So. It’s 4:00am here. I’m sitting in my living room chair and my mind is racing as it tends to do. I’ve been up all night once again. Combination of pain, anxiety, and nightmares. My hat trick (hockey ref). It’s been a rough week. I’ve had multiple appointments and errands and actually managed to get them all done! Yay me! I’m not being sarcastic. I know, shocking right?! I’m actually proud of my accomplishments. I pushed myself hard to get everything completed and I’m feeling pride in myself. And that’s okay. My normal feelings haven’t been positive lately and I’m giving myself a break. It turns out that the little things really aren’t little. I did more last week than I did in the last 3 months or so. I didn’t feel any less pain, I just pushed through it. That’s not always possible, as I’m well aware. I’ve been an emo mess lately and the guilt, depression, and worthless feelings were taking over. I didn’t want to leave the house. I was exhausted, physically and mentally. I cried a lot. I over ate and hated on myself. So to be able to say that I accomplished everything I set out to do last week is big. Really big. And it gives me hope moving forward. One day at a time. Carry on my fellow warriors. Carry on. 💕

So. I’ve been busy going to various doctor appointments per my new internist. We are trying to rule out issues like anemia, low vitamin D, hypo or hyperthyroidism, Lyme disease, etc. I want my illness to turn out to be something we’ve previously overlooked and that can be cured or maintained with a daily pill. Wishful thinking. I’m glad everything has come back within normal limits or negative, but I’m also somewhat sad about it. I went back to the rheumatologist that I saw in 2008 and again in 2013. Dr. T. did a thorough rheumatologic exam. He also reviewed the extensive bloodwork that the internist ordered. He ruled out rheumatoid arthritis, Lupus, and or any other degenerative rheumatologic issue. Thank goodness! But that left us once again with Fibromyalgia (as a diagnosis of exclusion) as it had previously. I do have many symptoms of Fibro. The traveling joint, muscle, tendon, tissue pain and soreness, tender points, extreme fatigue, brain fog, etc. I tried Cymbalta with horrific results. I detailed that wonderful experience in a previous blog entry. So. Here we are. Fibromyalgia with no medication to ease symptoms. My plan is to try physical therapy and swimming. I’ll keep you posted. 

As for my migraines…. they are still chronic, daily, intractable, and have me ready to give up. But I won’t. Because if nothing else, this struggle has made me stronger than I’ve ever been before. I will continue to research, advocate, scream and yell if needed, until proper treatment or even a cure is found. I’ve turned this journey of pain and depression into my mission in life. I am a warrior! And this battle is mine to win! Carry on fellow warriors. Carry on. 

Sleep is my happy place. A place without worry or pain. An escape from reality. A place where good things happen and, usually, the bad things stay away. I do have nightmares. But thankfully I don’t often remember them. The good dreams seem to stay with me. More vivid and colorful. But what happens when you can’t sleep?! Painsomnia. So tired, and yet no sleep. No respite from my chronic daily pain. No break from my emotions. No time for my mind to stop rehashing the negative and remember the positive. I’m exhausted all the time. It’s a constant fight of mind over body or body over mind. I depend on these breaks. I need them to function. Without them, I’m lost. 

 

Shame

Stigma

Depression

Anxiety

Panic attacks

Loneliness

Guilt

Worthlessness

Fear

Doubt

Low or no self-esteem

Mourning for what used to be

Denial

Physical and mental exhaustion

Anger

(To be continued)

 

 

