The Cost of Chronic Illness

I’m sitting here at 3 am wondering how many of us are going into debt due to our chronic illness. We lose so much of ourselves, our careers, our family and friends. There’s depression, anxiety, grief, and loss. But then there’s the actual monetary cost.

I’ve been unable to work since 2012. Since 2017 (after three denials and a lawyer’s help) I’ve been receiving total and permanent Disability payments for chronic daily migraine, Fibromyalgia, situational major depression, situational generalized anxiety disorder, and degenerative back and neck issues. This is my only source of income and places me well below the poverty level. But somehow I make too much money to qualify for Medicaid. This makes me responsible for the twenty percent of the bills that Medicare doesn’t cover.

For me, this includes co-pays for my prescriptions (many of which are outrageously priced and/or not covered by insurance), monthly psychiatrist visits (medication for depression and anxiety $25. per visit), my psychologist weekly for individual sessions and twice each month for group pain management sessions $6. per visit., and visits to my pain management doctor monthly (more often for trigger point injections, cortisone injections, therapies, and medication changes $30.-100. per visit). Not to mention Medicare yearly deductible ($233.) and yearly concierge fee ($1400.) for pain management. My pain management doctor is the only practice within 100 miles of my home that will prescribe the opioid that I need. (I’ve gone through many, many medication failures before resorting to opioid therapy.)

My pain management doctor recently referred me for physical hydrotherapy (in pool, non-weight bearing) to help with my muscle and joint pain. The recommendation is twice weekly to start with $30. copay each visit.

I haven’t even gotten to the items I’ve purchased to try and get some relief from my chronic, constant pain. Noise-cancelling headphones, migraine eyeglasses, blackout shades for my windows, ice packs, heating pads, cervical pillows, specialized lighting, just to name a few.

Then there’s my wishlist of items that would make my life better that I won’t ever be able to afford. Ice cap, weighted blanket for anxiety, Cefaly (or many of the other options for non-medication pain relief), etc.

I’m not whining or looking for pity. I am but one person going through the chaotic, challenging, horrifying life of a chronic pain patient. We are many, coming from all walks of life. To some, money isn’t an issue. To most, it’s critical and unattainable.

Something has to change. More comprehensive Medicare coverage, more realistic disability payments, assistance from drug companies and medical device companies….. Something. Anything to make our lives a bit easier to handle. Mentally, physically, and financially. Stay strong my fellow pain warriors. Always keep fighting.

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. 💜

Revelations 

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. 

Him

She lies huddled on the bed in the dark. Curled up in a defensive ball. Hands covering her ears. Eyes squeezed tightly shut. Shivering, trembling, terrified. Cheeks wet from silently shed tears. Alone. So alone. 

He waits outside the open bedroom door, leaning on the frame. The door has a lock, but she learned long ago that using it was pointless. He got in every time. He watches. Intent. Sensing her fear. Feeding from it. Becoming more powerful for it. Her hopelessness washes over him in waves. He smiles. 

She fought him for years. Fought with her very being. For control. Using her extensive, expensive arsenal of weapons. He defeated each one as if it were nothing. The guns jammed. The knives missed their mark. The arrows couldn’t pierce him. Still she tried. She was strong. He was stronger. 

The screaming was the part he enjoyed the most. She raged and threatened as long as she had breath left in her lungs. Then came the pleading, begging, bargaining. She only did it when she was close to giving up. It was all she had left. But he laughed at her. 

She remembered her life before he took charge. Before she became his prisoner. When she was her own person. She had a life, family, friends. One by one he took them all. Leaving her empty, exhausted, unable to fight back. 

But she tried. He admired her spirit and will. But he enjoyed breaking her even more. That was his job. And he excelled at his job. 

Maybe someday someone stronger than him would come along. To save her. To help her beat him. To chase him away. To soothe her broken body and mind. To let her live again. At peace. Maybe even smile again. But not today. 

Today chronic migraine wins again. He is her captor. She, his unwilling victim. 


Staying Positive? 

So. How do I stay positive when I am living with a chronic illness? Good question. And I wish there was an easy answer, but, like most situations dealing with chronic pain, there isn’t one. 

I deal. As best as I can. Every day brings a new beginning. A chance at a day better than the bad ones that came before. A possibly light pain day. Maybe somewhat productive. Hopefully I will be able to get through the “easy” parts without too much stress. Without tears. Without frustration and guilt and doubt. Without my demons mocking my every move. 

I start slowly. I sit up in bed at 4 am, per usual. Woken by either pain or insomnia or nightmares. I stay sitting for a few minutes. Cataloging each and every body part for pain, stiffness, numbness, or weakness. I put my feet on the floor and reevaluate. This small movement sometimes changes everything. I stand. Once again checking in with my body for help deciding my next move. 

Can I shower? Yes, if I’m careful. Can I wash my face and brush my teeth? Maybe. If I take it slow. Yes! Both chores done. Now I sit for a minute. I’m exhausted already. My head is starting its typical drumbeat. I consider my next move. Will I be able to go out? That involves getting dressed, putting on makeup, fixing my hair so it doesn’t look like I haven’t washed it in three or more days due to pain from the water on my head (i.e. allodynia.) My brain hurts. It’s too much. I sit back down on my bed. I haven’t even had my coffee yet and I’m ready to go back to sleep for the day. 

I push on. I take my morning meds. I’m currently at 9 pills. I need my coffee. I settle for clean underwear, sweats, and a t-shirt for now. I make it to the kitchen. Coffee is ready. I pour myself a cup and almost drop the milk as a pain from out of nowhere shoots through my elbow. Huh. That’s new. I grab the ice pack and head for the living room. (BTW, it’s 100 or so foot area I’m in, one floor, not a mansion wing!) 

I settle in my chair with the ice and reach for my heating pad for my neck. Pillows situated, I lean back and take a deep breath. I take my first sip of coffee and close my eyes for a minute. It’s now 4:30. Nothing has to be decided for a few hours yet. In that time, things may drastically change. 

My head pain may rocket from a 6 to a 9. The nausea and light and noise sensitivity may propel me to the bathroom for a time or even back into bed. My back might start spasming, which requires another pill. The side effects of the pills may cause a myriad of symptoms. I may be too unsteady, lightheaded, or nauseous to drive, in which case I have to skip going out. ParaTransit requires a day’s notice. (I never know how I’ll be until each day starts.) If I have an appointment, I may incur a charge for late cancelation. Money that I don’t have. 

Or I may be okay to drive. Even run a few errands. My back might cooperate and my symptoms may be mild to moderate, but not severe enough to stay home. Alternatively, symptoms may flare while I’m out, leaving me in the precarious situation of driving home after taking pain meds or waiting until I get home and the pain is beyond pills and I need to give myself a shot or go to the ER. It’s a coin toss. Every. Single. Day. 

So. How do I stay positive? Could you? It’s a daily struggle. Me against my demons. (Demons being my own body and mind conspiring to keep me from living the life I want to live.) Some days are better than others. Each morning I attempt to put the previous day behind me and begin anew. It’s not easy. But my will is strong. And as long as I push myself past my limits, I consider it a victory.