t focus enough to even begin to slow my breath.

But I’m still trying.

Continue reading

U and I have something to discuss…

Dear U,

My motivation to write to U or about U has seemed to have fallen in between laziness and frustration. While it was a pleasant surprise to entertain U twice in one month this summer (sarcastic thanks!), it was a bit of an irritation having to take you along for what should have been some period-free summer fun.

While I was hoping for some different outcomes this autumn, so far U’ve managed to repeat yourself with an “extra” visit this  month! I feel that no matter what I plan for, or try to plan for, it never really turns out as expected. And although I am upset, I find Ur unpredictable behaviour to be one of the many wonderful characteristics I love about you!

You certainly do know how to keep a girl on her toes.

Continue reading

my summer with U

I’d be lying if I said this summer was lonely with my U. She’s been quite present, even when my Mobile App tells me she shouldn’t be.

Although I get that she would want to be around for the great summer moments, camping, cottage living, summer concerts, plane trip to New York City, long weekends (so far she’s never missed one), I feel she shouldn’t always get her way. One thing is for sure, she’d probably enjoy herself more if she wasn’t swollen, bloated and tearing at the sides. And what’s more, she’d probably have a better time if our entire being were in a better mood.

Continue reading

red musings

Dear U,

I find this month to be one of sadness for me. As old chapters are ending, new ones have started, but I am not really sure how I feel about these new pages yet to be creased, written on and torn.

Looking deep within I’ve realize that when we first started our relationship I had many hopes, fears and worries. Not surprisingly, I still carry many of them close to my heart today. Over the past year I have discovered so much about U, and in turn about myself. Yet, I still feel as if I don’t know much about the woman I see staring back at me from the mirror.

Continue reading