I was just recently diagnosed with kappa light chain multiple myeloma, but I have extensive damage / active disease throughout my spine, hips, pelvis, left arm and right leg. I am very thankful that I am able to maintain the mobility I do and will do everything in my power to stay that way. I intend to stay in my home as long as possible, but will be able to move to my daughter's when the time comes when I can't be alone. I understand that at any time I could twist or fall and shatter something.
I worked fulltime until January 1st when I went to part time so that I could qualify for Medicaid. Fortunately my application crossed the desk of a person who has a friend with multiple myeloma, and she pushed it through and backdated it January 1st. I am incredibly thankful.
As of last Friday I am 'retired' because I started Revlimid, Velcade, and dexamethasone (RVD) and Zometa on Wednesday. Tuesday I have a telephone interview with Social Security for disability. And I have submitted an updated application for public assistance, but from what I understand that will only add food stamps.
For the last year to 2 I have been buried in out of pocket medical expenses and have depleted every penny. Right now I owe probably close to $10,000 from medical copay / unallowed just from the last few months of 2016. I also got behind on everything else. So I am bankrupt, but I will hold off filing as long as possible.
I had an appointment with a social worker from the Agency on Aging and she was very helpful. It appears I can qualify for home health aides, which would take some pressure off my daughter and son-in-law
The biggest problem I run into is that "I don't look sick". But at any moment I could lose my ability to walk. That's not being pessimistic or unhopeful. It's a fact of life. What I would like to do is take advantage of any programs that would help, but I'd like to start making modifications now. Not wait until I am in the hospital having spinal repair.
From anyone who has navigated the system, what are the tricks and tips? Are there any specific agencies that I should/could apply to?
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Disability & home modification assistance programs
Hello Judi,
Thanks for sharing about the difficulties you are in due to disability caused by the myeloma. I know a bit of what you speak since I had painful compression fractures of the vertebrae at the time of diagnosis. At that time, I was so scared of getting further injury that I carried a cell phone with me in a small purse around my neck at all times when I was alone, either inside the house or when I was outside for walks so that I could call '911' if necessary. I knew the signs of what to watch for also in case of spinal cord injury. Hope you have checked with your doctor about precautions that way. Some patients might also get a 'Lifeline' to call for help if they need it. I was very relieved that I did not get any further fractures due to the chemotherapy and also the bisphosphonate treatments I took. It looks like you have been started almost immediately on treatment after getting a consult with a top specialist, so that is good news.
I don't understand the system that you are dealing with, since am not in the same situation or even the same country, but am wishing you the best of luck as you navigate different agencies to get the help you need.
Thanks for sharing about the difficulties you are in due to disability caused by the myeloma. I know a bit of what you speak since I had painful compression fractures of the vertebrae at the time of diagnosis. At that time, I was so scared of getting further injury that I carried a cell phone with me in a small purse around my neck at all times when I was alone, either inside the house or when I was outside for walks so that I could call '911' if necessary. I knew the signs of what to watch for also in case of spinal cord injury. Hope you have checked with your doctor about precautions that way. Some patients might also get a 'Lifeline' to call for help if they need it. I was very relieved that I did not get any further fractures due to the chemotherapy and also the bisphosphonate treatments I took. It looks like you have been started almost immediately on treatment after getting a consult with a top specialist, so that is good news.
I don't understand the system that you are dealing with, since am not in the same situation or even the same country, but am wishing you the best of luck as you navigate different agencies to get the help you need.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Disability & home modification assistance programs
Thank you Nancy. I'm laughing about the phone around the neck because that was a demand of my children and friends, or I would be forced to move in with my daughter. I'd like to see them try that! But they do love me and it eases their mind greatly if I show the caution they want.
The damage to my body is extensive but I am hopeful that treatment will stop any progression. And I pray nothing 'breaks'. When we get the cancer controlled I'll be able to have some surgeries and treatments to stabilize further.
I am oversharing Here and elsewhere. The reason being that I have had so much difficulty finding answers so I would like to pave a path for the person behind me.
I didn't like being a poor divorcee with no assets and a great but low paying job last year, but it's a great benefit now. In December I was paying 20% co-pays and waiting up to 2 weeks for every test approval. I think anyone with mediocre healthcare that has assets would have a catastrophic financial situation with this diagnoses.
My Social Security application went well and I was ecstatic to find out that, once my application is approved (that could be months but I am hopeful that my PET will push it through), I will receive SSI payments until that 6-month wait is over. I have been concerned about how to survive until SSDI. I could have worked part time, as much as I wanted and was able to. My bosses are wonderful men and have bent over backwards to help me. The problem with SSDI is that you cannot work at all.
