View Full Version : New Member In Kentucky (Lupus w/ kidney & brain involvem
08-24-2006, 11:06 AM
Hi, I just registered today. I have Lupus with some kidney involvement, anemia, & 2 out of 3 of my physicians have said Lupus Cerebritis too.
Even with positive antibody tests, I'm sure many of you know how difficult and frustrating the diagnostic process can be.
I've taken Plaquenil, Prednisone, & Cellcept in the past.
While my husband and children have been extremely supportive, they don't really understand, & for 3 years I've felt very alone in many respects. Never more than right now, as my symtoms are changing.
After only a few minutes here, it was clear that this forum is a place to both give & receive support. I'm glad to be a member!
08-24-2006, 12:50 PM
AND WELCOME. I'm from Western Kentucky, just outside Owensboro. My nephew (also named Chris) attend Northern Kentucky University. I've spent some time in your part of the state. Are you anywhere close to Ohio? If so, the Cleveland Clinic has some great rheumies.
Your lupus pattern sound very similar to mine - I was originally diagnosed with CNS lupus and vasculitis; the kidney involvement came later. I also have an autoimmune form of anemia which requires frequent blood transfusions. For about a week or so after a transfusion I feel great - tons of energy - unfortuntely it never lasts.
I'm on prednisone and IV cytoxan, plus several other assorted meds to treat the various side effects of the steroids and chemo, plus anti-seizure meds, pain meds, you know the drill. I tried plaquenil, imuran, cellcept, ivig, and methotrexate before finally agreeing to cytoxan. Although I was dreading it, it actually doesn't make me as sick as the plaquenil did. Plus it improved my kidney function enough I didn't need dialysis -
I know what you mean about the fatigue - lupus fatigue is bad enough without the bone-deep tired of anemia on top of it. It's hard for any one who hasn't lived through it to imagine being too tired to even brush your hair. It's like the worst case of flu you've ever had, except it never goes away.
The people at the forum here are wonderful - always helpful and supportive. And if I can answer any questions or you just need to vent, please feel free to e-mail me directly - firstname.lastname@example.org - I think at this point I've been through most of the treatments for CNS lupus, so maybe I can help you get through them.
08-24-2006, 05:07 PM
Just wanted to say hi and welcome you to this site. I know you will find many answers here, support and yes even friends. Remember you are not alone in this illness as most of us here travel the same road. I know that dosen't make your own personal emotional/physicial pain any less but it does really help to feel understood and not so alone.
You take care of yourself and I look forward to reading your posts and getting to know you better.
08-24-2006, 05:40 PM
Welcome new friend, I will follow suit with everyone else who has responded to you; that you have found a wonderful place to find caring, supportive, and not to mention UNDERSTANDING friends (smile).
I have SLE, lupus cerebritis, CNS lupus, lupus nephritis, pericardial lupus...geez, maybe I better stop before I scare someone (smile).
As others have mentioned, I take Cellcept, anti-seizure meds, antimalarials, yada yada yada.....to bad none of them make you feel like the 4th of July (just kidding).
God bless the people here; I know I would have taken that long walk on a short pier (if you know what I mean?) if it weren't for the incredibly caring people on this connection. You have come to a wonderful welcoming environment.
So stay plugged in, we're all in this together.....you're not heavy...you're our lupie (smile)....as we all are. In good days and bad; you will always find an open heart, a willing friend...and you will always be welcom here!
08-26-2006, 04:24 PM
oops! posted response twice, please see response below.
08-26-2006, 04:36 PM
Thank you! Your responses have reduced me to tears-- of joy (smile). I can't tell you what a difference it makes just feeling welcomed;
thanks also for the additional information-- all of which is very much appreciated!
It's amazing to me that this disease can cause such a variety of symptoms. For example, I don't experience the joint pain many are afflicted with, only tendonitis.
Part of the new symptoms I'm experiencing, includes difficulty in expressing thoughts in written form. It takes a very long time to write just a paragraph or two, so my response time in general will probably be very slow.
Thanks again, I look forward to reading, learning & posting in the forum!
08-26-2006, 05:00 PM
I highly recommend THE LUPUS BOOK by Dr. Daniel Wallace. It's very readable and informative.
