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! 💕

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

wpid-wp-1432820304823.jpegSo. 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. 

Acceptance 

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. 

Rainy Day Blues

So. It’s been raining here for 4 or 5 days straight. Almost nonstop. Sometimes torrential, sometimes gentle showers, but steady drips. My migraine brain does not approve of this wet weather. The fronts and barometric pressure. The ups and downs. I hurt. So much. Stabbing, throbbing, icepick, axe, and numerous other torture devices reverberating throughout my skull. Every step hurts. Sitting still hurts. Laying down hurts. Breathing hurts. Life hurts. 

This stormy weather also ramps up my depression and anxiety. I am hyper aware of my emotions. I cry easily and for no obvious reason. I get angry and lash out. I get scared and stay in bed in the dark. I think too much. I look back and regret. I look forward and fear the future. My present situation is no picnic either. 

My meds don’t seem to work very well when I get like this. I don’t sleep well anyway, and the continuous pain keeps me from restorative, deep, healing slumber. I don’t want to go out. Safety concerns because of the flooding and my current frame of mind won’t permit me to drive. So I’m home. My safe haven anyway. My emotional support furbaby Samantha is here as is my Mom, my rock. They try to help, but the funk persists along with the steady pain. 

I’m hoping to see the sun in the next day or so. I need to get out and get some sunlight on my face. Eyes closed of course, due to the migraines. I take extra Vitamin D all year, which is supposed to help with mood, pain, and inflammation. Here’s hoping. Anyway, this too shall pass. I hope y’all are faring well and staying strong. Carry on my fellow warriors. Carry on. 

Another Week Down

So. Another week down. I’ve had ups and downs. As usual. Doctor appointment on Thursday. Mom and I found out we had been exposed to Hepatitis A through Egyptian strawberries from Tropical Smoothie. Doctor was concerned because I take statins, which process through the liver. Also, my opiates do the same. I don’t need any liver function issues. So we had to go and get Hep A vaccines 30 minutes away from the only “Doc In A Box” that had it. Another shot in 6 months and we’re covered for life. I had to cancel several other doctor appointments for fear of spreading the virus to others. So I’ll be playing catch up for the next few weeks. Oh well, crisis averted. 

I finally had my sleep consult which took me almost 3 months to get. The Nurse Practitioner explained that my meds alone can cause erratic, fragmented, nightmare-filled, non-restorative sleep. Add to that the chronic migraine and Fibro, which both cause insomnia, elusive sleep, and night sweats and we have a party! *holding up sarcasm sign* I have to go in October and spend the night. Should be interesting since I have painsomnia and rarely sleep. If I have obstructive sleep apnea, it can be treated with forced oxygen from a CPAP machine. It scares me to think I may stop breathing numerous times during the night. If the study is inconclusive, I may need to return for an additional one. We shall see. 

It’s definitely been an interesting, albeit hard week. I’ve had 8+ migraine pain every day. More nausea than usual, which makes it nerve wracking to leave the house. Fibro flares caused excruciating pain and numbness in my wrist. I kept dropping things and made some quite spectacular catches and some even more spectacular fails. Thank goodness Samantha was there to clean up the food spills! (happy Tuxedo cat!) The wrist pain left as quickly as it came and has currently settled in my hip and thigh. Alternating heat and ice now. It’s like spinning the body part “wheel of pain!” Never knowing where it will stop. 

I did manage to go food shopping. Unfortunately, it was at Walmart. I have a hate/hate relationship with Walmart. Mom needed prescriptions filled and for some reason decided WallyWorld was the best choice. Never again! EVER! After waiting 20 minutes at the pharmacy, we were told the doctor had not written instructions for med. I showed her the instructions were written on another script and she said “but they’re on the wrong one!” She proceeded to call the doctor’s office and ask them to fax correct instructions on correct rx. Srsly?! 😕 I would have left, but the thought of having to return filled me with pain and nausea worse than my worst migraine. Another 20 minutes crawled by. I called Doc’s office and was told orders had been faxed 30 minutes ago. This led to a she said/she said argument. Pharmacist finally told us she could fill our order now. I decided to check out our groceries since they’d been in the cart this entire time. I told Mom I’d meeting her back at the pharmacy. Only one checkout aisle was open (of course!) I felt my anxiety rising by this time. Mom called me and said she had to go to the back of the line as her order was “not fully prepared.” That did it! I started to tear up! The cashier asked if I was okay and that just made it worse. Looking back, I had what I now think was the onset of a panic attack/migraine sensory-overload in Aisle something or other earlier. I was sweating, chilled, shaking, and my heart was racing. Every light, sound, and smell practically brought me to my knees. After an hour and a half, we finally made it out of Hell! I said to Mom that I was done for the week. Thankfully, she totally understands as she lives through these episodes with me. I broke out in tears once again on the ride home. Relieved, embarrassed (from the looks and stares I received from rude people), and anxious to get home. Once home, I took my meds, closed the blackout shades, got into bed, put an ice pack behind my head, called for Samantha, and eventually passed out. 

So. As this fun-filled week draws to a close, I’ve decided that I may never leave my house again! At least not to go to Hellmart! Carry on fellow pain warriors. And always keep fighting! 💜 


3 a.m.

The bane of my existence. Threevil. My demons time to come out to play. I lie in bed. I toss and turn. I’m hot, then cold. I’m so tired, but can’t sleep. My brain hurts. My body aches. Everything is turned up to a ten. Or eleven. My pain scale goes so very high. I would weep with joy for a nine. For a few blessed hours of real sleep. REM sleep. Restorative sleep. Dreamless sleep. Or at least no nightmares. Terror-filled nightmares of pain and suffering that jerk me out of sleep. My heart pounding. Soaking wet and shaking with fear. Half remembering what I dreamt of, praying to forget the rest. But I wake to pain as well. There’s no escape, even in my dreams. I used to dream of wonderful days and events and experiences. Happy times. But my demons took that away too. Along with my ability to work, travel, go to a movie, concert, or see a play. Even on those rare, treasured days that my pain is bearable (6 or 7), I stress so much about being out and unable to cope that I wind up staying home. My safe place. My controlled environment. Not to say there’s no pain at home. But I have my blackout curtains, my meds, ice pack, heating pad, TENS unit, headphones, and my emotional support furbaby Samantha. I’m as close to comfortable at home as I can be. So. Back to 3 a.m. When my thoughts run wild, the negativity and doubt cannot be buried or pushed away. I cry from the pain, the loneliness, the fear, the lost days. The demons laugh. They’ve won this round. I’m too tired to fight. Maybe tomorrow. Carry on.