Social Security Disability with Cirrhosis and Cancer
I just got my approval letter. I am officially on Social Security Disability with Cirrhosis and Cancer from Hepatitis C. I have mixed feelings right now. In a sense I’m pretty relieved because I’m not sure what is going to happen next with Hepatocellular Cancer and a liver transplant. The flip side is that I feel …… Well, I feel disabled. That sucks. It’s making me tired just thinking about it. Really.
This blog will NOT be a how to apply for SSDI. That info is at the end of the page. Just so you know… I feel the need to mentally gather my wits about me. In my head, I’m sitting across the kitchen table from YOU. Many of you have shared your experiences with me. Maybe my meanderings will help you try and figure out how to approach disability and Hepatitis C with Cirrhosis.
It is important to turn the thought of disability over a few times. Don’t throw out the idea too quickly. Don’t jump in too lightly either. I am surfing around my brain on several waves of thought. Start by asking yourself some questions.
What is my current quality of life?
How does working or not working effect that?
How will I pay for medical costs?
What will my retirement years look like?
What do I want out of life?
Quality of life: Life with cirrhosis is hard. Energy levels can vary. Some days I have done yoga before work. Other days I start yoga and end up scooching across the floor and dragging myself up on the couch for a nap. My battles with fatigue have a wide range. I have pushed myself out of bed with B12 and caffeine. Other days I sleep late and sip decaf while staring out the window…. all day. (H.E.?)
Weekends are great, but household chores take a huge chunk of it. Combining family time with outdoor activities is a great way to soak up some sun and stay physically strong. Lately I am not very “with it”, but I always show up with a smile. Family and friend times are a constant source of joy, but I find that my quiet times are really needed to restore my mental state to one of peace
Working or not working: My job does add a lot of stress to my current health condition. I push and then I push some more every day during the school year. But you know what? My best is not so good most days, so I push TOO hard. That equals up to this little background hum of anxiety. I end up having an inner argument about whether to rest or push.
By not working and going on disability, I am able to rest and take better care of my body. Staying at home for a while has become a time to zero in on Self Care. I am talking about some quality time to get good sleep, do yoga, exercise, eat well prepared liver loving food, research how to better care for my body, and of course, write about it to my Best Friends!
Mentally, I gorge myself on reading and writing and can spent hour after hour gobbling up research. I especially like to read about nutrition and how it effects the liver. Picture page after page of notes piled by my chair. Got an image of my bed with a laptop and more pages and several books? Haha. I totally sleep with information under my pillow; it might absorb into my brain during the night.
Paying for Medical Treatment: The truth about Disability is that my transplant team requested it as part of my process. Paying for the medical bills now involves the Transcatheter chemo and a liver transplant. I also have to look at paying for immunosuppressant drugs after the transplant. THAT is a lifetime commitment. It can be costly.
It’s about Medical Insurance: As long as I work, the insurance is good. That’s a no brainer. I’ve used all my sick leave and will soon be using Family Medical Leave Act (FMLA). I can still pay for Cobra insurance. Did I say Pricey? Through the roof!
In some states, like Oklahoma, Medicare is not automatic. It takes 2 years to get it after I get on disability! I need it.
Retirement Years: I would love to be able to teach, grade papers well enough, and have the energy to be in the classroom. I plan on working for at least 9 more years. Then a nice retirement and social security will allow me to pursue my other passions in life.
What do I want out of life? I want to be my best self – someone worth knowing. I want to know people. Deep inside where love lives. I want to know my family and friends and want them to know me. I want to camp out under the stars and take long walks. I want to plant more gardens and read more books.
I want to explore places.
The cancer diagnosis shook me to the core about the reality of my days left here. I plan on 20 more years, but I have to live every day as if it were the last one. You know?
Disability can def help me accomplish my goal of having a good quality of life while I battle cancer and get a liver transplant. It allows me to rest instead of work and gives me peace of mind about my medications and bills. It is not a lot of money and will require some serious budgeting.
