The Dark Side


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2-17-14

Chronic Diseases bring out The Dark Side in everyone. The person suffering one or multiple Chronic Illnesses (until they recognize and correct their attitude-if and when they do) family, friends and significant life partners-loved ones, co-workers, bosses, clients (customers) health care providers (nurses, receptionists, doctors, PT therapists, nurse practitioners, massage therapists etc). Anyone and everyone in the public and those in support groups-Facebook, Twitter (etc).

Egos are at play, how people are raised are a major key issue. Were they in a loving, stable, emotionally secure family situation. Or was it unstable, emotionally lacking in love, emotionally abusive by one or both parents. Was one parent an absentee parent-always missing to avoid the other parent due to issues in the marriage-lack of a true loving emotional bond, or to avoid confrontation to the dysfunction family situation due to their “own” dysfunction family upbringing. Or missing due to being the sole bread-winner, death, divorce or non-traditional marriage/relationship as in the past year status quo? Some dynamics in relationships and personalities in people make them seem almost emotionless, backstabbing, unloving, unstable or downright evil.

evil

So why do people act this way? Why do people reject those who are chronically ill? Why do they choose to disbelieve those who are chronically sick? Why do they always put those who are sick to the test time and time again, and yet those who are NOT sick seem to get away with anything like calling off sick from work with hangovers or trivial things, while those who are truly sick are discriminated against enough for employers to legally get away with it. Sometimes to the point of pressuring employees to quit so they don’t have to fire them, getting away with not having to pay unemployment and thus not having to come under fire with breaking any discrimination laws.

That was how I “forced” to leave my job. That and I was indeed becoming more chronically ill at the same time. I do believe my cesspool of a job was triggering my illness to come on at a rapid speed. Not that it wasn’t there before simmering and boiling and occasionally acting up on occasion giving them fuel to toss onto the slow burning fire. But I was a longtime loyal, dedicated, hardworking employee with morals and standards. I did not believe in what had become the new “norm” called brown-nosing instead of actually working. The so-called “team leaders” got their jobs that way instead of actually earning their jobs, and they kept their positions that way, making us peons do the dirty work and they took the credit while they shopped online at Amazon, eBay and checked their own Facebook and Twitter accounts, or texted on their cellphones to each other or their then boyfriends who became husbands or live in significant other half. occasionally we’d have to work out-of-town on “jobs” and on the way home after injuring my shoulder I started to complain of pain. The “team leader” was so busy trying to text her boyfriend whom she must have been afraid was doing something other than what he said he was doing (she was texting him during the “job” too but was I allowed to say anything afterwards-NO) and on my other side was the mother of another team leader who had to stay “mum” as to “protect” the business you know. Well the next business day (this job was on a Sunday) I reported my injury to HR. Well later in the morning I was told that since I didn’t report it ASAP as soon as it happened I could NOT file workman’s comp for on the job injury. When I stated I did complain I was told that lo and behold “no one recalled my saying anything”. Then HR said she had to quote “do what she had to in order to protect the company”.

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So goes to show when someone wants you out of the job, out of their lives or make it as hard for you as they want (intentionally or not) there may or may not be much you can do about it. As for my job as the pressure on me was increased I had my doctor put me on FMLA then Temporary Medical Disability which was extended. I then filed for SSD. I was denied. My husband was against my going on temporary disability and FMLA. I got NO emotional support from him at all as my disease progressed from episodic to intractable daily occipital migraines and panic attacks. He did not and would not understand. Stems back from the childhood he was raised in. This was really brought home again this weekend after he was gone for a week in Florida.

