So frustrated-in tears

[fauxgypsy]

I am on Mississippi Medicaid. I was self employed and uninsurable before this diagnosis. It is so frustrating to try to find doctors that will take it. Thought I was going to see a dermatologist today only to find out they had scheduled me with a general surgeon for a biopsy. I don't know how much you know about Medicaid but you only get 11 doctors visits a year. I really need to see a dermatologist. All I kept hearing is that they don't take Medicaid. It is getting harder and harder to find doctors who take Medicaid. I am so tired of being treated like a second class citizen. There are very few doctors who got through school without federal aid. They could use my tax dollars but now they won't accept them. I know that Medicaid does not pay well but I cannot change that. I finally got an appointment but now I am exhausted and will have to miss more classes.

On top of all of this they are wanting to biopsy a place on my mastectomy arm. No one seems to be willing to answer my question about lymphedema risks. I don't know what to do.

Leslie

[sarah]

Leslie,
Sorry to hear about your problems with doctors. That wouldn't happen here in France.
Everyone should be able to get medical care not just the rich.
My father was a doctor and he would be ashamed of this behavior.
You shouldn't have this stress on top of your disease.
good luck, hope you find a doctor that remember the hippocratic oath.
hugs and love
sarah

[Vi Schorpp]

You are so right...our priorities regarding health care are pathetic. I did not realize that you could only have 11 doctor visits a year. Did you want to see the dermatologist for whatever they now want to biopsy?

[fauxgypsy]

I am ashamed of their behavior. I am ashamed of our healthcare system. One of them told me I should just let my general practitioner handle it. I told her that maybe she should tell all of their patients that and that maybe then she would have no income. If my general practitioner could handle I would be happy to let him. It is stressful and then you wonder if you would be getting better care if you had private insurance. I cannot imagine what it is like for the older people, the people with some mental impairment, and the less educated that are on Medicaid. I wish all of our politicians had to be treated like this at least once in their life. Maybe then they would see how bad the system really is and do something to fix it instead of finding ways to line their own pockets.

[hutchibk]

Faux - if it's not too personal, why were you un-insurable before b/c diagnosis? Are you still working full-time or can you apply for your SS disability?

Have you considered contacting LAF for help/advice?

http://www.livestrong.org/site/c.khLXK1PxHmF/b.4393279/
LAF Survivorcare. If you need immediate assistance, please call us at 866.235.7205. We are available Monday – Friday, 9-5pm ET (excluding holidays)

[fauxgypsy]

I thought that I was going to see a dermatologist until this morning but it turns out that the dermatologist that they called will not take Medicaid. So they just scheduled an appointment with a general surgeon to biosy the rash. I am worried about the biopsy because it is on the mastectomy arm to begin with and when I ask them about this everyone of them tells me to ask someone else. Since I have so few visits I feel like it would make better sense to see a dermatologist in case they are wrong about it being a viral infection. If it is not a viral infection there is really no point in seeing the infectious disease person again. It just seemed like a really round about way of doing things. I saw the infectious disease person a couple of weeks ago and he did no tests, just prescribed medicine that is not solving the problem. With Medicaid you only get 5 prescriptions a month and only two of those can be name brand. So this month I could only get part of my prescriptions filled. I cannot afford for them to just throw medicine at this until it goes away. Besides the fact that I am the queen of side effects so it could just get worse.
Leslie

[hutchibk]

please see my post above yours. Is your onc aware of this? Have you applied for prescription assistance?

[sarah]

also let me remind you that the US government pays twice (yes that's double) per person for healthcare in the US than governements with univeral healthcare - that word that the health insurers have Americans scared of because they're greedy bastards - just like the wall street manipulators. Universal healthcare here in France is fair, honorable, cost effective and you can see the doctors you need or want to see.
I feel sorry for anyone in America that isn't rich or doesn't have great health insurance (and then you may still have problems and have to fight for your treatments - I did) that your company pays for and the government pays for all those emergencies that the uninsured have to use. Hopefully someday America will have health care that everyone can afford and use.
Leslie there are good doctors out there, I hope you find one.
At least now, more brainy people will more likely be going into medicine and science and not wall st!!! That's a good thing.

