Has anyone been disabled by Lyme that had to quit their job? How did you pay for meds?

I am having difficulty taking care of my children in my bad days.  I do strange things.  Yesterday I could not remember how to boil eggs for a potato salad I was trying to make...  Husband is the only one that works.  I am worried the time will come that I will be disabled and not being able to care for them at all.  THey are 6, 5, and 9 months.  Also, I am worried that my insurance will not cover most of the treatement--they usually cover a couple of months of abx.  How in the world am I supposed to hire someone to babysit and how am I supposed to pay for my medication with only one person working???  How did those of you that have had treatement for several years survive this?

I don't even think I can qualify for disability, no matter how disable I may be (IF I get worse).  I haven't worked in 6 years--since my oldest child was born.  Any help is greatly appreciated, as I am trying to get ready for the worse (and keeping my fingers crossed that the worse --not being able to pay for medical bills and not being able to watch my children--will never come).  My credit is perfect.  I am afraid this journey will ruin it.  Will I be able to get some sort of disability if I didn't work in 6 years?  I briefly talked to someone at my LLMD's office and I am adding the expenses and it seems they will be about what my husband makes, before we eat or pay for the mortgage.  We just bought the house 5 years ago, and if we sell it, we'd probably sell it at a loss.   House prices dropped.

Thanks!

Take a long, deep breath Simela. It's entirely possible all the things you're stressing about may not even happen. At least your husband is employed. Think of the positives not the what ifs. Am I correct in thinking that your first appt with your LLMD is in September? Wait until you actually see the doctor before you start adding up expenses, and yes, I know it can be costly. Get a definite diagnosis before you completely freak out.

I've been in treatment for quite awhile now - and somehow I manage. I have to - there's no other choice. I rest on the weekend. I moved in May and things are still in boxes - doesn't bother me a bit. I've had chronic Lyme, babesia, and the other "b" ailment for years before treatment. I've been the primary care giver for a husband with cancer, and then for my mom who was in her eighties - you get by. Pray, meditate or whatever gets you through the night - but above all else, stay positive. Your credit rating is probably the least of your problems.

Feel better,

Victoria

Whew, PattiB, your post made me grateful. At age 60 we were supposed to have it a little bit easier...or so I thought. It isn't working that way for me either. Please note I did not mention divorce as a first line of action...and I did recommend learning state laws....they're all different. The focus must be the children and what their mother has to do to remain well enough to care for them.

Caldonia Sun, fear is the one thing that dragged me down so much this past year. When we were losing our business I lived in fear...of everything....and my body felt every second of it. It still isn't over and I have times of extreme panic (that's usually when I'm sickest on the abx and feeling hopeless) but I know it can't last forever and I do have this forum...what a lifesaver. Simela...USE US!! We understand.

vicparis, I agree that you have to know your enemy before you can make plans. Learned that with cancer & chemo. Herxing makes things seem ten times worse..... May we all survive this....

I really feel for you - your post just made me shake my head, as I've said SO many days during the last three years, "What would I do if I had kids? I wouldn't be able to take care of them..."

I think the most important thing for you to do right away is apply for SSDI - even if you get rejected initially, it's important to have the application in as soon as possible. Most social security attorneys only get paid if you win your case, and if you end up eventually being approved, you'll get back-payments from whatever date you applied. When I first applied, I contacted an attorney - I had no idea what was wrong with me at that time. He told me there was no way I'd get approved - I had three things against me: my age (I was 27), my education (I was in my last semester of getting my B.S. in pre-law), and a lack of a diagnosis. Despite all of this, I got approved, no questions asked. The only thing they requested was that I meet with one of their appointed psychologists. I made it to the appointment, and thought for sure his first observation would be that I miraculously drove myself there; however, the entire time I was there, I was in tears, could barely sit in the chair, and was highly anxious about my drive home, and he could see that (he was human, too!).

It's also hard for a lot of people to ask for help. I don't know what state you're in, but I was fortunate to live in a state (maybe the only one?) that offers health care to everyone, regardless of whether you work or not. I had Medicaid for a while, then went onto another state health program when my income was too high for Medicaid. There are also Medicaid home health programs for people on disability where they'll send someone into your home to help you once a week - this really helped me for a while when I was at my worst. The woman would come and do my laundry, clean my bathroom, even cook for me if I needed... Contact your state offices (welfare office or disability agency) to find out what you might be eligible for...you might be surprised. If you are approved for disability, there's a two year-long wait to be eligible for Medicare...

I know someone mentioned getting divorced, which is obviously a controversial piece of advice. This disease is amazing in its capability to make us play games with life... Yes, you need to do whatever you need to do to survive, first and foremost, but when do you allow it to come between you and your morals and those things you value most? What's most important - your home and having food on the table, or your marriage? Do the benefits of your legal marriage outweigh the unity in your hearts that will always be there whether it is recognized by the state or not? These are things you should think about so that if the time comes, you'll be able to make these decisions.