My life was friends, family, movies, concerts, museums, travel. Pretty much anything I wanted and could financially support. That usually wasn’t an issue. I had worked full-time since I was 17. I always had benefits, and the pay improved as the jobs did. I worked hard and learned various skills. I took college courses and tried to figure out what I wanted for a career. I jumped around from boarding kennel tech to dental assistant to bank teller to bartender to name a few. I wound up in the dental field for the largest part of my (up to now) career. I loved it and since I always found my way back to it, figured it was right for me. My most recent position was Dental Practice Manager. I was in charge of two offices and fifteen employees. It was both challenging and frustrating, and I loved every minute of it. I had my own office. I was in an authority position. I took managerial classes and kept learning. I was happy. I had travelled much of Europe, seen museums and art pieces I had dreamed of seeing in person. I had friends, went out to concerts, lunches, movies, dinners, and pretty much did whatever I chose. Life was good. Then the migraines started. And the chronic pain. And the insomnia. And the depression. And the panic attacks. And the guilt. And the feelings of worthlessness, loss of hope, loss of self. It occurred gradually, but steadily. I lost so much. My job was gone. “Friends” left. I was unable to travel. I had no income. I was fighting for disability benefits. I applied for “food stamps.” My social life became doctor appointments. My house became my safety net. The only place where I could control events and situations. Going out became a nightmare of overly bright lights, amplified noise, and bombardment of smells. I was in near constant pain and the meds to ease the pain caused horrible side effects. And now here I sit. Five years later. Still in chronic pain. Still waiting for relief. How is this my life?!

Guilt. So much guilt. Eating away at me. Crushing me body and soul. Always there. Drowning in it. Knowing my illnesses are beyond my control, but feeling guilty anyway. I didn’t ask for this life of pain. I wouldn’t wish it on my worst enemy. I don’t deserve it. I don’t want it. But I’m stuck with it. Yet I’m always apologizing. For not being able to do simple things. Missing appointments, cancelling plans, avoiding making plans. Not being able to work. Not being a productive member of society. Unable to contribute. Worthless, lonely, and so, so guilty.

So. My closest, best, most caring, loving, empathetic, sympathetic, generous, gracious, compassionate, giving, sweet friends/family live in my computer. I have a deep, fierce, passionate love for all of them. When I cannot get outside and handle “real life,” they are here for me. I can always reach out and find an instant support system right at my fingertips. They know my pain and still stay with me. They don’t judge, they listen and respond. They don’t disappear when life throws me more shit than I think I can possibly handle. They say “stay strong!” They send hugs and positive thoughts to me constantly. They’ve seen me at my worst and push me to be my best. They don’t deny, place blame, disapprove, doubt, or hurt me. They know more about me than some of my blood relatives and still love me. They tell me “family don’t end with blood!” They know my secrets, my aspirations, my goals, my hopes, my dreams. They don’t mock, discourage, or discount me for any of them. When I am down, they pick me up. When I say I can’t go on, they say “you are not alone!” When I’m crying from pain, depressed and anxious, they make me smile again. When my depression is so bad that I can’t stop crying, they say “you matter!” They amaze me, inspire me, and make me feel loved and important every day. They are my rocks, my sounding boards, my therapists, my conscious, my angels and devils. They entrust me with their stories and experiences as I share mine with them. If I disappear, however briefly, they find me. They won’t let me get lost. My friends are the epitome of what family and friendship is and should be. I love them all. And I’ve never met any of them. “Lay your weary head to rest, don’t you cry no more!” Carry on and #AlwaysKeepFighting #SPNFamily 💕

So. Sitting here, unable to sleep as usual, at 4 am on a Sunday. I’ve been following the horrific breaking news out of Orlando since 2:00. As the tears fall for the innocent victims and their families and friends, I can’t help but be grateful for what I have. Despite my multiple chronic illnesses, I am alive. I have my Mom (my biggest supporter and my rock), my emotional support furbaby Samantha (my 4-legged therapist), my few, but loyal friends (forever positive and always understanding), and my incredibly empathetic and caring online support system (without whose friendship I couldn’t even begin to get through this chapter of my life). I finally have some financial support from Disability benefits and can basically support myself while being unable to work. I have caring, empathetic doctors (finally! side note: fellow chronic pain warriors, don’t give up the search! They are difficult to find, but they DO exist!) to help me navigate the world of chronic pain and depression and hopefully together we will find effective treatment, if not a cure. I have medical insurance to help with cost of treatments, visits, and prescriptions. I have so much more than many others and am hugely grateful for all of it! I am able to walk, talk, see, hear, speak, think, and dream. Many aren’t. As my ever wise Mom has always said, “If everyone were to put their problems in a basket, they’d pull their own back out.” Stay strong fellow warriors! Fight for what you believe in! Be the change that you want to see in the world! My thoughts are with the victims, friends, and families of the horror in Orlando. #LoveIsLove #AlwaysKeepFighting 💕

