Day 3. But I had symptoms since:

Day 3
But I had symptoms since: 



Part way through my first menstruation cycle is when the pain really started to hit me. I was 14 in fact my birthday had just passed and I was feeling weird but didn’t think about it, I went to sit on the toilet and saw blood oozing into the bowl from between my legs. I burst into tears, as far as I was concerned that blood meant the beginning of the end when it came to being pain free, to do what I want when I wanted, the end of being able to wear what I wanted, the end of having good attendance at school or anything. Sure I didn’t know these things to be true in my case…. Well I didn’t know YET. But my mom had been very honest about how her period affected her life (she was diagnosed with endometriosis also) so I had reason to be scared. Sure there was no guarantee that it would mean I would have the same issues as her, but her mother had terrible periods that would leave her crippled in pain and unable to move, and so did her mother (so my mom, grandma, and great-grandma) all sounded like they suffered from endometriosis.

After I stopped crying and was able to tell my mom why I was crying in the bathroom I was able to find the amusing side of it all. We had recently moved to a very “white” town, that was really rather wealthy, or everyone I went to school with was, so while I was crying about the arrival of my menses, I knew other girls in my class were celebrating the arrival of threes, bragging about it and so on. For me it was my dirty secret, as none of the girls understood, I simply had to be making it up, as THEY didn’t lose control of their legs while on their period, or throw up…… As boys had nothing to compare it to I most often found them the most understanding so tried to stick with more guy then girlfriends.

Photograph credit: "Cubicle 5" by AbsentAsI on deviantart.com

Day 2 of Endometriosis Awareness Month 2014

Day 2. I was diagnosed with Endometriosis in:
September 2004, at the age of 17. This is much younger than most are diagnosed, it’s well documented that it generally takes 8 years of having issues and looking for answers to get diagnosed, for many it takes much longer. I had things that no doubt helped with my early diagnosis, my mother who can be super pushy when it comes to me and my health, which her-self is diagnosed with endometriosis.

At 17 i had my very first exploratory laparoscopic surgery, while examining me on the inside endometrial cells were found already in many places they shouldn't be. The next few years i had more surgeries but rather than for diagnosis (surgery is the only way), these were to help treat the endometriosis by cutting or burning off the endometrial cells.

#endendo #endometriosis #endoawareness #whatisendo #awishnoted #chronicpain #pain

Day one of Endometriosis Awareness Month

Day 1. For me, living with Endometriosis is: daily pain and excess daytime sleepiness, then there are my "bad" days where i simply can't seem to function and often have a very hard time even standing up or walking due to the pain, the bad days i always try to reduce my pain with medication, heat, herbs and such but often it feels like nothing helps. All of this leaves me with a life of much isolation.

#endendo
#endometriosis
#endoawareness
#endosisters
#endoproblems#awishnoted

Beaded necklace and Schedule Nightmare

Tonight i have decided I am going to make a necklace, it will be in the works all year long.
A visual way to see and I guess take control over all the medical procedures and such happening in my life. 

I got the idea from that of what many children in hospitals fighting cancer do, Beads of Hope.I guess perhaps because I am feeling like I have no control over anything in my life right now, and am feeling as helpless as a child the idea suddenly makes sense to me.
The idea that I will be facing at least a 2nd Brain MRI this spring after the hospital goofed and gave me an MRI this past week without the required contrast, when I’ve already has a brain MRI last year, along with a breast MRI the counts of MRI's alone seem to be mounting. Looking back I wish I had come up with this idea last year, but I didn't. So this year I am going to.
Going to start counting medical related things that have happened as of the start of this year.
Then I will start to sort out pretty beads, make a necklace that I will be able to add beads to as the appointments and procedures show up.
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Tonight I just needed something so badly to cheer me up and although I guess some might consider this wallowing in it all, I think it will make me feel some power over everything, something I desperately need. Tonight my thoughts are bouncing between everything medical going on, and learning that S is likely going to have his shifts changed around.
He has worked his current shift setup for years now, it works for us, and with him also going to school one day a week we make it work though it’s rough. The shift change that has been mentioned to him as likely to happen in the next few weeks. S is trying to say it won't be a big deal, and we will manage. I know we will find a way, but the prospect of the change means that S being a work-aholic will work more, for me it means going from basically 14days a month having full days with him (I know this is spoiled in most eyes but if you spend every day your partner is at work home alone, I assure you those days help sanity), to suddenly having 4days a month with him home for "days off". Sure the schedule would go from working 12hour days to "8hour" days, but S has never worked a true 8hour day, when he is scheduled for 8hours a day, they keep him or he works 9-11hours a day. So even though he is saying it means more time with each other on his work days, it really doesn't likely. Or I guess what I should say is it never has before truly. All I can hope is that my moods are better by the time this happens, as currently I find the idea devastating.
What it means in my head is that everything that needs to be done around the house, the shopping, time with friends, and our families (at LEAST 1 day a month with his family) all has to fit into 4days off a month, 90% of the time on Sundays. Did I mention we hate shopping when stores are busy... like EVERY Sunday? S suggested that perhaps some of these things could be done after he comes home from work; on his "8hour" days... he is being either very optimistic or trying to prevent me from crying, or very forgetful. When he comes home from work, he wants to relax, it’s the end of his day and time to kick-back and forget his work day, and avoid people as he has been around some all day, this also means he does not want to go out once home, he does not want to socialize with others, nor do work around the house, and I totally understand this, but this once again means all that has to happen in a 4day period. It also means that the time we currently spend with my family on occasion will be out the window and it will go back to only his family's planned family dinner's. Don't get me wrong, I LOVE family dinner with his family, it’s something mine has never done, but it’s also nice to see my own parents at times, not just in passing on occasion. Aside from all of the practical issues him working 6days a week, generally 9-11hours a day causes, it also means I am home alone for 6days a week most of the day, when he will get home it will be shower, dinner, relax watching a show, bed. Then the next morning, up, and out the door for 10-12hours until he's back home for shower and dinner.
My issue is mostly no doubt because of my current state of mind, and cause I have become so used to being able to spend ample time with S, good as he is my number one person for any social contact. We have also recently gotten into the pattern of seeing friends now and then when our schedules matched up, and seeing them more then every few months likely will also be out the window.
Just feeling super frustrated, and with all this it’s not like I can even plan to submerge myself in tons of crafts for all the alone time. To do so they would have to figure out the neurological issues that make fine motor skills with my hands anything more than a dream most days.
Oh and I totally forgot till this moment, this schedule change will also mean rather than rotating between days and nights, it will be a rotation between days shift , afternoon shift and night shifts every 2 weeks.  For some reason, afternoon shift manages to make both me and even S a little extra squirrely…. Like we are miserable on that shift even when we are the happiest people in the world.
Thankfully my necklace idea only will require one or two beads at a time. Something I think I can manage.