I want to start this post by saying that I have the utmost respect for nurses and doctors. They handle situations and stress that I could never be OK in. They are usually the people that you put your entire trust in. I also want to say that Shayne’s regular doctors are AMAZING. She is a very complicated case and they all work together to do what they can to help her. She can call her primary on her personal cell phone at any time of the day or night and she will do anything she can to help us to make decisions about any situation that is going on.
My issue is with doctors/nurses/EMTs who have NO IDEA about her history making snap judgments about her.
For example, in the last 3 weeks we’ve been in the ER 4 times. Once with a burst ovarian cyst, once as a follow up because of the pain of that cyst, and twice for dehydration and syncope.
Here are the comments we’ve had made:
- Nurse to a Doctor during a syncope episode: “She’s a frequent flier”
- Yes – she’s in here alot – but we go to the ER when there is an emergency. When you’ve had multiple blood clots and your INR last was 11.7, you go to the ER when you believe there to be an issue. We are NOT at the ER to get pain medication – we have a fucking pharmacy at our house already of unused pain medications and prescriptions.
- Nurse to Shayne during a syncope episode: “You need to open your eyes or I’m going to push Narcan to get rid of the narcotics in your body”
- He is prescribed vicodin for his CHRONIC pain – of which he MAY take 1 a DAY instead of taking them every 4-6 hours as PRESCRIBED. The sleepiness is NOT because she is OVERMEDICATED. Again, we are NOT at the ER looking for pain killers.
- EMT to other EMT on the way to the hospital in the ambulance: “I’m fairly certain that her behavior is self induced due to taking medications. Did you see the bag of medications she has?”
- Yes – there are a ton of medications – they are prescribed for the COMPLICATED MIX of medical issues that she has. She’s not someone who takes medications for the FUN of it!
- Doctor to Lori after the follow up appointment for the cyst pain “You have fluid in your abdomen, did you think that it would just MAGICALLY go away? It’s going to take days for this to be better.”
- Again, when you have had blood clots that almost killed you and you were in the ICU for 3 weeks (1 of which on a ventilator) and you have massive pain in your stomach knowing that you have a clot in your aorta that could throw at any moment, you COME TO THE ER!
- Nurse to me when we ended up there with the burst cyst and waited 2.5 hours for an ultrasound: “I understand your frustration, but we can only work with the resources we have. She is just going to have to wait” My response, “Can she at least get something for the pain?” Her answer, “I suppose if she can’t bear it”
- I TOLD them that it was a burst cyst. I TOLD them that the last time this happened we had emergency surgery to stop internal bleeding because she’s on Coumadin to thin her blood because of the blood clotting issue. I TOLD them that she could be bleeding internally.
Lori’s health history
- Prior to 2009: Diagnosis of Diabetes, SVT, CHF, Major Depression, BiPolar Disorder
- 2009: Shayne has chronic pain and fatigue – His white blood count is ridiculously high all the time. At the end of 2009 we finally get in touch with a Rheumatologist that diagnoses her with Lupus and Sjogren’s Syndrome and put her on a medication that should help with the inflammation along with high doses of steroids. It’s like a miracle! She can walk again without stooping and is able to wake up most mornings not in pain.
- April of 2010: We go to the ER for kidney pain. While in the ER her leg turns purple and she is in excruciating pain. An emergency ultrasound reveals that the blood flow to her leg is completely blocked by a clot. The surgeon comes out and tells me that the likelihood of her coming out of surgery with 1 or both legs removed is very high. There’s also a decent possibility that she doesn’t come out of surgery at all. Emergency embolectomy removes 4 clots from her right leg, 3 clots from her left. The subsequent hospital stay reveals that there was a blood clot in her kidney that actually blew a hole in it. She’s in ICU for 3 weeks – one of which is on a ventilator that we almost couldn’t get her off of. During this time she has a pulmonary embolism as well. It is also revealed that there is a dissection in her descending aorta that has a blood clot attached. She is given blood thinners that will need to be monitored weekly to make sure her INR is within the correct parameters.
- Taken off the lupus medication as they believe it was the cause of the blood clots. In the meantime, the lupus pain has returned. Increased steriod dosage
- October 2010: Ended up back in the ER with pain. She has a burst ovarian cyst. Since her INR is very high, the cyst has caused internal bleeding. There’s emergency surgery to determine where the blood is coming from and to stop it. 2 days later we are back in the OR to stop bleeding again.
- January 2011: Back in the ER with what ended up being a blood clot in her lower legs. They put in a stint and dripped clot busting medicine on the clot instead of going in and doing surgery again. We are in the hospital for a week – clot busting medicine is a success.
- March 2011: The pain and stress of the last year and a half finally gets to her and we end up on an M-1 hold and suicide watch and spend a week in the psychiatric ward of the hospital.
- May 2011 – August 2011: multiple random ER visits and pain. Long term disability from work has been approved and Social Security Disability as well.
So, the long and short of it is – if you don’t know her medical history, SHUT YOUR FUCKING MOUTH.
Don’t assume just because she is presenting like someone you’ve dealt with in the past that she is seeking pain medicine.
And DON’T MESS with a partner that has been dealing with this shit for this long – I have no problem putting you in your place or making a scene in the Emergency Room.
The return of the wordle: