The most disappointing day yet. I get to clinic for my LP and spinal MRI only to be told that my insurance was cancelled, which I received no notice of, then get home to find the Cobra packet 2 days after the fact. $900 a month is impossible on one income, barely over minimum wage. Fundraising is a joke as I've seen most ready to donate to a funeral rather than to sustain a life. Just gonna find a hole and hibernate a bit. It's too much for this foggy brain to handle right now.
Devastated and numb...: The most... - My MSAA Community
Devastated and numb...
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GerriG
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36 Replies
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GerriG I'm so sorry, what an awful day 😞 MSAA has an application for MRI assistance.
I'm so sorry GerriG ! That must be beyond frustrating to get no warning. I will be staring Cobra in the face sometime this month I believe. Not looking forward to the increase in costs.
On GerriG. It's in human what you guys have to go through with all this insurance stuff. In my eyes if you are sick then you need help, it's sad when money means more than human well being. My prayers are with you take care, blessings Jimeka 🦋 🌈 🤗 🙏
So sorry you have to go through all this. I had to make the decision on taking COBRA once, and there was just no way. It wasn't affordable 17 years ago either.
I am so sorry GerriG. The ins. business is hard to navigate sometimes. I just started on Medicare. They wanted me to pay $2000.00 co-pay for my Gilenya.
I felt like I was begging Novartis and other assistance plans to help me. Finally got help until December.
People shouldn't have to beg borrow or steal for their meds or insurance coverage
Did you try the Gilenya go program? They help with paying for Gilenya.
Gilenya go program set me up with Good Days assistance program. I am now getting my Gilenya for $20.00 co-pay.
Kath55, I've been able to get some complimentary doses of my Avonex from Biogen pending my appeal to SS. Between Biogen and Acaria specialty pharmacy they put me through some paces, but at least I've been able to continue my shots. Can't say the same for the laundry list of other meds I'm supposed to be taking, but can't afford without insurance.
ynggal. So glad that you are getting your Avonex. I'm praying mightily for you. My pharmacy has a discount card that helps pay for part of your meds if paying cash.Found this out when I got a prescription for my dog,,LOL! See if your pharmacy has such a thing. Also, get on internet. Look up goodrx.com. They have coupons also. Next look up Good Days.org. They do other meds than just MS meds. Look up each of your drugs manufacturer, usually they all have some kind of help. This is all pain in the hiney, and expect to do a lot of holding the line but it would work. Just go for it !!! You are in my prayers
Just curious, I'm about to take the big step, stop working and apply for disability. It is getting impossible to work. I wanted to know where you are in you process of getting disability, or if you know what the usual time frame is until they approve it.
Hi, Danielle2311. My first application was denied, which I understand is not uncommon. I'm told the majority of first attempts are denied. I retained an attorney last week to file the appeal (no money up front; the norm is for the attorney to get 25% of the lump sum you get from SS when you win your case). I'm told I received a quick response to my first application, which was within about 6 weeks.
I would speak to your doctor before submitting an application to make sure you're on the same page. I think in my case the medical info that SS obtained on its own didn't provide a clear picture of my situation.
Be prepared to provide everything, but a blood sample and your shoe size! After my first application they came back with a 16 page questionnaire that took me 2 hrs to complete.
Good luck to you. Please feel free to contact me with any questions you have. I feel like I could write a book now on where to go for assistance in getting medication, assistance with utility bills, etc. I'm happy to share what I know if it means preventing someone else from going through the stress and uncertainty like I've had over the last 3 months.
Thank you so so much. It is hard to know where to start with this stuff. My doctor told me last year that I could go on disability, she feels I qualify. My job says they are ssurprised that I'm still working.
Kath55 Is that what I have to look forward to when I qualify for medicare in 12 months?
Rob
P.S.............. Nevermind, I forgot what the P.S. was about grrrrrrrrr!
GerriG , I'm so sorry to hear this. I hope and pray that you're able to get the assistance you need to cover your immediate needs as well as those down the road. Be persistent when searching for aid. Sometimes, you need to check daily with the organization's as their funding comes and goes quickly.