I got a Total Gym Platinum Plus with 8 attachments & 4 DVD’s to duplicate the pulley exercises I learned in PT last year. I have bad Fibro, CFS, Peripheral Neuropathy as well as long-standing Occipital Chronic Migraines, Occipital Neuralgia, DDD, Cervical Osteoarthritis, etc. I CANNOT do strenuous exercise as I’ve told him time and time again. Someone else in his family has fibro and it’s always poor so and so. She doesn’t do anything major around the house-her poor hubby who is a saint does, w/o complaint or thanks does and his health is not that great does so-does he get credit. NO. Does he drop the F bomb when he does so w/o being asked. NO. I have several issues and several food intolerance/allergies and I cannot help it I have chronic diseases that prevent me from doing things-like mowing almost 2 acres-granted I could not do for most of last summer, but SHE has NEVER mowed. But I get hell for not doing a lot and when someone “else” around this house (he) has to do something the “F” bomb goes off like crazy as well as a slew of other blue words and negativity galore. Of course in that household as they were growing up chronic illness was NOT tolerated as 1 child was blacklisted and outcast due to a serious illness (life threatening asthma) by her own mother who raised 2 of her children to hate the 1 who had the asthma, and turned them against the sick one & still to this day blames her OWN daughter for disrupting mommies life with being so sick as a child!! She blamed her for everything-for things that went missing-she must have taken it-even as an adult when she moved out of the house and was never allowed a key, somehow she mysteriously vaporized into the house and took valuable rings (that mother dearest misplaced & later found but no, no that could not be bad sick daughter that disrupted her life took them & must have come in when she wasn’t there & put them back, geese) It’s a wonder she let her live to adulthood! Anyway I’ve been made an outcast also, just to give you and idea why giving you a “taste” of the family history. Anyway my Total Gym isn’t good enough for him so it’s just not good enough so I have to send it back I was told as it was “junk”. Well Bull flipping #hit!! NO #ucking way am I sending it back!! It’s set up on 6 month easy pay. It’s in the convenience of my home so with my CFS I don’t have to worry about falling asleep like I did w/PT on the way home or during my sessions and if I get too fatigued during my workout I can pause and start-up later! I’m tired of making some thick-headed insensitive dense people understand. I will continue and try NOT to be bitter, but I do need my outlet and to vent. Thank you for letting me do that here on my safe haven. But it still feels like a daily battle of good vs. evil.

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As for social media you come into that as well unfortunately. There is a pecking order sometimes and you come across those who may feel jealous or feel more superior to you and want to push you to your limit or others that you have come to love and admire. And a few years ago if you had asked me if you can build real lasting friendships on Facebook I would have laughed in your face and said hell no. But now I’m here to say you most definitely can. I have met some really amazing people on Facebook through some support groups I have been a part of and I’m still in. One I can speak of as its public but restricted as you can only be invited into is Chronic Migraine Awareness-CMA. A couple of others I’m just a member of are Migraine related are private and by invitation only and I cannot mention those names. They are pretty awesome. 2 groups I am co-administrator on and they are private. There are some really amazing people in those groups and I have made some really super amazing friendships there and some really close bonds the past year or so. I have also had a few clashes with a person or 2 that were not solely about building people up, but about power struggles, superiority, ego bashing, back stabbing-it was almost like my toxic work situation all over again but in cyberspace. Just when you think you find a safe haven……………………………………………… Moral of the story is you can trust but at the same time watch your back and always, ALWAYS trust your instinct. If your gut is telling you something is amiss, trust your gut-it is rarely wrong. Save yourself from an ensuing bloodbath and free-for-all that will be up for public display that is out of your control.

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Values

Until next time sending you all blessings, love, hugs and prayers. Julie

DISCLAIMER:

Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and I enjoy sharing experiences and news about Chronic Pain Conditions. Please consult your own health care providers for advice on your own unique situations and do not take any information on this site as a Diagnostic Tool or Procedure for your signs or symptoms. I will not be held liable for any misinterpretation you may misconstrue from any presented information on this informational only page.

