So I thought I’d start my blog out by posting some links to explanations of each of my illnesses.  I plan to add these to the links on my sidebar as well, but wanted them accessible in my journal.

By the way, I do not know much html, and the site my sister sent me to that had all the things I would be using has been forgotten….. (new computer, so I don’t have my old bookmarks), so unfortunately until I come back and edit it, you’ll be stuck with long links on this entry.

Lupus, my newest (and one of the most dangerous) diagnosis, just diagnosed on Monday:

http://www.lupus.org/newsite/index.html is the lupus foundations main page.                      

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=71&zoneid=9s is an introduction to lupus, and to their “what is lupus” section of the site… more links are available on the left sidebar of this page, with all sorts of information about lupus.  They also have links at the end of each article to more information, some on their site, and some at other sources.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=310&zoneid=9 Types of lupus.  Some of the types listed also break down into other types of lupus, such as the discoid lupus, which, if I’m not mistaken has 3 or 4 subtypes.  I have SLE or Systemic lupus erythematosus.  I also may have one of the forms of discoid lupus.  My rash, called a butterfly rash, and some of the other issues I have seem to point towards me *possibly* having a form of discoid lupus, though I’m not sure on whether I do or not at this point.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=74&zoneid=9 A list of symptoms.  Mine are as follows:  Achy joints / arthralgia, Arthritis / swollen joints, Prolonged or extreme fatigue (also can be caused by my fibromyalgia and my endometriosis), Skin Rashes, Butterfly-shaped rash across the cheeks and nose, Sun or light sensitivity / photosensitivity (I’ve had this as long as I can remember), Raynaud’s phenomenon / fingers turning white and/or blue in the cold, Mouth or nose ulcers (my cold sores start out normally and turn into cracks or ulcer like things on the corners of my mouth, I also have sores that develop in my mouth that I was told fit into this), and an ANA blood test result of 462 when they did the test last week.  Normal on the ANA according to my doctor (I haven’t checked this myself yet) is between 0-99.  As I joked with E yesterday, I passed that test with flying colors!

Endometriosis (which I count as the other most dangerous, because of the treatments for it, and the fact it has the biggest chance of taking my dream of having children from me) is the diagnosis I’ve had the longest, as I was diagnosed in November 2005, after dealing with it since my period started, around January 1999.  Some great places to get information about it are:

http://www.endometriosisassn.org/ the EA or Endometriosis Association

http://www.endometriosisassn.org/endo.html an explanation of what endo is from the EA

http://www.endocenter.org/ the ERC or Endometriosis Research Center                                                    There are also a few books I have read that I recommend are anything by the EA, Endometriosis for Dummies, and Living Well with Endometriosis: What your doctor doesn’t tell you…  … That you need to know.  Dr. Redwine, one of the top doctors in the world from what I understand, has a new book coming out… today I believe, though I’m not sure of the name to include it here, and obviously I have never read it.

Interstitial Cystitis (IC), which was diagnosed during my second laparoscopy (surgery for my endometriosis) in January 2007.  I have non-ulcerative IC. Some places for IC information include:

http://www.ic-network.com/ the Interstitial Cystitis Network homepage.

http://www.ic-network.com/whatisinterstitialcystitis/ An introduction to what IC is

http://www.ichelp.org/ The Interstitial Cystitis Association homepage

http://www.ichelp.org/WhatisIC/AboutIC/tabid/416/Default.aspx The ICA’s explanation of IC.

Fibromyalgia, which I have a diagnosis of from 12/2006.  Some links for fibro include:

http://www.fibrocenter.com/content/home.jsp The homepage for the Fibro Center.

http://www.fibrocenter.com/content/about.jsp Information about fibromyalgia from the Fibro Center. 

http://www.fmaware.org/site/PageServer The National Fibromyalgia Association homepage.

http://www.fmaware.org/site/PageServer?pagename=fibromyalgia The NFA’s fibro info page

Vaginismus, which was diagnosed 12/2006. Some links are:

http://www.vaginismus.com/ A website dedicated to vaginismus

http://www.vaginismus.com/faqs Frequently asked questions about vaginismus, including what is vaginismus.

Vulvar Vestibulitis, which was diagnosed 12/2006  Some links:

http://www.nva.org/ The National Vulvodynia Association Homepage

http://www.nva.org/about_vulvodynia/what_is_vulvodynia.html An explanation of Vulvodynia and Vulvar Vestibulitis

Advertisements