I'm counting my lucky stars. I was able to make it through work yesterday & I was lucky enough to get asked if I wanted to go home early on Saturday. It was such a blessing because I wasn't sure how I was going to make it through my shift as it was a long one. Luckily yesterday was a nice short one and I still had a lunch.

I'm hurting today though, a lot. I'm so sore and stiff all over and my muscles and joints are just aching. I was trying to stay sleeping this morning but my pain wouldn't let me. I'm hoping to nap this afternoon. I'm just always surprised with how much I ache... I feel like I ran a marathon or something. This is picture really sums it up.

Thanks to my friend Sarah for sharing that on FB a while back.

I really can't wait for my surgery because I'm just so tired of feeling like shit all the time and I don't know how much more of this misery I can take. The anger and frustration it brings me is to much, and I don't handle anger well.

On a lighter note I managed to summon the spoons to go to Costco and got a 100ml bottle of tea tree oil for 15$ and it comes with a little book. I'm pretty happy, I saw it before and had been wanting to go back and get it. I'm also making some firecrackers, my second try. I'm using keif so they will be potent. I tried before but I don't think I baked them hot enough, but they somewhat worked. I hope these do, I need some relief, my hips & pelvis feel like they are trying to be ripped apart. I used peanut butter and hazelnut spread together and graham crackers. For those of you that don't know what firecrackers are, you use a cracker and peanut butter or something fatty like that with weed and you spread it on a cracker and bake it for about 20 mins. I used coconut oil to help make it even fattier, and you need those oils to activate the cannabis. I sued keif too which is the powder that you get when you grind your herb. I made 2 today so if this one doesn't work I can eat more, or of it does I can have it later tonight. I just ate it, it wasn't to bad. I don't mind the taste of weed though. I'm going to end this and see where this goes, I might have a bath because my stomach is so sore, relax so my firecracker can kick in.

I'm so frustrated and angry today. I just finished spotting maybe a week ago & now it's starting again. I can feel my period coming & I'm dreading it so much. I remembered when I awoke today that I had some pain last night and then when I got up I could feel it. It feels like someone is pouring chemicals inside me and it's making everything burn and hurt. It feels like I was punched over and over inside and I'm all bruised. My hips are stiff and ache so much that it hurts to move them. It's so depressing that I can't even believe it. I'm starting to worry about work, I worry because I don't know how much time I will miss. I worry I might lose my job. I wish my fucking treatment didn't have to affect how I feel so much, these fucking hormones have the best of me right now too. I've been a bitch lately & I don't like it.

I'm not ok right now, I'm freaking out because of my pain.

I need to write a list of all the things I need to do for myself, book my surgery off, some Vacation time, call my Dr.'s and get in and get my referrals. I just hate it. I do need to find a Dr. that will help me with my pain though because I don't know how much more of this I can take. I'm just thankful that I only work 4 hours tonight. I can handle that right now, as long as I have stuff to keep me busy. I just have to take it one moment at a time.

more to say

I've still got a few more things to say, but this isn't me venting, and more of an afterthought.

Firstly I want to say that I don't want people's sympathy or for anyone to feel sorry for me, I want people to try and understand what Endo is like. I'm trying to raise awareness from my small corner of the world, in my circle hoping that our next generation of women can have some real hope for this disease. Endometriosis is a 1 in 10 disease, yet I am astonished and how little it is common knowledge. Furthermore the fact the it can cause chronic pain, chronic fatigue, bowel problems, painful sex, and so many other problems. How can so many women be suffering and so little is know? It is a tragedy.
So I want people to know what it's like to live with a disease like this. One where there is no cure and the current only way to diagnose is with surgery.

I would also like to make a point about pot. Yes pot. I know it's still a taboo subject for some, but I have a hard time understanding why. As someone who has used it for many years, I can attest to the wonders of the flower. I couldn't survive my life currently if it wasn't for my dear friend Mary Jane. It is the only medicine in the world that cures nausea while also helping to promote appetite at the same time, which really comes in handy when you have Endo. It actually makes the brain forget about pain. I don't know how I would sleep at night without my tokes. You can think what you want about addition, but I would much rather have a mild addition to pot than be opioid dependent. Which sadly can happen to a lot of women with Endo due to the chronic pain. I really can't wait until I meet the Dr. who will be willing to help me get my medical license.

