Monday, March 3, 2014

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

Sunday, March 2, 2014

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

Saturday, March 1, 2014

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

Saturday, February 15, 2014

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.

Thursday, November 14, 2013


Today is 5months post-op Lumpectomy. One would think this should mean I'm healed, and my arm should be back to full use. Yet neither are true, i still have a wound healing (all be it small now), and i don't have full range of my arm, tons of nerve damage that wasn't caused by the surgery and soft tissue damage caused by both the surgery and more-so the post-op infection that ravaged my breast for 4+months...

Thanks so much surgeon for trying to sweep it under the rug that was exposed to an antibiotic resistant strain of Staph during my surgery..... where as a real thanks to the dr's who saw the mess didn't ignore the 2"x1"x4" open wound i had.

(This is about a month after the wound opened, this is after the wound packing was removed but before the home-care nurse cleaned out the wound. It looks disgusting, gag worthy even. Now please try imagining having that on your body for 4months, and someone coming in each day to clean it and than slowly push inside cotton ribbon (or other packing) to fill the wound, so now your breast has a large hole but as literally been stuffed and you can feel it. The nastiness you see in the wound, yes that's chunks of puss deeper in the wound as it acted like a bowl there was much more that only would come apparent when arigated by sailine and would slip out.)

Thanks to it being ignored for so long with an infection i have a far larger area of no feeling on my skin (mapped the numb areas all along), yet i feel pain in my breast most of the time now, often enough to distract me or make me clutch myself instinctively, i also have a very large amount of nerve damage in my breast that leaves me with a burning feeling most all of the time if it weren't for a high dose of a neuropathic pain medication, even still i feel burning at times in my breast and into my armpit.

Also they suspect the fact i still have a fever daily after the infection is gone is thanks to all the "trama" my body went through this summer. My body's temperature regulating is now out of whack so i have been told it may take months for my temperature to come even close to what my normal baseline temp was originally.The extended fever also seems to have caused a murmur that i didn't have before.

Not exactly what i was expecting 5months post-op

Sunday, September 22, 2013

100 days Post-Op Lumpectomy

Today marks 100days since i had my lumpectomy. One would assume this should mean i'm all healed up, i'm free of breast/arm pain and that my scar should be perhaps starting to fade.

You would be wrong

In reality i still have an open wound that requires daily care (saline irrigation, re-packing with products designed for tunneling wounds as mine was, and bandaging change), i still have a great deal of pain in my breast (both nociceptive pain and neuropathic pain), and of course my scar isn't starting to fade as the wound is still open.

Bonus: i still also have a fever that i've now had for at least 2+months now (started taking temp one day i felt crazy feverish, that day i was 102F when my norm is 96.6), and quite likely still have an antibiotic resistant staph infection (not MRSA, this one has another name cause its sulfate sensitive) deep inside my breast despite far to many courses of antibiotics, so much so that i've now been told i have become immune to the only antibiotics the Staph infection WAS sensitive to. This means if the most resent culture swab taken shows i do in fact still have an infection there is no way left to treat it to my understanding, so i have to get better "on my own", and that this persistent fever and pain are "my new normal"

So glad the dr's felt the need to do an excisional biopsy (Lumpectomy) that ended up all being for a lump that was simply scaring.... Not.

Now after having that scar tissue lump removed that was less than a 1cmx1cm large, i am left with a ball of scar tissue in my breast thats got to be close to 4cmx4cm and who knows it may still get bigger as i am not healed yet.

I keep meaning to go into more detail on this blog about all the courses of antibiotics, about the wound how it would heal some than stop for weeks on end, and in time about the "care" i was given by my surgeon. I want to do this if even only for my own record of everything, but it means digging into something that can make me very upset, and crushed. In time i hope to be able to without me becoming a mess, perhaps that will be possible once i'm healed, time will tell. For now its about trying to ignore the situation, do everything "right" i can to encourage my body to heal on its own and try to cope with the pain in my breast (in adition to everything else, yay) the biggest issue i find is it messes up the use of my left arm to as the pain radiates from my breast, into armpit and beyond so my left arm is super weak at best and to soar to move normaly also.

Its such a mess.

Monday, September 9, 2013

What do you say about months of infection fighting

i hadn't written as i wasn't sure what to say, i wanted to share all the good news of my 2week post-op appointment, but by then my breast was getting more sore than i was 1-4days post-op and i didn't want to jinx anything as the surgeon wouldn't look at the now very tender wound that was leaking blood and fluid but hadn't until 11days post-op so it concerned me but didn't seem to concern the doctor at all, in fact she wouldn't look at it.

At that appointment i also learned i had surgery to discover a lump that was cancer free, in the margins they also ended up with a 2nd lump that was due to fibrocytic breasts that i already knew i had.

Turns out that leaking was the build up of an antibiotic resistant staph infection up before the infection tunneled fully through my breast in 2 directions giving it self a way to drain but not before it made it look and feel as though my breast would burst open, and i guess in a way it did.

I will go into all the details when i can mentally go through it all, and when i have the time as it will be a long post.

The key is i am now on my 87th day since i had my lumpectomy and i still have a hole in the side of my boob that's open to the world, large enough to stick the tip of my finger in, sure this is way smaller than 6weeks ago but its there none the less. Despite the fact i am currently on my last day of this course (10days) iv antibiotics and hooked up to a pump that gives them to me 3x a day i believe i still have an infection. It will be unable to be tested for yet* the fact i have a fever off and on and at times up to 101F** and much increased pain again in my breast along with the reality my healing has started to slow dramatically of perhaps stall again makes me thing this stupid staph hasn't left yet. In an hour me and my mom will chat and go over the game plan as to what i do now, do we go back to the place where my infection seemed to be improving when i was admitted for 4days (even though its an hour from our home), do we talk it over with my family dr who openly admits much of this is beyond him... (the other options i won't go over as in my head they are not options anymore and i won't go into that to protect those with many years of education and great layers likely)

I will go into details about all of the last 87days + when i can do it but for now this is my update.

* after being on antibiotics a swab culture will likely read that nothing is growing even with a present infection if it hasn't been long enough since off the antibiotics as they mess with the result. In most people that would mean a simple blood-test would do the trick as if your white cell count is up, it means you have an infection, if no rise no infection. The issue here is EVERY time i've had a swab and blood taken the same day the blood shows no white-cell count rise, yet culture keeps showing the exact same infection so i now know that my white cell count is not a reliable test, and seeing as my family doctor has witnessed these results to he's gotten to the point he doesn't even try that test just the swab.

**with a normal for me at 96.6F where as most of you reading are likely at 98.6 that means what 101 is to you is more like 103F to me

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.