Tired of being a financial burden

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SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 6/3/2010 8:03 PM (GMT -7)   
So, I feel like any post I make lately has been just a huge vent and I'm normally a very upbeat and positive person and I feel like I sound like such a Debbie Downer lately.  But, nevertheless, I need to let it out somewhere, and I just don't know who to call.
 
This whole calling insurance companies/doctors/drug companies/"the state" situation is just taking a toll on me.  As of right now, through Healthy NY I pay 300 dollars a month.  Well, actually I don't pay it because I can't afford it; my father sends me a check every month.  So apparently NY has a new Under 30 law where I could possibly go onto my dad's insurance therefore enabling me to take Humira since the 3000 dollar pharmacy cap with Healthy NY prohibits this (I'm still trying to work things out with Medicare and Humira as well, but the paperwork hasn't come yet..guess more phone calls will be made tomorrow!). 
 
It would be great if I could go on my dad's since it's also Oxford so all the approvals will transfer over (once I do the appeal of course) ...but he says he thinks it will probably over 500 a month so I would have to (or my mom and stepdad) pay the difference.
 
I'm just really, really, really tired of being such a financial burden on my parents.  My mom and stepdad pay for so much stuff, especially even more with all my medical bills, copays (hello 500 dollar hospital visit!) and they don't even make that much money themselves!  My dad can be frustrating sometimes as far as money goes but I can't complain because he pays 300 a month for my health insurance. 
 
I'm just at the point where I want to give up.  It's so exhausting "fighting the system" and this just overwhelming feeling of guilt is just making me feel like a horrible person.  It sucks that I can't pay for this stuff myself, it sucks that I went to grad school and got my masters and when I was done, the economy was bad and there were no jobs.  I just feel horrible that my parents pay for so much and I feel like such a financial burden and not to sound morbid but it's almost like they would be better off without me in their life at this point.  I hate sounding like such a debbie downer and complainer.  I almost just want to stop my meds (not that they're helping anyway!), stop all the doctor visits and just stop.  My mom is 59, my stepdad is 71 and I feel like they work so much and so hard and I just feel awful.
 
Ugh, I don't know.
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine and 5 mg of Prednisone, and levothyroxine (50).   5 day hospital stay April

Trying to get on Humira but having insurance issues.. :(


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 6/3/2010 8:57 PM (GMT -7)   
Well I guess I would say you should feel lucky to have parents that can help you out and are willing to. Imagine how bad they would feel if they couldn't afford the $300/ month? They obviously care alot about you and are willing to go through this with you. The best thing you can do for them is to stay positive and get through this period in your life. It will change. The economy will change and so will your health. You will get better. It just takes time. I know when I was on disability last year, I don't even want to say what I was thinking at the time, (especially on prednisone). I felt like such a loser and thinking back to that point in my life now, boy that was pointless! There's nothing you can do but try to stay optimistic. GOOD LUCK!
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
28 yr old female w/ crohn's colitis
 
 


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 6/3/2010 10:33 PM (GMT -7)   
Try not to feel too bad... It's better to have people already helping you out instead of having to actually seek out help yourself... *Good parents seem to be a luxury...*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 6/3/2010 10:36 PM (GMT -7)   
Sarah you have 2 parents who love and support you. Accept their gift with grace and a smile. Sarah so smilely suits you much better!
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8581
   Posted 6/4/2010 6:43 AM (GMT -7)   
I can understand the feeling of being a financial burden... And it's not a nice one. But remember this: your parents would always - without exception - rather pay for your treatment and have you alive and around than not pay for your treatment and have you no longer alive and around.

If the despair continues, please talk to them about it and get their reassurance. I've got to go now but I hope by the time you get back to this post you are feeling better.

SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 6/4/2010 3:35 PM (GMT -7)   
It just doesn't make sense. When I talked to "the state" this guy claimed that this new Under 30 law was for people like me, people who are in their late 20s, focused on school, and because of the economy can't find a job. So awesome, hope. But how does it benefit me when it would cost 600 dollars a month? (Okay, 581, but still...) ...I mean, if I can't find a decent job and make little money, how is this plan for me? How do they think I can afford 600 a month with no job (actually I have 4, but they all suck.) I just don't get it.
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine and 5 mg of Prednisone, and levothyroxine (50).   5 day hospital stay April

Trying to get on Humira but having insurance issues.. :(


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/4/2010 3:41 PM (GMT -7)   
(((Sara)))

It stinks, doesn't it, and does nothing for your self-esteem as you're trying to grow up and be more independent...

:-(
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 6/4/2010 8:24 PM (GMT -7)   
I'm in a kinda similar situation. I've been unemployed for the past year, and my dad is loaning me money. I despise having to ask for more, but he told me the other day "there's no price for your health". I felt much better about asking for an additional $400 to pay medical bills after hearing that.