The Life of this Chronic Migraine Sufferer: Like a Soap Opera many Plot Twists and Turns


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11-7-13

When life throws you for a loop, after years of fighting chronic pain, you either curl up in a fetal position and take it or learn to stand up and fight back. After years of fighting Migraines, then tossing in SVT, IBS, OCD, SAD, Depression, PTSD and add FM and CFS for good measure and stir up the pot and let it simmer and stew you have a nice Chronic Invisible Disease Stew sewer sludge. Add to that lots of Stigma, idiots who like to throw in 2 cents worth of advice they really cannot afford to give away as they have no idea what the heck they are commenting on, or for that matter, they have no education or knowledge on the topic they are knocking or giving so-called advice on, and the stew of sludge just simmer and boils more. The chronic pain builds and no relief. The anger over the idiots and retards with their so-called “health” advice over neurological and genetic conditions and the Stigma just abounds and astounds me more and more.

http://migraine.com/blog/invisible-illness/

http://stanfordhospital.org/clinicsmedServices/COE/neuro/headache/patients/faq.html

http://www.ninds.nih.gov/disorders/migraine/migraine.htm

http://www.helpforheadaches.com/articles/mx-stroke-risk.htm

Couple that with the idiotic uneducated so-called “expert” specialists I’ve seen over the years who have not only mismanaged me but mishandled my so-called healthcare as well. I’m not a slouch, not a “couch potato”, not a “junk food addict”. In fact I go out of my way to avoid fast food. I avoid a slew of food triggers-high tyramine, high histamine, MSG and hidden sources, Soy and hidden sources, Gluten and hidden sources, Dairy and hidden sources, Red food dye, Nitrates and Nitrites-all proven food triggers for me for my Migraines and IBS/Fibro triggers. I have strict food control. I cannot eat anything pre-packaged, frozen, canned, dried-I must eat everything freshly prepared. I have to steer clear of most chicken and turkey products that have “chicken broth” injected as that has MSG even though it says “no MSG” added there are “hidden forms of MSG such as “yeast protein” and other hidden sources. The food manufactures can get away with the outright lie of saying NO MSG ADDED as long as the words MSG do not appear on the label, but they can use other hidden sources. The “truth in labeling” campaign does not exist. Same goes for Gluten and Dairy. I have been more careful the past 10-15 years of what I eat than I have ever been. So I dare anyone to tell me to eat any healthier! Bah to them I have gone Caffeine free even after years of being a coffee and cola addict. And nix to chocolate, even though it hasn’t proven to be my trigger why take any more chances. Why toss gas to an already raging fire I say? Better to eliminate all known triggers and any and all “possible” triggers to be safer than sorry.

http://www.tacanow.org/family-resources/hidden-sources-of-gluten/

http://rense.com/general92/hidename.html

http://naturalandfree.blogspot.com/p/alternative-names-for-soy-and-soy-free.html

http://www.balancedconcepts.net/3moprog/dairy_sources.pdf

http://www.red40.com/pages/foods/index.html

So when ignorant people bash Migraine sufferers about diet at first it irritates me, angers me, then it just goes to show how stupid they are and how idiotic they are because they really don’t know. They don’t know how restricted our diets are and how careful we have to be and how much we have to cut out and how much we have to be careful and how we have to be wary of every spoonful, forkful and every meal is a challenge. Every holiday is an ordeal, a challenge and a major obstacle to those of us who cannot eat what others take for granted and call “normal” holiday fare as it will put us in a major tailspin and make us so horribly sick and not just with unspeakable horrible head pain. But also unspeakable visual aura’s, sensitivity to light, smells, sound-dizziness to rival that of a drunken spree (not that we’d know as alcohol is forbidden and on the no-no list) balance issues, trouble making sentences, bowel issues, sensitivity to temperatures (chills or episodes of heat spells) clamminess, numbness in limbs or face, symptoms similar to a stroke. Migraines are in fact, despite constant how often many unbelievers dispute, they ARE genetic and neurological and they can be severe enough that they can cause strokes. If someone is going to comment on someone’s blog, PLEASE take the time to get some education FIRST on the subject matter BEFORE you spout off. You don’t want to show off your ignorance anymore than what you already are. I mean, why shoot yourself in the foot on the Internet for all the world to see?

http://migraine.com/blog/top-10-myths-about-migraine/

http://www.healthcentral.com/migraine/cf/slideshows/10-things-not-to-say-to-a-person-with-migraines?ap=830

http://www.migraineresearchfoundation.org/about-migraine.html

http://www.americanmigrainefoundation.org/about-migraine/

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/vestibular/conditions/vestibular_migraine.html