This rambler of a blog is a pretty philosophical, and hopefully practical look at the issue that we all face. How can we live a good quality life, enjoy work that we are passionate about in decent health, and grow old with freedom and dignity? Some of our choices are made for us. Others we get to choose!
“Do not let what you cannot do interfere with what you can.” John Wooden
If you are in the process of filing for Social Security Disability with Cirrhosis and Cancer from Liver disease or Hepatitis C to help pay for medication and treatment or transplant, apply online and be patient.
I got mine in less than 60 days after filing online. They called me and I got a letter. If you have any questions, please let me know and I’ll try to point you in the right direction.
I may be disabled, but I am NOT disheartened or discouraged. I am not even allowing disappointment to creep in. You know why? Cause we can kick liver disease and still rock on with our best life!
Loving you, xo Karen:)
Some of you may have to go through a hearing and even reapply. I might not have advice, but my friend Alan does. Click the link below http://www.hcvadvocate.org/hepatitis/living_w_hepatitis_C.asp#2 for more information from Alan Franciscus at hcvadvocate.
21 thoughts on “Social Security Disability with Cirrhosis and Cancer”
Beautifully written as always Karen. I have been waiting over two plus years for SSDI . Cirrhosis not cancer which I’m grateful. I have spent my retirement $ could no longer work. Doing part time to pay for insurance now it’s taxing. I am grateful I had those two years to get myself mind, body and spirit to do a third tx. I wanted to finish out my career it was not possible. I had to choose me. Big love for you courage Karen.
Thanks Debbie, You are still in the process, right? Yeah. Cancer made it a straight shot for me. They had me on in about 5 weeks. Oklahoma has a waiting period of 2 years for the medicare or medicaid or whatever. So it won’t help me for a while.
Insurance is expensive! I have to keep my private insurance through the school until after the transplant. Almost $1,000 a month. Crazy crazy. I’m so sorry you are having to work part time. I saw the pic of your view from work today. That has GOT to help some, right? You’re fortunate to be able to get benefits at part time. Congratulations on that!
Much love dear sister friend. You’ve stood by me so faithfully and I totally appreciate it. xoxoxo Karen:)
Karen, I too went thru this dilemma and I worked right up and until I had my transplant. Fortunately I was able to work from home so continuing was necessary like you said for income and insurance. Working, my insurance paid 100% of my transplant which left me able to concentrate on healing. However soon after the transplant, my liver failed and I had to go back on the list, at that time, I had to go on long term disability and one of the requirements, I had to apply for SSDI… All was approved quickly, and I only had 1 month with no income which put a dent in savings, but I know people that have to wait years sometimes for their disability to go through. Mine was like, transplant in December, Long term disability in April, and approved for SSDI June 1st, but they took my disability back to December, so it made me eligible for a check on June. What I am facing now, is I am 6 years post transplant, and have now cleared the Hep C but still waiting on the subsequent tests of 3 and 6 months. I am torn now with the decision that I am on the road to health, but I am now 59 years old with not many years to work, I loved my work however it was or is a very stressful career, with traveling the world, etc, but I loved meeting people and seeing the world. I think after my 6 months follow up in April once I find out if I am “cured” I will see where my other health issue lie as one thing is certain, once you have this long with Hep C, and all the outlying issues involved, going back into the work force (after 7 years for me), will be scary. After all, who would hire me?
I totally hear you on this one. I don’t know how you worked right up until transplant. Working through treatment was tough. Now I’m taking a full rest. I’m so happy that you have been able to also! My sister already gets nervous when she hears me talk about going back to work. I DO plan on going back into the classroom.