As a pre-med. did you work any with medline, PubMed or other omline medical databases? PubMed is available on the internet, although it mainly provides abstracts rather than full-text articles. If you find an article you are interested in, most universities have copying services, or you can always request copies from the National Libraries of Medicine.
Medscape is also a great online source for full-text articles and research. It's free on the web - you just have to register. The websites offered by the Lupus Foundation of America, the National Institutes of Health, and the American College of Rheumatology are also good sources of information. If your local hospital has a medical library, I'd suggest making friends with the librarian - they can be a great help in finding information.
I spent quite a few years handling medical malpractice cases, so I'm pretty good at medical research. If I can help you locate anything, just holler. We Kentucky girls have to help each other!
08-26-2006, 05:13 PM
Thank you. I've been reading, reading, reading, but always feel like some stone has been left unturned. Apparently it has, as the book you've recommended, as well as the librarian suggestion have been overlooked.
What is your favorite book regarding coping skills (especially job related)?
08-26-2006, 07:52 PM
I really like the Invisible Disabilities Advocate website at WWw.myida.org or wWw.invisibledisabilities.org - they have some great articles you can print out for friends and family members to read.
Also www.restministries.org - this is a Christian website for people with chronic illnesses. There are articles, links, and a chatroom.
All the books listed below are good - some better than others. The medical textbooks are obviously very technical. Some of these may be in your local library - the rest you should be able to get through interlibrary loan services, which almost all public libraries do. I'm sure there are a ton of books out there - these are just the ones I'm
A Delicate Balance: Living Successfully with Chronic Illness
by Susan Milstrey Wells
The Lupus Book: A Guide for Patients and Their Families - revised edition 2005
by Daniel J. Wallace
Taking Charge of Lupus: How to Manage the Disease and Make the Most of Your Life
by Maureen Pratt, David Hallegua, Daniel J. Wallace
The First Year - Lupus: An Essential Guide for the Newly Diagnosed
by Nancy C. Hanger, Elena Massarotti
New Hope for People with Lupus: Your Friendly, Authoritative Guide to the Latest in Traditional and Complementary Solutions
by Sara J. Henry, Theresa Foy Digeronimo
Living with Lupus: The Complete Guide, Second Edition
by Sheldon Paul Blau, Dodi Schultz
Lupus : Everything You Need to Know
by Robert G. Lahita, Robert H. Phillips
Positive Options for Living with Lupus : Self-Help and Treatment
by Robert H. Phillips, Robert G. Lahita, Barbara Bush
Talking About Lupus: What to Do and How to Cope
by Triona Holden
Lupus - A Medical Dictionary, Bibliography, and Annotated Research
LUPUS: Guide to Internet References
by Icon Health Publications
The Language of Water
by Jude Clarke (autobiography written by lupus patient)
You Don't Look Sick: Living Well With Invisible Chronic Illness
by Joy H. Selak, Steven S. Overman
Coping With Lupus: A Practical Guide to Alleviating the Challenges of Systematic Lupus Erythematosus
by Robert H. Phillips
Coping With Prednisone: (*and Other Cortisone-Related Medicines) : It May Work Miracles, but How Do You Handle the Side Effects
by Eugenia Zukerman (Introduction), Julie R. Ingelfinger
Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness
by Paul J. Donoghue, Mary Elizabeth Siegel
Lupus Handbook for Women : Up-To-Date Information on Understanding and Managing the Disease Which Affects 1 in 500 Women
by Robin Dibner, M.D., and Carol Colman
Coping With Lupus : A Guide to Living With Lupus for You and Your Family
by Robert H. Phillips
Systemic Lupus Erythematosus
by Robert Lahita (medical textbook - noT geared toward patients)
Dubois' Lupus Erythematosus
by Daniel J. Wallace (Editor), Bevra Hannahs Hahn (Editor), FranciS Quismorio (the original medical textbook on lupus)
A Dictionary for Lupus Patients
Linda K. Rohner (Editor)
Chronically Happy: Joyful Living In Spite Of Chronic Illness
by Lori Hartwell
The Art of Getting Well: Maximizing Health and Well-being When You Have a Chronic Illness (Paperback)
by David Spero, Martin L., M.D. Rossman
Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web
edited by P. F. Anderson and Nancy J. Allee
(HOW TO FIND RELIABLE MEDICAL INFORMATION ON THE INTERNET)