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.

Maybe It’s Mind Games

My leg issue continues getting worse. Every day is a struggle, that I have to push through. Not because I want to, but rather that I’m forced to. It’s a wonder I don’t talk about my issues anymore. 

I’ve been tripping a lot. My legs hurt like hell, like I’m wearing thigh-high socks surrounded by constricting thorns that get tighter and tighter. It’s harder to walk. I get tired easily. 

I’m terrified of falling in a public place and not being able to move. I’m terrified of taking showers, because I’ve fallen before. I shake every time the shower head spray comes on. Showers used to be my happy place. 
My boyfriend got me a sketch book and pencils because I desperately needed an outlet and my niece and nephew took hold of my old sketchbook, and used all my paints and clay. It’s been better since I’ve drawn, and it’s been a long time since I have been able to draw well. 

My emotions has been more stable, but I’ve noticed more things that I can’t tell is coincidence or an omen. Everywhere I’ve looked lately -yes, everywhere!- I have seen videos or articles or just in daily life many issues with people and their legs. I have seen more wheelchairs and motorized wheelchairs in these 2 days than I have in my entire lifetime. 

Coincidence or omen? I’m not sure, and it worries me to ever find out.

Records

Heading to my doctor to get my Medical Records to see exactly who, when, and why I was diagnosed with polyneuropathy and was never told anything about it. I looked into it a bit, and apparently that’s where I need to start. 

After I get these things sorted, I will be making an appointment – you guessed it! – 3 hours away. Back to the city where I want to scream in both anger and terror as people attempt to drive each other off the road. 

It’s going to be one hell of a ride, yet again. Will continue to update.

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.

Currently Diagnosed

Today I wanted to talk about the conditions I currently have, and if I remember, when I found out about them and how. 

I’ll try to start with beginning of me being a problem child for the first time ever: In my infant years, as my mother told me, one day I suddenly spiked a fever out of nowhere. Just at random. However, it was so high, that my body went into shock and I was having seizures. I’m not sure how things were after that other than being told my sisters ran all over the place while my mother took me to the hospital trying to get to my grandmother, and ran to the hospital before my grandmother could get into her car.
Now, the next thing would be my athsma. I was fully “diagnosed” when I was about 10 years old. However, upon looking into my medical records when I was about 15, I found that years ago the upper left of my lung collapsed. I was never informed, my mother was never informed, and I went untreated at 7 years old at that time. Since then, I have had to have a steroid inhaler and then a nebulizer because they got tired of me going to the ER for breathing treatments when my inhalers just didn’t cut it.

Not long after being diagnosed for my athsma, I was later plagued by a strange feeling in my health. Suddenly, my world would distort and move, I even felt sensations that weren’t there. Like that one time it felt like the ground was Jello and my feet kept sticking to it. That was a trip. 

Honestly, every doctor I went to at that time kept insisting I got ahold of some sort of bad drug or something, but every time they did a blood/pee test, of course, nothing was in my system! Finally, finally, I found a doctor that informed me of Alice in Wonderland Syndrome. He thought it might be caused by my migraines that used to be very frequent and violent in my younger years. My migraine medicine my doctor had given me never helped when my migraines we’re that bad. Then, they sort of just went away and I was stuck with Alice in Wonderland Syndrome. 

Oh well, moving on!

Finally, I will inform you of a rarety I first noticed only about three Halloweens ago. Halloween will be remembered as my CU anniversary. CU, is short for Cold Urticaria. 1 in 100,000 people have it. There isn’t a lot known about CU. All I know, for instance, is that the cold makes me break out in hives and itch. Slushies make my tongue swell. I am 100% allergic to the cold. The air conditioning this summer has been making me itch more than I care to analyze. It has gotten to the point in which rain makes me break out.

Most doctors have never heard of it, but please, look it up and spread the word. It helps us with Cold Urticaria let our doctor’s know that we aren’t crazy or “just making it up.” 

Aside from my recently obtained duct ectasia diagnosis, and only-fate-knows-what is wrong with my legs, that is it.

Feel free to address me as Problem Child, I’ll be okay with it. I’ll update as things go on and days go by! Until then!