The programs I was speaking of, they're designed to keep people like us independent and in their homes. From what I was told it will take up to 2 months, but I will be allowed home health aides to assist with anything I am unable to do, and home modifications to help as my condition changes.
My thoughts on this is perhaps I should try to get some of these modifications in progress as soon as possible. Not wait until I am in rehab and waiting to go home, after an incident or surgery.
I had turned into a hermit from pain and exhaustion. Now that my pain is adequately treated and the steroids have increased my energy; I am getting out more, even just to the store. Of course, starting treatment tomorrow may stop that for awhile. I use a walker when out, but if there will be a lot of walking I use a courtesy wheelchair. Sometimes at home I can't walk without assistance. I was thinking it may be time to see if insurance will allow one for me. I'd rather be prepared for anything.
If anyone has dealt with any programs, I appreciate your insights. And I will share mine as well.
Judi
The damage to my body is extensive but I am hopeful that treatment will stop any progression. And I pray nothing 'breaks'. When we get the cancer controlled I'll be able to have some surgeries and treatments to stabilize further.
I am oversharing Here and elsewhere. The reason being that I have had so much difficulty finding answers so I would like to pave a path for the person behind me.
I didn't like being a poor divorcee with no assets and a great but low paying job last year, but it's a great benefit now. In December I was paying 20% co-pays and waiting up to 2 weeks for every test approval. I think anyone with mediocre healthcare that has assets would have a catastrophic financial situation with this diagnoses.
My Social Security application went well and I was ecstatic to find out that, once my application is approved (that could be months but I am hopeful that my PET will push it through), I will receive SSI payments until that 6-month wait is over. I have been concerned about how to survive until SSDI. I could have worked part time, as much as I wanted and was able to. My bosses are wonderful men and have bent over backwards to help me. The problem with SSDI is that you cannot work at all.
The programs I was speaking of, they're designed to keep people like us independent and in their homes. From what I was told it will take up to 2 months, but I will be allowed home health aides to assist with anything I am unable to do, and home modifications to help as my condition changes.
My thoughts on this is perhaps I should try to get some of these modifications in progress as soon as possible. Not wait until I am in rehab and waiting to go home, after an incident or surgery.
I had turned into a hermit from pain and exhaustion. Now that my pain is adequately treated and the steroids have increased my energy; I am getting out more, even just to the store. Of course, starting treatment tomorrow may stop that for awhile. I use a walker when out, but if there will be a lot of walking I use a courtesy wheelchair. Sometimes at home I can't walk without assistance. I was thinking it may be time to see if insurance will allow one for me. I'd rather be prepared for anything.
If anyone has dealt with any programs, I appreciate your insights. And I will share mine as well.
Judi
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
Re: Disability & home modification assistance programs
Sorry to hear of the situation you are in. Though there are many resources available in your area and in Ohio. If I recall correctly, you mentioned you live in the Youngstown area?
May I recommend you look up Ohio Healthy Homes Network on the Internet and go the Resources link to choose your county. A list of companies and services pages up, which offer services you mention.
You may also want to look up the United Way of Youngstown and Mahoning Valley who have partner agencies which are also listed on the OHHN; again, list of services you mention.
The Mahoning County Commissioners website includes a listing for Community Services, which include a list of services you mention.
All three of these resources listed include the Interfaith Home Services as a resource. You may want to review all this information and see what meets your needs.
Lastly, the Western Reserve Area Agency on Aging has numerous services / programs listed for their geographic area. Though you do not fall into their domain, being in the Youngstown area, most services / programs are offered state wide, and, the services / programs link at WRAA will give you additional information pointing to additional resources in your specific area.
Best to you!
May I recommend you look up Ohio Healthy Homes Network on the Internet and go the Resources link to choose your county. A list of companies and services pages up, which offer services you mention.
You may also want to look up the United Way of Youngstown and Mahoning Valley who have partner agencies which are also listed on the OHHN; again, list of services you mention.
The Mahoning County Commissioners website includes a listing for Community Services, which include a list of services you mention.
All three of these resources listed include the Interfaith Home Services as a resource. You may want to review all this information and see what meets your needs.
Lastly, the Western Reserve Area Agency on Aging has numerous services / programs listed for their geographic area. Though you do not fall into their domain, being in the Youngstown area, most services / programs are offered state wide, and, the services / programs link at WRAA will give you additional information pointing to additional resources in your specific area.
Best to you!
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ZippyZelda - Name: ZippyZelda
- Who do you know with myeloma?: Spouse
Re: Disability & home modification assistance programs
Thank you Zippy. Yes, Youngstown.
I had a wonderful social worker from the Agency on Aging for an in-home interview last week and she got me started. These rapid life changes are very difficult for me, and it helps me if I feel prepared. I will look into the others you have mentioned as soon as possible.
