How This Started

It began in November, 2016. Ironically on the weekend after my birthday.

I had noticed a wet feeling in the right side of my bra just before bed after my cat had previously jumped on it, originally, I thought it might have been my talent of gaining scratches by impossible means.

Instead, when I looked, I was met with a very dark discharge that oozes from my breast like a sticky syrup. Emotions were already high during that time, so I ignored it and went to bed.

Skip to two weeks later, the discharge hadn’t stopped and my breast was starting to hurt. I decided to do my monthly self-exam and found a small lump that was new and unusual, but was movable at the time.

It was the holidays, so it took almost a full month to get in to see my doctor. He referred me to surgical doctor. Which took about another month, because of the 2+ weeks waiting for a call and then New Years. It was very exasperating when paired with the fact the pain was getting more intense as the days went by, and more discharge seemed to be expelling out.

I went back and forth to this horrible doctor over the next 3 months. Tests, MRIs, even a CT scan. For her to try to tell me nothing was wrong with me and that she could always “go in and cut blindly.” Fat chance, lady!

Cut to yet another month going by and suddenly it began bleeding. It started out as only a little, then suddenly was gushing blood. If I didn’t already have a heavy period and was prone to injury, I probably would have fainted in the shower more than once at the amount of it.

I thank myself every day for forgetting to put her number in my phone and having to Google it. A review had been posted at about the same time of my last appointment that basically screamed what I had been saying all along. I won’t put the woman’s name on here for her privacy, but I will post what she said in her review here:

 

“Dr. Owens did not know what she was talking about for my surgery. My surgery was also canceled and I was never given a reason as to why. Now that I have done more research I have found she was trying to do a surgery that she has never done before and was not giving me proper pre-op care for it. She lied to my face. The only reason she finally gave me a referral was because we berated her about it. By postponing my surgery I may wind up with permanent damage and though my symptoms are getting worse she obviously didn’t care. I have a RARE tumor and since it’s a once in a lifetime surgery, instead of doing what’s best for me as a patient, she was doing what was best for her as a surgeon because she wanted the chance to say she had done one of these. I will never go back to this practice.”

 

This is when I decided I would drop her like a spoiled girl dropped a zircon diamond.

My mother told me about a woman she had gone to for her womanly issues that I won’t post here without her permission. This lady was the beginning of everything.

I had to go through a blood test to start, and she checked me out, even tested the discharge. Something the other hag never even thought to do. She then told me that she was going to set me up with a Breast Specialist in a place about three hours from my town. I didn’t relish the idea of going to this particular busy city, but I had been there before for previous issues, and I was desperate at the point.

 

The specialist, I have to give my gratitude. After one visit, she diagnosed the most likely thing going on with me as what is called Duct Ectasia.  I will explain what that is here:

Duct Ectasia is a chronic inflammatory condition effecting the subareolar periductal (beneath the nipple and beside the ducts) region on the breast. Left untreated it can eventually lead to the obliteration of a breast duct, but in early stages it causes the terminal ducts to ‘dilate’ (widen). When the ducts dilate, they may contain cholesterol crystals, calcification, protein secretions, and polyps containing histiocytes.
The produces an inflammatory reaction, which may result in nipple discharges. Duct ectasia is completely benign and unrelated to breast cancer. Duct ectasia can produce a sticky, multicolored discharge, almost like toothpaste. Sometimes duct ectasia causes pain, itching, and possibly swelling of the nipple, and if it progresses a mass can develop. In early stages the condition is not serious. If a mass has developed or if the discharges become bloody, it will probably be surgically removed. Duct ectasia or plasma cell mastitis accounts for about 1% of all surgically treated lesions. Due to its location, the nipple will likely have to be removed. From a cosmetic standpoint this is unfortunate, but the condition will not likely resolve on its own and left untreated can result in fibrosis and shortening of the major ducts. Duct ectasia does not raise your risk of breast cancer.

 

Now, 7 months since this began, I have some answers and am scheduled for my surgery on July 6th, 2017. I will be writing about the after-care and the days up to the surgery.

 

I also have another issue going on that began right before going to the Breast Specialist that I will talk about and hopefully track in a different post! Until then!

 

Hit Hard

So I have already been having a bad day. Woke up, no voice, and the seawitch still left me with defective legs! That bitch!
Day continues, and I end up at Sonic, where an old man rear-ended my car while waiting in line for our change. He was sitting perfectly fine and then all of a sudden rammed right into our backend hard enough to send my body into one hell of a flare.
I was shaking, everything that touches hurts. Touching my back sends it into spasms, I have to walk to the bathroom with my crutches.

