Wah Wah Wah Shit Ass Disease...Things I Hate

"In time we often hate that which we fear"
                                 William Shakespeare

MFH

Thats right wah, wah, wah I hate the Shit Ass Disease.  Some days are good, some days I feel like a fuck-wad.  Today I feel like a fuck-wad.  Most of the time, like 24 hours a day I spend in my bed.  Number one I can't get on the couch or chairs and if I go into my office well thats just depressing.  So the most comfortable place is my bed. It takes me 10 minutes to slide on and off, but those days are getting numbered fast.  So my new toy is a hoist. 

Definition: Hoist /hoist/ verb  1.  raise (something) by means of ropes and pulleys. (It's really called a Hoyer)

So lets reminisce...cane, rollater, manual wheelchair, electric wheelchair, fucking minivan, pool wheelchair and now a hoist!  Which now I will refer to it as MFH, you figure it out.  I haven't actually tried this monster out yet, but man I am anticipating for a the ride of my life.  First Mike has to crank it down, slide me and then MFH me up and down.  You wonder why I am in a fuck-wad mood?

Now while sitting in my bed I can watch all the lovely people walking, running and riding there bikes.  It makes me, on said fuck-wad day want to throw rocks, shoot, or just scream out the window, "I hope you fall on your faces" to said lovely people. I mean don't these people have any sympathy??  Then I get so pissed at watching lovely people that I turn the TV on, (that's really funny because my TV is always on, mostly reality TV).  Anyway, I will flip channels only to see American Ninja Warriors, So You Think You Can Dance, Beach Flips or Naked and Afraid, tennis (all of which I watch) all of which I want to jump through the TV and kick their ass's, especially Beach Flips, ugh could design get any worse.... on a beach no less!  Don't get me wrong I wouldn't wish the Shit Ass Disease on any of these people, or anyone at all for all that matters but none the less on my fuck-wad days they annoy the shit out of me.

Now if having a fuck-wad day or the Shit Ass Disease isn't bad enough now I have arthritis in my right hand.  Yes it looks like a swollen crab claw that hurts like hell.  Oh yes, now I'm down to pecking the keyboard like a chicken. Well there will come a point where I will be pecking with my eyes so I guess I really shouldn't be bitching, but I am, so what bitches:-) My new crab claw is also so weak that I can't use it at all. So I am down to one left hand...I'm right handed by the way.

Then my precious, adorable and one of the great loves of life Granddaughter, Emerson spent the night.  We were crafting, (her favorite thing to do), and she looks up at me and said, "CiCi if you didn't have ALS you could jump on the bed with me and run".  Poor little angel is too young to call it the Shit Ass Disease. I wanted to kick the Shit Ass Disease right in the balls!  Fuck-wad mood.

Then I realize I at least get to spend time with Emerson doing one handed crafts.  And Truett, that sweet angel crawls up next to me and cuddles to play games on my phone or watch TV. That is until he starts playing Power Rangers and double foot round kicks me in the face!  They could care less that I have the Shit Ass Disease. So fuck-wad mood or not I am one of the most blessed people on earth.



And please remember the walk and the ice bucket challenge.  Remember in 76 years there is no cure, one drug that prolongs your life 2 to 5 months and not even a test to diagnose. It's time to do something about this disease.

Dear Friends and Family, I am participating in the Walk to Defeat ALS® to do my part in the fight against Lou Gehrig’s Disease. Why don't you join my team? The more Walkers we have, the merrier, and the better for the mission of The ALS Association. We need people like you on my team. Your participation in the Walk will make a difference in the lives of those affected by ALS. Think about the ways that The ALS Association has impacted those around you. The money we raise will help The ALS Association support global research, assist people with ALS, fund multidisciplinary certified clinical care centers, and foster government partnerships. Each dollar we contribute will make a difference! The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. We need your support, so please do anything you can! If you can't join my team, please consider making a donation to support my efforts. Thank you so much and we look forward to seeing you at the Walk! http://webtx.alsa.org/site/TR?team_id=338770&pg=team&fr_id=11041&s_tafId=266999

Don't forget the Ice Bucket Challenge.