Reach out to your family and friends - make specific lists of things you need help with so that people know what to do to help... A lot of people ask me what they can do to help, but often I'm so overwhelmed that I just say, "I don't know." I found it helpful to make a list, "Laundry, make casseroles to freeze for meals, get groceries, etc." so I could quickly refer to it when I needed to...

Communicate with your physician(s) and let them know you're really struggling financial and absolutely need them to give you the most affordable treatments and medications (generic if possible). Talk to them about your concerns (financial, parenting, etc.) and see if they can give you any advice on what others do...maybe there are even volunteers who could help you with the kids once in a while...

I do hope you feel better and things fall into place for you...stress sucks!!!

Rachel

I understand how hard it is too. I have a 2 year old and most days I am ok, but I still have some days where I just don't have it in me. I am thankful to have help from my family who leaves close by so I can get a break too (we all need one sometimes).

You should absolutely apply for ss benefits. I got approved at age 23. I was bedridden at the time and very sick, but it helped pay for a brand new car I just bought 3 months earlier (before I went downhill fast). I do not work now either. I haven't worked in about 5 years now and am thankful to be a stay at home mother. I am not married but do live with my fiance and although I lost some benefits after buying a house together and after my daughter was born, I still do get ss benefits. I am not on medication but still am dealing with some relapses of this illness.

It is always worth a try in my book. Why not. Depending on how much your husband makes, the fact that you have 3 kids you might also qualify for other benefits like food stamps. Every state has income limits to how much you can qualify for. Go online and see what your state's income limits are for a family of 5. If you are in the 60% you may qualify for some benefits.

Time are very tough. I started getting sick again when my daugther was about 10 months. I am better again now, but it was scary to think I was going to end up unable to care for her. I have faith that you won't go backwards either, but as I do, you may have days where it is a lot to handle and the stress only makes us feel worse. A lot of it has to do with your hormones still changing from having a baby too so know that.

Good luck.

Hi, I got lyme and co-infections in 95 and went undigonosed till 97. I applied for ss disabilty in 2000 and got a ss disability lawyer and got it. I have been on it since 2000, you also get back pay from the time you start your application process.

It sounds like this may help you Prayers to you GOD BLESS

I have two things: one, is that my parents are wonderful amazing parents and are paying for all my treatment because my fiance and I can't. The other thing is maybe you could try raising money. Some people, even in this economy it seems, have money to burn, and will give that extra dough to charities and people in need for the tax write off. Before I got sick I was involved in a lot of mission work out of the country through my church and college, and we always wrote letters to everyone we knew to try and raise the money we needed. There are caring people out there who will be willing to help you in your situation, and others who would love to donate to someone they know AND get the taxes written off.

I've also considered calling Oprah... :/

Thanks so much for all your replies, a lot of great info. If my insurance will pay for treatement, I should be ok. THe problem is, I know they don't like to pay and I have found a lot of articles where patients were abandoned by their med. insurance, including my own med. insurance company, so I know that for a fact. We are paying thousands of $$ already out of pocket for insurance and copays, on top of what my husband's employer is paying them, but when it comes to Lyme, the ins. companies do not want to pay! I hope the guidelines will change soon. THis is just not right for any of us! 

I also hope and pray I won't get worse and be able to watch my children.  I am a very independent person and I hope I will be well enough not to need help.  In all honesty, I don't want anyone else to watch them, but me.  But I do have to finally face reality (I was in denial for 2 years, until Lyme got worse and worse and worse, I was in denial even when I started posting here, some of you may remember that--I really wanted to believe my first PCP that 3 weeks of abx was enough).   So, no, I am not over reacting or freaking out, as someone put it here, but on contrary, I am waking up to a reality I did not want to face, because denial was what brought me piece of mind and comfort.  It is however getting worse, A LOT of new symptoms, a lot of pain + neurological issues, brain fog--I hate this the most! and pretty much I now have ALL symptoms EXCEPT 5 from the long list from the "new to lyme--start here" thread.

