Daily Struggle To Live

wpid-wp-1432820269510.jpegwpid-wp-1421975721526.jpegIt’s not JUST a headache! It’s a Disability and should be treated as such! I’ve been unable to work for four years, stay in a constant state of severe pain, cognitive dysfunction, visual disturbances, nausea and vertigo. My symptoms have not been relieved by any treatment so far. These include homeopathic, chiropractic, acupuncture, yoga, biofeedback, vitamins and minerals, supplements, Botox, physical therapy, acupressure, ice, heat, 30+ medications including preventive, abortive, pills, injections, patches, narcotics, anti-inflammatory, anti-depressants, anti-anxiety, beta blockers, anti-seizure, anti-Parkinsons, nasal sprays, IV treatments, etc. I’ve seen neurologists, headache specialists, rheumatologist, sports medicine, Johns Hopkins University Headache Clinic, ER doctors, psychiatrists, etc. I have been fighting for SSDI Benefits for over three years, the past 10 months with the help of a lawyer. The average wait time in Virginia to go before a judge for an appeal hearing is 12-18 months. I can’t get Medicaid or any assistance at all until SSDI Benefits are approved. How am I expected to live?! Buy food, pay bills, get prescriptions, pay doctor co-pays and coinsurance?! There is something seriously wrong with the system. I have worked steadily for 30+ years and have paid into Social Security the entire time. Where are my benefits when I need them?! Why does it fall on me to have to prove how sick I am when multiple doctors already stated it as fact?! Why am I perceived as lazy, faking, and not sick enough to not work?! My illnesses are invisible. I don’t have cancer or anything that shows up on an MRI, CT scan, or blood work. So it’s my word against SSDI. I have to show them that I’m not able to work any type of paying job. To show them that I’m not just lying around the house, eating bonbons and watching soaps. I wish they could be here with me for a day. To see my struggle to get out of bed in the morning after little or no sleep. The pain in my back, hips, legs, head. The spasms, nausea, fear I won’t make it to the bathroom in time. The tears, the frustration, the anger. Taking handfuls of prescription pills, too nauseous to eat, but guaranteed to vomit if I don’t. The falls, which cause more pain. The fear that I won’t be able to get up. The furniture walking so I won’t fall when the dizziness hits. Skipping meds on the day of an appointment so I am in agony, but hopefully won’t get pulled over for driving erratically. The sunglasses and hat to block the light and glare, rain or shine. Hands over my head to hold back the pain. The paper bag in case I have to vomit. The fear of losing my license and being totally homebound, as I have no money for cabs and can’t use disabled transportation since I’m not “officially disabled. The uncontrollable crying that hits anytime, anyplace. The guilt, fear, loneliness, hopelessness that make me feel like giving up. My reasons to fight are fading from my mind in the face of each new day with no pain relief and no financial relief. But most of my suffering is done alone. I have no one to bear the burden for me. I will fight for my benefits at the hearing. I will try to convey how my life is a mockery of what it once was and maybe someday I could be whole again, with some assistance and empathy. I’m not asking for sympathy, just compassion for my situation. I only want what’s due to me, nothing more. Well, there’s my rant. I have to stop now as my head is pounding as usual and it’s time for more meds, which will blur my vision so I can’t write. I am trying my best to stay strong and positive and to keep fighting. It’s getting harder every day. I hope I’m strong enough for long enough. Thank y’all for reading and for your caring and support. My fundraiser is http://www.youcaring.com/AlwaysKeepFighting and my blog is carryonandalwayskeepfighting.wordpress.com 💔 Please help if able. My situation could just as easily have been yours.

Light At The End Of The Tunnel?!

Don't you cry no more!
Don’t you cry no more!

After an extremely severe bout of depression and hopelessness, I finally have a glimmer of light at the end of my tunnel! I saw my pain management doctor on Tuesday. We agreed that more aggressive treatment was needed. If my insurance company approves, I need an MRI of my neck to allow anesthesiologist to perform various nerve blocks and, if pain recedes, to “burn” nerve endings to stop migraine pain for at least 6mos., possibly permanently. Also waiting on approval for a Lidocaine/Ketamine nasal spray to be used daily as a preventive. Assuming procedures are approved, I’ll post the copay and coinsurance amounts, if not, I’ll post the cost for each procedure along with doctors documentation. If I can’t raise the money, I can’t do either option and doctor would like to try both. I’m still waiting for an appeal hearing date from SSDI. I cannot work and have no other form of income. I’d rather stay here in Virginia for the procedures, since doctor agreed to perform them, and save the cost of traveling to Philadelphia for an inpatient stay. Please help me find some relief from this never ending pain to allow me to live my life once again! Donate! I’m desperate and out of options! Any amount is a blessing and greatly appreciated! Anonymous welcome. Thank y’all for your caring and support! Always Keep Fighting!

