I Was a Teacher

Dust gathers on college degrees hard earned

for a career I honestly enjoyed.

Mementos and presents from students now grown

are packed away in boxes labeled “keepsakes.”

Each Christmas, my tree is weighed down with

ornaments students gave me over the years.

It’s all that is left to show I was a teacher.

School starts back tomorrow, and I miss the excitement of meeting new students. However, this is the first year I have been able to stay on any type of social media during the month of August since my body crashed in November 2013.  Usually, I get too depressed seeing the classrooms getting ready for a new year, the open houses, and I just can’t handle it.  As you can imagine, a lot of my Facebook friends are teachers.  I taught at two different school districts during my career.

I am proud to say that while I still wish I could get up and go in tomorrow to my classroom and teach a fresh batch of 6th graders, I am able to view pictures online of former coworkers getting ready for their school year without the usual overwhelming sadness and depression.  That is major progress for me.  I have finally accepted my life will never be the same.

This is a picture of my 6th grade classroom when I was a teacher. I worked with ADA accommodations.

Teacher Days (35)

 

 

Leave My Meds Alone

I am a patient at a Pain Management Clinic. I am stigmatized. I am made to feel like a drug abuser for needing relief from my chronic pain. I pay out of pocket for random drug screening, and I am fine with it. It is part of the process. My medication can be counted at any time. The medication has a DEA number with my street address. My prescriptions can only be picked up by me in person or by one representative since I can’t drive. My representative’s information is on file with the pain clinic which can be accessed by the DEA. We live in Arkansas. The laws are very strict about prescribing pain medications to the point general practitioners usually will not prescribe them at all. Urgent Care centers have signs up stating people will not receive pain medication. Our state STILL has a huge opioid abuse problem.

National and Local Media headlines scream, “Opioid Crisis!”

Senators and the President demand action!

Mourning parents of overdosed children cry out to the government, “Just do something!”

Here’s some reality for everyone: By making it even harder for me, a law abiding pain patient, to get my prescriptions, no one is making a difference.

The children who overdosed didn’t take a legal prescription. If one looks at the actual statistics, fentanyl-laced opioids are often involved in drug overdoses.

How is any of this my fault? Why should I suffer? Why should ANY pain patient suffer?

I sat in the waiting room today at the pain clinic and looked around at the other patients. I am 42-years old. There wasn’t anyone in that waiting room who looked younger than 50. It’s usually a rather quiet place. We’re all in pain. If it’s shots/procedure day, we sometimes discuss our screwed up discs, joints, hips, etc. I’ve met people from all walks of life who come there because of wrecks, diseases like me, or accidents.

My pain doctor is NOT a pill pusher. He is only prescribing me the least amount of pain medication I need. He has taught me bed physical therapy exercises to help me manage my pain in other ways. My pain doctor also prescribed a rollator with the hopes of getting me more mobile because that will help with pain. He goes above and beyond what a pain doctor has to do.

Pain management clinics and pain doctors are taking a beating in the media. We patients are as well. I’ve even heard a few QUACK doctors say “just deal with your pain with medication” on TV. Those doctors have obviously never dealt with a TWO MONTH long migraine or Degenerative Disk Disease or bursitis or fibromyalgia or arthritis.

On Instagram, I’ve been offered snake oils more times than I can count. I’m not interested. If something works for a person, more power to them. Been there. Done that. Wasted my money. Won’t do it again.

So, I will continue to go see my well educated, compassionate doctor while the media keeps bemoaning how the world is coming to an end because of opioids. They seem to forget something very important in all of this: it’s opioid ABUSE that is the problem.

I can name several other legal products that are abused every single day of the week.

Unexpected Loss

My aunt passed away four days ago after being in the hospital three weeks fighting for her life. What was supposed to be a simple hernia surgery turned into a nightmare.

After the surgeon closed up my aunt, she became sick. Developed pneumonia. Then became septic.

They opened her up to find a perforated bowel.

My aunt fought to live through many painful procedures over the last few weeks.

Then she seemed to improve. She was taken off the vent and given a little liquid by mouth. The family thought there was hope!

Our hearts shattered when the very next day her body started a downward spiral and never recovered. God called His angel home.

She wanted to be cremated. Her Celebration of Life Memorial Service is tomorrow. It all still seems surreal to me. Her hugs were so warm. Her smile was infectious. She lit up a room when she walked into it. She was the aunt that didn’t turn kids away in the neighborhood.