MFH on....
Sue "CiCI" Cook

My Favorite Designers 1...Things I Love

""I start with my key piece of inspiration which could be a piece of JEWELRY or a show stopping fabric, then I find the supporting CAST of characters...the FURNITURE, fabrics, art and accessories to build the perfect ENVIRONMENT"

I was going to do a post on window treatments.  I personally think they either make or break a room. The first thing your eyes go to when you walk into a room is the windows, so they really need to be done to perfection. After looking on Pinterest, Houzz and Google I was so bored out of my mind I couldn't stand it. I mean I have the Shit Ass Disease, come on people pick up the pace! I went 75 pages on Houzz and found one or two photos that really did window treatments justice.  Then it hit me...Amanda Nisbet!  I have followed her for years and she just gets it right!  So although her window treatments are amazing, I think she just gets it right.  Amanda has been published in the Elle Décor, House Beautiful, House and Garden, Southern Accents, Style at Home Toronto, Coastal Living, O at Home, Town and Country, Traditional Home, Home, Manhattan, Quest, New York Spaces, New York Home, Hamptons, HC and G, The New York Times, Veranda and The Washington Post, among others. Amanda is regularly featured in many acclaimed design blogs. And as you will see she is definitely not afraid of color. So I have decided to do several posts on my favorite designers, starting with Amanda Nisbet.  You are welcome.

The turquoise chandelier with the ikat navy window treatments, and the aged chairs makes me happy.

Talk about the window treatments making the room!

I don't see a beach outside the widows but there is in my mind.

Pop of color here and there.

Not my fav but love the window treatments.

Pattern,pattern pattern, love,love,love.

Enclosed veranda. Shut up!

She even does neutral pattern on pattern.

Neutral and texture.

What I like about this room is the quilted window treatments, mismatched side tables and still totally balanced.

Navy and white.

Love the stripped shower drapery!

Again love the ikat fabric.

Love.

I hate purple but love this room?

 This room would make me happy to wake up to every morning.

Perfection!

Dear Friends and Family, I am participating in the Walk to Defeat ALS® to do my part in the fight against Lou Gehrig’s Disease. Why don't you join my team? The more Walkers we have, the merrier, and the better for the mission of The ALS Association. We need people like you on my team. Your participation in the Walk will make a difference in the lives of those affected by ALS. Think about the ways that The ALS Association has impacted those around you. The money we raise will help The ALS Association support global research, assist people with ALS, fund multidisciplinary certified clinical care centers, and foster government partnerships. Each dollar we contribute will make a difference! The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. We need your support, so please do anything you can! If you can't join my team, please consider making a donation to support my efforts. Thank you so much and we look forward to seeing you at the Walk! http://webtx.alsa.org/site/TR?team_id=338770&pg=team&fr_id=11041&s_tafId=266999

Don't forget the Ice Bucket Challenge.

So this is my first post on my favorite designers  

I also have to clarify something... on my Shit Ass Disease 3 post I said my husband went to play tennis (bastard).  He was a little offended by that (whoops) I meant he was a bastard for getting to play tennis while I'm stuck in this Shit Ass Disease hell. Now I will not call him a prick for getting offended and you can't make me:-)

Design on...

Sue "CiCi" Cook

E & T... Things I Love

There is nothing like a grandchild to put a smile on your face, a lump in your throat and a warm feeling in your heart.
   

After such a deep post yesterday I thought I would go to a subject that I love...Truett and Emerson.

I love my grandbabies.  They are entertaining, funny and give you such unconditional love.  They both spent the night recently (and of course they have to sleep in my bed) Truett ended up sleeping across my body, be still my heart. Forgot to mention when they spend the night its kick Tata out and we get the bed. Emerson thinks it's hilarious to draw a PICture and write no Tata allowed. Then Emerson stayed the night last night and I was trying to get her to go to sleep, so I was fake asleep and she snuggles up to me, hugs my arm, kisses me and tells me she love me!  My heart turned to total mush:)

Now lets talk about Truett when he is awake he is faster than a speeding bullet, that kid can get into anything before you can blink and eye,  He still goes into my wine fridge on a daily basis, remember, I asked him to get out of it and looked me square in the face and said, "Hello gorgeous wine".  I try drinking it as fast as I can but luckily for me there is always some there.  I have a friend that thinks I might run out and is secretly supplying me.  I love my friends. He got super quiet the other day and his mom found him sitting at the top of the stairs with a unopened coors pretending to drink it.  Is there a theme here??  When you tell him he has to be 21 to drink he says, "I'm 21"! For the record I don't drink beer. Truett... the boy will not keep clothes on, period.  He doesn't care who is around, who can see him, by God the boy is going to be naked.  He got in the fucking minivan

the other day no pants and said, "Ohhhh Yeaaaaaa"? Then his mom, sister and Truett were playing ball and he stops looks at his mom and points and yells, "Your cra cra", then points at his sister and says the same thing.  But I mean come on is that a gorgeous angel face or what

