Thursday, August 27, 2015

I did the deed...



Today I filed for disability.
 
 
I have been planning on it for months now, and I haven't had employment in over a year. My entire family has been asking when I was going to file. My friends have been asking when I was going to fine. The only thing I was waiting for was for my doctor to bring it up. I have decided that that was most likely not going to happen, so I decided to proceed with it anyhow and file the paperwork.
 
I know I have a long wait ahead of me to be approved. But, for some reason, its very bittersweet. Its like... even though I know that I am disabled, its becoming more real. Even though I knew I wasn't able to work, I am putting my faith in the government to keep me financially alive and able to have income.
 
 
One day at a time. I just need to go submit my proof of birth, some medical records, and then apply for state disability.
 
wish me luck <3

Monday, August 24, 2015

Overworked myself

It's one of those days....

 Its horrible that I can over work myself just cleaning the house.... I still need to do the kitchen floor....

Maybe its naptime/quiet time for the girls so I can rest before tackling the floor....

 I can't wait til I see my doctor next. Something has got to give....


Saturday, August 22, 2015

Western Wild Fires

With all of these wild fires in the state & surrounding states, many people are in my thoughts....


I woke up this morning to the smell of smoke from a fire about 50 miles away from me... Its definitely a hard time right now full of a lot of stress.

People losing their homes, their lives, the animals losing their homes and lives..... I am in a saddened state. If anyone needs anything, I will do my best to help.


Thursday, August 20, 2015

Fatigue

Today has been one of those days where I am suffering the fatigue... I don't have the energy or motivation to do anything. All I want to do is sleep. So, needless to say- it is a very lazy day in this house.

If you live with Chronic Illnesses, chances are that you know how I am feeling. But, those that do not probably just think I am truly being lazy. I haven't done any house work today, my kids and myself are still in pajamas, movies playing all day.... And yet, I am unable to nap. I feel like I am close to a breaking point. It seems like no matter how hard I try to motivate myself to at least unload the dishwasher, nothing is gonna give.

I sleep about 10 hours a night on the nights my insomnia gives me a break, and even then, it's as if I can not get enough sleep.

I hate my illnesses, and I just want to be normal again...

My birthday is in 8 days.... And I am not planning anything....  It sucks that it takes all of my energy to get up, shower, do my hair and make up, then try to leave the house....

Happy birthday, right!?!

Happy Birthday wishes welcomed.


Tuesday, August 11, 2015

Another Day, Another Appointment...

 I had another appointment with my neurologist today....

There is no ifs, ands, or buts about it. I have Multiple Sclerosis.


I also have significant disk degeneration.

My doctor found a spinal cord injury and said that I have an excessive amount of spinal fluid as well in my lower neck/upper back area that she wants to continue to monitor.

She also found the cause of my neck pain. Not only is there lesions in the area, I have a deformed vertebra and a disk that is oddly shaped and is begging to bulge out. Both of which she said can cause me pain.

She stated that the lesions I have in my back is most likely why my finger tips are numb. She said that she hopes the feeling returns, but there is a chance that it never will.

So, whats the next step with the MS treatment??
Tomorrow, I will be getting blood work done, and within the week I will be receiving another vaccination. This time for chicken pocks. Sadly, I have no choice. In about a month, I will have health care professionals at my hours for about 6-7 hours while they monitor me for my first dose of Gilenya. I'm a little nervous about it, but something's gotta give, right???



Until next time, 
We are not alone!!!


Fight Multiple Sclerosis. Let's Find A Cure!!

Masks that we all wear...



A mask is something that we all wear in our daily lives. At work, with friends, with family, and even with doctors. But when can the mask come down?? Mine comes down at night, when everyone I know is asleep. When I am free to let my emotions run wild. Night time is my time to recover from the thoughts that have been running through my mind. When do you let your mask down? When do you allow your mind to recover?

Here is a poem I found perfect for this post...