Now here I am, in bed, in pain, with a 101 fever and KT Sports tape all around my back like I’m trying to weave a basket with it. Coughing is like someone rattling my cage of pain. It’s hard to breathe. I stubbornly find myself thinking the ER is the last place I want to go. I’m a 22 year old, and my symptoms are clearly faked for drugs, as several nurses have said to my face.
In the state I live in, good doctors are few and far between. It’s going to be a long night, and I just want it to be over.

When Fiction Is All You Have Left

When the stress is so high and no one in this world knows what you’re going through. When words are being said and options are taken away. When those who you thought were by your side through thick and thin only wanted to be there for the thick of it. When you are dangerously teetering between trying to hold and and keep going, and wanting to give up all together.

You lose yourself in the world of fiction. Characters that don’t exist anywhere but in these worlds become your best friends. Your comfort, your confidantes. You begin relationships with them in your mind where you don’t have to hide or pretend. They’re your best friend, and they won’t tell anyone the secrets you hide from others to keep yourself somewhat sane.

These fictional characters are with you all the time. Through your good times, and especially your bad. They pick you up when you’re low and cheer you on during your brightest moments. They encourage you in ways someone who doesn’t actually exist should be able to.

When the would becomes too harsh, and the real people around you become cruel, you know that these fictional characters are there, guiding you to happier times.

I think it’s sad that we have to feel so invested in a world not our own to find comfort that we cannot find out in reality. I wish that people would take a moment to think, just a single second, if what they were doing or saying was harming the person in any way.

It’s been 2 years for me and my illness, still undiagnosed. I have found escapism in fictional worlds, especially lately. So, please. Just take a brief moment and think about someone else and what you’re asking of them, and, is it too much?

Weakness

Today I have extreme weakness in my legs that has lasted a full 12 hours now. It is even difficult with my cane. Those in my neuropathy groups I’m in tell me to go to the ER. I don’t see what good it would do since they won’t do anything about my sudden temporary paralysis, either. I’ll get stuck in a hospital overnight or longer for nothing but frustration. I refuse.

Pain and Emotions

My legs have been giving me a lot of pain lately. They still don’t respond to touch, or heat, or cold. But they seem to make their own pain, even though they’re numb. 

I try my best not to show my pain, but I still have to try to limit myself. No one seems to understand this, and it’s taking a toll on my emotional and mental health. 

They expect me to do just as I did before, but it’s just not possible. Trying to ignore and push away my condition does not help. I need to accept, and try to work my way around my life so that I can live it. 

This, in itself, is a very unpopular opinion. Mostly according to my mother, I shouldn’t “give in” to my condition. Ever since I got my cane, that is a phrase I hear often, between the scoffs and the eye rolls and being told I should do things I am unable, then being asked in a nasty tone why I can’t.

I learned that even just holding off getting my cane has done more damage than good for me. The fact that the people around me would rather me be in more pain than get what I need to ease it just because they think somehow that means I’ve “given up” speaks volumes. 

Life

Life is an unpredictable whirlwind that picks up and throws anything it wants at you at any given time. Just when you think you’ve just about balanced out your physical and emotional hurdles, it throws something new at you. 

You like to think that the breeze is finally light, the air is nice and crisp and maybe things have settled. And then suddenly a cow is thrown past you and you’re sucked into the vortex. 

Please tell me that the other things I’ve thought to have finally gotten through in my life won’t come back to whollop me in the face either! Does anything you fix stay the way you need it to? 

The new aggravations being hurled at you, when the old ones suddenly come at your back, you end up spiraling down and it feels as if you’ll never stop. 

This is my life now. I think I’m growing a phobia of being happy. When I’m happy, something happens. When I think I’ve got something to hold on to, it’s yanked away. When I think I’ve sewed up all of the wounds, the stitching comes lose. 

I know I’m not alone in this. Join me on this ride called life. We can have tea and cookies in the whirlwind. 

Until then…

Dreams

Have you ever witnessed the moment you realize your dreams have shattered? Have you ever been able to hear the very moment each crack is placed until it simply explodes in your mind’s eye?

Lately, I have come to the conclusion wishing is for children. Dreams are what kept our hearts warm, our lives hopeful. Most recently, I’ve begun feeling quite down with myself. Perhaps it’s due to the realization I’ve never had a fruitful dream in my life, all my wishes ungranted, and yet, here I am. A mere shell of myself in regards to whom I thought I was; a charming, loud and strong girl that could take on just about anything and come out on top.

Alas, that’s not who I am, perhaps not even who I was. I believe we all, in human nature, are weak. We’ll pull up our strengths just long enough to hold out for the next obstacle, but should the tower be too large to climb, we crumble at the stone at our feet.

I realized this when I found the oldest yearbook I have of myself. In kindergarten, I was bullied, but happy. I didn’t pay much mind to their words or actions then, and I stood up for those who had it even worse than I. Now, as the tables have turned, I am met with silence and myself. The cane I walk with is the most I hear, and though the one person I love most tries, they cannot understand, and there are still issues therein between us we need to work out.