[fauxgypsy]

I am in a weird kind of limbo as far as the disability goes. I had medical problems prior to this. I was looking into the state's high risk pool insurance when I was diagnosed and was able to get Medicaid through the CDC Breast and Cervical cancer screening program. I am looking into disability, but in part because my diagnosis was botched and we have no idea what stage I was, and my oncologist keeps telling me that I am fine in spite of ongoing problems with my right arm I am not sure where I stand. I also keep getting conflicting information from Social Security. I am not able to do the faux finshes that I was doing because of the mastectomy and the port so my business went down the drain. I have started taking some art classes at the University but now I am having to miss so much because of doctors appointments. If I had a job they would fire me. I really don't know what I am going to do because this program only will go two years. I am looking into my options and I guess I am going to get an attorney about the disability. But even then it could be years before they get this sorted out.

Leslie

[fauxgypsy]

My onc seems to be of the opinion that I am cured so just leave him alone. If I have a problem with my arm he tells me to see my surgeon who tells me to ask my oncologist. I had to stay on them to get a referral to see some one about my arm even when it looked like I had been scalded. they told me it wasn't their place, I should see my GP and this doctor is with UT Memphis.

I am not sure if I could get prescription assitance. I don't know where to start. So far I have managed to juggle everything. If it is cheap enough I just pay for it. This month is the first time I couldn't get everything filled. the one I couldn't get filled is not vital but it sure does help to be able to sleep. Right now the antihistamine is knocking me out. I don't know how we managed through chemo but we did.

Leslie

[hutchibk]

#1. I would like to ask all if it might be possible for now to keep this thread focused on helping Faux in the immediate rather than a heated discussion about health systems... sorry, but that doesn't help her right now, and it takes the eye off the ball. She can't move to France (or maybe she can, I don't know...), but there are potential solutions that can help her right now. Thanks.
****************************************

Faux - please call Lance Armstrong Foundation (#above) and tell them that you are in need of help securing your disability and medicare. They have disability experts who can help/advise and you do not need to pay for an attorney... they will also help you with prescription assistance, etc. THAT IS WHAT THEY ARE THERE FOR!! Please do not hesitate to call them for advice and help with your situation.

I did not have to go through an attorney for disability, however, I did not apply until I had recurrence. Do you have access to a social worker or case manager at your Oncs office? They can also be very helpful in this situation.

So you have a GP? Can you get them to help you get in to see the dermo?

OK, you need a new onc if the one you have been seeing thinks you are cured. You need another opinion. Do you have any names of other good oncs in your area?

[Vi Schorpp]

When was the last time you worked and paid into the Social Security system? Someone I know in Georgia just found out that since it had been longer than 5 years since she worked, she's not eligible for SS disability. The only reason I'm bringing this up is that if it's been 4/12 years since you paid in, time is of the essence.

When my late husband applied for SS disability I thought we should get an attorney right from the start. He said if he was rejected we'd follow up with an attorney. He was eligible for disablity so that became a moot point.

It sounds like you are slipping through the cracks all around and that's so unfair. It is so time for you to see a new oncologist. In addition to Brenda's excellent suggestions about a social worker and case manager, is there an ombudsman at the local hospital who may be able to help?

[Soccermom]

Faux, email me J I M A R D A N A T A O L . I live in Brandon,MS and would be happy to help, if I can,
Marcia

[madubois63]

I applied for social security disability half way through my first round of treatment. I did it on my own and was approved. I had to wait six months before I got benefits due. I also applied for my children and they were approved for benefits through my case. After my ex quit his job leaving me and the kids without insurance (during cancer treatments), I applied and received benefits from Medicaid. After 2 years, I was eligible for Medicare. Medicare became my primary and Medicaid became the second that covers the remaining 20% that Medicare doesn't pay. My doctors have many times requested extended benefits on my behalf from Medicaid because those limited doctor visits weren't enough. Ask your onc about it. That shouldn't be a problem. In the mean time, type in prescription assistance in your search bar and apply for everything you can find. You may be surprised at how many will approve and assist you. I receive assistance for co-pays and prescriptions. Check your state web site. Many states offer assistance in paying for re-education after illness. I was not able to return to my job after the first bout with cancer, but I could still work. My state (NY) has a program (Federal/State funded) called VESID that helped pay for college courses and books so that I could get my degree and a new job.

You got a lot of good advice already. I would certainly recommend your contacting The Lance Armstrong foundation, Cancercare and the American Cancer Society for finacial, legal and prescription assistance. Cancercare reimbursed me for pain medication that wasn't covered and for travel to and from treatments. The american Cancer Society (besides wigs, makeup, support groups ande so much more) sent me a small weekly grant for a while. It helped pay for food. There is a lot of assistance out there, you just have to apply or ask. Good luck!!!