There are a lot of people who don't have parents who can or will help in a time of need, and you just have to appreciate what you have. I know it kills your ego to rely on someone else, but it's for the benefit of your health, and in all reality, that has NO price!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14165
   Posted 6/5/2010 7:43 AM (GMT -7)   
I am sorry you're feeling so down. I feel the same way. I think it is completely normal to feel like a burden. My parents have never helped me or given me a penny but I do feel like I am somewhat reliant on my boyfriend and I have been on my parents in the past. I have always been borderline unable to get on my feet or make enough money to survive on my own without struggling. I think it is just our generation.

I am a few years older but I don't see things improving for the younger people, partly why I don't want to have children. Life is hard, it's a lot of work and struggling. Even if you're healthy, the majority of people aren't living how they want to and are racking up debt just to appear as if they are "haves" and not "have nots".

On the positive side, it sounds like you have great parents who want to help you. For me, the best thing was moving away from my family and starting over. I've managed to start a new life where I was able to square a job. NY is very expensive and competitive. For me, I don't see there being any opportunity there. I am too sick/exhausted to compete with healthy go-getters. I moved to the sun and I work less hours. It's much less stressful, plus, other states have different medical options that you may be able to pursue. Keep your eyes open and look for opportunities, go with your heart and don't get discouraged. I know how hard it is, the job market is nearly impossible to get a foot in the door. Even with a college education (that you're paying back @ $300/mo for the next 15 years) you can't find a job that pays over 40k a year. It's pathetic really.
March 07: Diagnosed with mild proctitis - Canasa as needed
August 08 - December 08: Flare & Anemic - Started Asacol
January 09 - December 09: Remission!!
December 09 - January 10: Massive Flare - Asacol + Prednisone + Canasa / Colazal
Current: Mild / Moderate Active Pancolitis: Prednisone, 6mp, Cort Enemas, Canasa



Love_Art_Baby
Regular Member


Date Joined Jun 2010
Total Posts : 59
   Posted 6/5/2010 9:46 AM (GMT -7)   
Sorry, I'm new, but I couldn't help to reply to this post. When I was on Humira, I got on the "Humira Protection Plan" They paid for EVERYTHING the first 9 months I think, and you have a $5 co=pay after that...this may really help you. When I found out my starter pack was over $900 I started crying, I called this number, and didn't have to pay anything. Obviously most people can't afford this, so that's why it's there I guess?
Humira Protection Plan
1.888.486.4723
8am-8pmEST M-F
they send you a cand you give to the pharmacy.
Hope this helps :)

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/5/2010 2:23 PM (GMT -7)   
That's a great tip, Love_Art. Thanks very much, and welcome!!
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 6/5/2010 7:47 PM (GMT -7)   
Thanks everyone, it really does feel good to vent to people who understand!

And thanks Love_Art, I will give them a call! I thought I was in the process of doing that already, but I guess I need to call them again because they were supposed to send me paperwork and it's been 2 weeks already! From what it sounded like to me, I had to first apply to medicare, get rejected, and then Humira would pay for it...did you have to go through that?

I think between all the stress from this, my crohns being out of remission, and of course the stupid steroids, i've been quite insane! (I scared my friend/coworker the other day because of how scary and mean I was...and people always know me as the happy/cheerful/giggly one so to see me all crazy and angry...haha)

I spent this whole week shutting myself inside my apartment, isolating myself from friends, and feeling sorry for myself. Today I ran some errands and went to the gym, and then ya know, showered and actually did my make up and got dressed and it actually does make me feel better, haha. I guess even though it's hard, I need to go back to being proactive...I'm currently working on a letter to send all my local congressmen.

As far as the burden, it's not about my ego or anything like that....I just know my mom and stepdad don't make a lot of money, and they already pay for so much for me, so now to add an extra 300 a month on top of everything...oi vey! My mom has been literally making herself sick because she works to much and it's a very physically demanding job and she's on her feet all day. I mean, all I really want to do is make a lot of money so that the two of them can retire. They work too much at their ages. Also...come to think of it, I pay around 300 dollars right now in student loan payments, so I can try to defer or something and stop paing it and put that money toward this instead!