Reading your comment again – think about this: What if you created a whole new career for yourself? Having stared death in the face, you have probably taken a lot of time to look at the things that you are passionate about. I’m doing that right now also. What is my “bucket list” really about? For sure relationships, adventure, etc. But I guess what I’m thinking about Emma is: What is it that we’re good at that meets a need in society? And can we find someone to pay us for doing it? Boy would I love to have you sitting in my living room right now for a nice long chat! haha. I”m certain a lot of businesses would hire you in a heartbeat. And be glad that they did!
On the subject of SVR. You’ve made it this far so I just know you’ve got it. I remember the waiting though and you’re going to be so relieved.
Cancer will always move the process along faster, so happy you got it. I just had my 3rd appeal with a judge. Could be up to 3 MO to hear back after already waiting 3+yrs.
I know you’ve been through the wringer on this. So you actually have to go before a judge? I applied when I was first diagnosed. I was working part time and got refused. The said to appeal, but I needed insurance to treat so I kept moving.
It’s good to finally be able to rest, you know? I hear about people using attorneys to help, but then they keep a portion of your money. You’ve got to be getting close to being approved. All my best to you hunnyo. Maybe this will be it! xoxo Karen:)
Hey there my Dear,
I got mine in under 60 also. Mine was based on decompensating liver disease, HCV and cirrhosis. I got MediCal right away but Medicare takes 2 years. What piece of mind it is to have insurance and income.
Now comes the scary part. I am considered “previously decompensated” and in 10 days or so I will know if I have cleared the virus. That part is awesome, truly a miracle. The scary stuff is the possibility that I may need to return to work. I am waiting to see if I made SVR and then I am going to look into Social Security’s Ticket to Work program. The guarantees of this program make some of the things a little less scary.
I am so happy for you that you have had success with getting benefits. As always, in this big cyber world, you are my hero!
Joe
Joe,
How awesome that you were able to get it so soon without cancer. I know that you work hard in helping others with Hepatitis C. It is scary to think about working full time. I know that you are going to have to get your strength back. Treatment can be hard on your body!!
Will you let me know how the Ticket to Work program goes? Others may be interested also. I am not familiar with it. No matter what, dear Joe – YOU are a miracle the way you have approached treatment and hung in there. I sure love you buddy. Thanks so much for the good words. xoxo Karen:)
Karen I don’t get insurance part time I’m helping pay for it through working I’m on my husbands plan. In March it will be two years we will see what happens when I get my hearing. I have total empathy for the challenges of paying for insurance. The last two years have been rough but I am grateful I had retirement $ to live on. I pray for you everyday Karen. ❤️
Debbie,
I missed this comment! It’s awesome that you have found a way to pay for insurance. I would be able to switch to my husband’s plan, but do not want to because I’m all approved for the transplant through mine. Being able to work and stay with my state plan is great. The flexible hours are awesome! I worked quite a few hours every day this week and now am totally zoney today.
How awesome that your retirement benefits are there for you!! I’m believing that the hearing will be in your favor and you can take some much needed time off. We simply have to measure out our energy levels. While it’s good to push when we have to, the body heals best with good rest.
I love your prayers. I totally count on them and pray for you also. Much much love,
xo Karen:)
I went out a year before I was diagnosed for depression and what they thought was fibromyalga. We all know where that went..the annocement of hep c. My chronic pain and exhaustion has kept me home a few years. Luckily my husband has the benefits and we both have retirement accounts.
I know you battle the pain and exhaustion daily. What a great thing it is to have benefits to cover your medical and living expenses. I was given a chance to work part time from home and help pay for my medical insurance. I will do what I’m able to until the transplant.
It’s so sad to think of all of those who have HCV and do not have any financial support. We feel vulnerable anyway when our health is poor.
Our story sound a lot alike with the diagnosis of depression. Geez. It took so many years to figure it out. I’m just glad for the new medications. I know we’ve talked about it but can’t remember.. Will you be able to treat with new meds?