so angry with my body

I'm so frustrated with my body right now. I've had a toothache since yesterday, just out of the blue. I didn't eat anything that caused it, and I had to miss work again because it's just to painful. I'm even more angry because I'm still bleeding and having cramps. I started my period 15 days ago, which means yea, I've been bleeding that long. It gets old really fast. It just makes me hate my body so much, and the pain in my right side is the kind that makes me nauseous. I'm so sick of hormonal shit, along with all of this I can feel myself starting to get depressed and angry because of it. I can feel the hormones making me more emotional. It's such fucking bullshit. I just want to feel 'normal' and be able to feel like I am in control of myself and my emotions, I want to know that getting my period isn't going to be a bed sentence and cause me to miss work. I'm so tired of having my period control my life.

^this was started on Wednesday June 15th^

I'm fucking missing work again today. I went in feeling fine and everything and then my pain started and it got so bad I just couldn't take it anymore and had to come home. I can't stop crying, because it makes me so emotional, not to forget the slight comment one of my managers made about me having to leave every time they are working and it's busy. Which is total bullshit. I know I had to come home a few months ago, like in March or April because I had a panic attack. It's so fucking frustrating because people don't understand how much this shit affects my moods and emotions and hormones. I work as hard as I possibly can, and do the best I can. I wouldn't come home unless the pain was as bad as it is, I go to work in pain everyday as it is. I'm just so fucking sick of feeling like I'm locked in a cage, trying to get out, trying to escape my body. I wish I could just make everyone who knows me and thinks I'm faking it or whatever would watch Endo what? so they could get some idea. It infuriates me how little awareness there is about this disease, I feel like a broken record.

I so wish that I could have just one day to know what it feels like to feel 'normal' and pain free. I would love to know what it's like to feel like a 30 year old woman who is healthy. I'm so over this shit, I'm really starting to wonder how much more I can take. Thankfully I've got surgery in Oct, and I'm hopeful with the specialist I found. I know that if I was healthy I could handle life, and really live, so much better. Right now it just feels like I'm faking my way through.

I wonder what specifically is causing this pain in my body? If it's an adhesion on my ovary or my appendix, or if it's bowel related? It's kind of hard to tell because of the location, I just know that it hurts like a motherfucker, it's sharp and deep and sort of feels like something's pulling. I also wonder if the pain is going to keep going, or get worse and I'm worried for tomorrow. I really hope not. I just can't believe how low I feel, it's bad enough having to miss more work this week, but then have someone say something so mean to me. It's uncalled for, especially from a manager. I'm over people judging me because of my pain, or what I can't and should be able to do for a 30 year old. I challenge any of them to live in my body for just a day and I guarantee they would be singing a different tune. Once I get myself taken care of and my health in order I will be making sure there are changes to the system so that god forbid, one of my nieces ends up like me.

I guess this is enough venting for today. I'm going to try and sleep I think.

I know I shouldn't let it get to me, but it is..... I called work this evening, after missing a 3rd day in a row today, to see what time I work tomorrow. I really can't miss another day, and the pain has gone down to a level that is tolerable enough for me to handle for my 9 hour shift tomorrow. What's bothering me is the response I got from my co-worker on the phone. I asked to know when I was working and said something about missing work and not wanting to miss more. They said something about them being big shifts, and then something about, whatever, do what you've got to do. It's not that simple. Not to mention, I was laying in bed after napping with my heating pad on my stomach when I was on the phone. It makes me so crazy that people think I want to be missing this much work. I feel like people think I am lazy, and that's so not the case. It makes me anxious for tomorrow because I have to think about how to explain myself. I can't just say I have my period and it's really bad because I know people will be like 'I work all the time with my period, it's just part of being a woman'. I can try and say I've been having a bad Endo flare up, but no one really knows what that means. I feel like I should get business cards made up with information about endometriosis on it so I can hand them out to people. I need something like that.

^^The above was written on Saturday June 4th 2016^^

I'm going to keep this post going because I want to include my venting from above. My period is almost over, and while the raging, almost euphoric cramps I was having are gone, I'm still having pains and very stiff and tired. Unbelievably tired. I went back to work on Sunday finally and worked Monday too. I had yesterday and today off and work the next 3 days, and then who knows. I'm so tired though that it's stupid, I know it is because I'm just finishing my period though. After all that pain and shit you are bound to get tired. I've just got to say something here, I LOVE my Diva cup! I was so hesitant for so long, and when I got my last period a few months ago I just couldn't take tampons anymore. It's amazing, it is so easy to use, and not as bad to clean as I would have thought. You can shower and bathe too, and the smell is non-existent. I'm just so thrilled that I finally decided to go for it. If you are thinking of getting one and aren't sure, I highly recommend it. The cleaner they sell smells pretty good too and you get a coupon for it when you buy the Diva cup in the box.

