Angele Lynn Groth – Editor’s note: I am a patient advocate and also have a sleep disorder. Many times, I only sleep a few hours and am back up by 2:00 a.m. One particular night I was on Facebook, on the group page that I was working with helping chronic pain patients navigate through what I believe is a total mess when it comes to pain control for chronic pain patients. I noticed that Angele had posted a comment “I can’t take this anymore”. We started talking via facebook chat. We got to know each other a little bit. She explained her situation and the excruciating pain she was experiencing. At that point, she didn’t think her husband or children realized what kind of pain she was in and felt that terminating her life was the only light at the end of the tunnel that she could see at that time. At that point, she had no diagnosis.
After much discussion, we agreed to stay in touch and Angele knows that we care about her and that we ARE going to get things changed so that adequate pain control can be prescribed for situations like this. Medical professionals may say “if you’ve contemplated suicide, you should not be allowed pain pills.” But what if the thoughts of suicide are solely due to pain? Wouldn’t it make more sense to improve the pain and therefore treating the mental component of the patient? Angele is a fighter. She’s smart. She’ll make it through this. She knows the support she has from people who care so much about her. Sometimes that’s what people need. You certainly can’t get that from governmental agencies or anyone in the medical profession. That’s the state of the world we’re living in at this time due to the CDC guidelines and resultant stigma and “unofficial laws” that the doctors seem to be following. Angele lives in Chesterfield Township, Michigan. Here is Angele’s story:
In 2008 I was diagnosed with fibromyalgia. At that time, I was going to school. I finished school in 2009 and started working at St. John’s Hospital as a MA. Before that, I was employed with Mecosta County Medical Center and I worked in their ER. I was also on Morley Fire Department as a firefighter and EMT, so I was in top physical condition at that time.
While I was employed with St. John’s, I started getting sicker and was diagnosed with Lupus. When they found the Lupus, I started being treated by a rheumatologist, my PCP and OMT. At that point, I was getting pain medication which allowed me to function despite the pain. I was also having back problems which were diagnosed as Lupus myelitis.
Thereafter, I was involved in an accident when I was a shopper in a store and some shelves collapsed on me causing all of my lumbar discs to be herniated, torn or misplaced. So from L2 down, everything is bad. I have a C5 spinal decompression in my neck from it. These are all non-operative. That’s when I was sent to pain management. No one wanted to help me. All my pain medicine was cut and they prescribed Lyrica, Cymbalta, Neurontin and Ultram. These were prescribed by pain management, psychologist and rheumatologist. They refused to give me any opiates because they said it was unnecessary due to the other prescriptions. The prescriptions didn’t help.
Next, we began doing injections. I was very optimistic as I was looking for any relief I could find. I even got a medical marijuana card. I had 4 injections in my back and 2 in my neck. They worked for 2 weeks and stopped. Afterwards, they said let’s try a Rhizotomy (*a Rhizotomy is a surgical procedure to sever nerve roots in the spinal cord) in my neck and both sides of lower back. I kept telling them that the pain in my hips was bad. I begged for 2 years for someone to x-ray and look at my hips. They keep telling me it’s all your back. This is how you’re going to feel the rest of your life. They kept ignoring me.
Rhizotomy in my neck worked and the left side of my back worked. The right side has not worked. I won’t let them do any more injections in my back. After the Rhizotomies, I said this isn’t working. Something is wrong with my hips. I got blown off again.
My psychiatrist said she couldn’t help with the pain because I’m suicidal because of the pain. She said “passively suicidal” and they can’t do anything to help the pain. When I told her I’m done seeing you because you can’t help me and I am wasting $200 a month in co-pays seeing these people who won’t or can’t help me. I went back to pain management and said in all honesty, “I’m done with psych. She’s not helping me and you’re not helping me.”
They upped the Ultram another 50 mg for breakthrough pain, and I became extremely ill. I vomited everything and couldn’t hold any food. The serotonin was building in my body – it’s got a half life. So I was overdosing on serotonin, even taking it exactly as directed. There is nothing they can do for serotonin toxicity. It’s got to wear out of your body. I stayed in the hospital for 5 days on IV. I was unable to hold down any food until after a couple of follow up visits. I couldn’t even keep fluids down.
My organs were starting to slow down. I then found out I had AVN in my left hip. AVN is Avascular necrosis. They released me from the hospital and told me to go back to PCP. She ordered tests, bone density, etc. So at this point, my left hip was okay, but they needed to do the right hip. I returned to Pain management because my PCP wouldn’t allow anything for pain. Next, CT showed left hip AVN. Again, I was given no medication for pain and no sleeping meds, due to the fact that I wasn’t sleeping at all. I was referred to psychiatrist. I was given 20 – 5 mg of valium at night. I don’t take them every night because I was already told that the doctor wants a pill count when I go back in.
Two weeks later, I went out with grandkids and by time got home couldn’t bear weight on left leg. I went to the emergency room. The pain was excruciating. I couldn’t take the pain. I told the nurse that “If you don’t treat my pain, I’m going to jump from the 5th floor of the parking lot”. The nurse wasn’t happy about it, but gave me 20 Norco. Enough medicine to get to surgery date. She told me that the surgeon would prescribe pain medication for me.
Now I found out that both hips need a hip replacement. CT scans revealed a 9 x 9 mm mass in R hip that they don’t know what it is. I was still given no pain meds at all. I was given a scant 20 valium and 20 Norco to last until till October 19th,. 2016. I will see the orthopedic surgeon on 10/19. Pain management is scheduled for the 11th and I am very worried that I will get in trouble with pain management because of going to the emergency room when no other help was available and the pain was unbearable.
Currently I have no family life. I do like to be outside, but the best I can do is to sit in the garage with the door open. I am unhappy sitting in my house. I now hate my house it because I’ve been so confined to the house for so long. When I do go out and do something, I pay for it. When I went out with my kids, I came home in tears, not being able to walk. I get no help around the house at this point. My husband is working hard to pay off $11,000 in medical bills. My poor husband is stuck with working, coming home, making dinner, helping with baths, etc … Needless to say, my marriage is suffering. Effective pain management would help me immensely, but is out of reach due to the CDC “guidelines” and the state laws that quickly went into effect after the release of the guidelines limiting doctors as to what they can do for patients due to pain.
Our government MUST step up and help people like Angele. She’s been suffering for 8 years now, for the most part without pain control adequate to keep her in a functional mode until her various surgeries can be completed. During the time that Angele was undiagnosed, adequate pain control certainly would have helped the situation.
Angele has never abused pain medication. She has never violated any pain management contracts, although she is afraid of what will happen at pain management when they discuss the emergency room visit. She has endured more pain for the past 8 years than any human being should be forced to endure. She has been told there is nothing wrong, misdiagnosed, and treated rudely by medical professionals. She has done nothing wrong.
When did we become a society where people in severe pain … pain severe enough to make one want to jump 5 stories from a parking garage … that we don’t give them adequate medicine for pain relief? Angele has done nothing wrong. She didn’t ask for her orthopaedic injuries, nor did she ask for the Lupus and the bilateral hip replacement. She has the right to adequate pain control so that she can perform at least some household responsibilities and perhaps help the relationship between her and her husband.