@Eleyne92, it's like pulling hens' teeth to get assistance paying bills. My electricity was cut off 6 weeks ago and my water will probably be cut off next week despite there being an active Serious Medical Condition letter from my doctor on file. Orgs that are able to help often have extremely limited hours of operation and you have to go in and apply in person. Like you said by the end of the month their funds are depleted. I can't stand in line on my feet for hours on end which is what it takes with a lot of these orgs. And the amt they're able to provide can be extremely small. I just don't know what the answer is.
Do you have any other support group/ people who can help with any of the bills? Are there any MS groups in the area that might know of other places to get assist. Are you like me and live in the south so air conditioning is always a problem?
Danielle2311, I live in southeast Virginia. Yes, the heat is definitely an issue. Sometimes I have to turn the A/C on in the winter if I'm rushing around trying to get ready to go somewhere! In VA you can call 2-1-1 and they'll give you a list of organizations (i.e. Catholic Charities, Salvation Army, etc) that may be able to help with utility/housing bills, but by the end of the month their funding can run out. The organizations can change from month to month. It can be an arduous process.
I was able to get my electric bill paid by the NMSS. I'm convinced the woman that helped me has angel wings. She accomplished in 1 day what I had been unable to accomplish despite weeks of trying. And then she continued to follow up with me. I'm eternally grateful for their help. I urge you to call them @ 800 344-4867.
The last couple of days I've been doing some research on the Department of Labor (dol.org) to see if there are grants available to help with home repairs. I need to replace my bathtub with a walk in shower as I'm having trouble lifting my legs the height of the side of the regular tub. I don't have any grab bars either.
GerriG Your plight touches the heart of each person here. As my mother often said, there, but for the grace of God, am I. I too found COBRA benefits astronomically/ludicrously expensive. I am holding you in my thoughts.
I'm so very sorry you're having to go through this! The stress is not good for those of us with MS! Dealing with health insurance is one of the things I absolutely HATE doing! There's nothing easy about it! On top of that, the majority of health insurance companies are not concerned with your health & wellbeing as they are in collecting your premiums!😡
In respect to the cancellation of insurance & the late notice of the COBRA option, I believe that legally you must be given (at least) a 30 day notice before a company can terminate your health insurance. And at the time of NOTICE of cancellation you should be given information regarding COBRA (Consolidated Omnibus Reconciliation Act) in order to maintain continuous health coverage. My suggestion would be to research a little bit & find proof that you weren't given the required (for your state) number of days before your health insurance was cancelled AND/OR the lack of notice regarding COBRA!
My other suggestion going forward is to document EVERYTHING! Anytime you speak to someone, regardless if it's health related, financial issues, or any other type of problems, DOCUMENT, DOCUMENT, DOCUMENT!!! Documenting has saved me SO MUCH anguish!!!
I keep a notebook and document every time I call someone regarding any issues.
Date, time, name of person I spoke with (or if I had to leave a voicemail & what I said). I also document the main points of the conversation and any actions the other party or I must take. Basically write down anything that will be useful in future dealings with the company or person you're talking with.
Doing this has prevented a lot of problems and resolved many disputes (especially when I can report that I spoke to a specific person on a specific day & time and what was said).
So do a little investigation into what the requirements are regarding notice of health insurance cancellation & COBRA notification. Call the insurance carrier but don't just take their word for it. Go online & research COBRA. I recommend looking for sites that end in . gov for more reliable information & links to agencies that can help you!
I pray you will find some help...hang in there! 🙏🏻🙏🏻🙏🏻
thank you for your information. i need to get a notebook going because I can never remember anything. Feel like 10 Sec Tom from 50 First Dates movie.
GerriG I too am so sorry that you are going through so much. I don't know where you live so I don't know if this suggestion will work. If your state set up an Exchange under the Affordable Care Act, you may be able to get less expensive health insurance. Another option is to look at healthcare.gov. Since you recently lost coverage you are eligible for "special enrollment ". The premium and deductible are based on income. I hope you are able to get the care you need. All the very best to you!
☹️My heart goes out to you. Seems almost barbaric that people in the US aren't getting the care/meds needed😤. So sad!