Alright.. moving on then. I got a call today for a pain specialist in Toronto, but
I need to get into my Dr so I can see one here. I need to get someone to help me get medical pot. I also need to see an gastro Dr and figure out what's up with my awful IBS. It's so bad with my period, and now that the heat, more  specifically the humidity, coming it will get worse. I'm not looking forward to it.

I'm going to finish this entry by saying I'm super excited, for 2 reasons. My favorite TLC tv shows start again tonight, My Big Fat Fabulous Life & I Am Jazz. Both awesome shows, Whitney from the first one is so inspiring to me, she just radiates light and is so positive. She suffers from PCOS, which is also a disease that affects the female reproductive system. Also I'm excited because
I think I came up with a pretty cool idea this morning. With all of my student council, OSSSA and Katimavik experience I've always wanted to use it to help people or do something. I've been trying to think of what I could do for Endo and my sisters... well how about a leadership/awareness conference for Endometriosis? I know it's just a new idea, but I feel like I could plan workshops, have some guest speakers and to bring sisters together would be a powerful thing. Anyway... I'll work on the idea some more and put my feelers out.


Here's a really great interview with the Producer of Endo What (a fantastic documentary that was released this year about Endometriosis)

http://www.inflectionpointradio.org/episodes/2016/6/6/shannon-cohn-the-cost-of-endometriosis

I am in so much pain & it's making me so angry and frustrated. I'm angry because I've already missed 2 days of work, and I'm worried I will have to miss another one. I'm frustrated because there isn't anything I can do to stop my pain really. The only thing I can do is illegal, so there you have that. In case you are wondering, I smoke weed for my pain and it helps give me some relief. It helps with my nausea, helps me eat, helps me sleep and helps me relax a bit with these raging cramps. Though I haven't been able to sleep much today as it's been a really bad day, one of the worst in a long time.

I am starting this blog to help raise awareness among my friends and family and so people can have a better understanding what it's like for me to live with Endometriosis. I need people to be able to understand me, and my sisters who suffer with this devastating illness that is a daily battle. I suppose I should be clear too that I am waiting for a laparoscopic surgery in Oct for an official diagnosis, as this is the only way to diagnose the disease. I am however currently seeing Dr's and trying various forms of 'treatment'. I use this term loosely because the current treatment for Endometriosis is, in my opinion, very lacking. Which is why awareness and education is key. I would also like to add, I am no medical expert, I have no education in the medical field, I do however consider myself an expert on Endometriosis, at least my battle with it. I know my body and am very aware of my symptoms. I have been studying this disease for over a year now and I am forever reading and researching.

I will start out by saying that this disease is a motherfucker (I should also add that I won't be mincing my words, Mum), it is a constant battle with myself to keep going. Literally, physically, emotionally, you name it. It cause chronic fatigue, which is a result of chronic pain. You are constantly saving your energy for your life, and by life I mean your job, your family, your kids, your daily routine, whatever it is you do day to day. Check out the spoon theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
That pretty much sums up what it's like to live with this, it's an ongoing battle with one's self. It is my wish that people can start to become aware of this disease and begin to understand what the one in ten women with this go through. I'm not going to go into detail explaining what Endometriosis is right now, I'll provide some links at the end. I'm too tired to write all that out right now. I just wish I could get some relief, I know I could go to the hospital, but I'd rather suffer in the comfort of my own home than sit and suffer with strangers on the off chance that I might get a sympathetic Dr who will actually believe me when
I describe my pain. Another reason this disease is so isolating, you struggle to explain your pain and you feel like others struggle to believe you. It's very hard to live with.

This is it for now, I just need to start writing and putting it out there for people to see if they wish.

http://endometriosisnetwork.com/information/understanding-endometriosis/

http://www.endo-resolved.com/endometriosis_explained.html

http://www.theguardian.com/society/ng-interactive/2015/sep/27/the-pain-is-paralysing-30-women-describe-living-with-endometriosis
This last link is a great article with accounts of real women who suffer with Endometriosis.