2017

So. It’s the first day of the new year. Page one of a new book. A fresh start. Time for resolutions and new goals. I wanted a different story for 2017. A better story. A most definitely less pain-filled story. A happier, positive, fun story. 

The main character would throw off the burden of chronic pain and depression and begin to sing and dance just like in a big Broadway musical. Backup dancers would join in,the orchestra would break into what would become a top ten hit, and the entire thing would be in glorious technicolor! Our hero had overcome extreme circumstances and come out on the other side with no scars! 

But, unfortunately, this is real life. Not a fantasy. Not a dream to wake up from as an entirely different version of myself. I am who I am. I am disabled. I am depressed. I am in near constant pain. I don’t sleep, so dreams don’t give me much chance to escape. Which hurts. I’d like to escape, even temporarily, to give myself a break. An escape from the constant worry, the what ifs, the guilt, and the pain. Physical and emotional. 

I do my best to get up every morning with a positive mindset. Today, I think. Today I will be productive. I’ll get things done. I will go out and run errands. I’ll try a new restaurant. I’ll catch that new movie everyone’s talking about. I’ll join a gym. I’ll plan a trip. 

Some days I’m successful. Those are the good days. The days I concentrate on and remember when the bad days hit. The days when I can’t get out of bed. When I’ve been up all night, 10+ pain level, back spasms, crying from the heavy weight on my heart. The worst days. The days I want most to forget, but the ones that stand out the strongest. 

I try to look forward, not back. I’m better at that than I used to be. But as the months turn into years, and the episodic turn to chronic, it’s more difficult. Difficult to find reasons to get up. Difficult to not just say “Screw it! I’m done!” 

But I won’t give up. See, I know me. Better than anyone. And if nothing else, these illnesses have made me stronger than I ever thought possible. I won’t back down! I will continue to search for treatment, relief, and eventually, a cure. I’ve made this my mission in life. For me and others like me. I will continue to look my demons straight in the eye and say “Bring it on! I got this!” 

So. Happy 2017! Let’s make this the year we find successful treatment for our illnesses! 

Carry on my fellow warriors! Carry on and always keep fighting! 💜 

Lost Friends

So. Prior to my chronic medical issues, I had friends. Work friends. Casual friends. One who I loved like a sister. Some I saw daily, some on rare occasions, some came in and out of my life through the years. 

Once my waning health made it impossible to keep working, my friends changed. Or I changed. Or now that I can look back at that time more rationally, less emotionally, we all changed. Some stayed, some left. Some I neglected, some neglected me. Some I tried desperately to hold on to, others, I let drift away. Not returning calls, invitations, texts, basically avoiding any and all contact. Some avoided me. Probably tired of my constant excuses, cancellations, complaining. 

Looking back, no one is to blame. My life changed when my health did. There were things I was no longer able to do, places I couldn’t go, times I couldn’t get out of bed or answer the phone. Some friends tried harder than others. Told me it was okay, they understood, empathized, and missed me. 

Others, my “sister,” simply disappeared and refused contact. She broke my heart and destroyed my trust. We had shared everything. Saw each other almost daily, traveled, spent all of our free time together. We spoke on the phone or texted long conversations about any and everything. Dreams, hopes, fears, history, plans for the future.

 But then I got sick. And I don’t think she could handle it. I’ll never know her reasons for sure, but for a long time I blamed myself. I wasn’t there for her when she needed me. I couldn’t help her with things like I used to do. I felt horrible. And guilty. Like I abandoned HER! 

Now, after deep introspection (and intense therapy), I know I was not to blame. My illness was beyond my control. I pushed myself hard through incredible pain to keep our friendship alive. Was she aware of this? I don’t know. She had accompanied me to many doctor appointments and knew the extent of my chronic pain issues. I backed out of plans and had to cancel events, but she had to know how hard I tried not to. 

I understand that some people are so uncomfortable around sickness and disease that they honestly can’t deal. I get that! I do! But it still hurts! And what hurts the most is that I’ll never be sure what really happened. I know I have to move past it, stop blaming myself, stop feeling guilty or at fault. 

This is not the life I planned to live, it just happened. I’m still praying for a treatment that works or even a cure. I still plan to return to the working world when able. But I’ll always be careful with my feelings and giving my heart to new people. I hate that I will always be leery and hesitant to make new friends. I hate her for doing that to me! But I still miss her. 

Better days ahead fellow chronic pain warriors! My hope for you is friends and family that are loving, caring, empathetic, and love you too much to give up on you! 💜 

A Friday in December

So. I’ve been up since yesterday. No sleep. No relief. No lack of pain, anxiety, depression, aggravation, and fear.