Don't be fooled by me.
Don't be fooled by the face I wear
for I wear a mask, a thousand masks,
masks that I'm afraid to take off,
and none of them is me.
Pretending is an art that's second nature with me,
but don't be fooled,
for God's sake don't be fooled.
I give you the impression that I'm secure,
that all is sunny and unruffled with me, within as well as without,
that confidence is my name and coolness my game,
that the water's calm and I'm in command
and that I need no one,
but don't believe me.
My surface may seem smooth but my surface is my mask,
ever-varying and ever-concealing.
Beneath lies no complacence.
Beneath lies confusion, and fear, and aloneness.
But I hide this. I don't want anybody to know it.
I panic at the thought of my weakness exposed.
That's why I frantically create a mask to hide behind,
a nonchalant sophisticated facade,
to help me pretend,
to shield me from the glance that knows.
But such a glance is precisely my salvation, my only hope,
and I know it.
That is, if it's followed by acceptance,
if it's followed by love.
It's the only thing that can liberate me from myself,
from my own self-built prison walls,
from the barriers I so painstakingly erect.
It's the only thing that will assure me
of what I can't assure myself,
that I'm really worth something.
But I don't tell you this. I don't dare to, I'm afraid to.
I'm afraid your glance will not be followed by acceptance,
will not be followed by love.
I'm afraid you'll think less of me,
that you'll laugh, and your laugh would kill me.
I'm afraid that deep-down I'm nothing
and that you will see this and reject me.
So I play my game, my desperate pretending game,
with a facade of assurance without
and a trembling child within.
So begins the glittering but empty parade of masks,
and my life becomes a front.
I idly chatter to you in the suave tones of surface talk.
I tell you everything that's really nothing,
and nothing of what's everything,
of what's crying within me.
So when I'm going through my routine
do not be fooled by what I'm saying.
Please listen carefully and try to hear what I'm not saying,
what I'd like to be able to say,
what for survival I need to say,
but what I can't say.
I don't like hiding.
I don't like playing superficial phony games.
I want to stop playing them.
I want to be genuine and spontaneous and me
but you've got to help me.
You've got to hold out your hand
even when that's the last thing I seem to want.
Only you can wipe away from my eyes
the blank stare of the breathing dead.
Only you can call me into aliveness.
Each time you're kind, and gentle, and encouraging,
each time you try to understand because you really care,
my heart begins to grow wings--
very small wings,
very feeble wings,
but wings!
With your power to touch me into feeling
you can breathe life into me.
I want you to know that.
I want you to know how important you are to me,
how you can be a creator--an honest-to-God creator--
of the person that is me
if you choose to.
You alone can break down the wall behind which I tremble,
you alone can remove my mask,
you alone can release me from my shadow-world of panic,
from my lonely prison,
if you choose to.
Please choose to.
Do not pass me by.
It will not be easy for you.
A long conviction of worthlessness builds strong walls.
The nearer you approach to me the blinder I may strike back.
It's irrational, but despite what the books say about man
often I am irrational.
I fight against the very thing I cry out for.
But I am told that love is stronger than strong walls
and in this lies my hope.
Please try to beat down those walls
with firm hands but with gentle hands
for a child is very sensitive.
Who am I, you may wonder?
I am someone you know very well.
For I am every man you meet
and I am every woman you meet.
Charles C. Finn
September 1966

Saturday, August 1, 2015

One thing after another...

Hi everyone.

As I believe I stated in a previous blog, I had an MRI (actually three of them) on the 29th of July. 

Well, my neurologist called me yesterday while I was at the park. She called me directly to go over my results. I have 3 lesions in my spine- further indicating Multiple Sclerosis. She also stated she believes that the numbness I have been experiencing in my finger tips since May is caused from the lesions in my Spine. Joy, right?

She also told me that I have some disc degeneration, which I knew from an x-ray a few months ago. Nothing new there, as far as I know it hasn't progressed- but I will as her on the 5th. 

Now for the fun stuff......

She informed me that she found an abnormality in my spine, and asked if I have ever fallen on my back. Which I have. She said she would go over it when I see her. But, what could of been caused by a fall aside from fractures? Anyone have an idea?

Lastly, she informed me that the abnormality she had spotted in my previous MRI (the pituitary glad abnormality) has not changed, but she is certain of what it is now.  She said that I have a Ranthke Cyst. From what I have researched it is basically a non-cancerous tumor. She said she would give me more details on it during the appointment, but informed me that I will be receiving an MRI every three months to monitor it. 

Fuckity fuck fuck.









You can find more details on the Ranthke Cyst Here