My dear, I'm sure everyone of us here have been where are now. It took me 3 years to get on disability and only then when I hired a lawyer. I would highly suggest you do just that, get a lawyer that specializes in disability cases and I'm sure you won't have any trouble getting it. You should also get back disability starting from when your doctors said you could no longer work. I did and that helped soooo much. The lawyer's fee was taken from the back pay so it never really cost me anything to do it. Most won't charge you if you don't get it so it's worth a try.
I've been on disability now since '92, I too had neck trouble and ended up with 3 cervical fusions before I got any relief. I would find as much material as you can find on Lupus and Fibromyalgia and have every member of your family read it. When I was diagnosed with Fibro in 92 there wasn't much known about it, in fact it was hard to find a doctor who even believed in it, much less know how to treat it. I bought a book about it and gave it to my doctor. When he moved away and I had to start over again, I got really lucky and found a doctor that actually studied it to a large degree so he knew what I going through and didn't hesitate to treat my pain. I wasn't diagnosed with Lupus until recently but believe I've had it a lot longer. This week has been bad as it's been really hot and humid and I've tried to do too much. I've been so weak and full of pain that all I want to do is stay in bed all day. As soon as I get up and try to do much of anything my legs feel like rubber and the pain shoots down them and in my knees. I've had both knees worked, one with a total replacement a year ago and it still swells and give me times a lots of pain.
Like I said, we know only too well what you are going through. What helps me the most is my church family. Our pastor is so great and will listen to you. I don't know if you attend church but if you don't, I would recommend you find one. I go to the Presbyterian Church and you couldn't find a more loving and caring bunch of people. No judgements, just concern. I will be praying for you hon and hope your family will learn to understand what you are going through.
Oh that would be so fun to learn to paint... if my neck would allow!
First please know you are not alone. My extended family has been very cruel. Oh the stories I could tell. I became ill right after the birth of our third son. That was 24 plus years ago so I can tell you it gets better. Lupus is a part of your life now but please don't let it control you. There will be rough days feeling sick but it is time to find your passion. Since there are no support groups around I have a much better idea. Find an art group, a craft group or something fun you can do for yourself. Check craft stores, churches and local art groups for weekly classes. It will be the best thing you could ever do for yourself. Support groups you talk about being sick. But when you find a creative outlet you can actually think about something fun to do. I have found a lot of people in the classes suffer from other illnesses as well so we all have a wonderful connection. I am loving life now and although it sounds weird lupus has been a blessing of sorts. I would not have started painting if it had not been for lupus. I am now a professional artist after four years of serious painting. If you don't find a local class send me a message and I will teach you by emails. Actually that would be a lot of fun for us both.
As harsh as it sounds I no longer have aunts, sisters, etc. in my life who have been mean because I was sick. I don't need the negativity. We sold the house too and moved out of state trying to help me get better. No disability for me either. Find a good lawyer that does it on contingency and let him fight for you. It won't cost you anything unless he wins and then he will take it out of the profits. It is along process so don't count on it and just a lawyer handle it. There is so much good and exciting about life once you find that one fun thing you enjoy. I am here to help so please send me a message and I will be glad to teach you art by emails! Take care dear friend - I understand and I can guarantee it does get better and you can actually have a fun life despite being sick, Kathy
HaveI’m in the Same boat! I try to hide my sickness from everyone, even family they think I’m tired all the time. They know I have lupus. I haven’t been to the doctor in 3 years.I have been in a constant flare for a long time, I’ve gotten use to it
I just don’t know what to do
Oh Angela, you really should go see the doctor. Through the years I hardened myself to those who were not supportive, only negative. So I kept going to the doctor, and I just didn't even tell them I had one. I decided that I was the only one I had...but I have never been alone, God has been with me all along, I just didn't know it. Please go see a doctor again. We have to put that wall up against the negativity, in order to get through this. I will be praying for you!
HaveI'm in the Same boat! I try to hide my sickness from everyone, even family they think I'm tired all the time. They know I have lupus. I haven't been to the doctor in 3 years.I have been in a constant flare for a long time, I've gotten use to it
I just don't know what to do
Hello reallyraffy. Yes, I have been there and done that, except for the moving, though it has been talked about. Anyone with chronic illness has to deal with things healthy people can't understand. BUT we have to do whatever we can to help ourselves, and you posting is a great start. Everyone here cares, and will be as supportive as possible, and help you through the rough times, and laugh with you through the better ones.
I can relate to many of your health issues, plus I have a seizure/movement disorder. Hand tremors began about 6-8 months ago. I am not eligible for disability, but I would ncourage you to apply. With everything you are dealing with, holding down a full time job could be very hard and stressful. There are lots of benefits you can get once you et disability, but unfortunately most people get denied and then need a lawyer to help them with the process.
I feel bad being so late seeing this, but if there is any way I can help, please feel free to message me. Sending healing thoughts and positive energy out to you.
Having lupus has always been a significant challenge for me,denial has played a huge part of my lupus,I have bad coping skills,so it was easier to try pretend I didn’t it…lupus has really changed my life the last few years and it is not a change I welcome…lupus has taught me many things,I found out how strong I could be,and how strong I cannot be…it forced me to really look at my life and the kind of expections I have for myself,some days it’s so hard to live with pain and not make those around you aware that you are in pain…I’m not getting very good at hiding it anymore…but I refuse to stay bound to the fear that they can gi
Having lupus has always been a significant challenge for me,denial has played a huge part of my lupus,I have bad coping skills,so it was easier to try pretend I didn’t it…lupus has really changed my life the last few years and it is not a change I welcome…lupus has taught me many things,I found out how strong I could be,and how strong I cannot be…it forced me to really look at my life and the kind of expections I have for myself,some days it’s so hard to live with pain and not make those around you aware that you are in pain…I’m not getting very good at hiding it anymore…but I refuse to stay bound to the fear that lupus will rule my life,I don’t want it to define who I am as a person…
Sorry friends I was interrupted with a bunch of family drama while I was trying to be alone and rest and write my reply,and my grandson hit the button on my iPad sorry…it printed twice…once before I was done…again,I’m sorry…
I do know that although the Lupus Foundation knows of many groups, not everyone is close enough to find one. Remember, however that it need not be a Lupus group, it could be a chronic illness group, a depression group, etc.
However, if you cannot find a group, nearly every town/city has a mental health dept. Please see them. I have been in your shoes as I believe has everyone on this site at one time or another. Sometimes it is a by-product of the disease or even some of the meds.
Please don't do anything that can't be undone. We are here for you.