View Full Version : New member
09-24-2006, 02:49 PM
My name is Margo, I was diagnosied with LUPUS (SLE) 20 years ago and was told I would be dead in 5 years, so never give up! I've been on Cellcept for 2 1/2 years and many other medications. Things are getting crazy and I feel like I'm loosing control of my life all over again. I don't know any one else with Lupus, so I'm trying to reach out for support.
09-24-2006, 03:14 PM
Wow. I've only been dealing with this for six years and I feel like it's been forever. You must be a very strong lady. There are several people on the forum who have been diagnosed for many years - I am sure you will receive a warm welcome from all of them. And everyone is here to listen and help all we can.
09-24-2006, 03:20 PM
Thank you for the post! It's nice to know I'm not alone...I'm afraid I'm having a bout with depression.
09-24-2006, 03:50 PM
Is there a local support group anywhere near you? This forum is great but it's also nice to know other people in your area with lupus so there's someone to turn to when you physically need a shoulder to cry on, as all of us do sometimes. I hope you start to feel better soon - the feeling that your life is spinning out of control is scary and frustrating.
09-24-2006, 07:45 PM
Getting involved with a local support group is a very helpful thing! Also, you should talk to your doctor about the depression. It is very common w/ Lupus and you should know you don't have to suffer through it. Paxil has been amazing for me and maybe that or something else could work for you!
09-24-2006, 10:36 PM
Welcome, new friend! I absolutely understand how you are feeling right now; I was diagnosed in 2000 and managed to work up until last year when within a few months time I had suffered a mild heart attack, kidney failure and stroke....and shortly after that I was placed on long term disability by my employer.
It feels like your no longer in the driver seat of the car; but a passenger and the car's going a hundred miles an hour downhill;;;;;;and you wish you could just slam on the brakes; just to catch your breath - gather your thoughts and gain control !!!!!! Yep, there's a few of us here that have taken that ride - and it is frightening indeed.
You've made a wonderful choice by plugging in here; you will find the folks here are absolutely the best, they are caring and encouraging, they will also be walking the same road you're on; some of us have had experiences that we can help you throught; and others who are so encouraging - you feel like you just got that enormous hug you've been hoping for all day.
So stick around, we're all here to help one another. Hold on, and let hope be your compass - you've found a safe harbor of friends here !!
As others have mentioned, make sure to talk to your doctor - I have SLE and CNS lupus and have been maintained on an anti-depressant that works for me. Everyone is different; and everyone responds differently on anti-depressants. For me, I have finally come to realize - that I will need to stay on it long term; and I'm okay with that. It's much better to feel like you are back in control and not feeling like you're worried all the time and feeling out of control These medicines can indeed save your life; and save you're sense of well being.
I wish you the best; please stay connected - it is so very important. I truly believe that we were not meant to live our lives in isolation. Reach out and let those who have been down this road before, be your wings.
We're all in this together....and together we can do so much.
09-25-2006, 05:33 AM
There is no support groups in my area, Ohio is the nearest and I live east of Flint Michigan. My doctors tell me I'm maxed out on all the meds and the lupus seems to be hitting my brain again. I'm looking at the clinical trial for stem cell (non-embronic) but would have to live in Chicago for 2-4 months. I' single and poor but can't qualify for Social Security. I'm trying to figure out where to go from here. Thank you for the feed back.
09-25-2006, 06:34 AM
Margo, I think the Michigan/Indiana Lupus Alliance may have a chapter near the Flint area - even if they don't have a formal support group, they should be able to put you in touch with other lupus patients in your area. You can go to their website for more information - www.milupus.org -
or call them at 800-705-6677
Even if you don't qualify for Social Security Disability, you may still be eligible for other medical and prescription assistance programs, especially if your medical expenses take up a big portion of your income. Your doctor should be able to refer you to drug assistance programs for which you qualify.
Supplemental Security Income (SSI) is a federally funded program for low income adults who are aged, disabled, or blind. To find out if you qualify for this program, you should contact your local Social Security Administration in person or by telephone. If you receive SSI, you are automatically eligible for Medicaid and the comprehensive package of health care benefits including, vision, dental, and mental health services. There are income and assets guidelines for this program, but unlike Social Security Disability, you don't have to have worked a set amount or paid into the Social Security system.
You should also contact the local office of the Michigan Department of Human Services to find out if you are eligible for any state assistance programs - many states offer services in addition to disability programs and you may qualify for other kinds of assistance.
I hope you are able to find some help and answers soon.
09-25-2006, 03:04 PM
THANK YOU! I've spoke to a woman here in my area, they don't have regular meetings but I'm on the list!!! I was looking under Lupus.org and didn't know about the other sites.
09-25-2006, 03:24 PM
I also live in Mi. on the west side "Ludington"
I had a difficult time also finding Dr. but I have and
can refer you to a couple Dr. I go to in Muskegon and GrandRapids and Traverse City.
feel free to e-mail me
09-25-2006, 03:35 PM
My Doctor (since 1997) sent me to U of M, but now I'm taking the max on the meds. Who do you see?
Thank you for your help.
09-25-2006, 06:11 PM
I go to "Muskegon Rheumatology" My Dr is;
ROBERT G. HYLLAND MD. 231-722-2036
He is WONDERFUL !!!!! very involved, kind, (LISTENS to his patients) and REALLY knows all the issues of lupus. He is one of these very rare Dr. who actually take the time to HEAR you. He also has top Dr. refferences when the lups effects different organs and no issue referring you, like some egotistical Dr's do. Most his connections are in Grand Rapids, not THAT super far to go for a GOOD Dr.
It took me 4 years to find him here in Mi. I actually had to go back to my hometown; Columbus, Ohio to get the proper dx.
He also teaches at the University of Mi two days a week.
His specialty is autoimmune disorders.
I know he takes new patients because just last month I referred him to my neighbor and she had no problem getting an appointment with him.
keep me posted, if I can help, I would be glad too :) :) :)