- CASE FILE
From being OK at the age of 14 to having over 300 painful tumors 30 years later has destroyed my life. And they're still growing.
ABOUT THIS CASE FILE
Starting at the age of 14 in 1990, small hard lumps began appearing on my lower arms. They ranged in size from grapes to plums. Several were removed in 1992, was told that they were "just fatty tumors" and that most people have them. I kept telling doctors that they hurt and the doctors said "No they don't." After graduating high school in 1995, I began seeking other doctors who would help me. By that time, the growths began appearing on my upper arms, right and left flank, chest, abdomen and back.
In 1995, severe headaches started and the pain was so intense that I couldn't even cry. When I described the pain, I was told that it may be migraines and a MRI was done and no growths appeared on the scans. Between 1995 and 2008, hundreds of more growths grew all over my body and were causing so much pain that I couldn't hold a job because there were days I couldn't get out of bed and was fired from all but 1 job due to missing work. I sought help in Austin, Dallas, Houston, San Antonio, Baton Rouge, New Orleans and LA. Every doctor said the same thing, "There is nothing wrong with you and you're a drug addict going from doctor to doctor to get pain medications."
In 2005 I was finally approved for disability and had to figure out how to live on $650 a month because I couldn't work. In 2008 I went to stay with a family friend in Southern California. The doctor I had there said that the growths don't cause pain and that I'm going from doctor to doctor to get pain medications and that I was now in California trying to get medical marijuana and he wouldn't perscribe it and called me a liar when I told him that everytime I tried marijuana I become violently ill, vomited and eventually pass out. One day he asked me a very personal question and then said something so humiliating that I still have trouble repeating it. He then stopped prescribing 30 of the lowest strength vicodin he had originally given me and told me to find another doctor to "...trick into giving me pain meds." By that point not only was I in pain 24/7, I was also depressed and attempted suicide for the 5th time this time with a bottle of 50 OTC sleeping pills.
One year during Cover the Uninsured Week in the early 2000's in Austin, I was asked to give TV, newspaper and radio interviews, gave a speech on the steps of the Austin Capitol steps and appeared on a Town Hall Panal that was filmed for Austin local access TV. After listening to about a dozen doctors, health-care and insurance "experts" talk about the percentage of people without insurance, the number of people in Texas without insurance and how much it would cost to cover people without insurance who have to go to emergency rooms, and the financial strain it is having on the economy, I finally spoke and stood up in order to see the faces of those on the panel while I spoke and I went from anger to tears within a few minutes.
I said that I couldn't understand why I was asked to be on this panel because I was the only person on it who didn't have a phd or other title attached to my name and that so far all I've heard nothing but numbers, statics and how many billions of dollars it would take to give affordable health-care to people in Texas. I told them that I'm not just a number or a statistic, that I'm an actual person with a name who wants to know why I couldn't get the healthcare I needed and who is it who gets to decide who is worth health-care. Who gets to decide who gets to live and die? By that time I'd been diagnosed with with over a dozen different conditions with one doctor telling me that I should make funeral arrangements. Not one of the people on the panel could even look me in the eye by the time I was finished speaking and into the seating area for those watching the I remember looking at the seat my mom was sitting in where and saw her crying.
After several moments of total silence, one person finally spoke up and she said, "I think we've all forgotten the human aspect behind what were talking about and instead of focusing on how to help people in this situation, we're focusing on the financial strain that people without insurance are causing by having to get their general health care through emergency room visits. We need to focus on fixing the way health-care works in the US and not how much it costs to keep people healthy."
In 2005 I was finally approved for disability and had to figure out how to live on $650 a month because I couldn't work. In 2008 I went to stay with a family friend in Southern California. The doctor I had there said that the growths don't cause pain and that I'm going from doctor to doctor to get pain medications and that I was now in California trying to get medical marijuana and he wouldn't perscribe it. He called me a liar when I told him that everytime I tried marijuana I become violently ill, vomited and eventually pass out. One day he asked me a very personal question and then said something so humiliating that I still have trouble repeating it. He then stopped prescribing 30 of the lowest strength vicodin he had originally given me and told me to find another doctor to "...trick into giving me pain meds." By that point not only was I in pain 24/7, I was also depressed and attempted suicide for the 5th time this time with a bottle of 50 OTC sleeping
One day while doing research by typing in my symptoms into search engines, I come across a website of a doctor working at UCSD Medical Center and every symptom I had was right there on her webpage. So in November of 2008 I made an appointment to see the doctor and took a train from LA to San Diego. After about an hour of questions and an examination, I was diagnosed with Adiposis Dolorosa, cluster headaches, migraines and showed early symptoms of Fibromyalgia. I was so relieved to finally have a diagnosis that I was crying not just because there was finally a name to what I have, but also because the condition is progressive and the pain will increase over time. A job was out of the question due to the pain getting so bad that I rarely sleep more than 2 or 3 hours at a time and at times I've gone 3 days with no sleep.
When I moved back to Texas, I moved in with my mother who is a retired high school teacher and has fibromyalgia among other conditions. Due to what very little I get in SSDI, I can't afford to live on my own. I get $10,956 a year and don't qualify for food stamps.
The tumors have continued to grow and are getting larger and larger. My doctor can testify that some of the growths have grown in as little time as a couple weeks. Some are now as large as an orange and are pressing on my spine and ribs. There is now nerve damage to my right leg and there are times I have shooting pain that feels like thousands of needles are sticking me in the leg and other times that my knee buckles and I have no sensation at all in my leg.
Due to the recent abuse of medications by people who don't need them, 1 medication, a fentynal patch, was cut in half within the first 3 months of 2019. My surgeon since 2009 retired last year and we've been unable to find another doctor to remove the really painful growths.
So now I find myself taking half of the pain medication I was 8 months ago and not having a surgeon to remove the more painful ones. It's like I'm regressing to before I had been diagnosed over 10 years ago.
There are times I pray that I'll go to sleep and not wake up and times that I've been close to trying to cut out some of the most painful growths. There are treatment options overseas that research shows help people with this condition and some have a couple weeks to a month of lessened pain with some being free of pain for almost a month. But here in the US, the FDA won't approve the treatments.
I'm embarrassed by my condition and don't like being touched. I haven't been in a physical relationship since 2003. And now my medications are being taken away and treatments denied because "My condition doesn't warrent certain treatments and medications."
If my medications continue to be cut off and with the pain increasing everyday, I don't want to continue life this way.
I'm not living. I'm just existing and I'm tired of it all.