Its....

Its my 26th Birthday!!!!!!

Update time

So, I havent updated much, but not much health wise has happened. Except I am starting to think I am having an electorlite inbalance. Like, I am always nauseated and the only thing that makes me feel better is gatoraid.

However, I did take a family road trip with the girls and Shaun to visit my mom for a week earlier in the month. that was fantastic and very much needed. Car rides, and beer, and walks, and playing in the lake, and darts, and just all in all having fun relaxing. On our last night, we heard coyotees, and a large cat (thinking it was a bob cat). We also were able to see a metor shower, which was nice.

Next month I have an appointment with the Endo and I have to schedule another MRI (I hate the machine).... Also have an eye doctor appointment for Chloe and I as well...

Hey everyone

Happy 4th of July.

CT results

So, my endocrinologist in Seattle called me. He said everything looked great, except  (don't you just love when doctors start that way) I have a 5mm glass nodule in the middle of my right lung. He said not to worry about it, and he'll be keeping an eye on it.... guess what, I am worried. I mean... what if I have the beginning of lung cancer??? I am too young for this type of stress. Ohhh well, welcome to the life of a spoonie.

CT gone wrong

Today was my first time having a CT scan. Who would have thought I was allergic to the contrast. While and the Machine I was perfectly fine but when I finally got out of the machine and on the way to the car I vomited. I was sick for hours later. I even developed a bit of a rash on my leg and arms.... but, they called it a Mild reaction, and I'd be okay... I still feel like crap... and I'm worried about the results.

3 months Cigarette Free

After being stuck in the hospital for a week, I quit smoking. Today marks just over 3 months. I also saw my neurologist today. I just began my medication for MS. Gilenya. WHo else is on it? Has it helped you?

I have to go ssee my eye doctor like every 3 months, and she scheduled my MRIfor another 6 months out. She was super happy to hear I quit smoking. She is also letting me stop taking the toparimate I have been on for migraines.

Other than that, all is about the same as always Spoons are limited and Ihave to force myself to stay positive... But I am doing it.

Post Surgery Check Up

So, today I had my 6 week check up. All is looking good.

However, I have Diabetes Inspidus for keeps. I also have something uper dooper rare (Hey, I am officially a Zebra) called IGg4. They found it wehn they biopsied the stuff they pulled from my brain. I guess I am only 1 in like 40 people world wide. The endocrinologist said he wants to do a case study on me and publish it. He also wants me to go in for a CT in the next couple of months to see if Imight have it other places showing as masses or tumors or whatever. And the nuerosurgen said he wants me to have another MRI around October...

I will be returning to the offices in a few months... Hoping all stays well.

Holy Hells Bells!!

On january 28th, I returned to the Er again, of course, with my migraine. this time though, I already had orders approved by my nuerologist for a MRI, so they went ahead and did it. They found out that my cyst/tumor thingy had ruptured. They gave me deladin and morphen, and sent me down to Swedish Hospital in an amulance for emergency surgery. When I got to Swedish, they were incredibly confused, and it took until the 2nd at like 7pm before I even got the surgery. Yes, Brain surgery... Kinda scarey, but it was well worth it to be rid of the migraines and be off the morphen drip. They werent sure exactly what they removed according to Shaun. It was yelllow liquid stuff, not blood like they thought. They are assuming it was the insides and infection like stuff from the psuedo tumor. My nose had some full like tampon things, and oh shit fuck, it hurt like hell when they ripped them out of my nose 2 days later. I am now also diabetic (inspidius) because of whatever they did next to my pituitary... they claim it can go away in a few weeks, but it might be perminate. So, I have a nose that keeps bleeding, no taste, i cant breathe through my nose, Shaun has to keep my nose moist, no appititate, lots of new medications, pain killers, and I just want to sleep..... which shall be fun since I cant lay back, I have to stay sitting up right or else my head throbs from pressure. I have loads of limitations for the next 6-12 weeks, and I am just wanting this part of things to be done and over with....

I am starting to hate this

Extactly 3 days ago, I was where I am now.... miserable and in the ER... My migraine is back, andd just as strong as always. I just want to know whats wrong with me. I recieved so many different medications today, again, and its always the same story..... its the "migraine cocktail"

Follow up with doctor, and come back for worsening symportoms... Just figure out whats wrong with me already!!!

Another ER Visit

Another migraine having me in the complete dark and silent day means I am in the ER again for treatment and hope they figure this out...

The said to rest, no strenuous activity. No driving because they gave me seditives, contact my doctor tomorrow for a follow up {again}. Return if my migraine gets worse, and to continue to take my migrraine medications..... I just want them to figure out what is wrong with me....

Are you KIDDING me?!?!?!

So, today I had my appointment with an endocrinologist about my migraines and lactatiing. He diagnosed me with hyperprolactinemia stating that I am just a female. Mind you, I have been lactating since September, my child is almost 4, and I just randomly begin to lactate for no reason..... I dont believe it.

And as far as my migraines, which I am trying to figure out if it has something to do with the cyst/tumor thing, and he just blew me off. He did send me for a bunch more labs... so I guess we will see. He also wants me back in 3 months.

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!!