I am disabled from Lyme and I want to move on with my life.
I live in RI with my parents, but I want to find a way to live independently in a warmer area. (vrrr!)
I am on SSI, and have been investigating housing options such as section 8 (the voucher program), though the waitlists are full.
Has anyone had the experience of living 100% off of SSI (about $650/month)? If so, how did you afford copays, supplements, and other needs of a Lyme pt.?
I want to make this work!!
All suggestions welcome.
kado Posts: 60 | From Barrington, RI | Registered: Oct 2003
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi Kado,
Can you tell us a little more about your health situation?
Off the bat $650 sounds like it would be a stretch.
Others here in similar place will hopefully have some good advice for you.
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Kado, Quite honestly,,,stay where you are,,,use the $650 to get well with. It wont cover independent living expenses, let alone lyme meds.
You will struggle so badly you would for sure end up back there any way. Count your "LUCKY" stars you have such a safety net,,,so many dont!!!
The quicker you get well, the quicker you can get back on your own and be a regular normal person(whatever THAT is)!!!!
If you dont believe me,,,just add up utilities,groceries, insurances, car expenses,insurance and gas ,oil and repairs,let alone taxes and license. Be generous on amounts needed for virtual necessities and it quickly adds WAY to high.
Then figure out what your LLMD costs,meds, supplements, transportation etc. General practioner,,,any special other docs, other medical expenses, not forgetting medical coverage insurance.
Its easy to SAY, I will have enough,,,quite another thing to accomplish that!! It just doesnt go far enough,no way,no how!!!
And I havent mentioned rent etc, YET,,,even IF its free you might run short!!(and it wont be!!)
IF you can get by with that amount independent living your beating the averages by 500%. If you NEVER bought a stick of furniture or any household items at all,still cant pencil a proper budget,,,try it!!!
If you can get the budget to balance,,,let us know,post your results so we can all join the club!!!remaining-just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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I have been infected since I was 5 (22 years ago) but didn't become dibilitatingly ill until I was 19. I recieved a Lyme dx 3.5 years later, at which point I began IV and oral abx for a year. I never found improvement with the abx or any other of the 278 treatment combinations I've tried. Now, it's been 8 years since I became ill and 5 years since I began treating the illness as Lyme by LLMD's. I am on SS, Medicare and Medicaid.
The concern I have is that my life has been on "hold" for 8 years. I am still attempting to finish my BA via internet, however I don't know if it'll help me since I'm unable to work. My parents have been kind enough to let me stay with them, but while it's not terrible it's not ideal for them or me. I know that people figure out how to survive on their benefits, but I'm feeling at a loss. I feel that there must be a way to have a disabiling condition like we have, and also be independent.
I am aware of budgeting and recognize that the $650- SS plus the $10 food stamps (month) is really a joke. Perhaps if I rationed myself three grains of rice per meal:)
Anyway, perhaps that will fill in some of the "blanks". Thanks for your response.
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Well, with SSI you get medicaid, and free rx's, I believe, so that helps, but not sure how they cover Lyme meds. You may already know that.
I know people who live on SSDI, but most need some help from somewhere, a child, a parent, someone, because cars wear out, things fall apart, etc.
There is often free transportation available, but around here it is a nightmare. You have to wait forever and for me that would mean I would be exhausted just waiting for them to get to come, let alone by the time I had an appointment and got back home.
A lot to consider there, but I can certainly understand your wanting to be independent.
I have a son who is in a similar situation due to health issues and is still living with me. He wants to be on his own and is champing at the bit, but I assure him the time will come soon enough and then he will be really independent.
Good luck in making your decision.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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quote:Originally posted by Lymetoo: Boy, that would be next to impossible unless like don said, your rent would be free.
Even then, it would be VERY TOUGH.
I noticed you signed on in 2003. Have you had treatment this entire time??
Thanks for your reply. I have been on treatments for Lyme since before that, and still now, but I'm having little luck. Right now, I'm on the Cowden Protocol, which I obviously would not be able to afford if I needed to pay rent.
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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quote:Originally posted by just don: Kado, Quite honestly,,,stay where you are,,,use the $650 to get well with. It wont cover independent living expenses, let alone lyme meds.
You will struggle so badly you would for sure end up back there any way. Count your "LUCKY" stars you have such a safety net,,,so many dont!!!
