They Want Me Dead?

[trix]

Sorry I have to get this off my chest, I'm so freaking pissed the budget cuts are going to kill me!!!!

 

Let me give you some background, when I was 2 yrs old my Dad was drunk driving and was in a accident and I went through the windshield of his van landed in the middle of the highway. I was near death. While I was in the hospital (3 months) they couldn't get me to stop bleeding They then discovered that I have Type 3 hemophilia, von Willebrand Disease type 3,details on this disorder.

 

This disease caused me to be home bound most my life, no sports, no social life none of the things a normal person could do. It still effects me to this day and will never go away. I have to self infuse myself 3x's a week with blood transfusions at home. it has cause my bones to detriate rapidly. although I'm only 29 years old, I have the bones and health of a 60 yr old, kinda like the movie Benjamin button. If you haven't seen it its a great movie. but that's sorta the life I live, very similar.

 

I have 3 ruptured disks in my back, degenerative disk disease, hospitalizing muscle spasms, severe agoraphobia,Hepatitis a,b,c(from blood transfusions) as well as seizures. I can't have surgery to fix any of these back issues due to my bleeding disorder example; I had my wisdom teeth pulled and was in the ICU for 3 weeks due to excessive bleeding, so there is no way any doctor will cut into my spine to fix the disks, so I live in extreme pain every day of my life, no way around it. The medicine I have to infuse cost $18,000 per shot that's $54,000 a week, that makes my blood like a normal persons for 8-12 hours.

 

Now here is why they are killing me!!!

 

Lets start off like this, without those shots that stop me from bleeding I'm a paper cut away from possibly bleeding to death its that severe, The state of Michigan denied me medicade, and Social Security has denied me. I live right now with no insurance so I go without the medication to take if I get a bleed, certain death. Hospitals don't have this medication in stock due to only 1/1,000,000 people being effected by this disease. Now even worse our new Governor Rick Snyder thought it would be OK to take 2.4 million dollars away from the Hemophilia foundation because he didn't think we needed that much money in this area of the budget.

 

Due to the disease I suffer from, I cant take, NSAIDS, motrin, tylenol, no OTC medication. I can only take opiates that's all. so they had me on 100mcg Fentanyl, 80 mg Oxycotin, and list of narcotics. they were having a severe effect on my quality of life to the extreme of kidney failure, and deep depression I almost took my own life due to the pain/addiction.

 

I had to choose live or die, I chose life, I acquired my MM card and stopped taking ALL pain meds, then guess what happens LEO took that from me seized my ablity to medicate on a non lethal medication that doesn't require insurance, and my body wont reject due to my disease. So now I have NOTHING to help my extreme pain, I'm 29 yrs old and bed ridden for the most part.

 

Now I open my email moments ago and see yet again good ole Rick Snyder, is again cutting the budget on funding for this disease, they have taken my right to medicate away not only for pain but to infuse to keep me alive, I'm on permanent disability per my 10 doctors, THEY WILL NOT LET ME WORK.

 

They denied me Medicaid for what reason I have no idea, They have denied me SSI, They denied my use of MM, they are dragging me through court for something that happened to me, I was the victim of a robbery, why do they do this? OHHH yah they stopped my food assistance last week to, they said that because they think I should be fine to work that I don't need food assistance??????

 

I'm fed up to the MAX!!!, I don't deserve this.. since all this court stuff I have lost my home, my transportation, my girlfriend, my savings, my medication, my freaking sanityyyyyyyy.

 

Thanks for taking the time to read this sorry I had to vent I can't let the government keep taking everything away piece by piece.

 

Please lets make this government understand they cant keep doing this to people starting May 25th

 

Thanks again sorry I had to vent only way to exhaust some of my frustrations.. I just want to let LEO to know where not all criminals, were sick people. and the government just keeps taking the things that keep us alive away.

 

Trix

[Phil78]

terrible story, bro....

