Sunday Morning

wp-1472456628575.jpegSo. Long time, no type. It’s been rough lately. A lot of things going on. Pain levels are high. Stress and anxiety levels are high. I wish I was high. Just kidding. Sort of…..

My pain doc thinks I’d be a perfect candidate for Medical Marijuana, but unfortunately it’s not legal here yet and not likely to be anytime soon. I’ve heard such positive feedback from so many chronic pain warriors out there with their experiences. To me it’s a no-brainer. As with any type of treatment, if the benefits outweigh the risks, try it. What’s to lose?

But until that happens, I’m stuck in limbo. Between severe, daily, chronic pain and failed treatments and deeper depression. I hate it here. Some have had amazing results from the new CGRP meds. I’ve tried two of them and sadly had to discontinue. One had bad side effects, the other gave me no relief. I’m trying to stay positive. There are a few left to try, but it’s a huge disappointment. I had put all of my hopes for a better future into these meds, knowing it could be years, even decades, before the next breakthrough in migraine treatment would be released. The fact that these were the first meds in decades to specifically target migraine disease had me SO hopeful.

The letdown was enormous and persists still today. Months later I’m still grieving the fact that I wasn’t one of the lucky ones. I question “why not me?” What did I do wrong to be made to suffer endlessly. Not even a little relief, a few pain-free days, hours, minutes….

But I’ll keep going because what choice do I have? My only alternative is to give up, drown in my pain, and fall into an even darker place in my own head. If that’s even possible. I’ll continue to fight as long as I’m able, and cheer for those lucky ones. The ones who get to finally see the light at the end of this nightmare-filled tunnel. And hope that one day I’ll be the lucky one and see my own light once more.

So. Ho hum. I once again wake up to news of multiple shootings around our country. Where’s the shock? Where’s the outrage? When did this horror show become commonplace in our lives? It didn’t used to be like this. People weren’t always so hate-filled, quick to violence, seemingly given a free pass to reign down their own form of Hell on innocent lives. They didn’t terrorize communities, take hostages at gunpoint in the most mundane, thought to be “safe” places. I know I wasn’t so aware of my surroundings at each stop on my daily routine. I wasn’t leery of entering a mall or a large box store. I didn’t hesitate to get out of my car to pump gas or pick up my mail. I didn’t think twice about going to a class or a movie or a restaurant. I do not want to live in this current America. I do not want this to be the new “normal.” I don’t want to see children taught how to escape a “school shooter” situation the same way they are taught science and math. I don’t want them to have to think “Will I make it home today?” I don’t want them to grow up scared about not “Which college do I choose?”, but “Will I be alive to go to college and get married and have my own children?” An entire generation is growing up unaware that this isn’t the only way. They are oblivious to the fact that this is not the usual and normal way to think and to live. And that is NOT ACCEPTABLE! Something has changed. Something is different. There’s an undercurrent of hate, fear, and violence that is usually reserved for movies and video games. But this isn’t an option. We can’t skip the movie or pick a different game to play. This is real life and our reality. It’s “A Clockwork Orange” on steroids. And it has to end! None of us know how long we will be here. We don’t know if we will die today, or next week, or many years down the road. But for whatever amount of time we have left, we should feel assured that it is extremely unlikely that we’ll be killed by an assault rifle. But it’s not that unlikely. It’s becoming more real every day that we allow this violence to continue. If not you personally, then a family member, a friend, an acquaintance or another person who was in the “wrong place.” Like a McDonald’s or a shopping mall or a school…. There are many people to blame for this horrific situation. Too many to name here, but I’ll choose one. @realDonaldTrump. You can stop reading right now, or block me, or reply to me with hate or denial. I can’t stop you. I do still have the right to free speech. For now. @realDonaldTrump, you are responsible for the climate of the country. You took on the responsibility for each and every citizen when you pledged your oath. You swore to protect us and keep us safe from harm from both foreign and domestic threats. But you haven’t. You failed. You use your “rallies” to incite (Google it!) hate and violence and bodily harm. You encourage your base of uneducated, overcompensating sheep (sorry sheep 🐑!) to go out and do terrible things to innocent people. You rev them up, turn them loose, and the rest of us pay the price. You have the power to stop this. You can change gun laws, make penalties more harsh for crimes, tell your followers enough is enough. But will you? Probably not. Not when these headlines of the “tragedy of the day” keep your name on everyone’s lips. You’ll take bad publicity over no publicity because that’s just who you are. Sad. I didn’t sign up for this. I, like many others, did not vote for you. You are not qualified for this job. You don’t have empathy, compassion, a working knowledge of politics, or the willingness to learn or listen to anyone but yourself. Selfishness and ego are not traits that the highest position in the land requires or needs. So. Here I sit. Reading today’s news of 4 dead at a yoga studio and a shooter on the loose on a school campus. And it’s not even dawn yet. I find myself crying. Not for the first time, but as a near daily occurrence. I cry for what was, what is, and what could be.

Chronic Pain Realities

How did chronic pain become shameful and stigmatized?

How has this become the “norm” in our country and society?

Why are we placed alongside drug seekers and criminals when all we want is pain relief from an unending nightmare?

When did we become “addicts” not patients?

Why are we being punished and denied basic needs?

How did suicide become the only way out of a treatable medical condition?

My life is worth more than this!

DAMN the FDA, CDC, CMA, and “Big Pharma” for this entire mess were in! Where’s the common decency? The sympathy? The empathy?

My only hope is that the people working for the above-mentioned organizations or someone they love develops a chronic pain condition and realizes for themselves the Hell we suffer EVERY SINGLE DAY just to survive!

Always keep fighting, my fellow chronic pain warriors!