The quicker you get well, the quicker you can get back on your own and be a regular normal person(whatever THAT is)!!!!
If you dont believe me,,,just add up utilities,groceries, insurances, car expenses,insurance and gas ,oil and repairs,let alone taxes and license. Be generous on amounts needed for virtual necessities and it quickly adds WAY to high.
Then figure out what your LLMD costs,meds, supplements, transportation etc. General practioner,,,any special other docs, other medical expenses, not forgetting medical coverage insurance.
Its easy to SAY, I will have enough,,,quite another thing to accomplish that!! It just doesnt go far enough,no way,no how!!!
And I havent mentioned rent etc, YET,,,even IF its free you might run short!!(and it wont be!!)
IF you can get by with that amount independent living your beating the averages by 500%. If you NEVER bought a stick of furniture or any household items at all,still cant pencil a proper budget,,,try it!!!
If you can get the budget to balance,,,let us know,post your results so we can all join the club!!!remaining-just don--
Don,
Thanks for the lengthy message. I hear ya:) I know that this seems impossible, but I just keep wondering what other people do.
Is it possible to be sick and live independently if you're unable to work?
Most of the people that I used to know with Lyme have had money- a spouse, a parent etc. I am fortunate and grateful that I have had support from my parents, but I can't do this indefinately. They are frustrated, extremely frustrated that they have poured their money into trying to get me well, and while I've learned a lot and ruled some things out, my health is the same as what it was at my first doctor's appt.
The other component is that I have Raynaud's and I'm constantly fighting the weather. The barometric weather changes affect my Lyme and my circulation, and I carry a space heater with me from one room to the next. (Our house is expensive to heat and my parent's prefer the house to be cooler than my body likes.) I wish there was a way that I could be more comfortable while I search for a treatment.
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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The first is easy-- is there an icon to post a reply without first quoting the text for which you are replying?
Secondly, if you don't mind me asking, is your son in the same position as me, in that he's a disabled adult waiting for a treatment that will make him able to work?
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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bettyg
Unregistered
posted
kado, yes, you do not need to use the quotes "" feature.
here's what you do, go to top or bottom of screen to black and white boxes POST REPLY; i could NOT FIND THIS EITHER when i joined here, and did the same thing you did.
kado, here's how you can edit and DELETE BOLDING of quotes:
on each post where you bolded; click PENCIL ICON, which opens up the post.
you can block delete the BOLDED COMMENTS or just use the space key to delete all quoted comments.
then show the person's name, like you did, for don, etc., and your comments back.
when done, click the EDIT SEND button.
now go to the next one you bolded, and delete the bolded comments leaving your reply. EDIT SEND when done.
you're getting SSI, Social Suppplement Insurance, but have you ever applied for SSDI, SOCIAL SECURITY DISABILITY INSURANCE, BENEFITS?
for someone young like you who has never worked, i don't know how that works.
i'm going to send you my newbie links/advise as there's info in there about needy meds, etc. for those with LOW income.
you might be able to use some of the other stuff as well; who knows?!
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bettyg
Unregistered
posted
also, do you wear fleece-type clothing at home; it's really quite warm and especially layered.
raynaud's is another illness mimicking lyme also. i know my hands/feet are like a freezer when i get into bed and that's with my socks on!
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posted
Kado, I do not want to discourage you but Just Don is right. I have lived on SSI for (you know I'm not sure how long I've forgot) I know it has been over 10 years. I do own my own house but still the repairs are hard to keep up with. There have been times when I didn't know where I would get the money to even buy gas for my mower to mow my lawn. I remember one time when my son came home and needed a $3.00 milk ticket and it was hard to find the money for it. Yes, I live on $623.00 a month. It can be done but it is always a constant struggle. Wouldn't it be great if we were all closer together and could live in a place where we could all help each other!! sick
Posts: 538 | From Iowa | Registered: Apr 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am living independently on SSI of $560 a month and I think $41 in food stamps.
It is very stressful.
I was just approved for Section 8 voucher, but have not seen a one bedroom house to rent advertised yet for around the limit of $450 that section 8 is allowing..only one ad in the paper so far and that was $700 a month.
On the positive side...I don't know how i would live with anyone at this time. Things are always changing with this condition and it is nice to not have the stress that would go along with it by living with others.
I live in an apartment and just the noise from the tenants upstairs or next door is too much at times...even if they are just vacuuming their apartment.
