Regardless of the disease, the country or the age, chronic illness is a catastrophic event for the individual and their family in all levels. Inability to work or to keep up with work, medical appointments, tests, special equipment and medications all cause hardship.
Anyone care to vent, offer advice, tell your story?
I'd like to know how others are able to work. I'm not taking Xyrem right now and am so tired, I can't think straight. I was tired even with Xyrem but at least with daytime stimulants, I could function and hold onto a job. Now I take stimulants during the day but feel like I'm burning that proverbial candle at both ends. And me not working will be a hardship before the end of the year. That's when the money runs out.
I also have Hashimotos Thyroiditis. Most of my meds are supplements and not covered by insurance and I used to spend $100-200 per month. Now I've cut back considerably.
Oh, and insurance? Every year we get less and less for the money. Yesterday I called to make an appt with my sleep doc and was told I needed a referral. What? I found his name on the internet less than a year ago and had no referral then and insurance paid for another sleep test and multiple visits (my original doc disappeared with all his files--oops, we all want to know what he ran from) but to see him again I need a referral? So yes, more appts to wait for and sleep through.
If you want to know what keeps me going, I have a very supportive husband. He never criticises my inability to keep the house clean and he's very appreciative of what I can do. When I worked, he did all the shopping, the cooking, the pet care, car maintenance, lawn care,etc., and would take me whenever I needed to go. That way, I could put all my energy into the job. It wasn't the most exciting life but it was the best that we could do. He's the best!
It is so good to hear that you have a supportive husband, especially the emotional support which is sometimes lacking.
We seem to have to jump through more and more hoops these days to get the help we need from the medical profession; more stress we could do without.
Hello All,
Trying to make this a short response, a little venting.
Finances are a major challenge for me on top of the illness. Recently I contacted all human service agencies to see if there is any available assistance for housing. Currently budget is extremely tight and I cannot continue to attempt supporting my current housing situation in a college town (very expensive living here).
The results of all those agency contacts were zero, except for one. One agency told me that even if I was homeless there would be no help available because my "low income" is slightly above their guidelines. What? even if I was homeless...? LOL!
The one agency that has possible options available is the Rural Development Agency making loans available for low income persons. But over 50% of the bankruptcy's are related to illness or medical expenses. If you have bankruptcy, judgments, or "write offs on your credit history, it's a problem getting a loan to buy a house. Extenuating circumstances will be reconsidered... So fill out the 5 page application, pay the credit report fee and wait. Then there is the problem of trying to find an "affordable small house". It's all crazy making, sometimes having to choose between food, medication and medical copay's for physical therapy.
Recently, received a letter for "re-certification", to return 2 forms by a certain date But they didn't include the forms. 5 phone calls later, sorry we will get those out, don't worry about it....yea right, "don't worry" anxiety anyone?
Little irritations in life the illnesses, Paper work night mares...Doctor and therapy appointments....
Walking ahead one day at a time and trying to remember we all face these things. Thank God for your partner it a bummer doing this alone.
Ranger
Totally agree!
Ranger
Nel said:
It is so good to hear that you have a supportive husband, especially the emotional support which is sometimes lacking.
We seem to have to jump through more and more hoops these days to get the help we need from the medical profession; more stress we could do without.
I sometimes think I would like to replace with a supportive partner the husband who walked off, but can’t afford the risk of adding to my troubles! 
Financial stress certainly does not help our illness at all. Diability takes forever hoever it seems ppl who really does not need it can get it the first time and living better than ppl who work their butts off. I know someone who got it first time for having copd. But never has held a full timejob for more than a few months however I started the disabilw process in december was denied first time so I got a lawyer and now waiting on court date. My spouse was working so we were making ends meet barely we were staying in a motel until one of the low income housing places I signed up for had an opening. But last week we had another brick wall thrown in front of us she had to stop working bc she was in so much pain they found two herniated disk in the neck and two in lower back. So she is off work for atleast 6 weeks if they do surgery longer. Yesterday I called all churchrs family services and went to an agency called west central and had no luck we r suppose to be out by 11am today and as of right now no place to go. So yes I understand financial strain when it comes to having this disease. You would think there could be more help for us. Sorry theres my vent for today sorry I couldnt offer help. Good luck to everyone in financial trouble keep a positive mind and keep thinking it has to get better thats what I do.
best wishes
angie
I am so sorry Angie. How awful for you both. I don’t know the first thing about how it all works in the US so can’t offer any ideas. I can only hope that something works out right for you.
I get down alot seeing my husband work so hard and there’s nothing I can do to help. I have been working since I was 17 and had to After my narcolepsy progressed two years ago, I have applied for disability back in November I was denied so I got me a lawyer and they are fighting for me cause I just don’t have the energy to do it on my own. I will say this, people will deny narcoleptics for things at the of an eye they look at us and say it don’t look like nothing wrong with you, but a person that’s not battling this disease has no clue what we go through on a daily basis including our love ones at times, but those who don’t know are the first ones to try and judge us. Now with that being said in saying to each of you because we know how hard it is, keep your heads up, pray and continue to fight this difficult disease and know that is a fight we will have to continue battling for the rest of our lives and I’m praying for you all as I pray for myself because I do know how hard each day is but I will never stop fighting.
I wouldn’t wish physical disability on anyone but there’s no doubt that those of us with a disease which, though it causes our lives to be turned inside out, leaves us looking tired but well and only manifests itself at a time not of our choosing, have enormous difficulty getting fair treatment from the authorities.