OK on to Emerson.  She is the sweetest Sybil on the planet.  One minute she is hugging you the next she gets that scrunched up face, lip out to the moon and arms folded.  Maybe because she doesn't like the restaurant we have chosen.  The other day her mom and I wanted Mexican food (duh) and she didn't so she whipped out the face and folded arms. I told her I was going to order my lunch with that face and talk like an angry man.  She finally started laughing.  She loves to squeeze my arm and tell me I am "squishy" gee thanks:-)  She is so smart and talented. Martha Stewart has nothing on her.
again just look at that angel face!

I hope each one of you get the blessing of grand babies at some point. They are a love I wish for everyone.  They grow so fast.  One minute your holding a newborn and before you blink an eye they are graduating preschool or playing soccer.  Only this time you know how fast time goes.

So that is my story about these two little people that I love more than life.  They light up my life and warm my heart.

Babies on..............

Sue "CiCi" Cook

Shit Ass Disease 3...Things I Hate

Because ALS is underfunded, patients have had no option but to fade away and die. That is not OK.
                                                                                                                                     Steve Gleason

                                                                 

                                                              

I have covered falling, cane's , rollator's and wheelchairs, now it is time to go back to falling. This Shit Ass Disease just keeps getting better and better. Well I am writing this blog from the floor.  It really is funny from the perspective of anti depressants!  I was sitting on the edge of the bed and started slipping off, slipping and then "Oh shit I am going all the way".  Yep sitting on the floor now and the only thing close that I could reach was my computer.  My husband is playing tennis and I hate to disturb him (bastard) so I reached up on the bed and grabbed a pillow and now I am writing this blog.  I must admit falling down 4 steps with a full glass of wine was much better than this. I coud stand back up refill my wine glass, and get in the pool. Oh the good old days, floating hearts.

So here I sit on the floor with my computer so now I am going to bitch about this little thing called Shit Ass Disease.  Things seem to be happening at a faster pace then it has been.  So I say fucking great! This all started when I was watching my two year old grand daughter while her little brother was in the hospital.  She wanted to do ballet and dance on our toes.  I would stand on my head and spit quarters if that is what this little angle face asked me to do.  Unbeknownst to me I couldn't stand on my right tippy toe.  Odd. Didn't think a lot of it but made an appointment with a Podiatrist thinking it was a achilles problem.  He said it wasn't torn to just exercise. That didn't work and I thought he was a little flippant about it.  A friend told me about a great Podiatrist she used so I went to her.  She ordered 3 MRI's and couldn't find anything. She wanted me to see a neurologist so I did that.  He did a EMG (let me tell you how fun it is to be stabbed 25 times and shocked). He couldn't find anything and suggested I see a Physiatrist, that is Physiatrist not Psychiatrist, although maybe I should have seen one of those as well.  So I did.  She ordered 3 test which I had in a hospital. When I saw her after the test she said she couldn't see anything wrong but wanted me to have a MRI on my back, which I did.  My next appointment with her she looked me square in the eyes and said, "I don't have a clue, you need to see a Neurologist. Ugh fucking ugh!!

So a few weeks later I limped into a restaurant (by now it was a pretty bad limp) to have lunch with a friend. She was so sure that her voodoo doctor could diagnose and cure my problem.  I thought what the hell.  She picked up the phone and made me an appointment.  So I went to see said voodoo doctor.  He had me lay down on a table and placed a vile of voodoo serum on me then would tap on the vile, then repeat with another vile, on and on.  Then he told me I had a "fungal disease" and I needed to take certain supplements ($500 worth) and make a few tiny changes in my diet.  No cheese, mushrooms, bread or sugar and sugar substitute of any kind.  He might as well told me to not eat for twelve weeks.  So I bought the supplements, quit eating, and followed his instructions for twelve weeks.  Every week I would go see him, vile's, tapping, running his hands about 12" up and down my body ummmmmmmmmm.  Now we need to add another supplement, another $300 dollars.  After the twelfth week, more vile's, more hands up and down my body ummmmmmmmmm, he actually looked at me and said, "I'm feeling anger that you are not getting better".  I have  never wanted to punch a son of a bitch in the face so bad in my life!  I went home threw the thousands of dollars of supplements in the trash and ate as much cheese and mushrooms as I could stuff in my mouth.

