Embarassment

Hows this for an embarassing story....

For the last 2 or so days, I have been deaf, like I have lost 90% of hearing in both ears. I have taken hot showers, ued a syringe of hot water in my ears, tried everything I could think of to clean them out in case it was indeed just a wax build up. Nothing worked. So I went to the urgent care as per my nuerologists recomendation.... and low and behold, it was a wax build up. They cleaned my easrs out with peroxide and hot water, and I could hear the world again.... got it, invest in peroxide.

Update on my life...

After taking a week vacation to the complete other end of my state to visit my family, I have been worn out. I used all of my spoons, and I was beginning to feel like I was using next year's spoons... I ended up in the er 4 days after I got back because of crippling chronic migraines. They loaded me full of medications. Everything from a ton of steroids, to antiinflammatories, to anti nausea.... The steroids have had a horrible side effect causing me to lactate. (Been going on for 4 days now with no sign of slowing down or stopping.) They made me feel like a billion bucks.

The day after my ER, I had an appointment with my rheumatologist and my neurologist. The rheumatologist upped my gabapentin and prescribed a sleep aid... Which has been amazing. I finally slept a full night, and I had energy the next day. Only downfall is the really weird vivid dreams that give me anxiety attacks. But, a cigarette makes that all better. The neurologist prescribed me medication to release pressure in my brain to help prevent the migraine. And it also promotes weight loss. Which would be nice considering I've gained all the weight back I worked so hard to loose thanks to the chronic illnesses.

Another New Diagnosis...

Today I went and seen my Rheumatologist for the first time.

 

 

I was in the office for less than an hour. Told him of my family medical history, or well... what little bit I know. Told him of my symptoms and my pain, and that I am never not in pain. He did some poking and prodding and bending of my body... He gave me some answers.

 

 

First, he said that we will not diagnose me EDS type 3, however- it is still possible.

Next, he diagnosed me with Hypermobility Syndrome, he proceeded to go on to tell me that some people believe that they are one in the same thing- but he is still on the fence about it so he was just going to leave it at me being hyper mobile since my skin doesn't stretch much...

 

Lastly, he told me I have fibromyalgia and have me a formal diagnosis for it and he gave me a prescription to help the pain I experience. I will be returning to him in about 3 weeks for a follow up.

 

I am super happy that I am finally getting answers. I am happy that the doctors are finally listening to me, and believing me, and doing something about it. I am happy that even though nothing I am being diagnosed with is curable, it will not kill me on its own.

 

So guys, here is to another day.

 

Until next time,

Amber

 

 

P.S

If you know there is something wrong with your body, or your mind... don't give up the hunt for answers. Eventually someone will give them to you.

 

 



Is orange really the happiest color??

 

     Frank Sinatra once said that "Orange is the happiest color". I would have to agree with him in some ways, and disagree in others.


Orange is the color of sunsets, of oranges, of falling leaves, of apple cider, of pumpkins, of sooooo many wonderful things....

But, to those with ADHD, COPD, Kidney Cancer, Leukemia, Lupus, Melanoma, Multiple Sclerosis (like me), RSDS, Self-Injury Awareness, SPD, Spinal Cancer, or Prader-Willi Syndrome... it is a sentence. A sentence to aware others of the battle we are fighting. We wear orange to raise awareness in hopes that more people understand what we are going through. To us, orange is not a very happy color.

 

Orange is who we are. Orange is what we are.

 

 

I ask that if you are a supporter of different illnesses, invisible or not, look into the ribbons or the clothing that people are wearing. Sometimes it is more than just a shirt. Sometimes it has a deep meaning to the person.

 

 

 

 

There are tons of different colors, and ribbons, for those who are fighting illness. You can see more if you click HERE. I ask that you pay attention to those around you, take the time and ask questions if you see a tattoo of a ribbon. Learn about their battle.

 

 

 

Until next time..... Lots of love and understanding.

 

 

 

 

Kittyqatz

AKA- Amber

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

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....

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.

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.

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

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

:( we lost one...

:(

So sad, shortly after my last post momma kitty popped out baby number 5.... it didn't make it... rip little ball of fuz :(

Late night rambling...

