My Video Pain Story

I am a volunteer for The US Pain Foundation. Although, I also live with Multiple Sclerosis, I felt that Chronic Pain Patients are largely ignored. I really threw myself into this foundation because the “opioid crisis” was panicking a lot of Doctors and patients. All of a sudden, pain medication became the new Boogy Man. […]

The Agony and the Ecstasy of Sleep

Anxiety. When I think of sleep, thats the feeling that comes over me. Sleep used to be something I would look forward to. Sleep was something you cherished on the weekend after working a long week. Ahh, the thought of stretching out in my bed for 8 plus hours was my goal.

Now, the thought of sleep brings on the feelings of anxiety and panic. The complete opposite of all those fuzzy and warm feelings. That great reward.

Nope, not anymore. Now I average about 3-5 hours of ‘Broken Sleep’. My definition of broken sleep is, well, sleep that is broken. Meaning I cant sleep more than an hour before my eyes pop open, or sweat wakes me up, or my personal favorite, the bathroom. Then of course you try to shut your eyes, tightly, and hope and wish yourself back to sleep. Nope.

We all know sleep is important, its actually vital to our survival and our sanity. But what happens when something you look forward to and loved turns into something you despise and find stressful.

Although I still get stressed thinking about sleep, I managed to turn the process around for myself.

How I manage the anxiety of sleep.

1. I try to go to bed happy, so I may watch something interesting or funny, not sad or aggravating. Now that almost kicks out everything on TV, but I manage to find something to make me laugh.

2, I now embrace getting up early. Trust me I never did before. I find getting up early to be my own personal time of peace, quiet, and reflection. Now how early do I get up? Well that depends. But the usual is 3-3:30 am. Sounds crazy but I actually like it. In the summer, I go outside and watch the sun rise with a cup of coffee or just listen to music. My favorite thing to do now is, well, this. I write, blog, and get my calendar up to date. Which leads me to the last step.

3. Writing either before I go to bed or when I get up in the morning empty’s my thoughts onto the paper or computer. It’s a great way to free your mind of all those thoughts clogging your brain. It feels good to start the day fresh and organized.

In the end, I still feel some trepidation when I near the proverbial bedtime, but now I can relax before bed and even after I wake up obscenely early.

As a side note, since I battle Multiple Sclerosis, I don’t like to take sleep aids, either over the counter or prescription. I say that only because I am already fatigued during the day, and I don’t like feeling anymore tired than I already do. Plus, I don’t want to wake up groggy and foggy. But thats just me. I am not against sleep aids, I just learned other ways to achieve the same goal.

So to everyone, sleep tight and don’t let your disease bite. If it does, bite it back!!! Good Night and Good Morning and Good Luck!!

There is No Shame in Pain

For me, being in pain is hard, talking about being in pain is even harder. Trying to convey your day to day life to someone is a task and a half. It can be frustrating and lets face is, does the person your talking to really care to hear it! Perfect example, the simple greeting of “Hi, how are you doing today”? That is a loaded question to a chronic pain patient. I approach it with some humor and ask them if they are sure that they want to know the answer or how much time do you have. But I think the real third rail is talking about opioids or pain management

Over the years I have found it difficult to talk about my pain management to anyone outside my mom and husband. Whenever I go to a new doctor and I have to talk about the medications I am on, I begin to stress. My hands are sweaty, my heart beats harder and faster. This is because I know the doctor is going to question what I’m on and why I am on it. Along with the questions comes the look. The look of disapproval. It’s that look that causes me to feel a sense of shame. The fact I have to justify myself for the medication I’m on and the pain I’m in……The doctor has just shamed me.

But its not just doctors, its the overall public sentiment. It’s the war on opioids. It’s hearing doctors on television say pain isn’t real, not in a physical sense, but psychological. It’s hearing stories of people in the ER with a broken leg and getting two Tylenol. It’s doctors out of fear for their own practice tapering off their patients then cutting them off all together. Now we are facing the unthinkable, pain patients taking their own lives because the pain is too much for them.

Pain shaming is real. I have felt it. I had a doctor once tell me I have a “problem”. He told me that while I was suffering with the MS Hug (do a search for that, its not pleasant). He felt that doesn’t exist, guess what?? He was a Pain Management Doctor. This doctor took over for the doctor i was seeing in the same practice. I always recognize that when you become someone else’s patient, that doctor is not obligated to treat you medically as your former doctor did. With that being said, he came into the room, introduced himself, scrolled through the computer until he found my medications. Once he found them, actually it was only one, he stood up and said, “I do not prescribe these kinds of medications. I will not take you as a patient unless you go to a detox program. I think you have a problem”. I will tell you I was on 30mg of morphine every 12 hours. That was the only medication other than MS meds that i was on. I was shamed right out of the practice. For anyone who has never been to a Pain Management Doctor or practice, you sign a contract agreeing to random drug screenings and in my case, pill counting as well. I was a patient four 4 1/2 years. Obviously, never failed either test. I responsibly followed the rules, yet shamed out.

I am happy to report I found a practice that treats me for the chronic pain patient that I am and has restored a positive quality of life.

I will continue to write about this, because this a problem. My problem pales in comparison to what’s going on out there. What I’m gonna say here is harsh and I apologize if it comes off wrong, but in some cases, chronic pain patients are being shamed to death. This has to stop. The pendulum has swung too far in the opposite direction. In the rush to fix the opioid crisis, another crisis is being created. Doctors have a fear of losing their license, so they have a fear of prescribing. Patients have a fear of doctors which leads to mistrust. In my opinion the crisis is the shaming of the chronic pain patient by the constant barrage of opioid lawsuits, doctors telling the world that pain is not physical, the intensity and frequency of Rehab and detox commercials. There is no shame in pain. #painwarriorsunite