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Concerned about loss of benefits
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breatheagain3210 posted:
I am so glad to find this community. It's funny that I never thought about a support group or community, but reading some of the posts have already comforted me. I was diagnosed at the age of 29 and have been struggling for the past 3 years. I have allergy induced asthma, but it feels like it's affected by every reason and every season. The doctors say that it is under control, but I find myself coughing up mucus or out of breath. I am unemployed and the COBRA benefits are getting expensive. I am scared that I will lose my benefits before I find another job. Even if I do, I'm afraid that I will miss work.

I feel so lonely with this illness. No one else around me has it. My father just died from an asthma attack so I'm even more afraid. Everyone else sees me and assumes that I'm breathing fine, but I could be struggling or wheezing. I can't do things or tolerate smells. I feel like no one understands how much of a struggle it is and no one else is afraid that I could die like I am. I feel like I am in a fight for my life and everyone else is shrugging it off. I'm not trying to sound dramatic, but it's very scary to not know if you are going to be able to breathe day-to-day. I am trying to accept it and get used to it, but do you ever get used to it? If anyone can provide some information on what I should do about my benefits, I would appreciate it.
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coughy16 responded:
When my brother was in a similar situation, someone advised me to check with the insurance commissioner for the state I live in. He was too sick to do it himself at the time, so I called & they were extremely helpful and worked with me to know what was available. The other thing too is to get involved politically with groups pushing for affordable healthcare for all. That won't be immediate to help your current situation, but it really takes those of us who understand how devastating loss of insurance can be to convince those who think that it could never happen to them. Has your state set up any health exchanges yet? That might help too if they have. The best think that you can do for yourself is try to keep your asthma under the best possible control in the meantime.
 
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breatheagain3210 replied to coughy16's response:
I will do some research into the insurance commissioner. I am impatiently anticipating healthcare for everyone. Until you have a chronic illness, you don't really understand the power or necessity of health insurance. I am trying to keep my asthma in the best possible control but I can't do that without medications. I spend almost $150 a month purchasing meds and that is only co-pays. It is expensive to be sick. I only hope that I will be able to find a way to keep it up. Thank you for your response. It is helpful. I greatly appreciate it.
 
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bottompage replied to breatheagain3210's response:
I know exactly how you feel breatheagain. I was unemployed for 2 years before I got my current job last July. In fact, I used up all of my unemployment benefits before I was able to go to work. Ironically, my unemployment (when I had it) put my income $50 over the limit to qualify for my state's health insurance (and I was only making $200 a week BEFORE taxes, yep, they took taxes out besides!) Of course on that "salary" I could not afford to pay "cash" for my medications which would have run me nearly $500 a month. So I started doing some research on my own and maybe they will be helpful to you as well:

1. I got approved for a county-funded health care program. Yes, a lot of the people that go there are also "on welfare" but not everyone. In this economy a lot of people are out of work, so its just the poor that are seeking help. I for one, have a college degree and was still unable to get a job in my chosen field and went back to school to get re-trained in another area so that I could find work. Anyway, I digress....check with your county health department to see what is available. Generally they have programs to help those who don't have health insurance. Its based on income and they "discount" the fees for doctor visits, etc so you don't pay "cash" price. I got excellent care at my local clinic and never paid more than $20 to see the doctor. I also got some of my medications there for between $4 and $10.

2. Many pharmaceutical companies are helping to make their medications more affordable for those who don't have health insurance or don't have a job. Again, there are income limits, but they are pretty high (I would still qualify now even though I am working if I didn't have insurance through my employer). Go to the website for the manufacturer of your medication and click on "patient assistance" or something to that effect. I qualified to get my Advair, Singulair, and Nasonex medications AT NO CHARGE when I was not working. It takes a little foot work (some require a signed note from your doctor that you don't have medical insurance) but its sooo worth it. Here are the sites for the common medications, if you don't know the manufacturer of your's, you can google it.

Advair: They use an 3rd party to cover their patient assistance program. www.bridgestoaccess.com . They are WONDERFUL!!

Singulair and Nasonex: Merck - www.merck.com and click on patient assistance.

Hope that helps. Good luck with the job hunt!
 