Lost and Afraid

So. I have been in Pain Management for over six years now. In 2011, my migraine specialist had nothing left to offer, so I found myself in the terrifying world of pain clinics. I didn’t feel like I belonged there. Was I that sick? Did my condition(s) warrant this? I wasn’t a drug seeker! I didn’t want medication! I wanted alternative treatment, but I had tried it with no improvement.

These were my thoughts and perceptions of Pain Management at the time. After my first visit, I realized that I knew nothing.

My doctor was empathetic, compassionate, helpful, and positive. He listened to me. We discussed treatment options at length. Possible clinical trials I could join and new and exciting things down the road. I always left his office feeling more relaxed, confident, and hopeful.

So. Here we are six years later. I just received a letter from the pain management practice stating that Dr. H. was leaving the practice at the end of the month. I was devastated! I immediately burst into tears and was inconsolable for a few hours.

This man was a huge part of my small circle of support. He was my lifeline for pain relief, medication, future treatment and possibly even a cure. What will happen to me now?

I’ve called several practices, and no one can guarantee that they’ll take me on as a patient. If they do, they don’t even have openings until December.

I’m not able to stop my current meds without a long tapering routine, and am going to run out before a new doctor can see me. I’ve heard horror stories about people stopping cold turkey and almost dying. I would love nothing more than to find a drug free alternative, but not like this.

My anxiety is through the roof. My psychologist is moving out of the area at the end of this month and I’m already dreading that situation. Finding someone new that I feel comfortable with enough to open until about private issues is hard. Developing trust with a new person takes time.

I am feeling these losses as keenly as if they were deaths. Since becoming chronically ill, my support system has dropped off in great numbers. I’ve lost many people that I thought were dear friends because they couldn’t cope. So my doctors are a huge part of my life now. And stability is crucial.

I’m struggling to deal with everything and it feels like I’ll never be okay again. I’m scared, confused, overwhelmed, and angry! And alone! So damn alone!


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Can’t Win For Losing

So. I’m always being told that I need to be more active. To push myself more. To try harder. To go out even when my pain level is high. Even when symptoms are bad. Even when side effects have me in their grip. Just try. Give it a shot.

So I did. This morning I went out to my patio to garden a bit. I enjoy my flowers and being outside. It’s cooler today and there’s a beautiful breeze. I weeded a little. I watered everyone. I talked to my plants. (They don’t talk back!) I was out for less than 35 minutes. Yes, I checked.

I came inside and before I could even get to the sink to wash my hands, I was hit with a severe back spasm. It literally brought me to my knees. I sat on the floor for about 10 minutes crying and shaking from the pain. I couldn’t move. When it finally eased, I made it to the kitchen (all of 10 steps.) As I washed my hands and face, I felt a sharp stabbing in my hip area. I made it to the kitchen chair and sat down. It was agony. Stabbing, burning pain. I thought I for sure had torn something.

Eventually I made my way into my bedroom. I couldn’t take anything for the spasms or the other pain for another 2 hours. I sat on my bed and cried. Tears of pain, frustration, anger, sadness, so many emotions. THIS is why I stop trying. It’s not worth what I go through as a result.

My pain is daily. It is always there. The levels may change and I have bad days and better days. I don’t have good days. Ever!

This is my life. Until a cure or at least an effective treatment is found.

I DO try. I go to appointments feeling like shit. I get my Mom to her appointments without fail. We get to the food store, the pharmacy, out to eat on occasion.

This is my normal. It has been for 7 years. It didn’t start this bad. But it’s gotten continuously worse as time goes by. Yes I’m depressed. Yes I’m anxious. Who wouldn’t be in this situation? I think I do pretty well considering.

But then I’m told that I must exercise, I must push. I know my current limits. And I exceed them daily due to not wanting to disappoint or be a burden. I’m not weak. If anything I’m stronger for going through this nightmare.

So. I’ll cancel another appointment today as I lay in bed, unable to move without pain. I gave myself a shot, which at best will let me sleep for 2-3 hours. It’s all I have.

I’ll keep hoping for a breakthrough in pain management or a cure for chronic pain, Fibromyalgia, and chronic migraine. It’s out there, I know. Hopefully it will not be too long a wait.

Better days ahead, my fellow warriors. Much love. 💜


So. Long time, no update. Several things have changed recently. 

I found a new psychiatrist. I wanted to see if my meds were working well enough or if it was time for a change. He tested me for thyroid condition after stating that 4 out of 10 new patients were found to have an undiagnosed medical condition. 

Turns out that I have hypothyroidism. I had been tested previously as the symptoms were so similar to fibromyalgia, but my tests had been negative. Or so I thought. 

After starting on thyroid meds, I looked over my prior bloodwork results. Multiple times over the past few years, my numbers had been off. Three different doctors had neglected to inform me that my thyroid was under active at the time of the testing. 

I had researched hypothyroidism as a possible candidate for my many symptoms over the last five or so years. So many matched. Weight gain, fatigue, migraine, thinning hair, dry skin, insomnia, mood disorders, muscle and joint pain, feeling cold and/or hot, numbness in hands and feet, etc. I had suffered from all of these and more. 

It may sound crazy to say that I was “ecstatic” to find out that I had a thyroid condition, but for anyone suffering with an invisible illness, you understand. I had a name, a diagnosis, a treatment plan, and hope. For the first time in a very long time, I had hope. If my thyroid meds helped to ease even one symptom, I would be thrilled. 

Fingers crossed for much better days ahead! 

Not MY Life Anymore

So. It’s Friday. End of another week. It’s been a rough one. Five long pain-filled days. Five days of getting up every morning and failing to do what I set out to do. Five days of tears, anger, frustration, depression, and anxiety. Five days of not being in control of my own body and life. Five fucking days of hell. With no end in sight. This is my personal demon. This is migraine.