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kick me sign

Kids place kick me signs on other kids backs as a joke. I feel like someone placed a kick me sign that said ” please rip me off and screw me over”
I guess the jokes on me.
I have always been the no nonsense ball buster. I have fought with insurance companies and won. I negotiated many deals at work .Everyone knew that I was a great, strong gatekeeper. As a result deadlines were met and the quality was high.
My husband is the nicest guy who would rather throw something out than bother to get the responsible party to fix it.
Previously, these traits provided a great balance to our marriage. I fought a $1000000 insurance denial for months and he was happy to not have to pay it or deal with it.
Then came Sandy and kicked us right off our asses. We did everything right, filed every claim, yet we got royally screwed. Our insurance claim was denied. ( feeling those kicks)
A few months later I was diagnosed with ALS (big huge kick)
A beautiful thing happened then . The note now said “hug me”. People near and far gathered to pray and raised money to help. A foundation was created.
A local organization stepped in to help coordinate the repairs from Sandy and to make my house handicap accessible.
We took out loans and used the contractor who was brought to us from the agency.
Because of my illness, the contractor did not listen to a word I said. He did a very poor quality job. The roof leaked and damaged the wall. The walls and are all cracking because they weren’t finished properly. The bathroom floor was improperly installed and must be redone. My handicap sink is too high and the safety bars not installed. The deck is literally cracking and coming apart. The contractor used my front and back lawn as a garbage dump, damaging all the grass and my sprinkler. The costs to fix all the contractor messed up is tens of thousands of dollars .
The contractor hired workers who were drinking and smoking pot as they worked.
We have complained to the person who got us this contractor and we seem to be stuck with all the repairs left by the contractor. My husband won’t sue so we are on own.
Every summer since we have moved into our house, I have spent my summer on a lawn chair under a tree with my feet in grass. Since the contractor has destroyed my tree , literally and my money tree, I am stuck home this summer, not able to even enjoy my backyard paradise. My husband enjoys beIng home on weekends. I do too when my yard is functional.
The contractor not only ripped us off, but he has also taken my summer and safety away. Since we no longer have money to fix what he screwed up, we are forced to live in a new addition that is cracking more daily.
Funny thing is that I had a beautiful lawn before we started construction that the contractor promised me he would fix. ( guess his fingers were crossed )
1 feel like I was kicked in the gut this time.

imagine being told that you only had a few years left to live? that during this time your muscles would all die? what would you do? would you try and maximize the time you have left, making use of all your abilities while you still can, or would you lay at home day and night?
I am done with lazing around. The summer is flying by .This may be the last summer that I can sit in a lounge chair and run my feet in the grass ( which we still don’t have)
I decided to make a bucket list. Anyone who can help connect me to the right vendors or willing to adventure, please reach out to me.
1. I would like to have my grassy yard to enjoy one last summer.
2. I need a handicap van so i can travel easily with my power wheelchair.
3. I want to go to a concert
4.I want to go to a Broadway show
5. I want to go to Niagara falls
6.I want to go to Vegas
7. I want to go parasailing
8.I want to go on a hot air balloon
9. go camping with a camper
10. I want to go to choose window shades for my house
11. paint my kids rooms
12. visit different states
13. go on a cruise
14.go sailing
15. beach vacation in Mexico or Caribbean
16.visit my daughter in Israel next year
17. make memories, all ideas are welcome

my prison

these days I feel like my house is my prison and I am at the mercy of my warden.
if I had a handicap van, I would have more freedom.
weekends are the worst, we have no help and my husband beIng a man can’t handle it.I become the casualty, feeling guilty any time I ask for help. I stay in bed as much as possible. This is not a way to live.
eventually I will be stuck in bed forever, but now I’m still mobile and want to experience life.
for 19 years I ran around taking care of my family. I bought all the groceries, clothing, housewares. I prepared the kids , cleaned up, shuffling to doctors, errands, carpool and work. I paid the bills and filled out every form. Nothing fell through the cracks. I got everything done and never once complained that any of it was a burden. it’s funny that when the tables are turned , helping me is the biggest burden.
I’m sorry if I want to be treated like a normal person. I want to walk while I’m still able to, sit in a chair like everyone else and to make decisions on my family.
I cleaned up much puke and poop, blood and bandages. I made sure everyone always had what they needed.
I want my family and friends to give me that same courtesy.
my house was renovated to make things more accessible for me. there is still much to be done and any help would be appreciated.
id love to go on a vacation with my husband this summer to reconnect as people (someone convince him to go)
in the mean time help me escape my prison and enjoy the time I have left.