Days Go By

I never realized how important routine and structure is in my daily life. That is, until I was without it. I’ve always either been in school or worked since I was a teenager. I had a reason to get up in the morning, a purpose, a goal, a means to an end. I’ve never been a “morning person”, but I’d always get up when the alarm went off. I worked jobs that I loved, jobs that I liked, jobs that I tolerated, and even jobs that I hated. They were all stepping stones in my path to where I thought I’d wind up in the future. I learned something from every job; some good things, some brilliant things, what to do, what not to do, and some things I’ll use for the rest of my life. Some things I incorporated into my personal life. Ethics, loyalty, reliability, punctuality, responsibility, and many others. Since my various illnesses caused me to leave my last job, I’ve been unable to return to the working world. I want to, I feel I have to, I just can’t, physically or emotionally right now. And that’s where the big problem comes in. Besides needing the income, the benefits, the “daily grind”, etc., I need the people contact. I crave it! I do not do well alone. I never have. I get too deep into my own head and that’s terrifying for me. I need to be around people and feel needed and have a sense of purpose. I need a routine and structure like some people need drugs. I feel lost and alone and empty. My days blend into one another until I don’t know if it’s day or night, weekday or weekend. I hate living in limbo like this. I need to find proper treatment, relief, a cure. I miss my life! It’s going on without me since time doesn’t stand still. I’m sad for the missed days, months, years, I’ll never get back. I don’t want to lose anymore time. Please help! http://www.youcaring.com/AlwaysKeepFighting wpid-wp-1432820304823.jpeg

Dark Days

wpid-wp-1423238659414.jpegSo, I’m on day five of an intractable migraine. That means I’ve had no relief from 9-10 pain, nausea, vertigo, insomnia, vomiting, stumbling, crying uncontrollably, and panic attacks for 5 days. I’ve tried ice packs, anti-nausea, anti-anxiety, Tramadol, Vicodin, Zohydro, Toradol oral and injections. And all combinations of those above. Nothing has touched it. That’s 120 hours, 7,200 minutes, and I can’t figure out how many seconds right now because my brain is not working. I’m beyond exhausted, stressed, depressed, and, I’ll admit, scared for myself. I am desperate, out of options, and not sure how much longer I can fight. Giving in and putting a stop to this endless pain sounds wonderful. I’ve been fighting for so long. I’m done. Please donate so I can try this last ditch inpatient treatment in Philadelphia. Go to http://www.youcaring.com/AlwaysKeepFighting to donate. Eery dollar is a blessing and greatly appreciated. Anonymous donations are fine.

I Wish I’d Known

Sarah Hackley, The Migraine Chronicles

http://www.themigrainechronicles.com

Sarah Hackley is an author, poet, bestselling editor, ghostwriter, and writing coach based in the Austin area. She is the author of “Finding Happiness with Migraines: A Do It Yourself Guide” and the Amazon women’s poetry bestseller “The Things We Lose.” She’s also appeared in numerous anthologies and magazines, including the “Women Awakening Anthology,” “The Bridges of America: Homeless Poetry Anthology,” and Creative Nonfiction magazine. “Preparing to Fly,” her finance book for women wishing to leave abusive partners, is scheduled for release in 2015. She is currently at work on her first novel.

An Open Letter to My Pre-Migraine Self #migraine #chronicillness
You are about to go through hell. In more ways than one.

You are going to spend your days in bed, squeezing your eyes together in pain because even the covers hurt. You are going to be too dizzy to stand, too nauseated to eat.

You are going to take pills that prevent you from eating. You are going to take pills that cause you to eat. You are going to lose too much weight. You are going to gain weight. You are going to drink too much. You are not going to be able to drink at all.

You are going to see pink dots circle around each other on your ceiling, pulsing in time to your heartbeat. You are going to experience moments when you feel larger than the houses you are driving past.

You are going to doubt your sanity.

You are going to get shots in the nerves of your neck, and feel more agony than you could have ever imagined.

You are going to lose your confidence in yourself.

You are going to lose yourself.

You are going to get depressed and anxious. You are going to wonder if you can take it, if living like this is worth it.

Let me tell you this: It is.

Yes, you are going to suffer. Yes, you are going to run up against the edges of what you can take, emotionally, physically, mentally. But, guess what? You are going to arise stronger, more authentically you.

Don’t get me wrong; this is going to take time. But, it will happen. Trust me. So, don’t worry about the future. Instead, do me a favor:

Go dancing, all night. To loud, thumping music that makes you throw back your head in laughter and delight.

Stay up until 3 a.m. talking and making love. Do it again the next day. And, the next.

Find out when all your favorite bands will be in town, and go see them. Stand near the front, where the smokers and dancers are, with a large pint of beer in your hand and a smile on your face.