[Jackie07]

Leslie,

How many lymphnodes were checked during your surgery?

I did not have any problem with my arm after my first lumpectomy when just 2 lymphnodes were out, but I did have very swollen breast at the lumpectomy site. After another 9 lymphnodes were taken out from the 2nd surgery 4 years later, I did not have any problem until I got bug bites and developed cellulites.

With the compression sleeve and glove, I am totally not feeling any discomfort and pretty happy with the situation because I am a cold-natured person and the glove and sleeve keep me warm.

It is upsetting when the whole thing just goes on and on - especially when you are ready to put everything behind you. But I really would look at it from the positive side - if there is anything needs to be done medically, I would rather it gets done sooner than later.

[Stephanie B.]

Have you looked into Wal-marts prescription plan. They have commercials that show prescriptions for $5.00. Just a thought.

Stephanie

[fauxgypsy]

I will try to answer all of the question. The time frame since I paid in Social Security is an issue. I had been putting pretty much all profit back into my business. The Social Security office told me one thing at first and then told me something else. One of the case workers even told me that I would have to change my last name to my husband's before they could help me. I had to call the IRS number about that one.

I do use the Walmart pharmacy and they have been really good about helping me decide what to put on Medicaid and what to pay for.

I have already had some problems with lymphedema. They removed 16 nodes. As long as I don't do a lot with my right arm the swelling pretty much stays down. My arm does hurt a lot and now they think I have a viral infection in the nerves of my right arm. First it was phlebitis then it was cellutis now it is viral. I think they are on the right track but is does get frustrating.

Brenda and Maryanne, I did not realize that that help was available and I will look into it. I kept thinking that we could manage but it is exhausting. I have played telephone tag with the Rehabilitation office for some time now. Hopefully they can help out. I have applied for some positions in Biology (teaching or research) but though I came close to getting a faculty position at U of M, my skills are out of date and I still would have to miss often at this point.

Thank you all so much. Friends and family who have never been through something like this just do not understand. I have one close friend who has chronic health problems who has been a rock for me. Y'all are great. Soccer mom, I will eamil you soon.

Leslie

[Faith in Him]

Faux,

I am so sorry that you are going through this. I know it is exhausting. If I can help by doing research or making some phone calls for you, just let me know.

I have finished hyperhemeria radiation and the kids are back to school so I have pently of time on my hands.

Take care,
Tonya

[Ruth]

Leslie:

I hate that this is happening to you. I had a biopsy done on my arm that I had the 16 nodes removed. It ended up being OK since it is a very shallow punch that she took from the area. I was concerned too but needed to find out what the spot was.

You shouldn't have to change your last name on your social security card...that is the first I heard of that. You can just prove your marriage with the certificate. I am a tax accoutant and have many clients who have never changed their names (families from India keep their maiden names) and many others do too. Social security mails a statement out a few months before your birthday with the available disability benefits listed on the document. I wish I lived closer and could get this together for you and go with you to the social security office! Everyone here has given you some wonderful information. I hope that you can find a dermatologist that will take this biopsy for you. The added stress of this can't be helping the viral problems. I'm sending you a big cyber hug and saying a prayer.
Hugs ~ Ruth

[Soccermom]

Faux, I have been told that this site..
https://www.pparx.org/about.php is VERY helpful..

(The above is the Partnership for Prescription Assistance)
Hugs and I hope this helps...hang in there..
Marcia

[sassy]

Faux,

My radiologist office recommended that I contact Cancercare about travel assistance. I did and they sent a check to help cover travel expenses. There are other areas of assistance they will also address.

www.cancercare.org (http://www.cancercare.org)

We are all here for you.

[SoCalGal]

Brenda-I have known you since April of 2007 and never heard you so fired up! You are channeling ME and I like the new YOU! "She can't move to France" funny but you might have really hurt Sarah Dalton's feelings - she was just ragging on America like everyone else. lol.

Leslie- I hope that some of the numbers listed offer the help you need and deserve. Boy we are a feisty group!

[jones7676]

I am sorry to hear you are going through this as well. I hope that you also contact your representatives via the computer to complain. Since health care seems to be a big issue with the presidential campagin coming up....perhaps you can have some influence on these policies!

