The Day After......

An appointment is scheduled by permanent disability in relation to my fibromyalgia for the day after

I can not cancel it

I wake and shower

I put my soft collar on

It hurts

I take my soft collar off

Update my "Instant Me" on patientslikeme.com

I add colloid cyst to my list of diseases on my profile

Hmmmm....6 other people list this

Fibro=37,013 people

Tuck that info away till after your appointment

Honey please drive me

Fill this out

Are you depressed?

Have you ever been depressed?

Say these words

Spell this word backwards

Count forward

Skip these numbers

Say those words

Are you depressed?

Pick up cat food

Let's go home after this

Getting Sore

Forget daughter has to work

Rush back
Pain
Neck hurting
tired
lie on couch
call doc to inform
inform insurance
eat something
rest neck
doc's office says please call back with claim number asap to schedule
research
"Colloid cysts are non cancerous (benign) congenital brain tumors. These cysts can be problematic because of their location and size. The tumors usually become symptomatic in adult patients ages 20-50 years."  www.patientslikeme.com

Wait...What?  Does that say brain tumor?  But didn't that er doc specifically tell me that it's NOT a tumor? 

'A colloid cyst is a cyst containing gelatinous material in the brain. It is almost always found just posterior to the foramen of Monro in the anterior aspect of the third ventricle, originating from the roof of the ventricle. Because of its location, it can cause obstructive hydrocephalus and increased intracranial pressure. These cysts account for approximately 1% of all intracranial tumors"  Wikipedia  

There's that word again 

Tumor 
Brain
Brain tumor
1.% 
Rare 
1 in a million
Usually found accidentally....or post-mortem
What?
Don't panic
Breathe
Don't tell anyone till you speak with your doc
don't panic
time to sleep 
Sleep....please sleep.....
Fine...read a book
zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Thursday, August 15, 2013 

The Discovery

Xrays of the neck, the upper spine, the middle spine, the lower spine,
MRI's of the neck, the upper spine, the middle spine, the lower spine, the brain,
physical therapy including chiropractor, TENS unit & massage therapy,
nerve conduction test(yeah this benign test hurts like hell),
spinal specialists, neurologists, rheumatologist. ENT, pain management,
fighting through the pain at work,
being told straight out that it's all in my head,
pulling over to the side of the road crying because it just hurts too much to go one inch further.
fighting through the pain to keep working,
hands spasm,
peripheral neuropathy,
widespread pain throughout mostly my right side,
difficulty with balance,
difficulty standing,
legs hurting,
lower back hurting,
can't communicate properly(can think of what to say but the words won't come out properly),
giving wrong directions (saying left but meaning right and not even realizing it)
can't function well enough to work any longer,
home resting,
can think a little clearer but still have issues communicating at least once a day,
blessed that I have my honey to help me day to day
wish that he would not be so afraid to commit
medication,
pain,
rest,
Missing my old life of friends, karaoke, beverages,
load of dishes, a little laundry, time to nap, exhausted,
taking one step at a time,
adjusting to no longer having a choice as to whether I can work or not,
ex-husband still not paying what court ordered,
son tested for diabetes
dog has tumor on right shoulder
biopsy done on dog
doc's office tells son that he "most likely" has diabetes,
More blood work done
biopsy inconclusive, repeat biopsy,
son doesn't have diabetes! Yipeeeee!
Dog's tumor is nothing but a fatty tumor! Yipeeeeee!
honey's car needs work,
dog gets groomed (thank God she doesn't stink any more)
Drop off dog at home
heading to pick honey up,
sitting at a light waiting for the car 2 cars in front of me to make a left and............................


WHAM! The blonde bytch hits me from behind

Neck hurting more than usual
Ambulance takes me to hospital
Headache....bad...Like tears rolling down face involuntarily bad
too much ice tea....damn I have to pee
No dignity for the broken.....bedpan
Honey arrives right at that moment of course
Doc comes in and says...neck xray needed
waiting for xray.,,,,,,,
Wish I had known that that girl was going to hit me....I wouldn't have had that much ice tea
Bedpan time again
Nice young man takes me for x-ray
back to er cubby  #6 to wait for results
doc arrives and removes the neck brace since x-ray all clear
head still hurting pain level 8
Order CT scan
We wait.
Honey finds "Godfather 2"
time for my meds
watches the whole show
we wait
very nice man takes me for a ct scan
he made me feel as comfortable as you possibly can in a hospital
back to er room #6
wait
pain level is down to about level 6
wait
wait
starving
oh let's get Chinese
wait
wait
honey is getting cranky cuz hungry
go get some chips
wait
wait
wait
wow, it's getting late...I'm sure the results will be ok since the headache has subsided some
go to the bathroom....wow there are people out in the halls....
wait
wait
wait
doc comes in...immediately apologizes and then goes on .......................................










and tells me that the CT scan found something unrelated to the accident.......it's a colloid cyst and it is found in the area of the brain that produces cerebral spinal fluid.  It's usually benign .  I quickly tell the doctor that my brother had a brain tumor that was benign and he had to have surgery.  The doctor quickly tells me that this is a cyst not a tumor.  It's just good to follow up with your primary doctor because he will probably just want to watch it.  No worries.  So that being said, I'm going to get you a brace that I want you to wear unless it causes more pain.  The idea is to let the chin rest on the brace to rest the neck.  But if it hurts, don't wear it.  I'm going to get the brace, I'll be right back...you can get dressed.

