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I live in chronic pain. The reason for my pain, is Endometriosis. I was diagnosed through surgery when I was 17. I have decided to have this blog, so that those in my life can get a peek into my day to day issues that affect my life in every way.

Wednesday, June 12, 2013

test post (ignore)

this is a test post seeing if i can schedule future posts and write now

Procrastination the best way to Avoid my current reality

I’ve always found myself to procrastinate, and this week is no different. I think it started out as a coping mechanism. As a very young child if I was told about something early on even if it was just letting me know we’d be going somewhere I’d start fixating on it and get myself so worked up that before we were to head out I’d be sick to my stomach, and at times it would make doing what was planned impossible at worst and at best un-enjoyable due to how sick I’d end up feeling. After witnessing this, my parents would do their best to hold off on giving me information about trips, special activities or any plans that might get me excited until the very last minute so I wouldn’t get myself worked up. Well now I find I in some ways do the same thing to myself. On one hand I like to know things early so I can be prepared, BUT if I follow through with preparing early I get worked up. So here I am 1day 23hours from being on the operating table and none of the things I wanted to have done prior to surgery are done yet. I’m trying to get myself to do them now, but the moment I start to get into the swing of things I feel this pit in my stomach, preparing makes it real. If I just continue to procrastinate I get much less worked up, of course it also means I won’t be at all prepared around the house but at this moment in time feeling terribly sick and filled with anxiety is the more present issue.

If I was smart I would have prepped as much as possible last week, when I could also take the anxiety meds I was given due to this situation I find myself in, but than there’s a good chance I’d be prepared but find myself curled up in a total meltdown all this week. Who knows what would have been best. I know that I’ve had my meltdowns this week, but not as bad as I would have expected and in fact most of my meltdowns have focused around the fact I’ve been in a shit load of pain this week and it was just too much to cope with the pain and knowing I’d also be having surgery for a totally separate health issue that could turn out to be yet another health related nightmare added to my plate.

I think I’ve done well this week considering. Monday I ran out of my pain patch prescription without cluing in, normally I can just call and he will refill them when I am in a pinch but as I haven’t seen him in 6+months his reception is acting as a road block and told me I would have to see him before he would refill the script. She also suggested I could speak to my family dr. about it, well my family dr. I can’t see for over a week and I can’t go without my pain patches. luckily I hadn’t used the additional 1/2dose patches he prescribed so I had some of those still with refills, although I didn’t have them on hand so I went 24hours with only half the medication I’m prescribed. Now instead of one full dose Butrans patch I now have two 1/2 dose patches on, works the exact same its just not a long term solution as I am prescribed the half dose patches for a reason, to use in addition to my other patch as needed. Just irks me a bit as I know if the receptionist passed along the message the pain management dr. I have would have no issue prescribing another month or so until I can get in to see him when a cancellation appointment becomes available. The medications I’m on are impossible to abuse at least in any common way that I can think of and I’ve been on them for 2years now so I don’t see the issue but whatever I will deal with this mess after surgery is over with.

If I start to think about surgery though I start trembling, it’s weird though as someone who has been but under for 4 previous surgeries none of them fazed me really. I guess because this one affects a part of my body that I connect with femininity, sexuality and my being. It’s the last part that makes me female that hadn’t yet mistreated me, won’t do into all that but all the other parts that connect to women and their “femininity” have all seemed to stab me in the back so frankly I like my boobs, and I don’t want them messed up. This surgery will leave me with a scar even if the surgeon is able to do what she hopes to and hide as much as possible. The surgery could also leave me with a very visible keloid scar, in a very visible spot (even in my regular clothing) and possibly a clearly visible size difference between breasts and then there’s the chance of puckering or other healing issues. Even if it goes “perfectly” I am still 26 and having a lumpectomy. It also means that the last part of my body that I connect femininity and sexuality to that I didn’t yet hold some grudge against is now causing me issues at the least and at the worst trying to kill me. I of course hope that after surgery that pathology comes back and the tumor was cancer free, but having had a tumor found I’m sure I will always have it haunt me that what else or how many more tumors will show in my breasts in the years to come.

Thursday, June 6, 2013

You never know how strong you are

I've always liked both variations of this quote "you never know how strong you are until strong is the only choice there is" and "you don't know how strong you are until you don't have a choice" The first one i likely slightly more but when i handed over the sharpie i totally drew a blank on the quote. I don't feel I'm in the situation of being super strong, life has shown me i am much stronger than i thought in some ways but not as much as this quote implies. Never the less i wanted to do some quote that i felt a connection too or had meaning to me, and this fit. I also fear that if my body continues on the path it is on of one issue after another this quote will have that much more meaning to me. I hope i don't have cancer, and i hope this upcoming lumpectomy doesn't alter how my chest looks too much (yes i know I'm overweight, but that could change with diet eventually, a maimed boob... stays maimed). As i was having photos taken anyways i thought i would do at least one sort-of "awareness" image/quote that would have meaning to others besides me.