The limp started getting so bad that I couldn't play tennis or walk my usual 3 to 6 miles or go to the gym. So I decided to go see my orthopedic doctor that I had gone to in the past.  He found a torn muscle in my calf.  Finally!  So he send me to physical therapy for 6 weeks which was pretty painful but it helped the torn muscle, it just didn't help the limp or the standing on my toe issue, soooooooooooo he decided to do a EMG (number two) and couldn't find anything.  He ended up referring me to a Neurologist that specialized in muscle diseases. So I went and saw him.  He took blood, tested my resistance with muscles, looked me in the face and said, "You have a bad disease, I don't know what it is but you have a bad disease"  Great, I have know been to 8 doctors and all I know is I have a bad disease. I cried all the way home, but he referred me to Dr. Martin another Neurologist in Dallas.  #9 here I come.  

He started out with another EMG (#3) and couldn't really find anything so he recommended I start infusions to see if that wouldn't help.  Infusions are another barrel of laughs.  You go into a room full of people, they hook you up to a iv and you sit there being pumped full of platelets for 5 hours all to the tune of $5000 per infusion. After each infusion he would do another EMG. In the mean time between infusion treatments he decided I needed a few more MRI's so I had a MRI on my brain, neck, back, spine and shoulder.  If the Shit Ass Disease doesn't kill me the the MRI's will for sure. He also did a spinal tap (oh my God, painful as shit) and a muscle biopsy. Now a muscle biopsy is where they take a chunk of tissue out of your leg to test. Just shoot me in the head right now!  So in total I had 9 MRI's and 7 EMG's, spinal tap, muscle biopsy, pt for torn muscle for 6 weeks, 3 test from Dr. I dont have a fucking clue and 5 infusions. Then on March 27, 2014 Dr. Martin informed me I had the Shit Ass Disease.  You see there is no test for the Shit Ass Disease, it is a process of elimination. My daughter was in the room when he told me (read my post on Daughter for what torture that was). Well Channa went into panic mode and decided I needed a second opinion.  So she called Dr. Appel's office in Houston and made an appointment, it took 3 months to get in.  

So on I went to a 3 day evaluation.  The first day Dr. Appel walked into my room looked at my leg and said, "Yes you have ALS".  Perfect.  I still went through the evaluation, EMG, blood work, Pomologist evaluation (which the bitch told me I couldn't touch my grand babies from my waist up because they can get me sick, well screw her guess I will have to die from a cold, sleep clinic, Psychiatric evaluation, Physical Therapist evaluation, Occupational Therapist evaluation, Speech Therapist evaluation (she was a real charmer) and after all that yep you have the Shit Ass Disease.

Well it's been 2 hours and Roger Federer has walked in.  Now the fun part, getting me off the floor..... OK back on the bed, that was way fun!  At least I got this fun blog written!  Now for a little more reality...in 75 years there has been one pill made that will extend an ALS patient with a 10% of life.
That is 2 to 5 months. Whoopie shit! 75 years!! So if you can find it in your heart please join Channa's Walk to Defeat ALS team.

Dear Friends and Family, I am participating in the Walk to Defeat ALS® to do my part in the fight against Lou Gehrig’s Disease. Why don't you join my team? The more Walkers we have, the merrier, and the better for the mission of The ALS Association. We need people like you on my team. Your participation in the Walk will make a difference in the lives of those affected by ALS. Think about the ways that The ALS Association has impacted those around you. The money we raise will help The ALS Association support global research, assist people with ALS, fund multidisciplinary certified clinical care centers, and foster government partnerships. Each dollar we contribute will make a difference! The ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. We need your support, so please do anything you can! If you can't join my team, please consider making a donation to support my efforts. Thank you so much and we look forward to seeing you at the Walk! http://webtx.alsa.org/site/TR?team_id=338770&pg=team&fr_id=11041&s_tafId=266999

                  

Don't forget #ALSIcebucketChallenge

                           

        

                                                     

76 years ago, still no cure.

Shit Ass Disease on.......
Sue "CiCi" Cook