 

while you are suffering, people like snyder, who are ignorant to the suffering of people who don't have millions of dollars and health problems, are eating steak dinners and driving around in BMW's.

 

you want a tax cut, snyder, cut your own pay and health benefits!

 

why is they have to "ask" state workers if they will take a cut, but they EFF everyone else without asking?

[Retta]

DHS denies almost everyone for SSI and Medicaid and SSD does the same, you need to file an appeal immediately upon receiving the denial letters. The system is very slow, it took almost two years for my SSD hearing. I think they issue the denials to see who won't appeal and so that all of those social security lawyers have a steady income.

[imiubu]

Yes, get a social security lawyer immediately. Once you show dhs that you are in appeal you should get health, food and even cash assistance. When you win your case, you will have to pay the cash portion back to the state. This just happened with a friends son.

As soon as they got to court (it's a slow go) he was approved. Gotta grease the wheels and get a lawyer NOW. The whole system is in bed w/ each other. Also, the lawyers fee is contingent upon you winning so, ya know... + they do not get 25% of your back earnings any more. Top they get is 6k now. Go kick some heinie!

[Royal Smoke]

Sad to hear this crap Trix!

 

Are you off the pain killers now? I remember you saying you had supplemented with mm before, but now I don't remember......

 

 

My brother has been in a fight over workers comp / ss disability for years! Someone said it above, but I think it is normal practice to deny everybody and force them to appeal....

Do you know for a fact that the budget being cut is going to disrupt your medicine supply? I thought Lovenox shots were expensive.... Your medicine is astronomical!!!!

[trix]

Sad to hear this crap Trix!

 

Are you off the pain killers now? I remember you saying you had supplemented with mm before, but now I don't remember......

 

 

My brother has been in a fight over workers comp / ss disability for years! Someone said it above, but I think it is normal practice to deny everybody and force them to appeal....

Do you know for a fact that the budget being cut is going to disrupt your medicine supply? I thought Lovenox shots were expensive.... Your medicine is astronomical!!!!

Royal, I was off everything yes, but since the Judge has put a restriction on my bond to not allow the use of Medical Marijuana, I have been placed back on pain meds, thing is I have no insurance so I have none to take. the medicine I take is called Humate-p its a synthetic blood product $18,000 for a 8-12 hr dose.Type 3 vWD is the rarest form of the disease, affecting about 1% of people with vWD. A person with Type 3 vWD produces little, if any, vWF and usually has the most severe symptoms. well I tried finding the price but no freaking websites will even provide it,

 

I know that headline was quite bold, but I cant change it now. but its true They keep making cuts and denying me help so the outcome may as well be a death sentence for me

 

Wednesday May 25th. The steps of Lansing will be full that day!! As you can see both of these issues are of the utmost importance to me, and I'm directly effected by both issues at hand!! LEAVE ME ALONE ALREADY!!!

 

Not only will there be a crowd of MM protesters in Lansing but look at the next set date for the hemophilia foundation's rally!!!\

 

 

Funding for adults with hemophilia under Children's Special Health Care Services is once again at risk. The hemophilia community must mobilize quickly to educate the new legislators on the importance of maintaining this safety net program.

 

Please join us on Wednesday, May 25, 2011 for the first of two Lansing Days:

 

8:00 a.m. Bus leaves HFM Office in Ypsilanti

9:00 a.m. Stop in Brighton to pick up passengers

10:00 a.m. Arrive in Lansing

10:45 a.m. Meet with legislators

12:00 p.m. Lunch in the Capitol

1:00 p.m. Meet with legislators

2:00 p.m Leave Lansing

4:00 p.m. Return to HFM Office

 

The governor is fast tracking the 2011-2012 budget and plans to make it a two-year budget plan. If we are going to have any impact we need to start now. Please contact the HFM Office if you would like more information.

