Ange's Got Moxie

Are you a strong person who refuses to give up or give in? Are you a patient or caregiver? I've been and still am, both. This blog is all about my journey. I also love life in the country and love to laugh and try to see things with humor.

Thursday, April 28, 2016

Chronic Illness, Pain, Opioids and the Pain Treatment Centers


Opioid pain medications and abuse are getting a lot of attention, deservedly so, this is a problem in the United States.  (As I type, yet another report comes on the news.)  Unfortunately, chronic pain patients are not getting the same attention.  It’s important that we remember that chronic pain is also a very real daily issue that affects quality of life for millions of people.  I’m one of them.

The state where I live has had some of the toughest regulations for opioid medications for years now.  There is a huge stigma associated with taking any kind of pain medication.  Admitting going to a pain clinic is tantamount to admitting that you have a drug problem.  This is could not be further from the truth!  

Yesterday was my regular appointment at a pain clinic.  I was not referred to this clinic immediately upon my diagnosis with chronic illness.  I was diagnosed over 15 years ago.  I also was not referred immediately after one surgical complication.  It was months after several surgical complications and nerve damage that I was referred to the pain clinic.  I have tried numerous other therapies.   At home, I still use relaxation techniques, music, heat and ice, stretching and a TENs unit besides pain medication.   Do you know what the only thing readily approved by insurance without limitations and huge expense for me might be?  Yes, pain medications.   I am willing to try any therapy recommended by doctors including acupuncture, massage, hypnosis, aromatherapy and would love physical therapy in a warm pool but it has to be affordable.  Chronic illness is expensive.

When I arrived at the clinic yesterday the waiting room was packed, as it is always.  There are many elderly people.  I’ve spoken to many people who drive three to four hours to get to the clinic.  It takes an hour for me.   The appointments are always the same.  After signing a card with your complete information, not just name and time, I try to squeeze in somewhere in the waiting room.

When my name is called, it’s back to the scales to weigh, get vital signs taken, go through any other appointments you have had, ER visits or hospital stays, medication changes, your pain level on those scales we all know and love/hate and when you last took any pain medication.   I move on to another room where I wait again to see either the doctor or a Physician’s Assistant or Nurse Practitioner.   Each patient only sees the doctor a few times a year, seeing the PA’s and NP’s between.  Then I follow the yellow line to the lab.   Bathrooms and needles wait.  Each time, each patient must leave any belongings in a cubby and urinate in a cup.  There is a big gray tub for the samples.  I place my sample in the tub with all the others and wash my hands in view of the nurses and gather my purse.

Back to the waiting room where I let them know I am finished.  I’ve seen the doctor this trip.  When they call me to the next window I am scheduled for an extra appointment to try an interventional procedure, a steroid shot in my Barbie butt gone wrong.  I’m really anxious about it so I ask for an appointment with a counselor, too. 

Now it’s back to waiting.  The waiting room is so packed there are almost no seats left.  One woman and man tell me they have been waiting for an hour and half and two hours since they saw the doctor or NP.  We must all sit in the waiting now for someone to bring out prescriptions.  They bring out stacks at a time, like handing out fliers.  Only these fliers are carefully guarded.  You have to show a picture ID to receive one, sign your name and initial here, here and here.  There is no privacy; the entire waiting room can see how many fliers you get, even if they don’t know exactly what is written on the flier.  It doesn’t matter.  This waiting room might not be made up of the same demographic of people but we are still all the same, we all hurt and we all feel degraded, shuffled in and out following the yellow and blue lines.

Am I better served here than with my regular doctors?  The government thinks so.  It’s the response to opioid abuse.  I think what happens to me is more likely to fall through the cracks.

Hyperbole and a Half - A different kind of pain scale

Acute vs Chronic Pain

US Pain Foundation - It's Time for the Pain Community to Organize

Dr. Oz on Doctor's and Opioid Pain Medications

Opioid Abuse and Chronic Pain - Twin Epidemics

Forbes - One Orthopedist Prescribing Meditation Over Medication

Tuesday, April 26, 2016

The missing drain - Back to the hospital

I dissolved into a big heap.  Husband and I were already on edge.  His truck blew up while I was in the hospital and I thought it could wait to be fixed until I was at home and he could use my car.  He did not.   I was stressed from everything going on with my body; he was stressed worrying about fixing vehicles and paying for it.   Then I came home and we tried to deal a huge, painful open wound together with almost no instruction.  It didn’t mix.  My parents and oldest son have gone south to their second home.  My sister is on an island working.   I called another cousin, an RN who worked in home care.  Blessedly, she took charge. 