It's currently 3:30 in the morning, and I am pulling an all nighter because my cat is having kittens. And my cat is attached to my hip. She panics every time I move away from her..... So, lucky me, I get to suffer through the lack of sleep, and the pain of laying on my hard kitchen floor, just so she can be at peace.... Spoiled kitty.

I have 3 MRIs scheduled for Thursday, one right after another. I'm not sure what exactly they are looking for, but I'm learning to expect the worst, hope for the best...

Two nights ago, a fellow atheist in a fb group I have been in for a couple years passed away from falling down the stairs. It worries me just how fragile our bodies truly are, and how much more so the bodies with chronic illnesses are. Makes me wonder and worry how much longer I have on earth. It makes me wonder how to prevent the undeniable truth, that one day everyone dies.

Sorry, I'm tired so I am rambling. Hopefully momma kitty pops out the last kitten soon, I need sleep desperately. Tomorrow is gonna be hell if I don't get at least a nap in before the munchkins are up...

The pain is real...

Tonight is not a good night.... I'm in a lot of pain, but just laying here dealing with it. If you know me, you know I can handle my pain well, that it takes a lot to make me cry.... well. I'm about at that level. My lower back/tailbone area (where my l6 is) is the main source of the pain, but its radiating into my hips and into the back of my thighs..... I'm gonna make a doctor appointment in the morning, I can't take much more of this pain and them telling me they can't do anything for my pain. And I swear if they try to send me to physical therapy again, I may have to smack 'em.

Hope y'all have a good night... I'm gonna lay here and probably read a book.... :/

Not my day...

It hasn't been my day... So I felt like singing about it. My stress levels are through the roof, and I just needed to let it out...

Magic...

It seems that no matter how down in the dumps I am, there is ALWAYS one magic trick that makes me feel better...

Playing dress up.

Whether it's in a little black dress, some sexy lingerie, or just putting on my favorite eyeliner.... feeling sexy makes me feel like I can conquer another day.

Anyone else the same?

Note to Self:

Inhale, Exhale... that's the way it must be.

With no cure, no true treatment... I have to find a way to get used to this disease. I have to take life one day at a time, one step at a time.

Its time to stand up, come together, and find a cure. Lets wipe out the invisible diseases together!!



Just don't give up. Even when it seems like a long and dark road... there is a reason to live. So don't loose hope...

New Symptoms????

I am still feeling like a freight train has hit me, but I cannot help but to wonder if that is all because of the steroids or if I am still having a flare up...

I regained the feeling in my left leg, my feet, and my torso... however, by fingers are still as numb as ever and it is slowly moving into my palms. I have also seemed to of lost my sense of taste. Nothing tastes. I don't even have the sensation of sweet or salty. Plus to boot, my back is locking up and spasming.

I just want my life back....





Donations Accepted Here

Friends make the world go round...

A special friend of mine set up a GoFundMe account on my behalf, and I figured I would post it here.... worse case, it doesn't get seen...

Donate Here

I would like to say that anything and EVERYTHING above and beyond WILL be donated to NMSS.

Thank you everyone.

Happy Independence Day...

Due to the insane holiday, I was unable to post. How was your 4th?

My 4th was pretty decent, minus drama.. and the inability to drink alcohol... and of course, keeping a smile on my face. But. I did it. I finished my first set of steroid injections on Saturday morning. Yay, right? Well, I wish it was that simple. You would think that I'd feel like a million bucks again, that all of my previous symptoms would be gone... but nope. I feel worse.

From Tuesday to Saturday I proceeded to go to my local hospital for my daily steroid injection. After an hour hooked up to the IV, and a horrible metal taste in my mouth, I was allowed to leave each day. Well, yesterday morning I went in just as before, and I told the nurse that yes, my symptoms have gotten better (everywhere but my hands have feeling again). Around 3pm, I started getting exhausted, so I just sat around and enjoyed the people.... by midnight, I was seeing in double and triple.  Which I guess is common, they said it might happen. Anyhow, today I got up... Nauseated, dizzy, upset stomach, incredible fatigue, pounding headache, sore muscles... I feel like I was hit by a freight train... but, they said its all common side effects.

I really hope this gets better... or I get used to it, because this really isn't the way to live a life as a 24 year old yound mom of 2...