And all this while being the good patient that I am, keeping my Migraine Diary and Abortive Medication and trigger logs (including weather and the dastardly Barometer Pressure log) and taking my research in and discussing it and making my notes, being very studious and diligent and taking my instruction well. Also making my concerns being heard very plainly the past few years-the intense stabbing behind the eye that was relentless, the chronic neck pain increasing over the years to the point of crunching sounds and limited ROM the past few years. The frightening and increased lingering side effects from each Migraine attack that would linger and the length of each attack that would get longer and blur into each other until it seemed they were nonstop and never-ending. Last year I begged my last neurologist who I thought was empathetic, after all he professed to also be a former Migraine sufferer himself, to try Occipital Nerve Blocks on me. Nope, no he said I didn’t need them-after all he said that didn’t seem to be my problem. HUH?? My migraines were predominantly in my occipital area and were horrific in pain and my migraine abortive meds would not even touch the pain when it got geared up! No he said I needed to try Botox. WTH??!! The frosting on the cake that ended it all for me with him was this past July. It was a Thursday almost 5:00 pm. I tried calling and God forbid anyone answer so close to closing time. I had one of those God awful Migraines that I wanted to dig my eye out and bash my head into the wall. I took everything I could and it would NOT touch the pain. I got this after hours answering service. The one woman was a real #itch!! Snotty, rude, hateful and obnoxious. Not helpful in the least. She said that the Doctor tried to call me back. Bull-fricking crap!! She said the Infusion Center would have to take care of me. Well great. What is the phone number, where are they located, how do I get there and what are the hours? Well they were not allowed to give me that information! WTF!!!! Friday the doctor’s office was closed. My husband was off work. He was making calls for me since he and my daughter witnessed my meltdown as I swore I would not make it through the night with the pain. I was told to go to the ER. Oh no. Not be treated like a drug addict after waiting for hours in those bright lights, loud noises and rude people after driving for over 30-45 min 1 way. Not going to happen. Take me to the funeral home 1st and bypass the ER.

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So my husband finds my now current Pain Management Doctor on the Internet. The PM Dr. tried like heck to get me in ASAP but since my bunghole neurologist/joke migraine specialist was closed he could not get copies of my office notes. So I suffer through the week. And boy oh boy did I suffer. Monday out of the blue my quack Neuro calls with info to get me to the Infusion Center. About 4 days too late, but I was still in a bad one so I go to the hospital 4:30 pm that Monday for about 5 hours and my husband picks me up. That was the only time I heard from my Neuro. A day or 2 later I get into my new P.M Dr. What an answer to prayer he’s been. At first he was not going to take me because of all the quacks I’ve seen and what he “thinks” they’ve done for me. But as he interviewed me he found out they just used me as a pill Pez dispenser basically. They never listened nor took seriously my severe eye pain or neck pain or other complaints of intense Migraine/Head pain. He ordered an MRI of my neck and did some probing. My next visit he did Bilateral Greater Occipital Nerve Blocks and the horrible Occipital Migraine I was getting instantly went away. I went Ah Ha I knew it! My MRI was back I had damage to my C4&5 disc and diagnosed me with Degenerative Disc Disease, Cervical osteoarthritis and Occipital Neuralgia and Occipital Migraines with Chronic migraines. Since then I’ve had several Cervical Nerve Blocks, Nerve Ablations. I’ve had my medication changed and reduced from when I was with the useless neuro. I’ve had PT to work on my FM and neck ROM and have an at home Cervical Traction Unit.