 

Our next Lansing Day is scheduled for Wednesday, May 25, 2011, please mark your calendar and plan to attend. Other plans are underway for staff visits before Lansing Days. If you would like to visit your legislator before Lansing days let us know and we will help get you an appointment and possibly a ride to Lansing.

 

If you are interested in participating in any of these upcoming advocacy events, please contact Ann LeWalk lewalk@hfmich.org .

 

If anyone is around when the bus takes off they will provide rides for us, for the rally.

 

Trix

[phaquetoo]

DHS denies almost everyone for SSI and Medicaid and SSD does the same, you need to file an appeal immediately upon receiving the denial letters. The system is very slow, it took almost two years for my SSD hearing. I think they issue the denials to see who won't appeal and so that all of those social security lawyers have a steady income.

 

 

WOW!

 

My heart totaly goes out to you! I thought i had it bad! NOT!

 

You always think your life is bad till ya read something like this! It truly sounds like they want you to die! How can they deny you ssdi with your history! if this was your first denial get an attny imediatly, they should have sent you something for you to appeal, make sure it gets mailed by the time it says. if this was your last appeal get an attny fast, have them fill out your new app for ssdi and do it now!

 

It took me 8 yrs and i went thru almost 2 compelet runs (some know what i mean) but i got every penny of it, im now 48 when i first applied I was 38 white and dont look disabled (im sure you know the type) we dont all look disabled!

 

Im sorry to all but a white man of a young age has the hardest time getting on ssi or ssdi! like retta says they dont give to many ssdi the 1st time thru! Im so sorry to hear this news, now what is with the mm card? you got denied? if so you must have a dr. that has said it will work for you! if you have that you can use mm and use the a.d!

 

If i can help you I will do what i can for you! pm me! IM not rich by no means but i do have meds at least, and sooon i should have plenty, if you need a dr. pm me I will send you in the rite direction, depending on where you live, im sure we have a few dr.'s on here also that will help you!

 

I hope things get better, Please hang in there, this community is with you!

 

Peace

FTW

Jim

[trix]

Phaq,

 

The reason I cant use MM, is cause the Judge ordered me to restrain from the use of Marijuana!!!

 

2 doctors wrote personal letters to the Judge explaining the issues I have w/ not being able to take other medications, he didn't care they stated no drug use Its Fedral Law, what a crook of sheet.

 

So yuh Lol, just seems they don't want me to live a decent life, rather me keep taking Narcotics, even though my doctors have stated on record that its going to kill me!!!

 

Thank you all for your concerns, all I can say is see you in Lansing.. I know the hemophilia foundation has over 2,000 people attending their rally, on the same day as MM community has theirs planned the steps will be full that day!!

 

Thank you all again,

 

Trix

[phaquetoo]

Phaq,

 

The reason I cant use MM, is cause the Judge ordered me to restrain from the use of Marijuana!!!

 

2 doctors wrote personal letters to the Judge explaining the issues I have w/ not being able to take other medications, he didn't care they stated no drug use Its Fedral Law, what a crook of sheet.

 

So yuh Lol, just seems they don't want me to live a decent life, rather me keep taking Narcotics, even though my doctors have stated on record that its going to kill me!!!

 

Thank you all for your concerns, all I can say is see you in Lansing.. I know the hemophilia foundation has over 2,000 people attending their rally, on the same day as MM community has theirs planned the steps will be full that day!!

 

Thank you all again,

 

Trix

 

well i gotta tell ya, with what they are getting from you for your meds, I think id have to contact the news and do an interview vaping or using medibles, and tell them you are going to jail when you do a urine drop, show your card on air, and lets hope the news shows up at your probation or bond hearing, I have got caught using on both probation and bond, and got out of it, and I would have to say im not as qualified as you are for the mm program! Get all of your dr. records ready and bring em with ya to court, how they gonna put you in jail with your ailment!

Take a stand, you dont have to wait till may, you can start now!

 

Peace

FTW

Jim

 

p.s I know it is easy for me to say, but i did do that, and i wasnt in jail more than a nite, and I dont think any jail that knows anything would accept you!