GerriG , I'm in tears reading this. I completely understand how you feel. Right now I have no health insurance. SS Disability denied my application so now I'm waiting to hear back from an attorney in regard to my appeal. No income since March 15th, my last day on the job (my employer terminated me after I filed charges of discrimination and harassment with the EEOC and the State Attorney General's offices).
Ineligible for SNAP. Ineligible for welfare. Unable to afford the $800 a month to COBRA my insurance. I'm on I believe day 4 of Effexor withdrawal. Everything I read likens it to heroin withdrawal I can't speak to that, but I can tell you it's hell. I can't afford $150 for a 30 day supply without insurance
I don't remember feeling such despair. Just know you're not alone in this struggle. I don't know what the answer is. I sure wish I did.
ynggal gah, everyones story seems to be the same in the good ole USA. Pisses me off. I was blessed with a supplied company to help me get SS disability through work. Best $4 a month for a benefit I never thought I would use. I am so sick of all these insurance issues in this country. The biggest and best richest country ever. Yet, we struggle to get what we need to stay alive and healthy! You are all in mt thoughts and prayers.
Unlike button!
My love to all!
Rob
Thanks for the well wishes, Rob. I was finally able to purchase health insurance through the Marketplace. The premium is very affordable, but only because I have zero income. I'm living off my savings right now pending my appeal for SSD. May not be favorable because I'm doing "well". Or as my neurologist put it you have to be a paraplegic before you can get SSD in Virginia without a huge fight. I realize there are people out there who scam the system, but when you have medical documentation to support your claims it shouldn't be this hard. 🤦🏻♀️
Jesmcd2CommunityAmbassador
GerriG and ynggal I'm so sorry for not catching this earlier!😞 And I hate that your both having all this trouble. Doesn't seem right in this day and age that anyone should have trouble with insurance!
Give MSAA a call and see if they can help you out with your insurance needs! And lm glad you d/led the MRI asst app. Gerri.😊 800 532-7667 ext. 145
Ynaggal for help with things like electric, which you kind of need😕 give NMSS a call at 800 344-4867 or msfocus.org at 888 673-6287 they should be able to help you!☺
Talk to your Dr about your effexor!!! Tell him what's going on! You do NOT want to go cold turkey on that! It's not pretty! I'm hear if you need to talk☺
Jes 🌠
Good luck to you both!💕
Jesmcd2, thanks very much for the concern and for the suggestions. I'll definitely call those toll free numbers.
Good luck! Let me know how your doing! And lm just a message away ok? I'm on effexor, and was off it 2wks once. It's not a good place to be. So please please, make sure you keep yourself safe 😊💕
Jes 🌠
No more Effexor for me. Never again. If I had known years ago what I know now I never would have started on the drug. I was prescribed it for the treatment of fibromyalgia. This was before my MS diagnosis. I've been enduring a week of nasty, nasty side effects from withdrawal and two days ago was contemplating calling 911 to take me to the ER. I'm happy to say I feel MUCH better today. Hoping I'm getting a peek at the light at the end of the tunnel.
ynggal ~hugs~ stay strong Stay positive and know that you can get through it! Knowing what's going to happen and how your going to feel is part of the battle, I think.
But lm not a Dr! If you need to go then go! If you need to call someone then call!
I am so glad that your feeling better today! 🌷 Keep the smile, and keep them guessing!😊
J 🌠
Hi GerriG . I'm so sorry to hear about what you're currently going through. Unfortunately, I don't have any suggestions for you but I will be keeping you in my prayers!
GerriG I know this is late. I have been off the grid so to speak for a while. I wish there was an unlike button! You and I are in the same boat. I am on social security disability. Going from a very very comfortable living to $2000.00 a month with cobra costing me only $780.00 a month just for me. So now my wife and kids have no insurance, just me. Wait, my son has horrible insurance through his college. This country is really going down hill so fast. My wife got on the affordable care act website during open enrollment and they said we should qualify for state and federal aid, and since we filled out the application someone would be in touch. Well, to date we have been denied for one program and waiting for another answer. But if we don't qualify. its too late to get insurance, we will have a tax punishment and be without insurance. Makes no sense to me why the richest country this planet has ever seen doesn't have universal healthcare.
Thanks for sharing!
Rob
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