The world isn’t quite the same knowing she’s not in it. I can’t wrap my mind around the fact she’s gone.

Maybe it’ll hit me tomorrow at the service.

Losing Weeks of My Life

The last weeks have been a blur of pain, puking, tears, moments of relief, then times of wondering if I’d be on this Earth in the next few hours. Northera didn’t work out for me.

First, in order for me to get the medication for $10, my insurance company had to pay just a small portion of the copay. They refused. I shouldn’t be surprised. They refuse to pay for my migraine medication. I pay $455 a month for insurance with a $3,000 deductible, and my insurance company refuses to pay for several medications I need. They will pay for opioids for migraine relief but not pay for the migraine medications I actually need that are NOT addictive. So, Ambetter refused to pay a portion of Northera, knocking me off the $10 plan AFTER I went through the titration schedule of that powerful drug.

When I say powerful, I mean powerful. It was bringing up my blood pressure…a first for me. However, I have gastroparesis. Northera was killing my stomach. I don’t know if the medication interacts that way with ALL gastroparesis patients, but I could not even tolerate a Step 1 gastroparesis diet by the time I was at the recommended dose. I took the medication with food. The nausea graduated up to vomiting and a stabbing feeling in my stomach and abdomen. Those are normal feelings for gastroparesis, but the pains were multiplied ten times.

But I wanted to keep taking Northera! I was seeing blood pressure readings I’d never seen before! They were NORMAL! Not in the basement! NORMAL! To me, it was worth the pain…the puking…the weight loss…because in my mind, maybe just MAYBE all of my symptoms were leftover from the bacterial infection floating around in my blood. Maybe it wasn’t Northera’s fault.

Then last Friday, or a Friday, I am not kidding about losing days, I get a letter in the mail from my joke of an insurance company informing me they refuse to pay for Northera. I burst into tears. I informed my husband. He’s upset, but he also brings up something that’s been in the back of my mind as well.

“Maybe it’s for the best.” At that point though, I’m on a high dose of a strong, expensive medication without a way to pay for more. I’m scared. My body is worn out from fighting multiple battles including runs of tachycardia for absolutely no good reason. I had to titrate UP, so how do I get OFF this drug in a short amount of time? It’s $6,000 a month. We don’t have that kind of money. I’ll not lie. I panicked.

I called Caremark, the pharmacy in charge of supplying Northera to me, and talked to the pharmacist. She told me how to safely wean off the medication. She also told me to contact my neurologist ASAP. It was early on the West Coast but not here in Arkansas. My neurologist closes at noon on Fridays. I was out of luck.

Then, I called Ambetter. I knew it would do me absolutely no good to file an appeal or to give them a piece of my mind. I had done both when they refused to pay for the only migraine medication that does not affect my tachycardia. They still told me they would only pay for sumatriptans which make me vomit and cause me to faint. However, I still made the call. I told them I was paying a large monthly payment to a health insurance company only to keep getting told they would not pay for medications. I also told them I felt one reason our country had an Opioid Crisis was because insurance companies easily paid for cheap opioids but refused alternatives such as my migraine medication that my husband and I were paying for out of pocket. Of course, the woman who listened to me is simply a worker on the end of the line. I was not rude to her. I’ve been in her shoes as an educator simply doing my job based on laws enacted by politicians who’ve not been in a classroom since they were students themselves. I just wanted on record as protesting the decision.

Right after hanging up, I began vomiting. It was as if I had my answer. I’d not run a fever in days. This wasn’t the leftover bacterial infection. My body was expelling Northera. I couldn’t handle it. My paralyzed stomach couldn’t process it. I started cutting the dose immediately.

During that time period of lost days, I had one cardiologist appointment to be hooked up to a holter monitor. I barely remember the trip. I’ve had text and phone conversations with my daughter and Mom. I’ve paid some bills. I hope I’ve not missed any. I’ve mainly stayed off social media and stayed at home only seeing my husband because I haven’t been myself at all. We didn’t celebrate the 4th of July. He was actually called in to work, and I was alone. That was okay. While I was lonely, I spent the day reading in bed.

My body is still very weak. The good news is I’m back to eating my level of normal again. My gastroparesis vomiting is controllable for the most part again by phenergan. I’ve awakened from a nightmare.

My husband’s boss and supervisor were so supportive and understanding during our time of chaos. We’re beyond blessed that he works for great men who know what I have and how stressed he is over having to leave me alone during the day. They offered to give him time off, but with two new ER trips to pay for and an insurance company who refuses to pay for needed medications, our finances won’t allow for time off.

