Lupus and Chronic Illness: Being Your Own Advocate

This is a guest post by Ivy Shapiro.

From November 2000 – June 2005 I was in out of the hospital more times than I can count for “catastrophic asthma”, syncope, slow gastric motility, and unexplained autoimmune issues.

Finally, in 2005 I found both a rheumatologist and pulmonologist who gave me medications to take at home during flares of symptoms (high dose prednisone, nausea medications, antispasmodics for the stomach, and muscle relaxants). They both told me to avoid hospitals unless it was absolutely necessary.

The only thing I was given in the hospital was high dose IV steroids, which ended up making me sicker, and bags of fluids, which did not help my autonomic symptoms at all; in fact, they made some of them worse.

This worked for quite a while, and I was able to avoid going “in-patient” for years. My neurologist suggested a medication as a “last resort” to treat my syncope, or fainting issues. It caused such a severe reaction that despite trying for three days to use the medications I had at home, I ended up in the hospital on March 9, 2013.

I figured that since all my specialists were there, I would receive the best care possible.

I was wrong in so many ways.

The ER physician promptly heard my strider, throat spasms, and treated that first (which was understandable). I was treated with a breathing treatment and high dose solu-medrol – although he did listen when I asked for IV medication with NO preservatives – since I am allergic to the inactive ingredients in the regular medications.

Since I was unable to speak, my Mom spoke for me, becoming my advocate, and described what happened the days before…the fainting, muscle spasms that looked like I was having a seizure (which were all new symptoms) and raising my prednisone up to 60 mg on my own, which did not help consistently.

The ER doctor promptly called in the neurology resident consults and the pulmonary resident consults, and the hospitalist admitted me right away (due to insurance reasons, specialists cannot admit a Medicare or Medicaid patient).

During this process, not one resident laid hands on my neck or back, despite me or my mom telling them all that I was having such horrible pain in my neck and back. I could barely turn my head and that the pain was incredibly severe. I kept whispering and using sign language to tell everyone I could that my pain level was higher then their pain scale.

The resident hospitalists disagreed with the pulmonary doctors about how to lower my Prednisone, and did not read any of my notes from my regular physicians that I have been seeing for eight years, which describe how delicate my health has become…including the fact that I have lived on 15 mg of prednisone for years.

The first person to lay hands on my neck was a nurse because I kept complaining that the spasms were getting so severe that I could not turn my head or walk without my legs shaking when I stood up to even use the restroom. The nurse promptly called in the hospitalist resident, who, after two days of me languishing in pain, finally laid hands on my neck and followed the spasm down to my lower back.

He saw the muscles on my right side popped out, where my left side was pliable; my right side was tight and knotted up.

Because the hospitals do not list inactive ingredients on any of their medications, and because they only carry generics, the resident and I sat with my tablet on rxlist.com and went over each medication that might be right for me to release the spasms. He acknowledged that the spasms were half of my problem, at that point, and the reason I kept needing high dose IV solu-medrol every 6 hours.

The hope was that if the spasms that went from my lower back and wrapped around my throat released, we could finally lower the solu-medrol, which would allow me to go home – the ultimate goal.

We agreed on using IV valium to release the neuromuscular spasms. He authorized only one low dose and wanted to see how I reacted. The one dose seemed to help, but by morning, the spasms were back. The hospitalist in charge of my care agreed to give me IV valium every 6 hours, at a low dose, in the hopes of breaking the spasm.

The medications seemed to be working well, and I was feeling much better.

In the middle of night, all of the valium orders were deleted from my files. I could not get either IV valium or oral. Not one nurse could get a hold of the resident on call, so I went three and a half hours with no antispasmodic.

I was told in the morning that the hospital ran out of the IV medication, and should have been given oral, but that did not happen. When I was given the oral medication in the morning, it did not work at all.

Finally, hours later, when the spasm cycle started again, the hospital “found” one more dose of IV valium for me, which was only after my Mom went to the patient advocate and told her all about what was going on and the treatment I was receiving by the multitude of specialists.

After all this, I was still sent home in the same pain cycle I came in with – the only problem they “fixed” was my breathing. They sent me home on oral prednisone, but a taper that my pulmonologist was horrified to learn about when I had a follow up visit a few days later.

Due to my neuromuscular spasms still being so severe on oral medications, my rheumatologist and pharmacist came up with giving me liquid diazepam, which worked so much better then the pills. Thankfully, my pulmonologist and rheumatologist work together and decided to try me on one last “hope” immunosuppressant – Neural. This medication is not normally used to treat lupus, but is being used more and more for “outside the box” cases, like mine.

The lowest dose of prednisone I am allowed to lower to without an immunosuppressant medication is 20 mg -a very high dose for a 32 year old woman. I wasn’t even formally diagnosed with SLE until I was 30 years old, because I was treated for ten years with breathing issues, then gastroparesis, and autonomic dysfunction. I was told it was more about “quality of life” then anything else.

I am waiting for my “quality of life” to come back after this hospitalization.

This is the first hospitalization where they knew the problems, and were unwilling to fully treat the issues. If my Mom and I did not advocate for me on several occasions, I would not have made it out of the hospital.

Here are some patient advocacy tips that can help, should the need arise:

• Ask to see a specialist when you are in the Emergency Room, if you feel you need to see one.
• Always ask what medications you are being given by the nurse. You have a right to know what you are taking.
• If you have questions, ask them…if the doctor or nurse is not in the room, write the question down so you do not forget when you see them again.
• If you are not satisfied with the care you are receiving from the doctors or nurses, ask to speak to the patient advocate (if relating to a doctor) or nurse manager (if your issue is with the nurse)…every hospital has one.
• If you are still not satisfied with your level of care, ask to speak to a social worker…someone will make sure your issues are resolved before you leave.
• Most importantly…if you cannot speak for yourself, have someone you trust there with you to do the aforementioned things for you.