Depends on how I am doing during that time or if I can leave the apartment to get away from it.
Insurance is tricky too. I had Ketek denied. Filed an appeal and had it denied.
I had provigil denied. Trying to go the next step with it.
I had sleeping meds denied.
I need to get my lyme doc approved for an out of network doc.
Did not expect to have trouble with this and hoping I will not.
Water therapy was approved fo 15 sessions. We shall see how that goes after my time is up.
I use the senior van to get around and am very thankful for it. $6.00 a trip.
I had a power chair donated to me but it is waiting until I have the funds to get it out of the repair shop.
All in all. I am very thankful for being able to keep my independence.
And I am slowly improving.
Stress is a big factor. And living with others would be very stressful for me right now
Going through a good cycle right now so this is more up beat. But,there are times when I don't know how I am going to continue.
Then something good happens. I was without a monitor for the computer awile back.
Just Don made some connections and helped out with that.
It seemed to help out emotionally too and gave teh spirits a lift.
Don't even want to think about what I would be earning right now if lyme had not hit.
Keep thinking I will get well enough to do something to add to income. But, still trying to just be able to do household chores at this point.
Still not something I can do on myh own and need help.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Kam Can you tell me what an out of network doctor is. sick
Posts: 538 | From Iowa | Registered: Apr 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Kado and sick, I am in the same position as you. I am living on SSDI. (I am not eligible for medicaid or any other services as I have a tiny amount of assets that I refuse to spend down.) I know and appreciate that I am lucky to have a roof over my head.
I am not happy renting a room from my mom. Not that she's not a nice person but I do need to be on my own to be able to heal and take care of myself. (I am nearly 50 years old.) I am doing more care-taking than anything and it leaves little energy to take care of myself.
I have been trying to get on a waiting list for vouchered housing for 9 years. (The lists never open.)I'm not sure how much longer I can do this and I don't see a way out.
A Lyme commune would work for me. Between a few of us I do think we could get what needs to be done in a day. Anybody got a big house they need help keeping up with? None of us have much but all could contribute something.
That's where my head keeps going because I can't think of another way out.
Sorry to make matters worse by my whining... I've been watching this for a couple of days wishing and hoping a viable solution would appear.
Maybe it still will.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bettyg
Unregistered
posted
quote:Originally posted by sick:
Kam Can you tell me what an out of network doctor is. sick
example:
dorothy, an out of network dr. is like dr. c.
in every state, there are certain drs. that ARE ON NETWORK where that state's health insurance approves them as drs. to reimburse.
my minn. llmd was same way, but i called bcbs advising that iowa had NO CHRONIC LYME LITERATE MD IN ENTIRE STATE, so going out of state to some literate in lyme was a necessity.
bcbs refuses to pay $4300- out of pocket for my minn. visit, which i filed a complaint with iowa insurance commissioner. sent them another 80 pages yesterday with CRITICAL INFO to help pursuade them to pay as they stated they would do VERBALLY 3-06!
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posted
Betty, does that mean I should saee if medicaid will pay for my visit to Dr. C sick
Posts: 538 | From Iowa | Registered: Apr 2006
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posted
TrueBlue I think we would atleast understand each other if we lived together. I also think we would be better off financely too but you know they would cut any benefits we had until we were back in the same hole again. No way out is there. sick
Posts: 538 | From Iowa | Registered: Apr 2006
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Thanks for your response. I'm not sure what Social Security Insurance is-- did you mean to write SS income? I have been declared disabled by the state of RI, so I recieve two checks- SSI and SSDI.
Thanks for the other pieces of "newbie" info.-- I need to go back to the discussion page to find it.
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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posted
Betty Thanks for the fleece suggestions, and I'm a fan of fleece. In fact I even have an extra thick nubby one made for kids. Since it's made for children, it's very boxy in shape, and I slightly resemble cookie monster:) C is for Cookie, that's good enough for me:) I've found for me personally, my feet stay warmest in socks while sleeping, but my toes do better with increased freedom while I'm awake-- they sometimes go numb otherwise. I'm not sure if you need boots where you are, but high quality Sorels (tm) sp.? with removable liners, are great! There are also some new style slippers available that I've seen but never tried. I believe they are about $10-$15 in the discount catalogs, and they look like the moon boots of yesteryears, but they are made of down like sleeping bag material for camping and they are like little booties-- I bet they could work. Last but not least, I haven't tried it, but I've seen creams mkted toward diabetes pt.s that has L-Arginine in it-- I've never tried it topically, but who knows? (maybe someone on Lymenet:) Thanks again for your recommendations.