Run, as fast and as far as you want to. Take hours-long walks in the summer sun. Spend all day hiking by the creek, and swimming at Barton Springs.

Take overnight trips to exotic destinations. Carry nothing but a small purse with you.

Eat bowl after bowl of queso, and slice after slice of four-cheese pizza. Eat as much of your favorite foods as you like.

Read all night long, even if you have to get up early to work.

Do these things.

Trust me. Do these things now, while you can, so you can enjoy the memories you make when you can do them no longer.

Little Victories

I cut my thumb the other day! Do I seem excited?! Well, I was! I was slicing a cucumber with one of those mandolin slicers and all of a sudden I felt my thumb go right over the blade. No, I’m not one of those people who get off on pain, I’d be dead by now if I were! But as I watched the blood gushing from my thumb, I felt a kind of satisfaction. My chronic, daily pain is invisible to myself and others. I feel it, can describe it, am sick with it, but it’s not visible. It gives others pause to think, “Is she really hurting THAT badly? Is she faking it? She can’t hurt like that every day!” I am used to playing my pain down when out and about because people honestly don’t want to hear bitching and moaning from others when they have their own issues and I understand that. I really do. So I say “I’m okay.” But when my thumb wouldn’t stop bleeding after 3 hours, I thought it might need a stitch or two. I wrapped it, cleaned the mess I’d left behind, and drove to a “doc in a box.” I walked in and happily explained what I did. The receptionist said, “Oh, you’re really bleeding, aren’t you?!” She probably thought I was insane when I smiled and said “Yes! Yes I am!“ I filled out my forms as others came and went, some stopping to say “that looks like it hurts!” Some looked nauseous when they saw the amount of blood. I think I was still smiling, sick as that sounds. I was taken into an exam room and the doctor came in and said, “Wow, that looks nasty! Does it hurt?” I told her not really, I just couldn’t get the bleeding to stop. She cleaned the wound out, which did hurt, then decided to use DermaBond (think Superglue) and a butterfly bandage. I thanked her, checked out, and left. I went to Target and saw people looking at my bandaged thumb and thought “It’s visible, they see it, they know I’m not imagining it, they know I’m not faking it!” It sounds absolutely ridiculous to the common person, but to anyone with migraines, fibromyalgia, Lupus, depression, anxiety, panic attacks, etc., you understand! The feeling of doubt, fear, embarrassment, shame, guilt for having an invisible illness that makes you have to prove it’s validity. To non-understanding friends, to non-empathetic doctors, nurses, psychiatrists, unfeeling insurance companies, and worst of all, Social Security Disability. SSDI, who will do their best to quash your claims, and try to prove that you’re faking an illness that has taken over your life. Controls every minute of every day, takes away your choices, leaves you an empty shell of who you once were. So, you’ll forgive me if I gloat a bit about my sliced thumb and bandage! I’ll probably even leave it on longer than necessary, but I’ve earned the right dammit! wpid-fb_img_1422635977059.jpg

Painsomnia

Another sleepless night, but brain running on all cylinders. I don’t know if it’s the pain or the exhaustion, but I’m thinking a lot about limitations. So many things I took for granted in my other life (before my medical and emotional condition(s) took over). I could go shopping at the spur of the moment. I could accept a date without worrying about cancelling. I could attend a concert and not be afraid that the noise and lights would be overpowering and I’d need to leave. Something as mundane as a trip to the pharmacy now has to be planned practically down to the minute. What time do I have to take which meds so I’ll be out of pain enough to go, but not too drugged to drive?! I’ve never been good at math or equations. Now I find myself working like a mad scientist trying to take 1/2 of this and a 1/4 of that two hours before leaving the house, or is it three hours?! It’s always hit or miss, as I refuse to drive without feeling alert enough to be safe and not get pulled over. Sometimes the timing works, sometimes it doesn’t. I cancel or miss more appointments than I make. I cancel or bail out on plans last minute, which thrills my few remaining friends to no end. My new life revolves around counting, measuring, timing, planning, and hoping. I hate it! I want to be spontaneous! I want to wake up, see an ad in the paper for an event, and just go! I guess I’ve taken so much for granted that when I lost the ability, it really hit me hard. I feel guilty, angry, sad, and any other number of emotions. None of them good. I want proper treatment, I want a cure, I want people to understand, empathize, at least belive me when I say my pain and suffering is real and debilitating. I want my life back! My biggest fear is that my inner demons will take over. I cannot allow that to happen! But they are so strong and they want to be in charge. It’s a daily fight and it’s exhausting! Severe pain and insomnia don’t help. Neither do depression and anxiety. I’d sell my soul for a pain-free day and a sleep-filled night at this point. Extreme?! Not to me. wpid-wp-1432820269510.jpeg