Why am I writing this? Because I looked at the yearbook picture of a hopeful girl with big dreams and lots of guts and wondered if she would cry to see me now. Would she look onto her future self with disappointment and tears in her eyes? I no longer can carry large, heavy things, I have to walk with a cane inside the house, I often forget things now and am in constant pain that rides up to excruciating waves without warning. Knowing that I might fall and not get back up, what would little me think? I look at this picture and wonder…

 

Canes and Things

I’ve recently been using a cane. It was my mother’s old one that I had to fix, and it’s still not the best, but I’m making due until the one I ordered comes in. I’ve only very recently got it fixed enough to where I can use it, and I’m finding walking a lot easier. However, I’m also immediately finding the world is crueler than I previously thought.

I only just turned 21 on November 6, 2017. I use a cane now. Of all people I did not expect to have a negative impact from, was my eldest sister, who is also in the medical field. Normally she is asleep because she works nights, while I need to do things in the day. Yesterday she stayed up for awhile because she’s off for the weekend. 

In a very disapproving tone, she scoffed asking me why I had a cane. It’s not the first time she seems to expect me to be able to do the things I used to be capable of, but never has she had that disgusted tone toward me about it. She takes pills for her anxiety. I use a cane to walk better so I (hopefully) don’t fall over anymore. I still have some issues while taking my big brute of a dog out on a leash, but that’s only because he’s excited all the time. 

My sister hurt me in this way. I’ve held off getting a cane far longer than I should have, and I realized that when I began walking with it. With her words, I found myself locked in my room fighting my own tears and staring at my legs, mentally screaming at the universe to ask why. Why me? Why this? Why doesn’t anyone understand? Why am I always the problem? Why can’t I fix this? Why can’t I get answers? Why can’t I get a big official stamp on a big billboard saying that I’m not lying or crazy? I wonder if that would even work, considering they have seen my medical records and what it all says in plain-as-day wording. Polyneuropathy. Why do I have it? Where did I get it? I hope to find the cause soon. 

Until then…

The Shakes

A “fun” thing my legs have been doing lately is shaking like crazy. Painfully. I’m not sure what triggers it, but it continues getting worse as the days go by… 

Hoping to get in to see a neurologist soon…

Feeling Down

There have been a lot of personal things stacking up to add to my increasing health issues. My dog had another seizure, though thankfully not as bad as the first. I had to cut someone I considered a best friend from my life. My life is not, by any means, going according to plan… My relationship has gotten better in some big ways, but worse in some small ways that eat away at my insides like a virus I can’t shake. 

Sometimes I question why this all came to be. Why me? Why them? Why this? 

The other day I simply came to the realization that I will, in fact, be in a wheelchair at some point of my life. I’m already questioning if I need a cane already. My 21st birthday is in a few days, at the beginning of next month. I don’t see any celebrating happening. Not for me. 

Today I learned the extent of being unable to feel sensation in my legs. A large piece of glass was evidently on my shoe for at least half the day. I, questioning why I felt so off kilter, was confused by it all until I took my shoes off and found it. I had to put gauze and tape on the wound, as it would not stop bleeding. I can’t feel the pain, but the wound is there anyway. 

I’m hoping to find help. I need it. 

Until then…

Dreams to Ashes

I feel… Weak. I just avoided stepping down from a place I would have no problem with before. I used to jump to climb things for fun. I’ve been trying to walk to keep my muscle tone in my legs, but I think in turn I’m somehow making them weaker, and more numb with every passing day. The pain never ends, the numbness is almost comical. My balance has all but left me. I try not to rely too much on the pain cream I’ve obtained to soothe my nerves. The past few times I’ve gone for a walk, I beg to whatever deity that will listen that I don’t fall. 

My neurologist is non-existent. The high-rated one I tried won’t take my insurance. None in the area are any good. I’m not sure where to turn. I’m not sure who can help. I fear I may have to start using a cane soon, and what of by the end of it all? By the time I’m finally seen, will I be forced into a wheelchair? 

Knowing all the things I love, and all the dreams I had, am I okay with the idea? No. Already, only one person close to me even cares enough to know I need help, and I feel as though I’m a burden for putting all the weight on them, even though it’s out of my control. 

Everyone else insists I’m fine, or one in particular person insists they have it too, and it “isn’t as bad” as I say it is. 

I’m tired of it. I’m tired of this. I’m just tired. Sometimes I think my dreams seem sweeter. Even with my gory, bloody nightmares. At least I could run. At least I had some form of control. At least, by the end, I could always find a way out. 

I feel as though, I am watching the life I always dreamed of, burn slowly to ashes right in front of me; and no matter how many tears I cry, the fire won’t go out.