Sunday Morning Musings

So. I saw my pain management doctor last week. I went in with an 8+ pain level, dizziness, nausea, vertigo, weakness, and serious depression and anxiety. The nurse asked me how I was doing. I looked her in the eye and she said, “I’m sorry.” My pain is written on my face. As are all of my other symptoms. I do a damn good job hiding them most of the time. Not in this office. They need to know how bad things really are and have been for a long time. When I’m out in public, it’s usually “I’m fine. How are you?” Fake smile. People don’t want to hear the truth. They don’t want to be brought down. They don’t want to know about my issues. The fact that I can’t shower without pain. They wouldn’t understand how the water hitting my head is amplified and pure agony. They won’t care that I don’t usually wear sweats in public, but anything tight hurts my skin. They don’t want to see my tears that come every time I talk about myself. They wouldn’t understand the anxiety that comes with being more than 20 minutes from home. Worried the pain will worsen and I won’t be able to take another pill because I have to drive home. Mortified that I may have to vomit out the window while on the road. So. I smile. I get through it. I lie.

But not in the pain doctor’s office. They have to know the truth. They have to see the pain, the depression, the anxiety, the panic attacks, the tears…. Most of them are oblivious. My doctor and his nurse are not. They are sympathetic, empathetic, and they care. They don’t see this as the end of the road for me. They don’t tell me they’ve tried everything. They don’t tell me there’s no hope. They’re honest and tell me that there’s no cure. They don’t lie. They just haven’t given up on me and that means the world to me. Especially when I feel like giving up myself.

My doctor discusses options, new treatments, future treatments, possibilities, things we’ve yet to try. It’s the boost of positivity I am desperate for when I feel so lost. So we try new meds, new treatments. Some may help, some may not. But we’re trying. They haven’t given up on me, so I won’t give up on them.

Carry on fellow pain warriors and always keep fighting! Have a beautiful day! wpid-fb_img_1424364439689.jpg

Open Letter To CDC

“Pain Patients No Different Than Addicts” CDC Expert Says

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Pain patients are apparently no different than addicts, according to Andrew Kolodny, a member of the CDC panel responsible for the new opiate guidelines, and the chief medical officer of Phoenix House addiction rehab and a member of PROP:

“And what they’re saying is, let’s not penalize the pain patients for the bad behavior of the drug abusers.  The reality is that we don’t have two distinct populations.  There’s a tremendous amount of overlap.  And when you look at who’s dying from painkiller overdose deaths, the majority appear to be patients having these medications prescribed to them for chronic pain.”

-Andrew Kolodny

REALLY?! SERIOUSLY?!

As a chronic pain patient, I am disgusted and humiliated by these comments! Honestly, who the hell do you think you are to spew this garbage?! Do you suffer from a chronic medical condition? Are you unable to work, even part-time or from home? Are you incapable of earning any type of income? Do you rely on the government to supply your food, medical care, and prescription coverage? Did you fight for almost five years FOR this coverage? Are you unable to get out of bed most days? Are you near constantly in excruciating pain? Do you only leave the house to go to doctors, pharmacies, and medical testing and treatment? Have you tried every available medication for your pain to no avail? Have you suffered side effects from these meds that are worse than your average symptoms? Spent days in a dark room, curled in a ball, crying, screaming, and wishing for anything to take the pain away? Are you so depressed and anxiety-ridden that you wish you were just done with it? Are you constantly hearing about breakthrough medicines and treatments, only to find out it’ll be five years until it’s available to you? Have you lost all of your friends and most of your family due to your enforced isolation? Are you grieving for your past life? Wondering “why me?!“ If you can answer yes to these questions, I still would never forgive you for your lack of empathy and compassion! I am not an addict! I hate the fact that I need these pills to get through every day! I hate that people look at me differently because of my chronic conditions! I’m missing out on my own life! And it’s not like I’ll get another chance! I am forced into extreme action due to no choice of my own! I don’t want these drugs in my system long-term! I have no idea what they’re doing to my body! Until a cure is found, which won’t happen until research is funded for these diseases and conditions, I rely on these pills to do the little bit of activity I’m able to accomplish. And by no means am I pain-free due to these pills, but they allow me to survive. SURVIVE! NOT LIVE! Thank you Andrew Kolodny from myself and my fellow chronic pain warriors for the slap in the face you’ve given us when we’re already in constant pain! Shame on you!