Again, in five days, I had gone through 100 pads soaking up fluid from this wound.  It was swollen, painful, huge and I couldn’t see it.  Cousin was appalled when she saw what I was dealing with, that I had no sterile supplies and was alone.  She got on the phone with both the doctor’s office and a home health care agency.  It took more than one phone call and arguing with a PA over my need for home care but by the end of the day, I was set up with an intake appointment for the next morning.
When the intake nurse came out the following morning, I was never so relieved.  We still had to do packing changes but we had some help.  Husband still tried to help me, but it was just too painful and we were both so frustrated.  I ended up doing the packing changes myself, by feel.
As the days went by I continued to get weaker.  My heart rate got higher.  I started running a low grade fever off and on.  I reported it but the fever never got over 101, the required number to be “sick”.  The home care nurse was worried and thought I should be seen by a doctor.  I didn’t have the energy.  Finally, the nurse insisted and called my GP for an appointment the following morning.  I couldn’t wear pants, clothes hurt, but I had couple maxi dresses.  My son had to help me to the car then put me in a wheelchair because I was so weak.  The GP took my vitals, then told my son he was calling the hospital and to drive me straight back to the ER.   I groaned.  It was the last thing I wanted to do.

We picked up husband and my hospital bag and headed to the ER.  By the time we got there and they put me in another hard wheelchair, I was in so much pain from sitting, I begged them to get me out of the chair and stick me in any corner.   They took my vitals and told me I was a direct admit and headed straight to a room.  This is when I discovered the Acute Care Transition unit, not quite intensive care, not quite regular care.  By the time they got me to the unit and a bed I didn’t care where they put me.  I was in so much pain and so weak, I just wanted to get in a bed, on my side and off my behind.

My white count was sky high, indicating infection.  Doctors ordered another CT scan right away.  I was up all night with tests.  Besides showing that now I had a pelvic abscess, there was something that looked like a cotton swab in my pelvis.  They started asking me how I had been packing this wound and if anything could have gotten in it.  Oh, no!  I knew what it was immediately!  That mushroom drain they had shoved in the stitches and sewn to my cheek!  I thought the surgeon removed it when I was in the office and she was picking and poking before she packed the wound.  There was some problem with hospital records and some electronic records were blank in the files, including mine.  The resident who sent me home, my surgeon, and the doctor treating me now had no idea the drain had ever been put in.

Of course it was the weekend.  The nurses told me it was some surgical head, a big deal in the hospital, that came to see me.  He had an entourage and was dressed in a suit, not a lab coat.  First, he asked me to tell me him about this drain.  I did.  Then he asked his entourage to get him this and that.  The next thing I knew, I was on my side and he was digging that drain out.  Right there, in the room, in the acute care transition unit, no anesthesia, not even a local.  A resident said I was “handling it well.”  What choice did I have?

My 16 year old son was sitting across the room in front of me.  Husband had gotten us settled in the night before and gone home.    I couldn’t ask him to hold my hand where he might see was going on.  I couldn’t scream and yell and scare him senseless.  I was too scared to move a muscle, it already hurt enough.  This was barbaric.  When it was over, I was really in pain.  My Barbie butt had turned into GI Jane after an IED.  I mean no disrespect to our veterans, I don’t know of any other thing to make a comparison.

They ran a ton of antibiotics and fluids through me and kept packing the wound.  When my white count was down some the next day, it was decided I could continue antibiotics at home.   Another round in the afternoon by IV, then I could go home again, continue with the home care and keep the appointment I had with the surgeon.

Husband came to get us and we got antibiotics to take home and more supplies.  The last time I left the surgeon’s office I felt dismissed.  This time after being in the hospital, I felt deserted.  It was a very unpleasant experience and I wanted someone there with me, to tell it was okay, to be strong for me, to let me cry.  Instead, I painted my nails, smiled and got on with trying to get better as best I could.