Today was a very bad day. :/ It started off well. My wonderful (ex) boss met me at the office early so that I could print all the pertinent medical records for social security, and helped me create an "easy to understand for nonmedical people" summary and cover letter. And kill a tree and burn through a printer cartridge in the process! I arrived at 9 AM to the local Social Security office and there was at least 15 ahead of me to sign in! I stood for about 15 minutes but my legs were throbbing and I had to sit down, but then I remembered she had said there was a place to leave that package and I did so.
Got home, put on my very cool Tardis dress and headed to local oncologist. On the way we jammed to showtunes and had a very upbeat mood.
I had to get bloodwork first. The 3 women working the lab were discussing that one just got a bonus. It took them close to 20 minutes to complete my blood draw, talking the entire time. They wanted to draw from my hand and I refused because the neuropathy was severe today. They repeatedly told me that I had to tell the nurse I made them draw from my inside elbow, so they wouldn't get into trouble.
When I saw the oncologist, he was much better and I felt confident and at ease with him, compared to the previous visit. The MRI on my left arm was worse than expected and I will need to get a pin in place as soon as feasible. Then, last week we reviewed my FISH. It turns out that another report came in yesterday. And there is an issue with chromosomes 13 & 14. Absolutely a punch in the gut because we weren't expecting it. Every single result that comes in makes the situation worse. It wears me down.
Got through the shot and IV but I was frazzled going into it, and this afternoon was spent talking to only my immediate family and friends to update.
Then I had a phone message from a Social Security woman that because I didn't update medical information online (which I can't do because she has application locked for processing), and if I don't do so right now, she will cancel my application! So she didn't bother opening the package because the cover letter explains that I am locked out of the processing application.
So tomorrow I will contact Columbus office of Social Security and BEG for someone with medical knowledge that I can send all of this too. While I try to get through to her on the phone to explain why I can't update anything.
I did talk to Cleveland Clinic and will go in next week for a discussion on these latest results. Anything I can do to keep my mobility, I will try. I realize how miraculous it is that I am walking and I am thankful
All this while I strap on for this wild ride of Revlimid, Velcade, and dexamethasone (RVD) plus Zometa. So far so good I am having severe neuropathy and leg pain, but that started before the medications.
I had a wonderful social worker from the Agency on Aging for an in-home interview last week and she got me started. These rapid life changes are very difficult for me, and it helps me if I feel prepared. I will look into the others you have mentioned as soon as possible.
Today was a very bad day. :/ It started off well. My wonderful (ex) boss met me at the office early so that I could print all the pertinent medical records for social security, and helped me create an "easy to understand for nonmedical people" summary and cover letter. And kill a tree and burn through a printer cartridge in the process! I arrived at 9 AM to the local Social Security office and there was at least 15 ahead of me to sign in! I stood for about 15 minutes but my legs were throbbing and I had to sit down, but then I remembered she had said there was a place to leave that package and I did so.
Got home, put on my very cool Tardis dress and headed to local oncologist. On the way we jammed to showtunes and had a very upbeat mood.
I had to get bloodwork first. The 3 women working the lab were discussing that one just got a bonus. It took them close to 20 minutes to complete my blood draw, talking the entire time. They wanted to draw from my hand and I refused because the neuropathy was severe today. They repeatedly told me that I had to tell the nurse I made them draw from my inside elbow, so they wouldn't get into trouble.
When I saw the oncologist, he was much better and I felt confident and at ease with him, compared to the previous visit. The MRI on my left arm was worse than expected and I will need to get a pin in place as soon as feasible. Then, last week we reviewed my FISH. It turns out that another report came in yesterday. And there is an issue with chromosomes 13 & 14. Absolutely a punch in the gut because we weren't expecting it. Every single result that comes in makes the situation worse. It wears me down.
Got through the shot and IV but I was frazzled going into it, and this afternoon was spent talking to only my immediate family and friends to update.
Then I had a phone message from a Social Security woman that because I didn't update medical information online (which I can't do because she has application locked for processing), and if I don't do so right now, she will cancel my application! So she didn't bother opening the package because the cover letter explains that I am locked out of the processing application.
So tomorrow I will contact Columbus office of Social Security and BEG for someone with medical knowledge that I can send all of this too. While I try to get through to her on the phone to explain why I can't update anything.
I did talk to Cleveland Clinic and will go in next week for a discussion on these latest results. Anything I can do to keep my mobility, I will try. I realize how miraculous it is that I am walking and I am thankful
All this while I strap on for this wild ride of Revlimid, Velcade, and dexamethasone (RVD) plus Zometa. So far so good I am having severe neuropathy and leg pain, but that started before the medications.
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judimcbry - Name: Judi
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2017 delayed
- Age at diagnosis: 52
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