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.

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Face of Me

I express myself through many ways. Traditionally – with my face. And through my art or fashion. Through photography and through my laughter and tears. Through my kindness. Reminding myself that no matter how dark it is, there has to be moonlight somewhere. The single tiniest positive in a sea of negativity is the thread to hold on through the storm. I’m trying to wrap that sucker around my waist and hold on. I hope you are too.

Trouble

Today, I can already tell is going to be a problem. Last night I couldn’t get to sleep no matter how hard I tried because I was in so much pain. This morning, my legs still hurt, but are wobbly, yet stiff and heavy feeling. 

Yesterday I was tripping through the store. Things I progressing, and I don’t like it. It makes me worry that my next “episode” -as my mother calls it- might be permanent. 

I can no longer feel the ground I walk on at all, even when I attempt to stomp my feet. Down here in the boonies, that’s quite dangerous. My foot got caught in a hole recently and I had to use mostly my arms to get it loose. I was walking my big dog, who helped by sitting next to me and waiting. I think he thinks we can help each other through our “illnesses” as I see many people call polyneuropathy. 

My pooch might have epilepsy. He had a grand maul seizure once and I’ve been giving him medicine every day and night. Not one since, but he seems to be concerned with everything after the incident.

Next week I go to see the incompetent doctor my primary sent me to once again, to gain any results and papers I can. Then, I will be calling a well-rated neurologist in my usual doctor-stop of 3 hours away. 
I’ve done research both online and in a few books. I plan on obtaining more when I get the chance. These doctors aren’t going to tell me that nothing is wrong. I’m sick of hearing it. I’m struggling every day just to hope I can still move in the morning. If that was them, they would be raving at anyone who would listen and demanding something for it, and then compensation for the length of time to get it. 

How many times do people have to console me from the ground before someone admits something is wrong? Is it that difficult? I didn’t even know I had polyneuropathy until I kept reading in my records “has history of” and got curious. Now, on a race to figure out when, why and how, many doctors are going to be finding me as a demanding annoyance. A ghost that constantly calls and pokes and checks up on every little thing. 

Doctor’s today need to learn that they work for the patient, not the other way around. Do not hold back information, do not say nothing is wrong just because you don’t know how to deal with it or don’t want to. It’s about the patient’s health. Not your paycheck. Get over it.

Yesterday

So, let’s talk about yesterday. 

I went to this supposed neurologist. I get there, and he checks my reflexes and has me walk a short distance and then tells me “tests” are normal. Also, tells me that “there is nothing that can only last hours and stop.” 

Haha, no, bub. There is, I’ve read about numerous things. Amongst these “tests” he put a vibration tool on my legs and on my way out, my legs start getting sore. Like electricity was zapping through my veins. It continues to get worse until I was in tears and swallowing screams. My concerned boyfriend then pointed out that my legs were exceptionally pale, but my toes were bright red. Almost as if all my blood rushed to the tips of my toes and stayed there. 

Since then, the pain has died down a bit, but it continues to get more painful to walk. Every step I take feels like my bones are breaking crack by crack. 

I looked up this “nuerologist” on Health Grades. He had a rating of 2 stars, and according to many reviews, he refuses to touch men. Which is why I am very glad my boyfriend came back with me. 

He was rude, impatient, and didn’t like questions.

I have my nerve conduction and an MRI on my spine tomorrow morning, but something tells me that I’ll be ending up finding somewhere else again. 
If anyone has any idea what specifically could cause my issue, thoughts would be highly appreciated.
Temporary paralysis, numbness, inability to move or feel my legs mid-thigh down. No senses. No movement. Legs pale and ice cold.

When I am able to move again, a tingling feeling happens in my legs and after about 10 minutes I can move them slowly, but weakly again. Longest episode being 9 hours as of date.

Now with pain when I walk and increasing.

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!