And he's gone.........


Wednesday, August 14th, 2013 to be posted asap once more info known & as soon as I can let as many people as realistically I can reach.

PS   If I did not reach out to you, please understand that I can't get to everyone I would like to...It's just too much....but it doesn't mean that I don't wish that I had reached you.

A Brand New World

Hello dear reader,

It's been a roller coaster week with my pain.  Tonight is not the worst but it's close to it.  The weather in contributing in a very large way to the pain.  So I hope you will allow me to distract myself here.

I am heading into subject territory that is very dangerous.  I am taking my life into my hands by discussing these things here.  That being said, I will do my best to keep things as general as possible to protect the identity of my daughter.  Oh chit, the cat's out of the bag.  Well, she doesn't really pay attention to what I do anyway and thus will probably never stumble across my blog, let alone seek it out. Maybe I will be safe..LOL

Ok  Let's be serious:  She has a boyfriend.  The unique thing about this is that she met her bf through a video game.  Granted, nowadays, that's not so unique.  But....we didn't have the internet when we were growing up and atari sure as heck didn't link to other people in other houses so you could play together.  If you wanted to play together, you had to know one another, go over to one person's house and....wait for it.....Take Turns!    So now I sound old...Granted, I'm older.  All that being said, I am actually supporting my daughter.  I have made friends online.  I have lost online friends (as in they have died).  I have gone to an online friend's funeral and met online friends IRL(see I"m a little cool).  So I can't judge my daughter on the fact that she is doing what comes natural to her generation.

I am still her mother though and my responsibility is to keep her safe.  So we are going to meet this young man IRL and I have made it clear that the rules are very simple.  Stay close enough to me that if you need to scream, I can hear you.   I don't need to be "up their butts" but I have a responsibility to be sure that the nice young man that she has gotten to know, doesn't suddenly turn into that serial killer we have all read about.  

In today's world, boy meets girl through video game. Boy & girl talk all the time, not through the phone, but through "facetime"(in case you aren't as hip as I...that's a video chat).  Boy hangs out with girl all the time this way...except of course when they are playing a video game together and then they chat through the headset while watching each other's back as they kill off other gamers.  At some point though, there has to be a meeting IRL.  They just can't stay that way forever.   With every change in the world, there is good and there is bad.

I think the internet and all it's glory has opened the door for many shy young people to make friends and warm up to them long before they ever have to actually have a face to face conversation....and then even longer before having an IRL "date".  Obviously, it has also opened the door for people to misrepresent themselves.  Sometimes, simply that they aren't the 6'4" football player.  Other times that they are really dangerous & evil.

The fact is that those dangerous & evil people were around long before the internet and meeting people exclusively IRL doesn't keep you safe either.  My ex never needed the internet to be dangerous & evil.

 So I will do everything in my power to keep my daughter safe (even if she is embarrassed that she has to stay in the same restaurant as I) while giving her as many choices in her own life as possible.  I have to trust my daughter's judgement while protecting her.You usually know that you are handling a situation with a teenager the right way when no one is happy.  She would love to go off on her own & I would love to sit at the same table as her.  I think the "within screaming distance" rule is a good compromise.  I have to accept that it is a brand new world and do my best to adjust to it.  I also have to accept that my little girl is growing up.   I think I'm doing pretty well for an old chick ;)

Thyme to Bytch

My dear reader,

It has been quite a bit of time since I have written last.  Life changing circumstances have occurred since I really had a chance to write you.

The biggest change is that my fibromyalgia has gotten so bad that I am no longer able to work.  There was no longer a decision to be made.  I literally worked until I couldn't any longer.  The fact is that before I left work my fibro fog had gotten so bad that, on a pretty regular basis, I was unable to form complete sentences, let along a full paragraph. One of the worst was having a conversation with a co-worker.  I knew it wasn't working but I spoke a paragraph.  My co-worker looked at me and said "I have no idea what you just said".  All I could say to that was, "I know".   I had given my boss basically a month's notice.  I let him know that I was not going to be able to work much longer and we needed to find someone to replace me.  I placed the ads, helped with the interview process, assisted in hiring her and then trained her as much as I could.  When it came time for me to go, things got ugly.  I let my boss know when my last day would be.  On that last day, he tried to push me to work longer.  I informed him that there was no way I could make it but I could help from home.  He told me he felt I was trying to take advantage of him.  Considering that for the almost 6 years I had worked for him, I had given it my all and then some including my health, I was done at that moment.    I have made a commitment to create a training manual for the front desk and I will honor that commitment.  I have it started but until the last couple of days, honestly, I haven't had a moment to breathe.

