View Full Version : Confused and Angry

06-19-2009, 09:31 PM
Hi All i'm sorry that i haven't been around lately. A lot has happened in the past couple weeks. I am supposed to go to the doc on tuesday and i won't be able to go because I have lost my insurance because I lost my job. The reason I lost my job is because I wasn't able to go back to IL to go back to my job within the 5 days they gave me to get back. Also my doctor (who in my opinion is acting like she doesn't even care) thinks that i am completely fine and ready to go back to work and I don't feel like I am ready to go back.

Now on the other front I have one side of my family encourageing me to go back to work while on I have the other side of my family telling me that I need to go apply for SSI and that if I go back to work that I will die cause i will have a relaps and can't get my meds. I don't know what to do cause on one hand I am board beyond comprehension and it would be nice to get a new job and start over in a town that I would love. (Also I forgot to add that I have been approved for the Long Term Disability through my ex-employer and I won't loose it, but the kicker is I have to be under constant doctor care so that when they want updated medical records they have up to date info on me) Needless to say I am stuck between a rock and a hard place. Any and all advice is very needed right now so let me know.

06-20-2009, 01:07 AM

I feel your worry and concern. I have also been away for some time due to issues similar to yours. I am struggling with the Social Security Disability process and my insurance is $500 a month and we are at the point where we can not pay it anymore. We are loosing our home and the stress of all of this had made my Lupus worse. It has been a rough road. I am also stuck between a rock and a hard place but at least I am not alone.....you are with me!

I agree that you may want to look into filing for SSD. It is a long term resolution and be prepared for it to take a long time. You will receive denials but you can not give up, you have to keep at it. Things may be tough while you file but it may be the right path for you. Just research it and see if you think you qualify. I will keep you in my thoughts and if you need to talk more...just let it out! :spinny:

06-20-2009, 05:21 AM
jeesh maria,

so, you have long term disability, but they require dr. appointments, and you don't have the insurance so that you can go to the dr.....what a friggin mess. it is like the system deliberately puts you into a never-ending loop. Have you tried to contact the disability benefits administrator to see if they know of a solution? If you can figure a way to make this work, you will have some time to work through the dilemma of going to work or going onto social security.

i am so sorry you are experiencing this. i wish i had some answers....maybe someone who has gone through this will be along with some ideas.

the worst thing is that when we are in so much pain, it makes it especially difficult for us to fight for ourselves.

i know you are confused by your family's different opinions, but it is great that they all care so much about you. Only you know how you feel, and what you think your limitations are. They see this from the outside, and don't really know what you are feeling on the inside.

06-20-2009, 06:40 AM
Hi Maria,

I was approved for full Social Security Disability Benefits in 2004, and have been receiving monthly disability payments for five years now. I used to run my own business, and I hated to give that up, but I honestly believe the stress would have killed me. I have constant flares, and they are hard to deal with, but the flares I had back when I was working were absolutely horrible. My health and quality of life has drastically improved since I stopped working. I also moved to a new town, and started my life over. It's the best decision I've ever made.

There are no stipulations with Social Security Disability in regards to being "under constant care" of a doctor. There was a time during the move that I was not seeing any Dr/Rheumo, but it had no effect on my payments. Right now, I am "between" rheumo's, so my regular Dr. takes care of prescribing my meds, mainly my plaquenil, and I see a opthomologist to monitor my eyes. So, while I'm searching for a decent rheumo, my regualr doc is helping me manage my Lupus.

I live in Maine, and have "Mainecare", basically all my dr. visits and most of my meds are 100% paid for. It's a state run program. Could you possibly check to see if the state you live in has a similar program? If you went on full social security disability, you could use some of the money to see a dr/rheumo and pay for meds. If your state has no program to pay 100% of your medical bills, they may have some sort of assistance program that could help you pay for at least some of the bills. Something like that plus disability payments could be enough for you to get by on.