Sad day

Today is my mother’s 7 th yortzeit. I miss her terribly. This morning Jack Schuldenfrei passed away. I met Jack on Facebook from my sister. Jack had ALS and was diagnosed around the same time I was. Jack was a British man who made aliya. Jack wrote a blog also and I loved reading it.
I will remember Jack forever because he shares a yortzeit and a disease with my mother. I hope they get to know each other in heaven.
Jack’s death really shook me to the core. So far I am beating the odds. A cure needs to be found soon. Since I was diagnosed, I know 3 people who have died from this awful disease.
I heard yesterday of a famous rabbi who was just diagnosed. His mother had ALS too.This rabbi has a couple hundred decendants, all with his Ashkenazi DNA. ALS is very much a Jewish disease.
I plan to beat this and will fight it with everything I’ve got.
May my mother’s neshoma, Miriam Chava bat Chaim Baruch have an aliya and Jack’s neshoma too.
May everyone I know will ALS recover .

not having help on the weekends has ruined my summer

This may be the last summer that I am mobile to enjoy it, yet I spend every weekend stuck in my house because we can’t find anyone able to help me properly. So my husband runs around all day taking care of things and im left in front of the tv on my own all day. Today we woke up to no tv or internet, so I sat on the chair for hours with nothing to do. I used to sit and tan, but we have no grass yet. Too much had to be done so I’m ignored.
Most terminalLy ill people take the opportunity to enjoy their last days, yet Im being robbed of the opportunity to travel and experience life because we can’t get help for the simple things.
There is so much beauty out there that I would love to experience and see.. I can’t go on like this. I deserve a summer too. If anyone has a lead to good weekend help and a WInnebago to lend me, I’m ready to have fun. As for the weekdays, help me enjoy my summer. as comfy as my recLiner is, I’m Itching for adventure.

what als has done to my family

Als may be slowly killing me but it has destroyed my family. Als alone is not the culprit.
When I started this blog, I was filled with hope and love, I am now feeling hated, ignored and like a burden but only from those closest to me. These were the same people who assured me they would be there for me no matter what.
My husband has taken on everything, those helping him in the beginning have stopped.
Everything has fallen through the cracks. My husband has become so stressed out and it’s effecting the entire family.
The contractor took advantage and did a shoddy job. With no energy to keep arguing, my husband pretty much let him get away with it, the result is a dangerous filthy bathroom floor, a dangerous filthy backyard and a deck so crappy that it breaks more every day.
Where was my family who could have dealt with the contractor? Where was my brother?
I finally got Medicaid, to keep Medicaid I can’t have more than a certain amount in my debit card and bills must be paid with that money.
I was forced to cancel my credit card.
I now have to beg for any purchase I want to make.
This has robbed me of my ability to feel like a human. I can’t buy my kids summer clothing because I’m stuck with cash. I can’t prepare them for camp or feel like a mom.
I couldn’t purchase tickets to Israel to visit my daughter and have a family trip together while I still can. I missed the ticket deal trying to reach my husband for a credit card to use.
ALS has robbed me of my self worth, my capabilities and the ability to take care of my family.
Medicaid will give me an aide to help me, my husband doesn’t have the energy to find our own so he is going to leave me with whoever is send, abusive or not.
Where are my so called rock star friends? They talk a good game, but I forgot what you look like.
I know they’re busy, but every one of them has a smart phone and can always make calls and emails. Have they been around for more than 5 minutes? Only one has.
The real rock stars are the friends who selflessly come over to help over and over. They realize that deep in all this shit, I need to feel like more than dirt.
My husbands siblings need to be here more for him.
ALS is not just killing me but it’s killing my family too.
Something has to change before it’s too late. change starts with family and friends really stepping up to plate.

I’m very alive, yet people treat me like im almost dead.