[+Annnie]

Trix.. I am so furious reading your story.. words cannot express.. Please pm me and i will do whatever i can to help you..

[peanutbutter]

I'm thinking the Problem Solvers.

[bobandtorey]

Hello John /Trix

What a sad story i know we have been together and been going to the compassion Clubs when i here your story ares looks like noting

when i came to your court day i knew right then that you needed support and i will help inn anyway i can when i applied for my SSD i never left the house you can do it all on-line and it looks like your good at that

anyways i hope this post finds you well today

 

Peace From The Front

 

Bob&Torey

[mizerman]

DHS denies almost everyone for SSI and Medicaid and SSD does the same, you need to file an appeal immediately upon receiving the denial letters. The system is very slow, it took almost two years for my SSD hearing. I think they issue the denials to see who won't appeal and so that all of those social security lawyers have a steady income.

Retta is correct. Unfortunately the SSD process does take a couple of years. My wife was lucky, in one respect, as she got her SSD without having to get an attorney.

 

Me? I had to get an attorney. Mine was Terry Berlin - call him ASAP.

 

 

Mizerman

[Sledge]

I was fortunate, was denied on 1st try and picked up on 2nd, no lawyer

[trix]

Hey I just wanted to say thank you to everyone,

 

I shouldn't have posted that, but man I hadda to get my stress off my chest it was killing me. plus I wanted to show LEO and TROLLS that we aren't all a bunch of drug dealers and dope heads.

We are sick people that are getting kicked around and it just isn't right, its tearing us apart.

 

I JUST got home from Social Security Office, I had to go in there and talk to someone they said they would contact me withing 7-10 days, after that I will lawyer up just kills me even to say the word lawyer I'm tired of fighting everything I do in life, its a joke that they can't just help people that need it. I know a bunch of people that abuse the system and are out drinking and having a good ole time on SSI and disability, and here I'm venting to strangers online about how crappy the process is. go figure ehh?

 

Thank you all again for your support, I will be there for you guys/gals if you ever need me I promise..this is a great community of people here on the MMMA

 

Trix

[Retta]

Write to your state Senator Trix, Senator Switalski's right hand lady was able to get me county insurance until my SSD was approved.

[trix]

Thank you, John – This is an incredible story which I will be sharing with the Senator, hopefully today after the Governor’s budget presentation. I will get back in touch with you as soon as I know which direction Senator Gregory would like to pursue. Thank you again for providing the information. Karen

 

 

 

Karen Adams-Powell

_____________________________________________________

 

Thank you for contacting our office regarding your situation. I am sorry that you have had to go through this. I forwarded your e-mail to your State Representative, Lesia Liss, so that her office can look into this matter for you. Sincerely, Jonovan Luckey

 

 

 

 

I'm already doing that Retta!!! started a while back, still waiting on MY rep. to get back, but there have been 2-3 others that are showing interest in what I have written them.

 

Trix

[TajMahal]

Morning Trix,

 

No apology needed for posting your story, am sure many here are with you. When I first read it, made me very angry the system is treating you this way. There is no reason on earth for this to happen to anyone.

 

Am glad to hear you have contacted your representative(s). Sounds like they are at least listening. I hope so.

 

Peace

Taj

[capoalto]

Sorry I have to get this off my chest, I'm so freaking pissed the budget cuts are going to kill me!!!!

 

Let me give you some background, when I was 2 yrs old my Dad was drunk driving and was in a accident and I went through the windshield of his van landed in the middle of the highway. I was near death. While I was in the hospital (3 months) they couldn't get me to stop bleeding They then discovered that I have Type 3 hemophilia, von Willebrand Disease type 3,details on this disorder.