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I’m a far cry from being stabilized but I don’t have as many disabling occipital migraines as in the past, although this past Monday I did have a severe one that had me in a non-stop nauseated and vomiting stage and my prescription Phenergan with Benadryl was not working. Thank God my sister-in-law and brother-in-law that live 10-15 min away were able to drive me to my P.M Dr where he was able to do Bilateral Nerve Blocks on C2 Cervical to stabilize that horrible Occipital Migraine. It’s been a long, long time I had one that bad where I was actually throwing up. And it’s quite embarrassing to get car sick to boot, especially in front of family like that. My Dr. from heaven did tell me he could eliminate possibly 35-40% of my migraines which to me is a Godsend. I’ll take it. I know there is no cure and he never promised a cure. My spouse is ticked I’m not “better” or “cured” in his eyes or mind but I do have the Fibro issue to contend with which now is putting me through hell. The chills are hard to contend with and it’s adding to the migraine factor and it’s making my IBS go haywire even with keeping tight reigns on the diet. I’m learning more about This Fibro and CFS as I go along and it’s not nice. It makes for a nasty mix to the factor. When I was doing PT I could not exercise as long nor as hard and heavy as I wanted to because I felt like I was going to pass out from pure exhaustion and I’d feel like I was ready to fall asleep on the exercise equipment, or on the way home or as soon as I walked into the front door. And I found I could not recover from that exhaustion. You can’t sleep through the night, you wake up exhausted, you can’t take a nap as your eyes don’t know how to close, you fall in bed at night exhausted, but you struggle to try to fall asleep and stay asleep. Yep, the nasty side of Fibro and CFS. Sleeping pills, antidepressants to make you sleepy-they don’t work-they just add to the side effects. More side effects-that’s all I need. NOT. Maybe a rubber mallet by the side of the bed to hit myself so I can sleep and a bucket of ice water in the morning to wake up with??

migraine witch

I’m not drinking caffeine to keep me up, nor alcohol, nor chocolate, nor sugar. I’m not eating carbs, or heavy meals at night. Actually I’m having a hard time eating much at all. With the stomach and digestive issues not much settles well so I am almost scared to eat a lot of food and when I do get a migraine I’m afraid to eat too much as I’m afraid of it coming  back up. This past Monday I could not even keep down clear liquids. I finally ate solid food about 6:00 pm and kept down clear fluids about 4:00 pm. That was a good afternoon after a really bad start for me. I try not to push it too much. Light protein, very light, and lots of water when I can stomach it and if I feel nauseated I cut it off. As one blogger ignorantly replied to my post I cannot do honey, I don’t do sugar of any sort and honey is way too sweet. And I have to be very careful of fruits and vegetables-those in the high Tyramine and high histamine category are a no-no. Research your fruits and vegetables before you dare lecture me on what I should consume as I avoid my migraine triggers at any and all costs. Even though I’m caffeine free I will take a shot of it to help my migraine abortive medication get a kick-start. Some medications do have caffeine in them to make them more effective.

http://www.migrainetrust.org/factsheet-migraine-triggers-10505

What is interesting too is that we often get picked on that were lazy, couch potatoes, when it’s far from true. Many profession athletes suffer from migraines and I dare anyone to call them lazy or couch potatoes. Go ahead, I dare you, as well as many motivated famous people who lead active lifestyles:

http://www.northshorelij.com/cushing-neuroscience-institute/news-events-multimedia/anthletes-and-migraines

http://www.migraines.org/myth/mythgood.htm

Be that as it may, the Internet is all around us. Almost everyone has a smart phone now, even middle school kids have access to them, as well as tablets with Internet access and just about everyone has Internet at home via a PC, Tablet, smart phone, integrated TV and many people spend hours surfing the net either on social networks or blogging. Some people even do useful things like researching health topics-imagine that! Using a helpful tool to actually gain knowledge on topics that either relate to themselves or a loved one. So maybe while your on someone’s blog instead of replying with useless unrelated BS replies, people could get their heads our of their rumps and actually research to learn something for once BEFORE they reply and make an educated stance. Or else they will just sit there on their brains and starve them from oxygen and make useless and pointless and illogical replies that do not apply to the topic at hand. The choice is yours audience. While you have a piece of technology in your hands so powerful, make use of it and LEARN. Make a difference if not in your own life then in someone else’s. I will not let the idiots hold me back. No, I will continue to rise to the challenge. I will retort when someone makes the stupid idiotic remarks that Migraines are just headaches! Excuse me-but what idiot just said THAT! And say that to my face and not  behind my back like a sniveling coward that you are!! State your full name and your email address for a reply!! If your going to make comments like that stand up behind them or shut the heck up and stay off my blog!! Same goes for my FB page and my Twitter. If you can’t back it up then shut up and stay off! I don’t bother you with such idiotic BS so don’t disrespect me in that way.

