NEWS....................

http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=2684&zoneid=99

manifestations...

http://video.google.com/videoplay?docid=387155446941351601&hl=en

AGHHHHH! cancer, stress and life.....

Well, the last few months have been loooong.
My dad was diagnosed with Bladder Cancer around April. This past Thursday he had bladder removed. My heart breaks for him. To see someone you love helpless sucks but my Dad is still smiling and fighting, He amazes me.
We won't know for about a week, if he will need Chemo or not or if they got everything. There have been so many people praying, I feel it all day long.

I didn't grow up with my Dad, I hired a P.I. to find him about 9 years ago, the meeting went well and the rest is history.
The week before his surgery we were both kinda frustrated. He was trying to tell about 2 Siblings I haven't met because my Dad has been married a few times and I felt the it wasn't fair people again were popping in my life and at this point I didn't think i could handle it. I have my life the way I want it right now and it's important I have consistency. I think i forgot that since I am sick and that is a consistent in my life, it isn't for him, he is scared and knows he has made his mistakes in the past and knows he can't go back and fix them but its all been forgiven. I think we were both right and both wrong. He has never been sick in his life, I can't imagine.
I worry about him, I worry I will lose him. I am sad I didn't have him most of my life and I am sad that even if I did, he wouldn't have been the Dad I needed. I don't think we would have a relationship today if we met any sooner....
I feel cheated.....
His wife has been a nightmare pretty much for the entire thing, she handles stress by nagging, complaining and with nasty remarks. We all deal with things in our own way. At this point I hate dealing with her and we basically aren't speaking. If your not on her side, she will make things difficult ( i won't bore with all the details).
With this knowledge I try to remember all my shortcomings and all the times mercy was given to me when I didn't deserve it, but I also am trying to figure out the boundaries, how to stick up for myself and my siblings, while trying not to scream and yell at her... this is about my Dad ( my confession, I haven't been great at this, I haven't been the bigger person at all times)
God will have to work this out.
My Body is pumping with ADRENALIN and I am sure when I come down from all this stress I am gonna have a flare on top of a flare, so I am trying to remain calm :)
When I can afford it, I need to take a yoga class.

This did get me to thinking about other areas in my life that I thought were so horrible. I look back at them and can see my blessings, the family I did grow up with, the way i way provided for, my friends-who are my family, how far I have come and where I could have ended up. The things I take for granted and all the things that were meant for bad, that God turned around for good.

What's going on inside my head...

I've had a ton of things running through my mind lately... just haven't written them down. This is probably why my my thoughts won't shut off.

In December I started having pain in the middle of my chest and back which quickly turned into having a very hard time breathing . This was the first time I was truly scared Lupus was going to kill me. I started thinking about writing letters to the people I loved, how much I would miss my friends and my nieces. I was also so tired at this point I realized I was actually to tired to care if I died or not. Dr Got me on some prednisone and after I had more strength I decided I needed to finish my Living Will and give my Dr's copies..... that was a surreal experience.
I am still dealing with these symptoms and I'm still home on disability. The Dr added Imuran about four months ago (which is a heavy immunosuppressant) to try and get these symptoms under control, I am still waiting for results.. Right before I started the prednisone I had lost most of the weight I gained while on prednisone before and within 8 weeks of being on it I gained 20 lbs. I saw the scale at the Dr last week and I almost had a heart attack! I had just started feeling like myself again. I felt attractive and I liked the way I was looking in my clothes, I was getting compliments again on how I looked and I even got into my skinny pants! My friends keep telling me I am still beautiful and I look fine and although I appreciate that very much and it's great to hear, I want to scream when I get told that because that isn't the point. I don't like, I hate looking this way, I hate the my face is swollen and I have neck fat! I don't want pictures taken of me because it doesn't even look like me. I feel I am looking at a stranger.

I'm still waiting (after 12 months) for The Department of Human Services to let me know if I qualify for services for school/job re-training since I won't be going back to nursing. I had to call my caseworkers supervisor-AGAIN, to complain about the calls I am NOT getting back. The long term disability company says within the next few months I will have to apply for SSDI and if I qualify I should get a check for all the months I have already been on long term disability and then I they would get a cut of that, Which makes no sense to me. They have hired me free legal council to make sure this get done quickly. Which I am sure the lawyers goal is to get my long term company what they want. So, I will have to call SSDI and learn more about this situation. But if I get SSDI, I wonder how I will live, the money is so insultingly low, can see people are terrified of getting sick. Sick people have enough to worry about, they don't need to worry about being treated like an annoyance.