I told my husband the other day, “We might’ve made it through this crisis, baby.” He said, “Maybe.”

I have hope.

Friday Was Not Funday

My Apple Watch alarm started alerting me to a high heart rate around 3:40 am Friday morning waking me from a sound sleep. I couldn’t believe it was running in the 137’s and wasn’t going down. So, I woke my husband, and we took my blood pressure. It was too low to register. We waited 5 minutes and tried again. Still too low! Time for action. He helped me into compression hose and grabbed a Liquid IV drink from the fridge. I drank it quickly. We waited a little while and managed to get a reading on the blood pressure monitor. My blood pressure was low and my heart rate wasn’t coming down at all.

Also, I had a horrible migraine. When I started Northera, I was told if my heart rate stayed above 110 for more than an hour, I needed to call my doctor. I hoped to get it under control because I had my annual cardiologist appointment last week, and I’m already scheduled to get a 24 hour Holter monitor on Monday. I knew if I called, I’d have to go in.

My heart rate never settled down.

I called my doctor’s office. His nurse told me he wasn’t in, and I needed to go to the ER. When I arrived, the triage nurse took my vitals and immediately took me back. Imagine my surprise when I found out I had a 102 fever. I had told my husband on the way that I had some chills, but the AC was on in the truck and I’m cold natured. It’s a common complaint from me. We keep throws in there year-round in Arkansas. With Autonomic Dysfunction, my body does some strange things! Seriously, I rarely sweat. That’s dangerous here.

I went in to the ER because of my heart rate not slowing down but quickly became a patient with a high fever, migraine, and neck pain who had to have meningitis ruled out. We got scared. I won’t lie.

The doctor ran a CT and when it came back clear, he performed a spinal tap to test fluid. They also ran a chest x-ray to see if I had any congestion starting since I had coughed a few times while in there. The doctor did blood work for everything, including blood cultures.

Thankfully, we only had to wait 90 minutes to find out I did NOT have meningitis.

I DID have a small dark spot at the bottom of one of my lungs like pneumonia was trying to form. The doctor wrote a prescription for a very strong antibiotic for bacterial infections to start immediately.

All of my blood work looked great other than my white blood count being low which showed some immune suppression. I am not sure what that means. I’ve been told that once before, so I am going to have my PCP get my records.

They told me my blood cultures would take awhile for results.

The ER called me this morning to follow up. My blood cultures showed I DID have bacteria in my blood. The doctor wanted to see how I was doing and to make sure I filled the antibiotic prescription. If I don’t improve after taking all of them, or if I get worse, I am to come back.

I haven’t been to an ER in YEARS because of a horrible past experience. My illness is not well understood by most in ERs. I know I’m not alone in our patient community because I have sadly read other horror stories.

Yesterday, I was treated with compassionate care by a great medical team at Unity Health in Searcy, Arkansas.

Pain, Agony, and Faith

Today has been one of those days when I’ve cried out to the Lord for His healing mercy because I feel too weak to go another step without His touch. His Grace. His mercy.

It is Day 4 on Northera. I was warned about possible nausea and gastrointestinal side effects. I have gastroparesis. The nausea the last two days has literally brought me to my knees. I have lost 3.6 pounds since starting this drug. However, those are the only side effects I’ve had thus far on my titration journey. Oh but the stabbing pain and the anxiety of wondering if I’ll lose too much weight on this drug is a lot to contemplate.

A few hours ago, I called my neurologist’s office in tears asking if I could take phenergan with Northera because I was in the fetal position hugging my Dachshund begging God for relief.

I have a high pain tolerance. Northera is aggravating my gastroparesis. It’s also bringing up my blood pressure numbers. There’s a positive to this expensive drug. I’m going to keep taking it. I MUST keep taking it.

Midodrine and Mestinon won’t bring my blood pressure up. A patient isn’t supposed to lie down after taking Midodrine because it can cause supine hypertension. I can lie down after taking Midodrine and still have orthostatic HYPOTENSION. So, something has to give.

Northera may be my last hope for getting this Autonomic failed body upright for more than a few minutes without symptoms.

I’d like to do it minus the writhing around in bed begging God to miraculously cure my stomach.

For now, I suppose I will be popping Phenergan with my Northera until my body gets used to this new very strong medication. I’m praying that happens quickly.