My biggest piece of advice is this: Be a strong and unwavering advocate for yourself! If you can't, enlist the help of someone who can. Nothing will be more important in battling IBC than making sure you know your options. Let me give you a scenario to show you what kind of effect this can have. In May 2003, I started to feel some pain at the top of my right breast. I had some scar tissue there from the removal of a mole years earlier, so started to search the Internet for problems arising with scar tissue. Believe it or not, there are instances when scar tissue will rupture and I assumed this to be the problem. In June it was worse and swelling quite a bit. Back to the Internet I went and this time went searching for specific breast problems. Most of what I came up with indicated mastitis, a breast infection commonly seen in women while breastfeeding. LOL I was 41 and hadn't breast fed for over 6 years! I kept searching and finally landed on a site for inflammatory breast cancer. Over and over the symptoms were exactly what I had, and in fact, one site said that most doctors initially misdiagnose IBC as mastitis! Now that I knew (and I DID know, in my heart) what was wrong, I set about trying to find a doctor who would see me for a positive diagnosis. Now the real nightmare begins....I had no insurance so I was passed around from clinic to clinic and no one could really give me any information. When I told them I had IBC, they were surprisingly unreactive, which I believe is because they had no idea what I was talking about. Long story short, I found out in August that there is a program in Colorado that will cover uninsured/underinsured women for breast exam and referral, if necessary. After a few hundered more phone calls and another month, I got a list of participating clinics - far and few between outside of the immediate Denver area. At that time, Planned Parenthood participated and there is an office 10 miles away so I called them right up and made an appointment for October. When the day finally arrived, I showed up early so I could explain why I was there and guess what? They didn't have my appointment logged and no one there that could see me (read as "no educated nurse/doctor/specialst in the house"). Deep down I was terrified to have an actual diagnosis - something that would make it real - so I politely rescheduled my appointment. I had to wait another month.
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