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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I appreciate your response. It seems like your mortage payments would eat up your whole income, or did you have your house paid for b/f?
I have thought (semi) seriously about getting together a group to form a co-housing communitty in an area with good weather.
I would need start up funding perhaps a grant to begin with, but after that, I would like to make it sustainable as a modified eco-community based on the abilities and disabilities of the people involved. Perhaps it's idealistic, but there are many inventive, educated and skilled individuals with Lyme who are chicken scratching for survival. We need a chicken Coop! That's it, that's what we can call our (fictional) idealistic housing community for people with invisible illness. "The Chicken Coop" If anyone out there on lymenet is interested in this idea, let me know. If we unite, join forces and talents, and use our passion for wellness to maintain our committment to the cause it's possible. No slackers, allowed because a dream like this is challenging enough with people who are healthy! I believe, it won't happen over night, but it's possible!
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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Thank you for sharing your situation with me (us).
I give you so much credit for keeping up.
The other day someone gave me these resources, just incase you haven't tried them.
1. 1-888-477-2669 Partnership for Prescription Assistance.
2. (573) 996-7300 The Medicine Program- There is a $5 processing fee for each medication you request, however, they will send it back to you if they are not able to help you. (This information was given to me a social worker at a mental health center that works with low income people)
I hope this could be of some assistance, but I'm sure I'm preaching to the choir.
Best
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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There are newbie links in Medical Questions. It's about item #6 on the list of topics.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Chicken Coop. I like that.
I have considered this concept also.
But, it is difficult enough for healthy people to live under the same roof.
Can you imagine people with lyme living under the same roof?
The only way I thought it would work out is if we had our own place but shared household chores and a common area where we can go when we want to or are able to be around others.
A dorm like setting?
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Kado, I really like your "Chicken Coop" idea! I have actually been thinking about something like it for a while now.
I am not yet in the position where I am living entirely on my SSDI income. I was very lucky that at my last job I opted to purchase long-term disability insurance.
I receive SSDI of about $690 plus around 2/3 of my former salary. I also have a small inheritance from my mother (an IRA) from which I draw a small monthly amount.
However, the inheritance is tied to the stock market and I can't get it out to invest for myself. In 2001, the amount diminished by half. I figure
I have about 1 to 1 1/2 years of this income left. In ten years, my long-term disability payments will stop (when I turn 65.) So, I will be like you, living on very little per month.
I currently own my own home and pay all the expenses that a working person would. I have some savings that I dip into almost every month to keep up.
I have a lot of equity in my house. And I intend to keep my small savings. So, if and when I have to sell my home, I will have funds that will make me ineligible for most services.
I have thought about finding others who are dealing with these issues, and especially those with Lyme or other chronic conditions, to join together in a supportive living arrangement.
I have even searched online for communal living type setups. They do exist. Some require a 3-6 month "visit" which is meant to test how a person
would fit in to the community. You can google communal living as a start to research this yourself. Most of the areas I have looked at are in the midwestern states. I would prefer the southeast.
I have also researched groups living outside the US. There are American enclaves in Mexico and other countries. The cost of living in some of these places is very low.
I don't have to do anything right away. But I expect that my Lyme treatment may cost me most of my savings and could put me in a position to need help with a living arrangement sooner than later.
Please PM me if you'd like to discuss this further. I am not on the computer as much as I have been in the past....pretty sick here but will try to respond as soon as I can.
Wishing you and all the best of days and dreams, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
Kado, My house was paid for but i had to have it rewired, a roof and some foundation work done. i got a low interest F.H.A. loan so the payments were very low. i only have three left and I will be done with them but it has taken a long time. sick
Posts: 538 | From Iowa | Registered: Apr 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Kado, you asked about my son. He suffers from a mental illness. It's not waiting for treatment that has set him back, but accepting that he actually needs treatment.
He almost completed college in four years, which I find amazing because he was quite ill in his final year.
I attribute his amazing talent to part of it as well as the unique standards found at art schools, like the code that if a student is a senior and shows up for attendance the student is supposed to pass the class.