As I have reached my 35th year of life (which I never expected to do honestly) I think about all these things I never thought would be a reality for me. Such as, aging parents, sickness, bills, retirement, living wills, insane healthcare premiums, the death of some of my deepest dreams and the hope of a future that can still be good.

Being sick has also taught me some things. I say "screw it" alot more, lol.... I want to enjoy things when I can and I don't think I worry as much, possibly because I am more apathetic and partly because I know things are going be what they are going be. To kill myself with worry isn't making it any better (at least I am trying not to worry as much). I am also willing to take more chances.
But I'm concerned that the hope I used to have for life, love and a future is dying. I feel more Jaded about things and I don't want to. I know part of this is growth, it's another chapter in my life that I need to learn from and grow from. But I have this unsettled part of me that knows I am not where I am supposed to be yet. I want to have hope again that I will fall in love and that the few dreams I have left are still possible.

So many people have things much worse than I do. I am not a fool, I realize my blessing. In the midst of what I am going through I know without God I would never make it. Even though I am still on disability it's enough, with some extra. My old car finally went to be with its car maker and I had to get another one and God is providing for that also. I can hear music, which brings me peace, I can watch a baseball game, I can feed myself, I can bath myself, I have money for food, I have the most amazing friends a person can have, I can read, I can watch a movie, I have a bed to sleep in and a roof over my head... The list could go on and on and that is what I try to hold onto when I don't know if I am going be able make it or I don't know if I want to.

Update

Hello again,

The Lupus has been causing problems with my lungs. I had to increase my Prednisone dose to 30mg a day (taken along daily with my 100mg of Imuran and 400mg of Plaquenil) to help my breathing/fatigue and constant back and chest pain.
I have to go back to the Dr this week, because it seems to take more and more Prednisone each time to help me function better... What's next?
I wonder sometimes if my lungs are just gonna shut down......

My long term disability company called and they want me to file for SSDI, It disgusts me how much they expect you to live on. They have a law firm they use and pay for so I can get my SSDI paperwork started and finished quicker, and then I was told if I am approved I will get back pay and part of that will go back to the Disability company. I was soo angry, it's their job to pay me. That is why I paid my premiums while working, so if I needed long/short term disability I would have it. why do I have to give them part of my back pay!
The disability company provides FREE legal help from a law firm they contract in. I don't know if I want to use a law firm that was hired by the disability company, who only has the Disability Companys interests in mind. Am I wrong??
I will never understand how when someone becomes sick, they become the enemy of the insurance and employment worlds?

I also got a notice from my medical insurance company last month, who I have had an individual policy with for about ten years. That during my annual rate increase, a utilization review was done also, and since I turned 35 this year that added more money to the new premium also.
I was paying $668 and some change every two months to $890 and some change every two months. I wrote the Vice President of the company, explaining my situation and that I didn't seem to be getting a clear answer to my questions the numerous times I called. I told him I was on disability and this new premium was shocking to say the least (if i can figure out how to do it, I will upload a copy of the letter I wrote. I am not allowed to switch to a different policy since Lupus is an Automatic Decline when applying for a private policy ( it would be allowed if this was a group policy). I was concered that even if they would have allowed me to switch policies it's almost the end of the yar and I had already met my deductible and most of my out of pocket deductible, where after that is met most medical expenses are covered at 100% and I didnt want to lose all i accrued already.
I was called back by an employee with a response, even though the policy I have is no longer being offered, they would allow me to switch my $250 deductible to $500 deductible and I would only have to make up that additional $250 and I could keep all of the out of pocket expense I have already accrued (Thank God) and it would lower my bi-monthly premium to $782 and some change. My Aunt said she would give me the extra $250 for this year, just so I could have some relief in my bi-monthly payment.
I keep thinking would if I didn't have a family who could help? What if I was a single Mom, elderly, a shut in or someone who had no one in this world to go to????
I feel so blessed and I know I am blessed but I just can't stop thinking about other people who are going this alone.....
I know the thought of having to one day giving up my medical insurnace and going into the Medicare/Medicaid system TERRIFIES me. As someone who worked in the medical field, I would say people caught in the system mostly get sub-par care at best, due to what the systerm doesn't provide for and all the overload in the systerm. Even with a new President coming it will take years to get a new healthcare system in place, what do WE do till then?

I wonder if maybe I shouldn't even say anything, Maybe I say to much as it is? Should I even bother to care or write this blog or should I just count my blessings? Or is there more I should be doing to fight what is wrong with this system? And if there is, where do I start?

Just some thoughts inside my head........

Good site for people who are disabled

http://www.icanonline.net/channels/employment/

Employers harming people???