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Next time I will share my recipe for homemade organic body lotion. A hobby I learned over the summer that came about over my experience with aromatherapy and from a fellow FB supporter.

Until then to all my fellow sufferers in all avenues and all areas of Invisible Illnesses Diseases, be what they may, I wish you peace, pain free days when you can get them (and cherish them when you do)  and many blessings. Just because you cannot “see it” does not mean it isn’t real and it doesn’t exist. One day we will get that through society’s head. Until then we will all band together and stay strong.

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DISCLAIMER:

Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing experiences and news about Chronic Pain Conditions. Please consult your own health care providers for advice on your own unique situations and do not take any information on this site as a Diagnostic Tool or Procedure for your signs or symptoms. I will not be held liable for any misinterpretation you may misconstrue from any presented information on this informational only page.

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#MHAMBC Migraine & Headache Awareness Month #26: Men in Black: Migraine Neuralizer: How do you cope with the way Migraine/Headache Disorder can impact our memories?


June Migraine awareness month

I am constantly struggling with memory issues. I even went so far as to as my Neurologist if I was going senile, or early Dementia or worse Alzheimer’s because I cannot remember from one minute to the next. And also having Fibromyalgia on top of Chronic Migraine Disease I get the double whammy of Brain Farts I call them.

It has made a huge impact on my life for the worse! I have turned on the kitchen faucet and walked away to come back to a sink overflowing because I forgot I had the sink filling-and in such a short amount of time. I’d put food on the grill and make something inside and forget about the grill completely until much later-crispy chicken jerky later, slightly charred. I’ve burnt stuff left and right, which is not the normal me.

Of course everyone gets to that stage where you “normally” forget things, but it’s been running more rampant and on a day to day hour to hour basis it seems. I’m always forgetting where I put my cell phone and spend several minutes looking for it. I do the same with my glasses, if I take them off it takes quite a while to find them again. I’ll set down my water glass as I’m always chugging down water and forget where I put it. I set alarms on my cell phone for when to take medications, and even have a chart on the cabinet door, but if I turn off my alarm and get slightly distracted I forget about my meds and end up taking them late and not on schedule. I get so angry with myself. My spouse and daughter get more aggravated with me and I’ve explained to them many, many times that on top of these Brain Farts that come with these diseases, it’s also a side effect from some of the medication.

I lost count of how many lectures I get about how I forgot to do this and that. I just sit or stand and wait for them to finish and then I have to remind them I have no control over it. I wish I did, but I don’t, and that is a depressing and stressful part of this condition. I have also forgot to pay bills. Not normal for me at all. And then I write checks from the WRONG bank, in which the account was closed-don’t ask me why those checks were still around but they were. That mess is fixed at least.

But I would give anything to get my memory back and make it better. If only there was a way short of finding a cure for this horrible disease. Then I can toss all these rotten pills and injections and would not have to see so many doctors and clinics. In my dreams for now.

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

CALLING ALL CHRONIC MIGRAINE SUFFERERS-A CALL TO ACTION


angry-cartoon-woman-seated-shooting-computer1

it has been brought to our attention that a twitter account has been making accusations that Chronic Migraine Disease is “not” a neurological disorder when in fact it has been confirmed that not only is it, but it’s also genetic and is more than “just” a run of the mill typical headache. This person has enraged several on the CMA community and her claims need to be put to a stop. We have tweeted her and you can pick up on the conversation if you follow me @jgs350 as the bulk of the conversation has been posted today  6-21-13. For legality purposes I cannot post her website or her twitter handle, but if you follow mine you can find it if she has not deleted it. But she has directed a few migraine sufferers to her site which only promotes “beauty” products to stop aging after the age of 40???? How is this to help Migraine Disease? But then she said it was NOT a Neurological disorder, and when confronted what she knows about CMA she would not respond.

Some people use alternative therapies in ADDITION to their medically prescribed preventive and abortive medications. Alternative therapies alone are not a cure for Chronic Migraine Disease.