That's the explanation I got for why he failed a class his last semester. I did ask another student if that was really true and he said it was, so it wasn't just a psychotic idea of my son's.
He's been hospitalized four times for his illness and his dad and I think the last one, which was last summer, finally got through to him.
He is in a county-run out-patient program to help him stay on his meds and he has recently begun volunteering at the National Alliance for the Mentally Ill. I think that will be the most helpful to him.
He completed his degree in 2004, three years after he was supposed to graduate. However, as we tried to tell him earlier, there are not a lot of jobs open to people with degrees in painting.
Each of his hospitalizations, but the second, was due to his stopping his meds because he didn't think they made any difference. That is common in people with his dx.
They also do not realize when they begin to lose touch with reality, even though all those around them do.
After his last hospitalization he had to leave his job because his coworkers wouldn't even look him in the eye when he returned to work.
He went for almost six months without permanent work. He did try a very intensive job during the summer, but he realized it was too stressful and left after three weeks there. I completely supported him on that decision.
It had been a concern of mine from the beginning with that job. He can't be in stressful situations. They can trigger a relapse of his symptoms.
So, to answer your question, his situation is not the same as yours, but never-the-less he's about the same age as you are and is really tired of having to live with me.
His dad is too suspicious, so he's always been with me since college. He will be moving to his dad's office, which is in a house, for the next few months while I'm in an apartment before my new home is completed.
I can really relate to Janet's story because mine is quite similar. I bought this house with my mom when she was 90 and I was 50. She recently died and I can't afford it on my own.
In fact it really became like an albatross to me. We moved in three weeks before I had to leave my job due to Lyme.
I too had LTD, which has been a blessing. I also should have received disability retirement, but the state in its infinite wisdom insists I can still teach school.
Now considering that I am on SSDI and LTD and that the county has just approved my disability retirement from them, I find that quite an interesting situation, which I do intend to pursue soon.
As long as I am receiving LTD benefits it only makes a difference during July and August, when LTD doesn't pay me.
However, when I turn 65 I will lose that and then the extra $1,000 a month from disability retirement compared to regular which was based on only thirteen years of service, will make a huge difference in my ability to pay my bills. I am working toward paying off my new home by then, so my expenses will be lower.
This is way too long. I apologize.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
quote:Originally posted by bettyg:
EDITED: this should be SSI, SUPPLEMENTAL SECURITY INCOME!; i always screw this up andshow social supplement insurance!!
kado,
you're getting SSI, Suppplemental security INCOME, but have you ever applied for SSDI, SOCIAL SECURITY DISABILITY INSURANCE, BENEFITS?
From HUMANBEING, Here is a link to help people get access to medication they can't afford...good information... http://www.needymeds.com/
( liveforthechallenge.com ) that is a registry for "everyone who is currently struggling with medical difficulties."
Basically, those who register, pick out things that they need to survive, and people come around, read about you and your needs, and donate what they can. The perk to this is that people know exactly what you need. The founder of this site is Diem, from Real World Road Rules Challange: Fresh Meat. She struggled with Ovarian Cancer, and wanted to help others ********************
http://www.freecycle.org/ - click on your state & check what is being GIVEN AWAY FOR FREE, no $$ involved!
posted
Our daughter is stuggling with the same dilemma. She really wants to be independent, but there's just no way at this point in her life.
She's 28 years old, has Lyme w/3 co-infections. She moved back in with us over 6 years ago.
She receives a total of $1100 a month in disability payments ($700 SSI & $400 work related disability insurance).
We've gotten her debt down to a reasonable number, her monthly bills are about $300.
Just to give you an idea of the costs we have; our total medical; doctors, dentists presciption medicine, hospitals, lab tests, etc. last year was $25,000 +.
We've discussed this issue with our daughter many times and for now she's going to attempt to put as much money away in a savings account as possible.
Hopefully when she's really well enough, there'll be sufficient money for her to get out on her own successfully.
It seems to me that there are enough disappointments associated with being so sick, that moving out and then having to come back would really cause problems.
[ 24. January 2007, 03:41 PM: Message edited by: lymedad ]
Posts: 681 | From California | Registered: Oct 2005
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posted
Lymedad, Does your daughter use Lymenet? I was thinking it would be cool if we could talk since I don't know anyknow my age in my situation. I live in RI.
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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