 

This disease caused me to be home bound most my life, no sports, no social life none of the things a normal person could do. It still effects me to this day and will never go away. I have to self infuse myself 3x's a week with blood transfusions at home. it has cause my bones to detriate rapidly. although I'm only 29 years old, I have the bones and health of a 60 yr old, kinda like the movie Benjamin button. If you haven't seen it its a great movie. but that's sorta the life I live, very similar.

 

I have 3 ruptured disks in my back, degenerative disk disease, hospitalizing muscle spasms, severe agoraphobia,Hepatitis a,b,c(from blood transfusions) as well as seizures. I can't have surgery to fix any of these back issues due to my bleeding disorder example; I had my wisdom teeth pulled and was in the ICU for 3 weeks due to excessive bleeding, so there is no way any doctor will cut into my spine to fix the disks, so I live in extreme pain every day of my life, no way around it. The medicine I have to infuse cost $18,000 per shot that's $54,000 a week, that makes my blood like a normal persons for 8-12 hours.

 

Now here is why they are killing me!!!

 

Lets start off like this, without those shots that stop me from bleeding I'm a paper cut away from possibly bleeding to death its that severe, The state of Michigan denied me medicade, and Social Security has denied me. I live right now with no insurance so I go without the medication to take if I get a bleed, certain death. Hospitals don't have this medication in stock due to only 1/1,000,000 people being effected by this disease. Now even worse our new Governor Rick Snyder thought it would be OK to take 2.4 million dollars away from the Hemophilia foundation because he didn't think we needed that much money in this area of the budget.

 

Due to the disease I suffer from, I cant take, NSAIDS, motrin, tylenol, no OTC medication. I can only take opiates that's all. so they had me on 100mcg Fentanyl, 80 mg Oxycotin, and list of narcotics. they were having a severe effect on my quality of life to the extreme of kidney failure, and deep depression I almost took my own life due to the pain/addiction.

 

I had to choose live or die, I chose life, I acquired my MM card and stopped taking ALL pain meds, then guess what happens LEO took that from me seized my ablity to medicate on a non lethal medication that doesn't require insurance, and my body wont reject due to my disease. So now I have NOTHING to help my extreme pain, I'm 29 yrs old and bed ridden for the most part.

 

Now I open my email moments ago and see yet again good ole Rick Snyder, is again cutting the budget on funding for this disease, they have taken my right to medicate away not only for pain but to infuse to keep me alive, I'm on permanent disability per my 10 doctors, THEY WILL NOT LET ME WORK.

 

They denied me Medicaid for what reason I have no idea, They have denied me SSI, They denied my use of MM, they are dragging me through court for something that happened to me, I was the victim of a robbery, why do they do this? OHHH yah they stopped my food assistance last week to, they said that because they think I should be fine to work that I don't need food assistance??????

 

I'm fed up to the MAX!!!, I don't deserve this.. since all this court stuff I have lost my home, my transportation, my girlfriend, my savings, my medication, my freaking sanityyyyyyyy.

 

Thanks for taking the time to read this sorry I had to vent I can't let the government keep taking everything away piece by piece.

 

Please lets make this government understand they cant keep doing this to people starting May 25th

 

Thanks again sorry I had to vent only way to exhaust some of my frustrations.. I just want to let LEO to know where not all criminals, were sick people. and the government just keeps taking the things that keep us alive away.

 

Trix

 

 

 

darn bro... all i can think of when i read this is, if you lived somewhere other than michigan you would probably have a way better quality of life. is there anything you could use im sure between all the people on here with so much compassion for their fellow man you should be able to get some help. God bless bro capoalto@live.com

[jessiejamez]

wow, I just sent you a PM. Never mind. Is there anything I can do to help you?

[bobandtorey]

Hey I just wanted to say thank you to everyone,

 

I shouldn't have posted that, but man I hadda to get my stress off my chest it was killing me. plus I wanted to show LEO and TROLLS that we aren't all a bunch of drug dealers and dope heads.

We are sick people that are getting kicked around and it just isn't right, its tearing us apart.