I hope you do have the chance to go on Twitter and check it out and bombard her with the correct medical information on what Chronic Migraine Disease really is. People like this, selling snake oil and putting the name of Migraine to it has got to stop. I know a lot of people in the CMA community will respond appropriately.  People like this have got to be stopped. They add to the stigma of Migraine Disease. It’s not Inflammation, it’s neurological. People like this really bring out the anger in us true sufferers and due to the recent tragic loss of a CMA member we cannot let this continue.

frustrated-face

THIS IS NOT A SITE TO OFFER MEDICAL OR ALTERNATIVE HEALTH CARE ADVICE. ALWAYS SEEK THE HELP OF A MEDICAL PROFESSIONAL FOR HELP TREATING CHRONIC DISEASES AND DISORDERS.

In Loving Memory of Melissa Dwyer 6-7-13


loving memory of melissa

The Chronic Migraine Awareness Group (CMA) lost a kind, warm, loving, beautiful and generous soul this past Friday. But her family has lost so much more-a daughter, sister, granddaughter, niece and best friend. After a long battle with Chronic Migraines and Chronic Illness, she could no longer take the pain anymore. As a close-knit online community we are truly devastated by her loss. A tragic loss that could have been prevented if there were more awareness of the debilitating pain of Chronic Migraine Disease-that the pain is real and it takes a toll on a person’s life as the pain and suffering is never-ending. People need to realize that Migraines are not “just a headache”. It is a REAL neurological disease that not only involves excruciating head pain, but has many other symptoms as well: Partial or total loss of peripheral vision in 1 eye, dizziness/vertigo, persistent nausea, chills, stomach pain, painful stimuli to light, sound and smell. The list goes on. Even those in the Medical Profession have stigmatized Chronic Migraine and when a sufferer goes to the ER when their at home rescue meds fail, oftentimes they are turned away after a long wait and treated with contempt and disbelief-they (we) are often treated as drug seekers and treatment to ease the pain is withheld. Even with primary care, neurologists and headache specialists the standard of care for Migraine Disease is poor, to say the least. So everyone with this dreaded disease is often cut off and left to suffer alone, which adds to the despair.

Melissa Dwyer

Melissa reached her breaking point, and even though she counted on her mom as her true friend who stuck by her through thick and thin, she still could not find relief from her chronic non-stop suffering and chronic pain. This is a tragedy that could have been avoided if there were better awareness and better treatment and medical care for this God awful disease. I pray they find it soon before we lose another beautiful, loving and precious soul. God now has a beautiful angel, but she has gone far too soon. Prayers to her mother and the rest of her surviving family and friends as they try to cope with this senseless tragic loss. And we in the CMA community also will try to come to terms with this tragedy and will not let Melissa’s death be in vain. God’s Speed Melissa. RIP.

#MHAMBC Migraine & Headache Awareness month #2: X-Men: Migraine and Headache Disorders Super Heroes: Who in your life goes above and beyond the call of duty and how


June Migraine awareness month

Migraine Blog Challenge Day# 2 (June 2, 2013)

X-Men: Migraine and Headache Disorders Super Heroes: Who in your life goes above and beyond the call of duty and how?

I know I have vented about the bad times with my spouse, my significant other, about his oftentimes lack of support and consideration. When we got married in 1982 none of us knew that Migraine Disease would become a major force to be reckoned with in our lives together. At first when it was sporadic it was a minor nuisance. Since early 2010 when it became daily chronic Migraines after a host of other things, it was like the Domino effect and things came tumbling down. 

We did have our ups and downs before then but this became a real challenge. At first he tried to be supportive but he gets very easily frustrated and in his family they never dealt with chronic illness very well, so he wasn’t sure really what to do and how to do it. I became frustrated as well and we would both take it out on each other. He became angry when there appeared to be no end in sight and he took it out on me. As a result I retreated and became hurt, angry and resentful. Resentful for his lack of emotional support and angry for the way his mother raised her children-not knowing how to give loving and emotional support. 

