By Teresa Brewer, Guest Columnist
In 2003, I developed a rare illness called retroperitoneal fibrosis, also known as Ormond’s disease. Many have died from this progressive and painful disease when their abdominal organs became blocked by a fibrous mass.
I have a fibrous mass in my right abdominal area that extends into my back and right leg. The mass was about the size of a soccer ball when it was found during a cat scan and exploratory surgery. The mass is smaller now, but I still have severe chronic pain. And because of the opioid crisis, I was weaned off pain medication in March.
My doctor sent my medical records and referral letters to 17 pain doctors. So far, none have accepted me. Many pain doctors are so busy they're not taking new patients, and many don’t know anything about retroperitoneal fibrosis or won’t take the time to learn about it.
I've been told, "I don't know about your illness and therefore I can't help you!” It’s devastating to hear that.
I do have an appointment at a pain clinic in September to talk with a nurse, get a physical and go over my records. Maybe then I’ll get an appointment to see a doctor. I HOPE! But then who knows, that could be another month or two. The lady who called said they have been overrun with new patients and were trying to see all they can. But they have a 3-month backlog.
Because I was taken off pain medication, I missed my daughter’s wedding. That really upset and depressed me. She lives in another state and I was looking forward to seeing her get married. She called to tell me she was engaged, and we talked many times over the phone about the wedding. She set up appointments to get my hair and makeup done and even bought me two dresses.
It totally devastated me to call her in April to tell her I wouldn't be able to make it. We both cried, and I cried almost every day until her wedding day. My son used FaceTime so I could at least watch the wedding, but it was not the same as being there in person. I was heartbroken.
I also can't see my grandchildren until something is done about the pain. I have a grandson and recently have a new granddaughter, who was born in July. I haven’t seen her yet and haven’t seen my grandson since March. I love my grandson and granddaughter with all my heart! I have no life.
Doctors are taking many patients, including cancer patients, off pain medication because they fear losing their medical licenses. And some hospitals aren't giving pain medication to surgery patients. Instead they’re getting Tylenol or Aleve. That is not right! If anyone has surgery, and I've had six surgeries, you need something stronger for pain management.
Why let people suffer? Many individuals who have abused pain medication are switching to heroin, meth or cocaine. A real drug addict will always find something to take. I've always hated taking medication, even for a headache, but when I became ill, I had no choice.
It seems they are more worried about addicts dying than about people who really need pain medication. I'm not talking just about me. Many people who live with retroperitioneal fibrosis have been taken off pain medication and are suffering.
An individual has no life when they are at home in major pain. It's very hard to get ready to go anywhere or do anything. Many of us are bedridden due to chronic pain.
Is anything being done about this problem? If so, I'd like to hear it!
Teresa Brewer lives in Arkansas.
Pain News Network invites other readers to share their stories with us. Send them to firstname.lastname@example.org.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.