Wednesday Morning -3am

So. It’s 4 days after the worst migraine episode I’ve experienced in years. I’m still recovering. It came on slowly while I was out, and seemed like my usual. I was a little bit late taking my meds, but not by much. That’s one of the main problems with this particular demon, it does whatever it wants. Whenever it wants. No matter how much you beg, plead, and cry for it to stop. It doesn’t care. By the time I got home, I knew I was in for more than usual. My right eye was constantly watering. New symptom for me. I was more nauseated than most times. I sat down on my bed and tried to find a comfortable position. The throbbing and stabbing had intensified over my left eye. I couldn’t lie on either side. I got dizzy when I sat up and nauseated when I reclined. I hadn’t remembered pain this intense. Something in my head wanted to get out by any means possible. It got to the point where I was begging for a hole in my skull to just get it out. I had taken my oral meds and was attempting to prepare.an injection. I knew I couldn’t face the ER, and they’d give me the same drug. (After making me wait for hours, with the lights, smells, noise, and chaos. I couldn’t bear it. I finally gave myself a shot and managed to call the pharmacy when I discovered I was out of my follow-up oral pills. I don’t think I’ve mentioned that I found a local pharmacy that delivers! Srsly! Delivers to my door. My meds were here within 30 minutes or less. (Kinda like the pizza!) That was a lifesaver! I spent the next few days in a drugged, hungover, completely worn out state, but I made it through! I beat my demon once again! I’m now caught up in the wonderful mindset of anticipatory anxiety that this will happen again if I go out or overdue or smell something. So I’m staying in my bubble for awhile. I’ve earned it! This too shall pass. Carry on chronic pain warriors and always keep fighting! #WeNeedFunding #WeNeedACure #ItsNotJUSTaHeadache #StopTheStigmaIMG_20160301_225253

Friday Feelings

So. Another week done. Time flies by no matter what goes on in life. I had an especially difficult week. Intractable migraine for most of it. 8-10 pain scale. I don’t really go by the number scale. Not when my lowest pain level is being able to focus enough to get to an appointment or the pharmacy without falling or failing. My median pain level is in my chair or bed, praying to anyone who will listen for a break from the constant stabbing, hammering, confusion, nausea, and dizziness. My highest pain level is curled up in a ball, in the dark, crying, wanting to scream, “Why me?!” Almost wishing it would all just end. Almost, but not quite. I find a reason to carry on and always have. My Mom. My furbaby Samantha. My fellow chronic pain warriors. The hope that new, effective treatment is available soon. I’m not done yet. There are plenty of things I have yet to experience. Dreams to make real. So, I fight and rage, cry and panic, always pushing for the next day to be better. I hope you all can do the same. Much love!

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Don’t you cry no more!

Thursday Things

So. 3:00 a.m. again. I’m beyond tired. My thoughts are scrambled. I’m staggering around the house. Searching for clothes, coffee, cat, heating pad, tablet, pain meds, crackers, TENS unit, and my chair. My beloved chair. When the pain gets too bad to stay in bed, I have my chair. Painsomnia. I didn’t even know this word a few years ago. The pain won’t let me sleep for a rejuvenating amount of time. So I’m never fully rested. Always tired during the day. Wide awake at night. Mind full of thoughts, fears, worries, panic, worst case scenarios, etc. When I finally pass out in my chair, it’s only for a few minutes at a time. I try to go to bed, but migraine symptoms, back spasms, hip and knee pain won’t allow it. I’m not in charge of my body or my mind anymore. My demons have taken over. They decide what will hurt, to what degree, for how long, and when I finally get a break. Even a half an hour of real sleep and I’m in their debt. I have to find a way to wrestle myself out of their grip and take back my life! It’s mine to live, dammit! No one else’s! Right now, I’m at their mercy. Hopefully, the pain meds will kick in, the pain and worry will recede, and I’ll be strong enough to fight. Be strong fellow warriors! Ours is a long and arduous battle. Carry on and always keep fighting! Much love! 💕

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Hope



					

Thursday Thoughts

So. One of the things that I hate the most about chronic illness, is the inability to plan ahead. I try to keep to a schedule, but my body doesn’t always cooperate. I schedule my doctor appointments with the best of intentions. I need to get there. I stress the entire day before, which does nothing but make it more likely that I’ll have to postpone. Here’s some of how that inner monologue plays out. My appointment is at 11 am. I’ll have to leave home by 10:30. If I get up at 4:00am, I can take my morning migraine meds then and be okay to drive. But I get anxious and need my anxiety med. If I take that along with the migraine med, will I be able to drive safely?! By now my head is throbbing from lack of sleep and caffeine, and as I wake up more, I take inventory on what other areas hurt. I need ice on my knee and heat on my hip. I can try the TENS unit on both of those and maybe Advil. I’m nauseous from the migraine and the meds that I’ve already taken. The thought of food is not a good one. But if I take the anti inflammatory, I have to have something in my stomach. It’s now almost 7:00. Only 3 hours until I would have to leave. If I can’t make it, will they charge me? Will they dismiss me as a patient because I’ve cancelled and rescheduled so often?! Is it too late to take another anxiety pill?! Will I get sick if I eat or sicker if I don’t?! Will I be able to drive since it’s my right knee that hurts and is weak?! Can I drive with the brace on?! What if I get pulled over and the police find narcotics in my system?! What if I lose my license?! Who will take me and Mom to appointments?! I really have no one to ask since my “friends” couldn’t handle the constant complaining and canceling on them and disappeared. It’s a vicious cycle in my brain which makes the migraine worse and the anxiety stronger. I try to take charge and say to myself, “You’re going! You’ll be fine!” Then the tears start. Again, not helping the cacophony already going on in my brain. So, I’ll sit here and have inner fights with myself and try to be proactive until I either have to cancel or leave the house. It’s a toss up. Such is my life with chronic migraine and Fibromyalgia. Constant battles against myself. Hard to fight with little to no sleep. Still trying to carry on and always keep fighting! Comments and suggestions are always welcome! wpid-wp-1432820269510.jpeg