My struggles these last few weeks are finding comfort.  My pain level has been from bad to worse lately.   My doctor informed me yesterday that there really isn't anything additional that he can do for me.  He wants me to start taking a 15 minute walk every day now that the weather is improving.  I'm going to do my best.  The words to describe how I am feeling lately are very hard to come by.  Unless you have lived through some debilitating disease, you just can't understand.  I find myself amazed that doing dishes can put me into such horrendous pain that I can't move off the couch for hours and then I may just have to go to bed for the day, LITERALLY.

  I have a "friend" who I know is going around to other people we both know and complaining about me.  She's saying things like, "well, I saw her jumping into the lake a few years ago, it's not really possible for her to be disabled now".  I mean her arguments are ludicrous. Funny thing is, when I tried to talk to her about what's going on with me,( because you see, I thought I could use a friend to listen and maybe even be there for me), she said the same thing to me.  To top it off, her other statement was, well I know this other person who has fibro and she goes out all the time, she cleans houses and if she's having a bad day she just stays home but she's no where near as bad as you are saying so you must be wrong or your doc must have misdiagnosed you. SERIOUSLY!  The audacity of it all is just amazing. Oh and let's not forget the old, well you went through alot with your ex so I think it's psychological and you should get counseling.  Fact is that I expect strangers to say things like that.  When a "close friend" says things like this, you quickly realize how small your support system can get.  It's ironic because the few times that I have gotten out in the past year have 99% been for events for her(she lives 2 towns over). Birthday parties, bbq's that sort of thing.  And during those things, it's a rare thing to hear "Are you ok?" crossing her lips.  Others say it, shoot practical strangers say it. Well,  enough of that, I guess the point of all of this is that when they say  "when bad things happen you discover who your true friends are"  They really aren't lying.

Meanwhile, I have a dear, close true friend who came out from a different state to visit me.  We spent 10 hours (or was it 12) talking.  She made me feel so good about myself.  She made me feel loved.  It wasn't the homemade beautiful gift she made me(see below because it is truly gorgeous).  It was the time she spent.  During dinner my daughter started playing this game called "Table Topics".  The question during dessert was "What traits do you look for in a friend?"   I noticed that neither myself nor my friend answered.  Personally, I couldn't answer because the answer for us is that we didn't look.  We just found each other and I think we fit perfectly.  It's like asking what do you look for in your perfect man, you don't know until you find him.  My friend is honest, loyal, loving, kind, funny, intelligent, gorgeous on the inside and the outside(the outside part doesn't matter but I wouldn't want her to think for one moment that I don't believe it with all my soul when I say it....so in case you are reading this.....your gorgeous).  I don't believe that she would lie to me but I do believe that if she truly thought that my disease was "all in my head" then she would convince me to see a doctor in a kind respectful way. 

Just one more quick note about the necklace but also about the consideration of this dear friend.  My first thought upon seeing it was that it is beautiful.  My second was oh boy, how am I ever going to get that clasp done? (one of the new issues that I must adjust to is opening small things like clasps)  The next thing my dear friend did is tell me to look as she pulled the clasp open like magic!  "It's a magnet" she tells me.  Oh did I mention that she reads minds also.  Well apparently she does.  I strongly recommend to all my friends who have a disease that affects the fine motor skills:  Find jewelery with magnetic closures :)   And/or feel free to check out my friend's company's facebook page.  She makes custom jewelry here:   https://www.facebook.com/4daughterscreations

So there have been downs but there have definitely been ups also.  I am trying to find the balance here on the see-saw of life. Finding my blessings in the midst of my challenges.  I may be home now but I am going to make the most of it.  I will take my time, do the dishes, spend some time with my daughter when she will have me, get a little extra blogging in, write those reviews for those companies I liked but also for the one's I can't stand.  Take it day by day.

Tomorrow, I will tackle the paperwork that I have to do within 10 days....just one more rung in the ladder of life.

Have a great day today!,

Cat

Disappointment

I do my best to fight frustration with humor but sometimes I can't find the humor.  Right this moment, I'm not laughing!   I didn't do much, as usual lately but I did have a couple things on my must do list. 