News flash!I have ALS. My fine motor skills are shot, however guess what? The rest of me works fine, actually better than fine. it angers me that my good friends and family don’t realize that. no one cares to listen to what I need, yet they discuss my needs behind my back and get it wrong every time.
They actually spend so much time taking about me that they are never here to actually help me or even just hang out.
It’s ironic how the amazing friends who are always here for me are people who I have gotten close to recently, not the friends and family who claim to love me.
By not listening to me and my needs, they have made me a prisoner in my own home, relying on someone else for everything.
I now have a new handicap bathroom that isn’t safe or functional for me. I have a kitchen that I must sit in in a wheelchair because no one in my family can put together the high back chair I bought.
I am able to eat my own food, yet the food has to appeal to my tastes. The right for me to feed my own family was taken away from me as well, against my wishes and behind my back.
My true friends and my family may want to start taking to me, not about me. They may want to actually show up to help or visit, not talk about me all day as if I was already dead.
I am very much alive. I have a stronger smarter brain than most of you. If you took the time to listen to me, you’d actually hear what I have to say.
It’s very lonely being written off as dead and not even included on group texts cuz they are too busy talking about me.
I can still talk, walk and eat. ..yes slower…but please don’t rob me of that because it’s easier for you not to deal with it.

I’m back

it’s been a while since I wrote. my house has been a construction nightmare for the last six months. our kitchen was just completed Friday. over the last two weeks, with a huge team of friends, we worked to get the house in order. not everything is finished construction wise, however to have our house back is an amazing feeling.
during all this chaos,I was shopping and preparing for Passover. if this wasn’t enough, I had Lasik surgery last Wednesday and made my daughter a surprise party Thursday night.
by Friday I was searching for my super woman cape.
Saturday proved to be a gift from GD, an unexpected summer day on Shabbat, where we could do nothing but enjoy it .
we had lunch on our new deck.
tonight, miraculously , all the chometz is packed away.
tomorrow we make breakfast in our kitchen.
we can finally see a light at the end of the tunnel.

Wow!

I haven’t written in a while but today was blog worthy. I have the dumbest housekeeper ever, yet can’t replace her until I find an aide because the housekeeper helps me.
What could she have done, you ask? I’ll tell you what she did today.
My husband told her to wake me at 10. At 10:40 my husband calls and she comes in and tells me that he said to wake me at 10. I tell her it’s 10:40 and she says that I was sleeping at 10. Duh! That’s why he told her to wake me.
Here’s another , I told her to move stuff and dust well.
She comes up and says it’s very dusty.
Hello, we’re doing construction, if she doesn’t dust daily it will be dusty.
Here’s the best one today, my husband went to get ice cream and found the half empty milk and fresh veggies in the freezer.
Someone help!
This list goes on and on.
I need to find a good aide so I can hire a good housekeeper.

You never appreciate good help till it’s gone.

Since I was 8 months pregnant with my six year old, I have been blessed with really good help who loved my family as their own. Working full time, it was a relief to know everyone and everything was taken care of. Earlene who had gotten stuck in her country after returning to help her sick kid, returned to us just when I needed her. She cared for my newborn as if he was her own. She helped me after a traumatic c section. When my son was 4 mos old, Earlene got sick. She brought her friend Marlene. She trained her for a week before leaving to have surgery.
Marlene became family. She would love to cook and bake with me Thursday nights way after she was off duty. When my daughter had surgery, she slept on the floor of my boys room so they would not be scared if they woke up at night.
When I lost my job we kept Marlene for a year because we loved her so much. When I had to let her go, she cried and offered to work for free.
For the last two and a half years Ivon worked for us. She was the nicest , caring, hardworking , reliable housekeeper. Ivon got married and moved away.
I hired someone new, who seemed great. Little did we know….

She started out sweet, but raised a red flag on day two. Every day something else happened. First week she insisted on leaving early. She would argue with me and tell me no often. Pretty odd for someone who wants to please. She started lying, wanted Friday off because she claimed she had church thanksgiving night…what religion is that? Black Friday Parish? After being off Wednesday and Thursday she complained all Friday that she had too much work. Duh, that’s what happens when you don’t work. Saturday she asked if my necklace was real silver….another red flag! Today she broke a new vacuum and blamed it on someone else. She tried to give my son frozen fish sticks and argued with me when I said she had to cook em. Later on I had a friend over. My housekeeper went to take out the trash. My friend saw someone by the window and went to see if it was my daughter. My housekeeper stormed in and said ’ you checking on me?, you think I’m stealing?’ . We looked at her dumbfounded. We continue talking and she comes in yelling ” why you whispering about me? You don’t trust me, you think I’m stealing.” Huh?! No one thought that. On her way out she held open her bag and said “look I’m not stealing” and left. What just happened ? Guilty conscience? Ironicly she called the agency yesterday asking for a raise. What nerve! After two weeks when she took tine off already. My husband called her to fire her and she attacked him on the phone. He didn’t even have to fire her, she dug her own grave. I am now helpless when I need it most.
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