[fauxgypsy]

I found out that my dermatologist from years ago would take medicaid under some circumstances and they fit me in today. He is wonderful. He believes I am having one of the rashes from the Arimidex and I am going to change the time of day I take it and see if the onset of the itching changes. The one that is being controlled by medication appears to be viral. And the other is a type of eczema. I feel better now that I have seen him.
I appreciate the advice from all of you. I always hate to ask because it seems like my problems are so small compared to what so many of you have gone through. I am sure we have all felt like Sarah does. I know I do. I know that b****ing does fix anything but it helps me to know that I am not the only who thinks our system is all screwed up. I will look into everything that was suggested and see what I can work out.

I did find out that this is the last week for my onc's assistant and I am happy about that. She has been really difficult to deal with and I am hoping that her replacement will much easier to deal with. In the meantime I talked with the head nurse there and she was very helpful.

[chrisy]

Great news, on several fronts it seems. It must feel great to have some answers and a plan of action...and to be relieved of an unhelpful medical support person!

Blessings,
Chris

[fauxgypsy]

Yes it does. I emailed her a couple of days ago to ask if the Arimidex could be causing some nausea I am having. She told me that it never causes nausea. I was so frustrated that I sent her the information on the Arimedex website about it and from the NIH website.

When I finished Herceptin I asked her about getting my port flushed and in front of my husband she told every six to eight weks. I told her that the card that came with my port said every four weeks. Oh no, it doesn't have to be that often. Now she says that she didn't say that. I went ahead and got it flushed every four weeks anyway. I had decided to make sure that I had her put everything she said in writing. I'm just glad she's leaving. I am beginning to think that the problems I have been having with my onc were because of miscommunication with her.

It is good to have some answers. My arm is getting better with the antiviral and that is a good thing. It was like having shingles in the nerves of my arm. Now if I can just get the itching under control I will be great. I had tried to take several art courses at the University this fall and have had to drop two of them. I guess I have been in denial and just wanted everything to be back the way it was. Andi keeps telling me to accept that I will have a new normal but it must just take time. I just wanted to be the energizer bunny again. Well the bunny fell over. My batteries just don't recharge like they used to. I am slowly coming to terms with that. Hopefully before I fall over again.

Leslie

[Sheila]

Leslie
I do hope you will look into some of the places Brenda posted about...they make it so damn hard to get help to those who need it most....but don't give up...sometimes I think that is what the insurance companies and agencies want...they hope we will quit if they make it hard....show them you are determined and never give up...there is help out there, you just have to keep calling and asking...if there is anything I can do to help, let me know, although most of us have never met, we truly are family.

[Jackie07]

Leslie,

I just got the fall issue of Insight from LBBC (Living beyond breast cancer) and they printed a good article on health insurance and how to go about getting what we need. [Facing the financial challenge of breast cancer]

http://www.lbbc.org/content/newsletter/insight-fall-2008.asp#s170

They also listed some website addresses and phone #s which are not included in the linked article. Some of them are the familiar names. I am going to type all of them down below:

Centers for Medicare and Medicaid Services (CMS)
(800) MEDICARE (633-4227) <cms.hhs.gov>

National Breast and Cervical Cancer Early Detection Program (NBCCEDP)
(800) CDC-INFO (232-4636) <cdc.gov/cancer/nbccedp> E-mail: cdcinfo@cdc.gov

Organizations offering free consultation and financial assistance to people with breast cancer:

Partnership for Prescription Assistance
(888)4PPA-NOW (477-2669) <pparx.org>

Patient Access network Foundation
(866)316-PANF (7263) <patientaccessnetwork.org>

Patient Advocate Foundation
(800)532-5274 <patientadvocate.org>

CancerCare
(800)813-HOPE(4673) <cancercare.org/get_help>

Healthwell Foundation
(800)675-8416 www.healthwellfoundation.org (http://www.healthwellfoundation.org)

Brenda Mehling Cancer Fund
Fax: (800)878-9184 <bmcf.net>

Cis B. Golder Quality of Life Grant
(610) 645-4567 <lbbc.org/events-list.asp?event_type=OTHER>

Let us know how things are going.

[juanita]

i'm glad you're finally seeing some results. i think sometimes they think their jobs are just to make us crazy.

[fauxgypsy]

I am glad too. I also thankful for all the information you all provided. I am just tired. It wears you down and I just kept thinking that we could manage. I always felt tha someone else needed it more than we do. Everything will get better and we will manage. It is wearing us both down. I will check out all of this.

Leslie

[sassy]

Faux,

There probably are people who "need it more". But that doesn't mean that you don't need and deserve assistance. I hope that things start going your way soon.