1. Deliver an Avon order (accomplished) 

2. Put together several baskets for a tricky tray for my daughter. 

Well I got this great idea to add 2 additional "baskets".  Basically, 2 gift certificates to raffle off.   Only thing is I need to find a template an personalize it for the certificates.   I downloaded some clip art and narrowed down the templates to 2.   

And that's where I am now....typing this on my phone since I can't move at all from the couch in a prone position.   The certificates aren't going to be done today.   The worst part isn't my own frustration but my daughter's.  She can be very patient but she is a teenage girl....and does get frustrated. So I guess since there is nothing I can do but lie here.....I will just go to sleep...because regardless of the frustration, when you CAN'T move......you can't move.     

Commitment

I am hereby making a commitment publicly to work on completing previous blog posts & creating an updated new one that has been running around my head the last 3 weeks.  Additionally, I will update my page to let my readers know a little bit more about me...I promise I really am a pretty interesting person who has loads of stories to tell...I just may have to change some names to protect the guilty ;)     So all that being said, I am putting it into  my schedule right this second to schedule all this work to be done on or before Thursday.  I would do it now but honestly.....I physically can't right now.  Mother's day hurt me.    Soo c u all on Thursday where I will do my best to edit my wonderfulness in order to fit it here :)   Have a good Tuesday & Wednesday :)

The Adventures in Bathroom Remodeling

Greg had decided to renovate the bathroom.  Well, you don't know Greg the way I do.  I knew that this was going to mean loads of stressful days.  You see, he is diagnosed with OCD by my daughter and myself.  When one item is out of place, his anxiety increases.  Oh you want an example...Ok...We have a candle holder on our coffee table. It MUST be centered.  When it's not, you need to get out of the way and just let him put it back because he absolutely can not walk away from it.  Oh and there he goes moving the coffee table....I didn't mean to move it I swear.

OH...I got off topic a little but there is a point to it.  If you can't have a candle holder out of place, how well do you think he handled having an entire room literally torn apart while another room(granted an empty one) is used to store all the equipment needed to complete this job.

So here we are, the decision is made and the date is set to start the work.  It's time to pick out tile.

I tend to lean more towards a bit of drama in each room.  Always in a classy way but something that makes people say "Wow" .  Greg leans towards the practical.  He likes to keep in mind what he feels will reflect well when/if the property is sold.

His selections were all very simple.  They honestly reminded me of a hotel choice.  Sort of generic and bland.

I found tile that I loved.  I explained to him how we should go for a "Wow" wall.  One wall when you enter into the bathroom and you see through the glass doors, it just makes  you go wow.  

My thinking is this:
               1. We will be living with this bathroom for many many years, possibly until we pass from this earth, so let's make it in a way that we will enjoy it daily.
               2. If he's going to spend the kind of money it takes to update this bathroom, we really should love it.

So I find the tiles shown below and I get to convincing Greg how wonderful it's going to look when done.   Initially, he wasn't sold by any sense of the word but when I put it all together and Greg asked the salesman what he thought..... Well let's just say that the salesman was impressed with my skills and Greg jumped on board.    We did have to do a little juggling of the initial plan to keep it in budget.  Rather than having tiling going across the wall with the sink and the commode, we kept it just in the shower.  

The Wow wall tile was $25 Sq Ft.  but then we found the side tile & floor & ceiling tile was only $2.99 Sq Ft.   By making these changes & finding those side tiles, etc, we were able to keep the shower in budget.

This first picture is showing the shower floor tiles....the small ones .  The Bathroom floor....the lighter hardwood looking tile...yes that's tile not wood folks.  And it is lying against the larger tiles that will be the 2 side walls and the ceiling. 

The larger tiles here will be the side wall tiles while the smaller colorful tile will be the WOW wall!   The one back wall that you will see as you walk into the room and say WOW! when you see it :) 

This picture is to show the larger side tiles, the WOW wall colors and the bathroom tile floor that looks like wood :) 

This last picture is the best picture of the WOW wall and how it will be installed.  We are looking for the wall to make the room look wider by putting it horizontal and of course to wow people as well as ourselves with the beautiful warmth emanating from our bathroom wall :) 

Greg handled the vanity, sink, quartz counter top & glass shower door exclusively.  He chose beautiful items to accent my "WOW" wall. ;)  

By setting things up the way we did, including the horizontal lines and the colors, it makes a small bathroom look larger :) 

So I know your dying to see the final product.   Scroll on down to check it out! 

This is the gutted bathroom! 

This is what you see when you turn the corner and head towards the bathroom. 

This Shows more of the cabinet & the flooring. 

I have to give a shout out to the company that we got the tile from.  They were wonderful at helping us find just the right tiles to make the job work for us.  So absolutely knowledgeable!  I can strongly recommend them to anyone looking for any sort of flooring and/or tile work.  They don't just have tile but also have a very large selection of wood flooring.    http://www.waynetile.com/