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dashdot responded:
You too, huh? Well ,I'll tell you. At my local natural herb store, I found this wonderful tea called Lung Pacifier. You take this 2 to 4 times a day and restrict your activities as much as possible. Also what you might want to do as far as insurance is concerned, apply for a fixed policy where you only pay a fixed amount every month. I too have allergy induced asthma, because when I was a baby my parents and I lived in a climate that was too high for my bronchial tubes to develop fully. I now live in deep south Texas and have issues with breathing. Also if you can, try not to lay flat at night. If you have a recliner, keep yourself in a sitting up position and take slow, deep breaths. Try that and see what it does.
 
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thedeetz responded:
I agree with checking with the sounty and state for medical assistance. If you can afford blue cross, there is a policy that is a little more expensive than regular blue cross, but they accept any conditions. I also have severe asthma and have used them when i could not get coverage elsewhere. Just like other plans, you pick your deductible and copays.
Some advice on the asthma: have you had allergy testing and if so, have you considered allergy shots. I just started my allergy shots last september. I was taken off all asthma meds by a local family dr because he could not hear my wheezing. He said I would need to be off my meds for further testing. I stayed off for 2 weeks. By the end of the two week period, I had lost my voice completely and my family thought I would end up in the er before giving in and seeing another dr. I drank diet coke to help get me through my days. Needless to say, I was put on prednisone and sent to my pulmonologist immmediately. We started the allergy shots two weeks later.
My asthma has gone down hill since starting the shots, but is starting to get a little better. I have seen a specialist at Mayo Clinic and discussed all issues with him. I now understand my asthma much better and can deal with the issues that arise a lot easier.
 
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amcate responded:
Many people have said things that I'll end up repeating in what happened with me. Still, there are some new ideas I tried as well.

I had a travel job in healthcare, then noticed a growth on my skin. I went to the dermatologist, and they said it was 99.9% chance of turning into malignant melanoma. So, I couldn't travel. I had to pay for COBRA, and decided to do other screens. They found a lot of different stuff that needed to be addressed. The most expensive was that I had a rare disease in some joints such that the body destroyed the joints and as a result parts of the airway was restricted due to the soft tissue being in an incorrect position as the joints could not support it. I had to go out of state to someone who specializes in it. It took a year to prepare for it, then a year afterward to have time for the exercises and followup appointments, sometimes one a week or one every other week. Fortunately, I work in healthcare, so could get a job that was on call, meaning I could say, "I can't work that day" very easily. Still, work was sparse.

I considered pulling money from my Roth IRA. I also asked my family for help. My family was able to assist me, and requested itemized bills and proof of my income so everything was above board and in the open. They also came to the expensive appointments so we were all on the same page. After 18 months, COBRA said no more insurance.

I was unable to find a position in the city I was living in at the time in my field that provided health care coverage, though I continued working per diem (on call). I asked a social worker for resources, and she told me about some prescription drug card programs that offered discounts. In addition, I was recently at a pulmonary support group, and one member gave out a coupon for $50 off of Advair. On the back, it says, "If you don't have rpescription coverage and can't afford your medicines, visit www.GSKforyou.com ." The coupon is to help with a copay if you do have insurance. In addition, I asked about generic equivalents, and was able to switch from Nasacort to Flonase, which is a similar drug and much less expensive. My pulmonary support group said that Advair was about to go generic, but my asthma PA said she was not aware of that.

I ended up going to a community health center, which is subsidized by the government and provides health care on a sliding scale if you don't have insurance. I talked to the social worker there, and said my problem was that I'm too young for Medicare, I earn too much for Medicaid, no one offers a job with benefits, I'm not married so no one can cover me on their insurance, and no more COBRA. She told me my state has another program, and I applied for it and was accepted as well as being accepted for the community health center. The state insurance does not pay for much, but does cover preventative things like asthma meds very well.

Sams club is the least expensive if you ever have to buy meds completely out of pocket.

I get meds as soon as insurance will pay to build up a stash.

Don't worry about sounding dramatic. I probably sound dramatic as well. The issue with asthma in my case is that the obstruction is mostly reversible, so I can go through times when breathing is fine or the attack is mild. However, I have had severe attacks with rescue meds failing and lungs feeling burned from the inside out and tons of fluid trying to come up, but not being able, and getting tired and laying down and lossing consciousness. It doesn't take a lot of those to make an impression. I think people who've never had that experience can't understand the fear and concern with preventing another severe attack and controlling triggers carefully as most of the time I breathe fine. The concern with preventing severe attacks is valid-a reporter recently died in Syria from asthma.
I find playing hymns on a piano helps deal with the fear, but I don't know if it helps you.

Hope this helps.


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