Employers use federal law to deny benefits
Saturday July 5, 11:31 pm ET
By Mark Sherman, Associated Press Writer
Workers -- and some judges -- frustrated in legal fights over benefits with large employers


WASHINGTON (AP) -- Dying of cancer, Thomas Amschwand did everything he was told to make sure his wife would collect on the life insurance policy he had through his employer.
"He was obsessed with dotting every `i' and crossing every `t'," Melissa Amschwand-Bellinger recalled about her husband, who died in 2001 at age 30.

But Spherion Corp., the temporary staffing company where Amschwand worked, told Amschwand-Bellinger she would not receive any of the $426,000 in benefits she believed she was due. When she went to court, Spherion succeeded in getting her lawsuit thrown out. The Supreme Court on June 27 refused to review the case.

Amschwand-Bellinger received a refund of the few thousand dollars in insurance premiums she and her husband dutifully had paid. The total, she said, would not cover the costs of his funeral.

The story has played out often under the federal Employee Retirement Income Security Act. Designed to protect employee benefits, the law has been used by employers as a shield against suits.

Federal appeals courts, interpreting Supreme Court decisions dating to 1993, consistently have said companies that offer health, life and retirement benefits under ERISA cannot be sued for large amounts of money, or damages. Instead, they can be sued only for typically smaller sums such as Amschwand's insurance premiums.

Several federal judges have bemoaned the unfairness even as they have felt constrained to rule in favor of employers.

"The facts ... scream out for a remedy beyond the simple return of premiums," Judge Fortunato Benavides of the New Orleans-based 5th U.S. Circuit Court of Appeals said in the Amschwand case. "Regrettably, under existing law it is not available."

The Bush administration has argued that the appeals courts are misreading the precedents and has asked the high court at least twice to clarify the earlier rulings. So far it has refused.

Congress, which could amend ERISA to make clear such suits are allowed, also has taken no action.

The result, in the view of ERISA experts, the administration and some lawmakers, is perverse.

"The beneficiary under the policy didn't get the promised benefit," said Colleen Medill, an expert on ERISA at the University of Nebraska-Lincoln. "To say we're just going to return your premiums, that's a total farce. That's not what they paid the premiums for. They paid them for the benefits."

Sen. Patrick Leahy, chairman of the Senate Judiciary Committee, said at a recent hearing that before ERISA became law, employees clearly could sue for benefits in state courts.

The court rulings, said Leahy, D-Vt., have left people "more vulnerable than they were before the law was passed."

Spherion's decision to deny benefits to Amschwand-Bellinger turned on an odd set of facts. Spherion, which employs about 300,000 people, switched insurers after Thomas Amschwand was diagnosed with a rare form of heart cancer. The new policy did not take effect until an employee worked one full day. Spherion never informed Amschwand of the requirement.

Amschwand asked repeatedly whether there was anything else he needed to do and was told no. He asked that the new policy be sent to him. Spherion never did so.

He died without returning to work. His widow said he easily could have worked a day if that was what it took to activate the new policy. Spherion could have waived the one-day-of-work provision, as it did for other employees but not for Amschwand.

Spherion spokesman Kip Havel issued a brief statement when contacted by The Associated Press after the high court declined to review the case. "We are pleased the court has made its decision and the matter has finally been resolved," Havel said.

The court also recently turned down an appeal from Louis Gerard "Gerry" Goeres, who sued Charles M. Schwab & Co. over hundreds of thousands of dollars in retirement plan benefits.

For 16 months, Schwab mistakenly refused to acknowledge Goeres as the beneficiary in the retirement plan of his domestic partner, Stephen Ward, a Schwab employee who died in 1999. By the time Schwab acknowledged its error, the value of the account had declined by more than $500,000. Goeres sued for the rest. Federal courts dismissed the suit. "Unfortunately, legal relief is not available," U.S. District Judge Charles Breyer said in ruling against Goeres.

"You know the Schwab commercial, `Talk to Chuck?'" Goeres said. "I thought if Chuck knew this, he'd say, 'Oh my God, this is so wrong.' I live on naive dreams."

Schwab said in court papers that Goeres could have taken legal action soon after Ward's death, when he first was told he was not the beneficiary.

Amschwand-Bellinger said the cases show the need for either the court or Congress to provide "some sort of meaningful remedy for employees when employers have a breach of fiduciary duty."

A Texas native who lives in an unincorporated Houston suburb, she has since remarried and has an 18-month-old daughter. She is president and executive director of the Amschwand Sarcoma Cancer Foundation, which she founded with her first husband.

She recognizes that she is more fortunate than many others who have fought similarly futile battles for benefits under ERISA. "What if we had had children and I was a stay at home mom?" said Amschwand-Bellinger, who previously worked for a public hospital system. "What if I was 60 years old, with no skill sets, and I had to go back to work?"