So. I started a new preventive medication on Monday night. It’s supposed to help with migraine and insomnia. And love and behold, I slept a full eight hours Monday night! First time in months that I’ve gotten more than 3 or 4 hours of sleep in a row. To say I was thrilled would be putting it mildly. I was dizzy the next day and a bit hungover, but all in all, manageable. I took it again on Tuesday night with extremely high hopes. Unfortunately, I only slept for 4 hours and was awakened by the worst nightmare that I’ve ever experienced. I couldn’t even think about going back to sleep. I’m not too dizzy as I’m typing this, so hopefully that was just a temporary side effect. We’ll see as the day progresses. I’m not counting this med as a fail this soon. I’ve given up too early in the past on other meds and want to give this one a fair chance. It’s an older medication and, according to my doctor, well tolerated and effective. The nightmare has me terrified as I remember it clearly (I usually don’t!) and I really don’t want a repeat performance! I’m taking the med again tonight and am trying to avoid preconceived notions about the outcome. I started with the lowest dose and have a lot of room for trial and error. I am determined to find a preventive that works for me as I refuse to live out the entirety of my life on pain meds. I’m going into this in a positive frame of mind and with the projection of success. I’ll keep you posted. Stay strong fellow warriors! Carry on and always keep fighting! 

So. As I sit here on a rainy, windy, stormy Memorial day, I started thinking about migraine triggers. I never really gave them much thought. Once diagnosed with chronic daily migraines, I stayed away from certain foods and ingredients (red wine, aged cheese, nitrites, and sulfates) as a rule. I stopped using artificial sweeteners, and avoided excess caffeine and chocolate. I will never give the last two things up completely! Life is too short! I have had horrific allergies since moving South and take meds and weekly shots for them. I know to shut my bedroom window at night and go out early in the morning before pollen is too bad. I brush my emotional support cat Samantha several times daily to keep her dander down. Plus she loves it! 😼 I am extremely sensitive to bright light and loud noises. I wear my sunglasses indoors when needed and outdoors in all weather to cut glare. I wear a hat occasionally, but not a big fan. When the landscapers come around and I’m home, I wear noise-cancelling headphones to block them out. I carry earplugs in my purse. I try to plan for any and all situations, but unfortunately cannot predict them all. The random thunderclap, car alarm, loud PA system announcement, etc. make me jump like I’ve been shot. Smells are more difficult to control. A sniff of someone’s perfume can send me reeling. (Tip: eucalyptus oil rubbed under the nose before entering a space does block to some extent) A good day (4-5 pain level) can be ruined by just walking by the detergent or spice aisle. I do try to eat regular balanced meals at the same time daily, but depending on pain and nausea, cannot always do so. I realize how important regular, restive sleep is for my physical and emotional health. I have chronic insomnia so that is often not possible. I try to exercise, take walks, but pain and exhaustion hold me back. I often experience worsening pain after light exercise. There is nothing to be done for what I’ve found is my worst trigger. Barometric pressure. Cold fronts, warm fronts, storms, any change at all leaves me stuck at home, usually in bed, in the dark and quiet. It’s no wonder I get depressed and anxious when faced with leaving the house. I have no control out in the world. I am constantly bombarded by light, sound, weather, and smells that paralyze me and send me running for home. My safe place. The only place I feel somewhat in charge of my own life. Such as it is. But I know I can’t stay in forever. I’m already watching my life pass me by and unable to be an active participant. I push! I do! I go out when I should be home. Because in the back of my mind is always the idea that if I don’t, I’ll wind up unable to leave my house. I will avoid that at all costs! The disease and the struggle are real. But I will prevail. I must! #AlwaysKeepFighting 💕