 

I JUST got home from Social Security Office, I had to go in there and talk to someone they said they would contact me withing 7-10 days, after that I will lawyer up just kills me even to say the word lawyer I'm tired of fighting everything I do in life, its a joke that they can't just help people that need it. I know a bunch of people that abuse the system and are out drinking and having a good ole time on SSI and disability, and here I'm venting to strangers online about how crappy the process is. go figure ehh?

 

Thank you all again for your support, I will be there for you guys/gals if you ever need me I promise..this is a great community of people here on the MMMA

 

Trix

 

their are no stranger here

but their may be a few troll's

[trix]

So I cleaned up my letter a bit that I posted in the OP, and sent it to the senator;

 

John – can you send me information on your filing for Medicaid? Were you issued an ID #? I want to contact DHS to see if there is anything we can do to assist in this area. Karen

 

 

 

Karen Adams-Powell

 

Constituent Relations Director

 

Senator Vincent Gregory’s Office

 

This isn't the rep. from my district, this is the rep. for the 14th District, this county has what seems to be good leadership, they have been very prompt on returning my emails that have been sent on my concerns with the medical marijuana law SB17, as well as very responsive to my letter about my legal situation, as well as my letters about my health insurance, and food assistance issues. they have addressed each topic, SB17 has yet to be addressed with the answers that I can post yet, but I have high hopes to receive a well written response to that subject.

 

I really encourage the people of MMMA, to take advantage of the link provided by blueberry in the email your representative thread. our letters are being read and in this instance seems they are trying to help..

 

 

 

 

Trix

[menotyou]

They keep punching you in the face but you won't fall down.

God bless you.

[MORE COWBELL]

terrible story, bro....

 

while you are suffering, people like snyder, who are ignorant to the suffering of people who don't have millions of dollars and health problems, are eating steak dinners and driving around in BMW's.

 

you want a tax cut, snyder, cut your own pay and health benefits!

 

why is they have to "ask" state workers if they will take a cut, but they EFF everyone else without asking?

EXACTLY...WHY DONT THE NEO-CONS TAKE A 30% PAY CUT LIKE THE REST OF US HAVE??????????

 

THIS MADNESS HAS TO END!

 

THEY WORK FOR US...WE PAY THEIR SALARY/BILLS!!!!!!!!!!!!!

 

GOVERNMENT IS TO PROTECT THE COMMON CITIZENRY FROM BIG BUSINESS AND THEIR RAPACIOUS APPETITE FOR CONSUMPTION AND THEIR NEED FOR BIGGER PROFITS AT ANY COST...EVEN AT THE EXPENSE OF THE WELL BEING OF FUTURE GENERATIONS! GOVERNMENT CAN WORK-WE SEE IT OVER IN EUROPE.

SWEDEN/DENMARK ARE GREAT EXAMPLES...

 

 

TOO BAD HERE IN AMERICA WE SPEND THE FUTURE GENERATIONS WELL BEING ON WARS AND THE FEEDING OF THE MILITARY INDUSTRIAL COMPLEX!

 

 

UNTIL WE CHANGE THAT MINDSET .............WE ARE DOOMED AS A PLANET...

 

TAKE HEED WITH THE TALE BY DR.SUESS

 

******** THE LAND OF THE LORAX *********

 

THEY HAVE LOST THEIR WAY-THEY ARE BLINDED BY GREED AND FEAR-THEY BURN UP OUR PLANET...THE MADNESS NEEDS TO STOP

[Royal Smoke]

Royal, I was off everything yes, but since the Judge has put a restriction on my bond to not allow the use of Medical Marijuana, I have been placed back on pain meds, thing is I have no insurance so I have none to take.

 

This sucks man!

 

So you cannot use mm and you can't afford pain meds? This is not good.....

 

Do you have a script that you cannot afford to fill?

 

Perhaps we could get some money together for your meds......

 

Pain meds.....not the $18k meds.... LOL