Tried relaxation, deep breathing, visualizing peaceful scenes, etc. No luck. Pressure point, trigger point, massage, foot bath, heating pad, ice packs, but nope.

My demons are stubborn. They like to win. Not just win, but beat me into submission. Leave me in tears and ready to give up. They are relentless in their mission.

But guess what? I’m stronger. I’m a challenge to my demons. They expect me to fall apart and wind up in a ball on the floor. But I shock them daily as I rise up and face them head on. I may not be able to do everything that I want or need to do, but I’ll push my body and my mind to their limit I will win! Not today you bastards! Not today!

Carry on my fellow chronic pain warriors! We got this! šŸ’•

Allodynia

Another wonderfully cruel symptom of Fibromyalgia. Everything hurts. Brushing my hair, wearing clothes, breathing. Showering is torture. Bending to tie my shoe is agony. It sucks. And there’s no treatment. #ChronicPain #ChronicLife #StopTheStigma #LearnTheFacts

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True American Horror Story

So. I woke up depressed, teary, terrified, questioning everything I thought I knew. In addition to my usual chronic migraine pain and body aches, I now had to figure out how to go on from here. I didn’t want to get out of bed. My bed is my safe place. Always has been. Always will be. I can temporarily hide from reality. But only for awhile. Life goes on. It’s my only choice. Get up and deal with the situation the best way I can. So I got up, had coffee, turned on the TV, picked up my tablet, and it hit me. From every direction. This is real. This is reality. No do-overs. No going back in time to just yesterday, when things were manageable. When things made sense to me. When I had trust and faith in my country and it’s people. 

I did what I could. I voted. I shared facts and opinions with friends and followers. I truly believed that we as a people would make the right choice. In my opinion, the only choice. The SANE choice. The choice that would allow me to be sure that my rights wouldn’t be trampled on and taken away. That my disability benefits wouldn’t disappear. That I wouldn’t lose my affordable medical insurance that I so badly need. That everything I had grown up believing in wouldn’t be crushed under a hate-filled, bigoted, racist, fear-mongering heel. 

I sincerely don’t know where to go from here. I’m scared to leave my house. I’m scared of the blatant hatred, antisemitism, and fear that this decision has made a matter of fact. I feel lost, unsure, unstable, beaten, and defeated. This has rocked my entire existence to its core. I don’t know what to think. My future? Do I have one? Will I lose everything that I took for granted just yesterday? Can I push past my fear and go on? Honestly, right now, I don’t even know. Very hard to carry on at this time. 

AcceptanceĀ 

So. November already. Time flies when you spend much of it in pain and/or trying to sleep to forget pain. I was so relieved when I was finally (after a long, stress-filled fight) approved for Disability benefits. But I hadn’t thought that far ahead in the whole scheme of things. Disabled. I was officially qualified as disabled. The Judge ruled me as “Totally and Permanently Disabled.” What the hell?! The last three plus years of doctors, tests, diagnoses, treatments, medications, depression, anxiety, and stress hadn’t adequately prepared me for the final outcome. A label. A stigma. An end? I felt like a different person from that day forward. I was immensely relieved for the financial support, but devastated at the reason for it. This was one year ago. I’ve learned a lot since then. With the help of a wonderful pain management doctor and a stellar psychologist, I’ve begun to put things into perspective. No, I’m not the same person as I was before these illnesses took over my life. No, I can’t do a lot of the things that I used to take for granted. But I’m still me. I still matter. I have a good life, a home, the most supportive, strong, loving Mother in the world, my emotional support furbaby, some close friends, and hope. Hope for a better tomorrow. New treatment, medication, possibly even a cure someday. And as long as I have these crucial components in my life, I’ll always keep fighting! Better days ahead my friends! Carry on! 💜 

So. Here I am again. Sitting in the living room at o’dark thirty. It’s so quiet. Peaceful. I’ve got my furbaby Samantha sleeping on the couch next to me. One paw touching my leg. She’s snoring softly. So relaxed. I’m jealous. YES, jealous. Of a CAT! I know, right?! I must be crazy. But the thought of being that relaxed, at ease, mindless, just doing what comes naturally. I want that. I need that! I can’t remember the last time I slept soundly. Solidly. Without nightmares. Without dreams. Just deep, restorative sleep. Letting my mind and body rest. Recover. Heal. Strengthen. Prepare for tomorrow. So yeah, I’m jealous. I envy Sam her oblivion. Her body telling her what to do without thought. Without care. Without will. Without anything. Just being. I want that for myself. I want to turn off my brain and just be. Breathe without consciousness. No worries. No stress. No pain. Please.Ā