Never forget, Lupus is a very real, very serious, legitimate disease, and those of us who have it are indeed "disabled". I know some of us hate that word, like it's a label, but I view the whole disability concept simply as a fact of my life that I have to deal with, and live with. I had guilt about not working and getting disability pay plus assistance from the state, but the cold hard fact is that I am very sick, I am unemployable, and disability benefits are there to help people like me.

Look into getting Social Security disability, check to see if there are assistance programs where you live. If you apply for disability, they will send you to one of their own doctors to verify your lupus diagnosis, and that is totally free. Your health and quality of life hae to take priority over everything else, because without that, none o the other things in life will matter. I have been where you are, and I can tell you that there are answers and solutions to your problems.


Angel Oliver
06-20-2009, 07:14 AM

My heart goes out to you,just so unfair.But keep fighting.In the end you will be sorted,im sure and so hope so. Such a stressful time for you.And Danica,wow you too are going through so much...so sorry to read this and so hope you n Maria get all the help you so desperately need and soon.
Im thinking of you both.

lots of love

06-20-2009, 11:27 PM
First of all thank all of you for the kind loving words. Again I'm sorry I have been distant. I am on LTD through my ex-employer with a company called UNUM. Their rules state that I have to be under doctor's care so that when they want updated medical records they will be able to continue to approve me for benifits. My mother-in-law and I will start really weighing out what is the best solution for me working or disability. Since I lost my insurance I have developed a urineary tract infection that I have been trying to treat with AZO and Cranberry capsles and it seems to be starting to work but I did find out that the local Healt department is just like a regular doctor's office so on july 1st I will be able to see a doc on a sliding scale so that was at least one good thing and I will find out if my UTI is gone or what and I will also talk to them and find out about if they can treat my condition. The newest rhumy said to me that I don't have the critera for SLE and I don't have a Rhumatoid factor so it can't be RA. They basically are waiting for me to have another episode where my body puts me back in the hospital or something really goes wrong so that they can test and test i guess. I feel like I am being called a hypocondriact and that nothing is wrong but I am weak and tired and my hands and feet always hurt and nothing seems to work. I am now off the prednisone and I am supposed to still be on the methxotrate, but I can't afford any of my meds and I am out of my methxotrate. For 9 days straight I was in the bathroom getting sick 4-7 times a day and I haven't had a appatite since i stopped the prednisone over 3 weeks ago. I eat about .25 meals a day and my husband is upset cause I only cook one time a day if he's lucky. Today I once again got sick and I hope that it doesn't continue other wise i guess I have another symptom to add to the list. Danica01 I am soooo sorry to hear that you are looisng your home. I know how it feels to be evicted, that is one of the reasons my husband and I moved down here. My inlaws had an empty house that they are letting us live in thank GOD for that and when we first moved here we exchanged our car for a truck that died a month after we got it and again thank GOD for my in laws we also have a car to use. If it wasn't for them we would be out on the street hungry and lost. I will keep you in my prayers.

06-21-2009, 06:21 AM
Hi Maria,

I went back and read some of your first posts here, and I see that a Rheumo did indeed diagnose you with SLE. This new Rheumo now says that you don't meet the criteria for an SLE diagnosis? You cannot just be "un-diagnosed". You were diagnosed with SLE and you either have an active disease, or you are in remission, but you will always have Lupus.

I will never understand how these so called "health care professionals" can do this to people. You are sick, you need help, you should not have to wait for ANY medical help or meds. You ARE NOT a hypochondriac. I see people with Lupus being treated like they are just making it all up, told they have SLE, told they don't have SLE, told this, told that...

I hope you can find the solutions to these problems now, not later. I share your confusion and anger. You will be in my thoughts. I wish there was something more I could do to help you.


06-21-2009, 10:03 AM
hi maria,

i remember when you and your husband packed all of your belongings and moved to tennessee. You worked so hard, and i am glad to hear that you are settled, and that you have your in-laws to help you get back on your feet. Sounds like your mother-in-law is taking an active role in helping you with your illness.

Just because the second rheumy questions your lupus, does not mean he/she is correct. Remember, meds and active flares can cause variance in lab results, and also, different labs get different results.

don't let anyone make you question yourself....you know you.