You are very brave all of you in your determination to keep up the fight.
We must realize that we are a special and increadably brave group of people who face each day these challenges.
Thank you all for being there for all of us!
Ranger
Thank you for the discussion. Until I joined the online groups, I was the only person I knew with narcolepsy. It really helps to know that I'm not alone.
And now I know that if I try to get disability, I'll start with a lawyer.
Ranger, you are right. You are a very special group of people!
Obe of the best places to get help with a disability case in the USA is a company called Allsup… Message me and I’ll give you more details. That is the first step before you fill out any paper work. Lawyers can tend to run the meter…
Ranger
I feel very fortunate that I am able to work. In fact, I work a lot, maybe 50 hours or more a week with another 8 hours a week of drive time. As I think of why I am able to work so much, the only answer I can guess at is that I love my job. There are some things that can keep my attention for hours such as jigsaw puzzles, but if I'm not 100 percent interested, I tire quickly. It's kind of odd that I can work all day but if I were to stay home and do stuff around the house, I need a nap every other hour. Maybe a key to being able to work is to find what you love to do. I know there are many of you that may have more severe narcolepsy than I, but it is just a thought.
In reading the other replies, a topic of discussion came to mind and that is having a supportive spouse or family member. Off the original topic, but although my husband "tries" to help, it is not nearly enough and I get very moody and angry that I have so much to do and so little energy. I sometimes get very bitter and think it would be easier to just be alone, but then I would have no help at all. I guess I would like to know if anyone else has had their narcolepsy affect their relationships and how you handled it.
As far as the financial end, I am lucky but my heart goes out to those of you who struggle and pray that you find the help you need.
Tired
Okay, y’all, financial storytime. First, I’m fortunate.
Working part time I didn’t make much money. Then I had to stop working, and got a co-signed loan to stay afloat while waiting for my SSDI claim to go through. Two years after period of disability began, it did. I tried renting to students while I stayed with family; financially that worked somewhat, but I couldn’t keep up with the work involved in renting my house, or just sharing with a roommate. I cashed out my 25K retirement, paid off part of loan. Applied for property tax reduction, with $ refunded for previous 2yrs, paid off credit cards and balance on another old loan. I got help from the Urban League to apply for mortgage loan modification; I hadn’t missed a payment 'cause I’d been borrowing to make my payments. I just signed papers on the mod, stretching out the pay-off date from Oct 2018 to Oct 2054. Haven’t amortized this, but by the time I’m 97 I will have paid many more thousands in interest, but now I have a chance to stay in my home if I can make the much smaller monthly mortgage payments. Good credit and a low balance on the loan saved me.
My income of approx $800 mo. puts me above the Medicaid threshold but below that for QMB, Qualified Medical Beneficiary, so I get help with my Medicare premiums and prescriptions.
I’m scared to do my budget again, but this miracle is gonna work because my Dad co-signed on an equity loan when I was most impaired, that I’m just about to pay off a small balance on.
The real miracle is that I managed to figure this out myself. My sisters became so angry over my money issues that they couldn’t learn the information they would have needed to help me. My friends were hands-off, too. The past few years have been enormously stressful, but I finally feel safer.
I got advice from an elder law attorney when I got stuck and needed more info. That cost me $325 but I got the answer without the drama of involving my family. My elderly Dad saved me by co-signing the initial loan; he couldn’t think it through, it was a leap of faith. I’ve deleted all the thanking God from the rest of this post, but I’ve done it every second I was writing. I was so scared.
Wow! Carol you did an amazing job handling all of that!!!
Ranger
Carol said:
Okay, y'all, financial storytime. First, I'm fortunate.
Working part time I didn't make much money. Then I had to stop working, and got a co-signed loan to stay afloat while waiting for my SSDI claim to go through. Two years after period of disability began, it did. I tried renting to students while I stayed with family; financially that worked somewhat, but I couldn't keep up with the work involved in renting my house, or just sharing with a roommate. I cashed out my 25K retirement, paid off part of loan. Applied for property tax reduction, with $ refunded for previous 2yrs, paid off credit cards and balance on another old loan. I got help from the Urban League to apply for mortgage loan modification; I hadn't missed a payment 'cause I'd been borrowing to make my payments. I just signed papers on the mod, stretching out the pay-off date from Oct 2018 to Oct 2054. Haven't amortized this, but by the time I'm 97 I will have paid many more thousands in interest, but now I have a chance to stay in my home if I can make the much smaller monthly mortgage payments. Good credit and a low balance on the loan saved me.
My income of approx $800 mo. puts me above the Medicaid threshold but below that for QMB, Qualified Medical Beneficiary, so I get help with my Medicare premiums and prescriptions.
I'm scared to do my budget again, but this miracle is gonna work because my Dad co-signed on an equity loan when I was most impaired, that I'm just about to pay off a small balance on.
The real miracle is that I managed to figure this out myself. My sisters became so angry over my money issues that they couldn't learn the information they would have needed to help me. My friends were hands-off, too. The past few years have been enormously stressful, but I finally feel safer.
I got advice from an elder law attorney when I got stuck and needed more info. That cost me $325 but I got the answer without the drama of involving my family. My elderly Dad saved me by co-signing the initial loan; he couldn't think it through, it was a leap of faith. I've deleted all the thanking God from the rest of this post, but I've done it every second I was writing. I was so scared.