In the event I will get worse, as many people do get worse before getting better, I have to have a backup plan.  I can't afford to cross my arms and do nothing, right now.  My husband has to work.  He works a lot.  If he has a project to finish he sometimes works 7 days a week, long hours, too, no overtime compensation.  Today I had felt I was going to collapse several times.  I can't wait until I won't be in good enough of a shape to make a phone call or take care of my children or make the right decisions, in general.  If I didn't have children, it would be a different story.  Those of you who have 3 very young children know this.  THose that don't, well, I have been there, and I know what some think.  I can tell you that my last few days with 3 children including a baby were almost unbearable, as I feel so badly and so overwelmed, I just want to run away to escape from my own body.  When I am with one child or even 2, it's a breeze.  The baby takes a lot of my time.  I never imagined I would get so sick--if I would have, I wouldn't have had any children.  I wish I could aford child care right now, because I feel I am not really there for them.  My son is having a hard time, he started to cry a lot lately and he does not understand I am sick, he keeps saying I don't love him because I can no longer take him to the park or play with him.  Yesterday he said he will ran away, he is old enough and tall enough to unlack the doors and gate.  He did ran, but he came back and he was sitting by himself on the porch.   It really worries me!  Also, earlier this week, he and his sister ran in the street, and all the way around the block.  By the time I got to them (I had to get the baby, put her in the stroller and walk to get to them, the soles of my feet were sore, and my legs were hurting, so I could barely walk), they made it all around the block and I met them on a street that was perpendicular to ours.  My daughter was walking on the street, yes, where the cars are, facing the cars!

For those of you that mentioned family: I have my mom and my sister.  My father passed away.  THey help when they can, but my sister is a full time student and works and my mom works full time. I leave in PA and they are in NY. I wish they were closer! Right now it is just not possible for them to move.

By the way, my sister is a nursing student. She learned about Lyme at school. THere were 2 rows about it in her text book. Nothing about chronic lyme or about co-infections! Go figure! Who is writing these books??? Perhaps the same people that are writing the guidelines for treating Lyme? What a shame!

My mom battled with Hep C a last year and she just finished therapy this year;  she is still trying to recover from it...  Her insurance paid for most of it, but she went through all her savings.  She was a nurse in a different country--she was not born here, and they did not use gloves for anything, so many docs and nurses got Hep C that way.  She also had a blood transfusion when she gave birth to my sister, and they were not testing the blood for anything.  She will probably never know for sure how and when she got infected.  But anyway, she is doing much better now, health wise, but she still needs her med insurance, so she has to work.  Sometimes she becomes very anemic and has had some heart issues, kidney problems and God knows what else, she is good of hiding her conditions, but  she has to go and have her blood checked regularly.  Thank God she is much better now, when she comes here for a couple of days it is such a big break for me!

Again, thanks for your help and  I will check the links out.  It is not me that I am worried about, it is the children.  If someone could watch them at least once in a while or for a few hours a day, I would still be ok, in my misery...  I am hoping it is a herx, as some of you suggested, and that it will go away.  Hope is what keeps me going...

TODAY I COULD NOT REMEMBER THE ITSY BITSY SPIDER SONG, ALTHOUGH I MUST HAVE SANG IT HUNDREDS OF TIMES, I KEPT GETTING IT WRONG!  MY CHILDREN KEPT LOOKING AT ME IN DISBELIEF...

YESTERDAY I SAID TO MY HUSBAND 10+8=16...  I HAVE A GRADUATE DEGREE IN STATISTICS...  MY 6 YEAR OLD CORRECTED ME!  I INSISTED 10+8=16, AND HE SAID TO ME, "YOU ARE WRONG, MOM"! 

Thanks for listening...

Post Edited (Simela) : 8/28/2010 1:03:54 AM (GMT-6)

Trav:
I haven't been grocery shopping in about 2 years. I haven't done much of everything for almost 2 years. While I was treating for lyme early last year, I got pregnant with my baby, and within 2 mo, I was in a car accident that messed up my back and my legs. That was hard on me, as it was. My son really had problems with this starting last year. He is probably thinking, when is mom going to get better already? I was not able to walk for several months and then in Physical Therapy for another several months. I don't know if you read one of my posts, but because of my pain for my injuries, I was given 2 steroid shots. Soon enough, my lyme symptoms came back, they become stronger, and new ones crippled in as well. I didn't have any memory problems before, only pain and numbness and ONLY once in a while, not every day, and the days with pain were mostly without pain. So I haven't been well enough to pick anything up at the supermarket or at home--even picking up a glass of water hurts my back!

Oh, I was pregnant and crossing the street at the green light, and this man did not see me, he was making a turn and ran into me! It is a miracle I am still alive! So, while all this happened, I was scanned from head to tow, while pregnant and "dealing" with lyme, although I did not know at the time I was not cured. I believe the steroids made it worse than the first time, although I realize now it never went away, the 3 weeks of abx must have killed a lot of bugs to make me feel better for a while.

So, believe me, I am "Pacing"--I have been "pacing" for almost 2 years. I still haven't got my case straightened out for the car accident--I am in the process of doing this, So I burned a lot of money for my treatement bec. in PA, the car insurance company does not pay you, until you are done with doctors. I am more worried that my children may get hurt if I get worse!

BUT as you know, I have had a couple of good days, I went shopping today--I love shopping for the kids--son is starting school tomorow and I had to pick up a few things.