Love ya hunnyo,
xo Karen:)
What a truly wonderful blessing this safety net is for people who really need it. I faced the very real possibility of becoming homeless when my liver decompensated. I battled hepatic encephalopathy, debilitating fatigue and recurrent ascites for 3.5 years without being able to work, without health insurance and without diagnosis. SSDI and the affordable care act literally saved my life. My social security started about 90 days after diagnosis, (diagnosis paid for through new health insurance.)
What an amazing blessing to awaken each morning and to have the opportunity to spend the last of my failing health with my 6 year old daughter, or to sit in the sun and meditate, or to enjoy a cup of coffee at sunrise, or to write a letter reminding a loved one just how much they mean to you.
Dear Johnny_Wayne, thank you so much for sharing your story. My name is Dee, I am helping my friend Karen right now as she recovers from her most recent procedure and also waits for her liver transplant.
It breaks my heart to think of you homeless with a six year old. I recently heard of a place called PAN, I think it stands for Patient Access Network. They give grants to people to help with expenses I am told. I will try to find more information and get back to you asap. Bless you. Dee
Hi I am new to this so hope I am placing in the right place. https://www.panfoundation.org/
I was looking for information to help me come to terms with my present state. I have already been approved for disability due to cirrhosis and liver cancer. I will not receive a payment until December 23, 2015. I have been able to receive some emergency sick leave from my employer. I had surgery on the 18 of August a requirement for transplant ( I was listed in April 2015). I have enjoyed the rest, and taking care of my 17 year old son who is a senior in high school, but I worry about keeping insurance and my finances. Reading this article has helped me a lot. I will have my next check up (MRI/etc) in October. Can you give me a little bit more information about how you survived paying for your medical treatments? I am single, my son does receive SS, but our income together will be less than 2000. I have short term and long term insurance, but I am having a problems getting the forms completed. I am trying to keep insurance as long as I can before COBRA.
Hi there, I am so sorry to hear about your situation. Karen continued to work part time, to keep her insurance. I do know that once you have been approved for SS you can get medicare two years later but there are so some rules. Of course one is age. Another thing that I know, it took my husband 18 months to be approved for SS so so 6 months later he was approved, he was only 55 so age did not apply. Also the money was retroactive so that really saved us. Karen had a transplant and is recovering, I will ask her if she could add to anything I have said.
There is also a patient network that helps people for medical reasons, it is called PAN. I think that stands for Patient Advocate Network. They give grants for various illness’s Have you tried looking into state or county help? When I was really down on my luck but did not qualify for help I found a place called ECHO, Ecumenical Churches helping others. They may only be in my area I don’t know where you are but if you could share the state I will take a look. They help with food clothing, small household goods. Do you have a human resources office to help you fill out your forms? Can you ask for help from a friend or neighbor, a church? I wish I could help you.
I know how scary this is and I am so sorry, I have been in similar situations where I had children, no money, no hope of money.
Thank you for writing. Please keep in touch. Let me know what state you are in I could search for help, take care
Oh, when I lost my job we had to cut out a lot, not saying you haven’t already done that. There are also liver organizations. Could you get on the affordable care?
You’re right about how having that financial assistance really helps you be able to rest, relax, and not worry about how the bills are going to get paid. I hope you are able to enjoy these last years. Are you going to get an awesome scooter with a unicorn on it? That picture really made me laugh!
Hey there you are so right, when money is tight nothing seems right. Haha, I am a poet now. SS is really not enough to live on but it does help and we do pay in to it all our lives. I still worry about money and at the end of the month food i scarce but at least I have a roof over my head, Thanks so much for writing.
I have cirrhosis I and have drank beer very little when I was young. I’m in stage 4 but the Dr. don’t know what caused it my mom and her brother died of it and my sister died of it but she drank àlot . Karen how long have u known that u had cirrhosis.
I think you should ask your doctor to do some screenings. It could be a biliary disease or NASH or Hepatitis. I didn’t find out until 2010 and then it was already end stage.
You can live a long life if you take medication and live a healthy lifestyle. Thank you so much for dropping by. xo
xo Karen
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