I debated whether I should write this or not. Decided on doing it because if even one person benefits from any of this, that will be a good thing. The next question concerns how much I’ll be able to tell. I’ll be as transparent as I can be but I will say that I know for a fact that not everyone who reads this is a”friend” of mine and some people will delight in my woes. Not being paranoid. It’s just a fact. So with that in mind, read on.
First off, after a car accident in January of 2002, I was unable to go back to work because doing so would require me to be on fairly strong pain meds. I was teaching sixth grade and pain meds are a big no-no when people are entrusting their minor children to you. So no work meant no medical insurance. I haven’t been able to work since. I have had no medical insurance since 2002. I’m also diabetic, having been diagnosed in 1999. When I lost my job I moved from southern California to northern California. That was my salvation for diabetes care because I was able to find a clinic that did nothing but diabetes clinical drug studies. I hooked up with them and I was set with free medicine and free testing supplies. When one study ended, they would find me another. Super! Then in 2008 my financial situation changed and I could no longer afford California rents. I moved to Portland, Oregon. Near enough for my kids to come see me.
When I arrived in Oregon, I also had some kind of “lump” in my side. No chronic pain from it, only occasional pain. It looked like normal middle age spare tire weight but was not otherwise a problem. My daughter loved Portland and moved here, too. She encouraged me to go to DHS to apply for medical assistance, she even drove me there and went in with me. I hate asking anyone for anything. I did ask and was told that as long as I was over 18 and not pregnant, there was no public health care assistance for adults. No application. No medical care.
I have had diabetes long enough to know what to avoid so I tried to control my disease through diet. That worked pretty well for a long time. Then about four years ago the lump in my side began to grow. And grow. And shift positions. About 18 months ago, my abdomen took on the shape of a small pregnant belly. In the past six months my belly had grown to what appears the size of a full nine month pregnancy. The bulge pushes on everything and is heavy and I always feel bloated. I am uncomfortable 24/7. When we were all supposed to sign up for Obama Care, Oregon choose their own program, not the Federal program. That also became a problem because the computer software for the application process never…NEVER…became functional, leaving millions of Oregonians out of reach of insurance. Including me.
Then two weeks ago I began to have severe pain, which I associated with a previous gall bladder attack. Because of not having insurance, I did not seek medical attention. I waited. I got better. Then I got worse. A lot worse. My pee turned a dark brown. My face turned orange. And by last Wednesday night, my poop turned green. By Thursday morning I was short of breath, extremely weak, and disoriented. But I knew enough to tell my daughter that I wanted her to take me to a clinic. It was long past time. At the clinic the doctor said that my issues were so severe and so multiple, that she could not morally or ethically treat me. She sent me straight to the hospital ER and called ahead to itemize what her concerns were and what she felt should be tested and pursued. (This step is important because when a patient walks in to the ER, they take care of the most obvious and send the patient home. When a medical professional tells them their concerns and the minimal course to be followed, there’s a record of it and the hospital is legally required to follow up on all of it.)
At Oregon Health Science University (OHSU), the ER did blood work then immediately pronounced that I had chronic liver disease and they were admitting me. I don’t have a history of any risk factors for chronic liver disease but I let them admit me because I have to get better. Between getting me to my room from the ER, we made a stop at ultra sound. Once I was in my room, a different doctor from the acute care unit came in and said he does not think the liver is the culprit. His best guess was that it was pancreatitis and gall bladder, both easy to treat. However there is fluid in the abdomen and it is obstructing the view and they couldn’t see the gall bladder. They scheduled a CT scan to get a better look.
After the CT scan a surgeon from OB/GYN came to see me. She said they were seeing a clear fluid filled cyst attached to my ovary. However, I told her I had a complete hysterectomy twenty years ago. Upon more questions and physical exam, they determined that the hysterectomy doctor removed only my uterus but entered the wrong information in my file. Now I have this humongous cyst growing attached to a host that shouldn’t be there.
If the cyst were free of sections, there would be no worry of a malignancy. My cyst has two small sections which could indicate a malignancy. So the current plan is to send me home as soon as they can find the right treatment to control my diabetes which is not responding to the insulin. Then in two weeks I return for a removal of the cyst and while they do a quick read biopsy, the doctor will remove the ovaries and tubes that should have been removed twenty years ago. If the quick read comes back as definitely malignant, they have work to do which isn’t being discussed right now. If we get a “not definitely malignant” they stitch me up and I recuperate in the hospital for three days. Then I go home and hold my breath for the final pathology report in as long as three weeks. Then I will either get the all clear call or the other call.
Lessons? Lots. Don’t wait until it’s too late. When the door is shut in your face, knock on a different one. When you have needs and concerns, take care of them, even if there are others that need you (that’s the toughest for me). When you need help, seek it. When you think you know what’s going on with your body, remember that others have knowledge about your body that you may not have. But most of all…forgive yourself. It’s not all your fault. Yes, you bear the blame for some of it but by no means all of it. It’s time to be good to yourself and enjoy what you have and pray you will have it for many more years. Forgive yourself.
Read Full Post »