Screw trying to find a career I can use my Masters in...I'm working on my novel, getting published, and becoming a famous writer, stat! haha :P ...Or maybe I just need to move out of expensive New York!
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine and 5 mg of Prednisone, and levothyroxine (50).   5 day hospital stay April

Trying to get on Humira but having insurance issues.. :(


Love_Art_Baby
Regular Member


Date Joined Jun 2010
Total Posts : 59
   Posted 6/6/2010 8:02 PM (GMT -7)   
no, they put me on with normal insurance that I had with my last job. You may want to call yourself, is your doctor office doing it or you. My Doctor did it for me and it was just sent to me, but maybe calling yourself may speed up the process if someone is dragging their feet?
23 y/o
Diagnosed in 2007
Misdiagnosed w/ Lactose Intolerance at 11 y/o
Misdiagnosed w/ IBS @ 16
3 hospital stays in the last 6 months
been on Asacol, Pentassa, Remicaide, Humira, Prednisone on and off (I think it's the devil) and lost more random things.
Right now 6MP,about to start Cimzia, just went off prednisone AGAIN, just stopped Humira
 
Married with a 3 y/o


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/7/2010 12:45 PM (GMT -7)   
sara so sorry to hear about all of your financial issues. It can be so difficult to be sick and not have the means to deal with it. You sound a lot like me, I will do and do and do for everyone else but I have a hard time accepting help. I feel like I am putting people out or being a burden. But as my Mom tells me if it were a burden I would not offer. You are doing the best you can to take care of this and in the meantime you have 2 obviously very wonderful parents who are willing to help you get through. One day you will be able to do for them as they have done for you. I am sending good thoughts your way
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 6/11/2010 11:46 AM (GMT -7)   
I talked with my stepdad earlier this week and he made me feel a lot better about the whole thing.  The Humira people are still working on stuff, they've been calling me every few days but I will also hopefully be going on the new insurance in a few weeks.
 
There's also the infamous (and expensive!) GIs at Mt Sinai that both my mom and dad want me to go to and have offered to pay for.  My dad knows someone who goes to a dr there so I guess he wants me to see him.  We'll see I guess.
 
And apparently my insurance didn't deny the Humira, for some reason someone was trying to get it approved for more started kits so that's what was denied, I think anyways. 
 
The only weird thing is that my GI's office called and told me to make an appointment with some other GI, who I guess has more experience with patients on Humira.  (A bit of a drive but oh well.)  But I feel like it doesn't matter til I'm on the new insurance anyways.  I feel a little...ditched! hah.  I tried calling that office but the doctor is out of town for awhile anyways. 
 
I'm happy that I might go ahead and get better insurance and I feel okay with my stepdad and mom paying the other half...but the pain now is just really, really bad.  I never take the painkillers since I don't have a lot of them so I sit around in pain all day.  It's really imbarable sometimes.  I discribe it to my friends as the scene from the Aliens movie where the alien rips out of the man's stomach...I imagine that's what I feel like...
 
I finally subbed the other day cause I haven't in a few weeks and it was horrible.  It scares me to think of my career choice...As a teacher, if I'm in pain, I have to suck it up and stay there.
 
Ugh, I think I need to be an advocate for myself and go back to my primary and demand painkillers and if not see more pain management specialists.  It's making me...angry!  It's my right as a human being to not be in pain.  Going back in remission would be great but until I get the Crohn's taking care of I should be able to take pills everyday and not worry...I just don't want them to be mean to me. 
 
 
 
25 year old female, diagnosed with Crohn's in 2002 after being misdiagnosed with Lyme Disease for a year.  Have been on Prednisone, Asacol, Entocort, and Remicade in the past.
 
Currently on 100 50 mg of Mercaptopurine and 5 mg of Prednisone, and levothyroxine (50).   5 day hospital stay April

Trying to get on Humira but having insurance issues.. :(


MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 6/12/2010 9:24 AM (GMT -7)   
Sara,

I have a 28 year old Daughter with IBD living in expensive New York with an expensive Mt. Sinai GI who is in more medical debt than I am probably aware of. I've helped and her Grandmother has helped try to keep her from financial ruin.

Parents want to help! Yep, it has been harder to help as the economy has taken a toll on our own paycheck and finances. My Hubby is now Social Security age, but can't retire.

I keep wishing my Daughter would move back to her home State of Michigan where I could be of better (and less expensive) help to her. She has lost her job once and health insurance once since moving to NYC about 4 years ago and that was a scary time. We paid her COBRA for a few months until she found a new job. I don't get how any young adult or single adult can afford to live there unless
they are making mega bucks. Everything is so much more expensive there including Health Care. I get how much she loves living there. It was only supposed to be a 2 year adventure that has now turned into 4 years.

She's had other health issues crop up besides IBD since moving to New York which absolutely exasperates me but she still keeps plugging along as best she can. It frustrates me to no end
that I can only help from long distance and can't be there sometimes when she really could use some in person TLC. Arghhhh!

I feel for you! I hope you can get to feeling better and in remission soon! I understand exactly what you are saying and are going through for I am a Parent of a Daughter in sort of the same boat as you!! {{{Hugs}}} to you!
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