Endo What

When I was diagnosed with endometriosis one year and a half after I was diagnosed with MS, I was surprised to learn that, unlike MS, endometriosis is not a rare disease. Yet there’s less talk about endometriosis, and there is for sure less research into finding a cure or finding ways to improve the lives of millions of women around the world. I was taken aback by how little is currently being done to understand what causes it, why and how it develops and how it can be prevented or managed once it’s settled. It’s like doctors just decide to cut you up to remove the endometriosis tissue, send you home, and do it all again when more unwanted tissue grows. Like we were needle felting pads or something.

Below is the trailer of Endo What, a documentary aiming to raise awareness to some of these issues. And take a look at this insightful Guardian article which lets you know more about it. And then let’s all say “Enough already!”

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It’s back

I’m afraid I still don’t have good news *sigh*. While last year my ultrasounds revealed no sign of endometriosis tissue, now the mass is back, attached to my left ovary as it used to be, as it definitely shouldn’t be. So far it’s still tiny in size so the doctor who examined me told me not to worry about it too much, that probably my gyno will only change the birth control pill I’m taking to another one that’s stronger and see what happens. But still… sigh…

Accident

Dear friends,

I haven’t been around much, and I’m sure I’ve been missing some of your posts. Unfortunately, it wasn’t because I found a new job, the man of my dreams or went on a trip. It’s because I’ve been dealing with a lot lately.

First, I caught the flu before Easter. Three days with temperature were enough to set me back completely. Although after a week on the outside I displayed no more symptoms, I suspect on the inside it took a lot longer for my immune system to deal with it because my fatigue levels skyrocketed. And that’s bad because my normal fatigue levels are usually pretty high. The last three weekends were spent just sleeping. Couldn’t read, couldn’t write, couldn’t do anything for college. Continue reading

MS and colds don’t mix

I kicked off 2016 dancing with friends and generally in a good mood. But soon after I went back to work I started noticing my throat going sore and my lungs burning with a tickling feeling. A lot of coughing ensued. And by a lot I mean a LOT. This wasn’t one of those colds where you just feel like you were hit by a bus for three days and then you’re fine. No, this was a mild enough a cold, except that it lasted for a whole long eight days. That means that for those eight days I barely slept because I couldn’t stop coughing.

I think you can imagine where this story is going. Continue reading

Carrying me through

At the start of every school year, the place where I used to have my contemporary dance classes lets you try each of the classes and each of the levels once for free. I stopped dancing in July 2013 when I was diagnosed with endometriosis and told I had to have surgery. The surgery turned out not be necessary but then I went back to college and stayed away from dancing in order not to overdo it and have an MS relapse. With my masters starting two weeks from now looks like it’ll be another two years before I can go back to dancing. But that didn’t stop me from trying one of the classes for free tonight. I thought I’d be completely out of shape, I thought I’d forgotten everything, but the truth is the body has a memory of its own. For one hour today I felt really really happy, like I haven’t been in a long time. Like this is what I was born to do if MS hadn’t got in the way. I felt completely and positively alive. And I hope I can carry this feeling with me for the times to come.

I Monday Need Tuesday A Wednesday Break Thursday From Friday Myself

saturation point. n. 1. Chemistry The point at which a substance will receive no more of another substance in solution. 2. The point at which no more can be absorbed or assimilated.

This is what MS does to me. It makes me reach my saturation point way sooner than I once did. The point at which fatigue evolves into pain because no matter how many hours I sleep they’re still not enough. The point at which I can’t stand hearing my friends talk because everything they say seems trivial and shallow compared to what’s going on in my mind. The point at which just the thought of typing a few words here drains me. Continue reading

Good news, trip to the hospital, and why from now on I’m cured

This week has been really kind of intense.

First the good news. On Monday I had an ultrasound to check on my endo and, surprise, my ovaries are clean! No cysts no nothing. Doctor says I still have endo cells and that I will always have them as it is a chronic condition, but for now things appear to be stabilized. I’ll drink to that. Continue reading

Christmas with you

This is a little appreciation post I’ve been meaning to write for some time but haven’t quite managed.

I wrote my first blog post here in March and back then I didn’t imagine that such amazing people with such meaningful experiences were going to read me. Least of all that around six months later I would be nominated for awards. I was nominated for the One Lovely Blog Award by Life in Slow Motion and by A Body of Hope, and for the Liebster Award by Love My Life Anyway and by Invisible Pain Warriors.

I didn’t accept any of the nominations for two reasons. One is that I had a relapse in September and my life turned upside down, with bad news, MRIs, blood tests, changes in medication, struggling not to drop out of college, and finally feeling a new round of depression knocking on the door from the end of October until now. The other reason is I love so many different blogs that I can’t pick them all. You see, I’m a Libra, making decisions is hard for me. 😉 And mentioning some blogs while leaving the others just didn’t seem fair.

When this journey began, I envisioned this blog as a source of information on everything I’ve been researching since my MS, endo and PTSD diagnoses. It actually took on a totally different shape. It became more personal. An outlet for questions, doubts, reflections and occasional angry rants. I sometimes wondered how to grow my number of followers and I wrote a couple of posts with “10 tips” and how-to topics because they seem so popular. They’re still in the drafts folder as I never published them. They’re just not me. I figured if my writing were true to myself the right people would show up, like and comment.

They did, and became like a family to me. I needed that. A chronic illness diagnosis sets you apart from everyone else. It isolates you. With MS, because it manifests itself in such different ways from patient to patient, it even isolates you from other MS fighters who may never have experienced your symptoms. In the three years since I got the bad news, I realized some of my friends were really not good friends at all, so I chose to let go of them. And even with the friends I have that are absolutely wonderful, they just don’t know what it’s like. They listen, they try to comfort, but they have no idea.

So that leaves me with how important the interactions with you are for me. And you know who you are. You are the ones who read me and get me, no matter how flawed and lost I may be. You are the ones I read religiously, I care about and worry about when you’re too quiet. You probably have no idea how the kind words you left me felt so supportive many times. I sometimes wish I had more spoons to leave you more comments like that, but in the end of a busy day my mind is often unable to complete a sentence in English that will make sense to you.

Christmas is hard for me because my family is the definition of dysfunctional. And New Year is also hard for me because it makes you look back, look ahead – and I can’t help but feel overwhelmed and hopeless. But I guess I can take them as chances to stop and thank you for your generosity, for giving so much of you and adding meaning to my life.

Happy winter solstice (summer for those in the Southern Hemisphere) and happy holidays. 🙂

“I hope you have the courage to break the sound barrier.”

I had to sleep 11 hours today out of exhaustion, and I know most people wouldn’t understand. Even if I told them I work full time and I’m currently going through changes at work, that I have classes at night and spend most of my weekends researching and writing my final paper for college, that I have to manage my apartment building affairs to which I was appointed this year, that I struggle with two chronic illnesses plus some mental issues, while trying to keep exercise and social life at an acceptable minimum, they would still go, “Oh, yes, my life is pretty rough too but I get by with seven hours of sleep.”

So this is a TEDx Talk I found that sums up in 15 minutes some of the things we chronic illness sufferers feel and go through. It’s about Lyme disease, but it could be about multiple sclerosis, endometriosis, mental illness and many other conditions. It’s worth taking a look.