I look forward to seeing the rest of the photos when Stacey is able to share them with me.

Tuesday, June 4, 2013

Arch Your Back

Well with surgery coming up I wanted to have some photo's taken, so I at least had a photographed evidence of my breasts "before" surgery, as even if this surgeon pulls off a seamless lumpectomy lets be real, I will have a scar. Though the doctor plans to hide the scar the best she can it will be for at least a couple years visible to anyone who sees me topless. For that reason I decided to enlist the help of a local photographer for some semi boudoir shots, not so much about making it sexy but pretty tops showing my assets as they are today. Photographer: Staceykennedyphotography

I was very nervous about the shoot as I hate when a camera is pointed at me even if I'm fully dressed. When I'm changing and topless I often find myself hiding from S's line of sight, it's just how I am.

We arrived at Stacey's home that she works out of when she does studio shots, and I think that fact it was a home helped me relax a little more. We chatted for a while once inside and that let me feel comfortable with who was behind the camera, something I also wasn't thinking could be possible. With me I've always been uncomfortable in front of cameras no matter now who is holding it, and no matter what photograph editing software I know is available. Sure when I weighed closer to the 100lb mark than the 200lb mark I was a but more comfortable with myself but that was ever only one on one with S and still not around others.

We started out the shoot with it being S and I as I figured family has been asking for some couple portraits of us for years, and it would be the best way to ease into having my photo taken having my sweetheart right by my side. This worked like a charm and we should have some good photos of the two of us out of it to share with family. This for them will mean being able to take down photos of us that they currently use that are between 5 and 6years old hehe (I really do avoid the camera).

Eventually my top came off and more photos were taken, will have to wait and see about how comfortable I am with them when I actually see them but I managed to relax during much of the shoot and even have fun.

The whole point of the shoot was so that I would have some nice photos to help sooth me going into surgery as I might come out looking rather different and it's a very scary thought. These photos in a way give me the ability to accept I might look rather altered in a week or so but have evidence of how I look today and that somehow helps.

I would never have expected to be needing to have part of my breast removed for medical reasons at 26 heck I don't think I'd have been able to imagine such necessity until 50+ at the earliest but here lies reality. That is the thing though, there's so much about my life and my health more specifically that I would never have thought could possibly happen to me or to such an extent. If I really dig into my thoughts about it all I know I'll cry and throw myself a pity party and that's not why I mention it. What I'm thinking about is you never know what might happen and in my life I try not to have regrets but like everyone I too have some. I find I would rather do something that perhaps others might question than later find myself regretting not having done what I wanted at that time. The "boobie photo shoot" is just that, I know some might look down on it but if I end up totally disfigured before the month is out I much rather have these photos than be wishing I had gotten them done.

Don't worry, I know I won't likely be badly disfigured (at least not with the surgeon I ended up booking with) but anything can happen. So you have to be prepared on one hand but also enjoy life as it happens and not get caught up in what others might think but do what is right for you. I don't plan on trying to be someone big and important so hell even if the photos all got out, I might be embarrassed but I'd be A-okay The best and funny moment of the evening, there I am sitting with studio lights on me being told to arch my back, Stacey clues in it sounds like she's shooting a porno with the directions she's giving me and I can't help but laugh cause although it sure isn't porn I was sitting there topless on someone else's bed in a house I'd never been to before while my partner looks on from a few feet away. It was a funny moment and I look forward to seeing how it translated to film (or digital pixels in this case).

So remember ladies, arch your back as good posture is important ha-ha.

Sunday, June 2, 2013

Lumpectomy Countdown

Fun little countdown widget for my own amusement and ability to easily obsess about how long until i will be sliced open.

Saturday, June 1, 2013

Pain Mapping DIY

I love the world of the internet and super easy printable
here there and everywhere but its annoying how often i go to find one and either it doesn't exist or the person made one close to what i want but either way to large/poorly designed to it wastes a ton of paper or is missing important parts.

This is the case when i tried to hunt down a good pain mapping printable. So now i make my own, getting input from other chronic pain peeps to make it as universal as possible, than go back to my mockup and alter as needed. This is my temp mockup of the pain map (not the printable) that will be altered tonight.

When all said and done i will have an easy to use PDF printable that i can share and others can use.

Sometimes knowing certain computer programs really helps with a chronic pain life.