I did make excuses saying it was how he was raised and how he can change if he wanted to, but he is very stubborn. Change doesn’t come easy for him or his family. But very slowly this past month I have seen a change. He’s slowly showing and voicing concern and finally recognizing I have been and am currently doing all that I can to try to get better and how it’s all been an uphill struggle. He sees how depressed and frustrated I am and see’s the toll it’s taken on me emotionally as well as physically. He has been doing little things here and there to try to alleviate my pain by doing dishes a couple of times and taking care of the dogs when I can’t get up in time to let them in and out. He’s picked up things for me at the store without my asking and offers to pick up my RX’s for me on his way home from work. 

He has even forced himself to eat leftovers the next day without complaining if I’m too sick to cook. Now he doesn’t like to do it often so it’s a work in progress, but we’re making baby steps. But he is starting to show compassion, kindness and emotional support-when I need it the most. Again we’re doing this in baby steps but in the right direction. My daughter has started pitching in and making supper once in a while when she gets home from work and feels up to it, or will do some housework for me-all without being asked. She will check on me often when she’s home and bring me water or refill my ice cap. I don’t know what I’d do without her. 

My other super hero isn’t a man but it’s my best friend of 30 years. My constant unyielding and non-judgmental friend, who’s never left my side, always has been there for support, love, encouragement and a very broad shoulder when it’s been needed. She’s taken me to doctor’s appointments when I can’t make it on my own and has picked up grocery items during the week if I’ve run out of things. I could not have made it without her unconditional love and support.

I am blessed to have 3 Super Heroes in my life.

 

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

#MHAMBC Blog Challange #1: Phantom of the Opera: What do you hide behind your Migraine/Headache Disorders Mask? What do you let people see?


June Migraine awareness month

I would like to think I’ve been pretty open about sharing facts and important information about Migraine Disease and all It’s Comorbid Conditions, due in part to not only educate myself and my family, friends and loved ones, but for the public as well due to the Stigma attached to Migraine Disease as a whole. I have been battling Migraines for over 25 years. I know there are more out there who’ve had them a lot longer and have gone through more torment than I have, I’m sure of it. But it is a difficult life for sure.

Thinking back though on earlier years I do think I hide the fact I was having a Migraine due to the “unknown” factor. I didn’t know much about it then nor did anyone else for that matter. I would try to make myself go to work and if it got too bad where I could not function then I had to call off and shut myself down to battle the Beast, as I called it then and to this day. I did make up excuses that I had the flu or some sort of virus and I was able to glide by on that for the 1st few years because they were so episodic and didn’t happen that often.

Later as I grew in knowledge from what I learned on my own through internet searches and what little information I gained from doctors I became more open about it, to only be shut down by it being called “just a headache”.  As time went on and the Migraines became more frequent I became more vocal. I didn’t hide that I had Migraines anymore. I would let my bosses know and that I was seeking help, which instead of turning in my favor of being open and honest I then became a target-a liability. But that is a different story for a different time.

There are still some times though that I will try to hide the fact I’m suffering an attack when my pain level is at a 5-6. Through the years I’ve learned how to struggle through the pain and cope as best as I can as nothing much has been able to help to this point. One Neurologist in 2006 told me I would “learn to grow into my migraines instead of grow out of them”. Back then I thought he was off his rocker.  I will push myself to do things that are very difficult for me but easy and no big deal for anyone that is “normal” and not in chronic pain. If I’m asked sometimes I will say I’m hanging on instead of going through the spiel of what is wrong and so and so. Sometimes it’s too exhausting and frustrating to explain and you feel like a broken record over time. I know to my family and friends I’ve become a broken record so I try to stay silent on those so-called mild days. I know they are tired of hearing about it day after day. I’m tired of living it day after day with what appears to be no end in site. And I do feel guilty about what I cannot do anymore and that I hide a lot because if I voice those opinions I know and I’m afraid I will be pushed more and pushed harder, and I cannot cope with that level of stress.

But when I get above a level 7 I cannot remain too silent. I will let them know I’m in pain and if I’m pushed too hard I do break down and go close myself off to be alone and to recover after I fight the battle that can sometimes seem overbearing. At that point the vertigo sets in, the visual disturbances set in, the super sensitivity to light, sound and noise are at an all time high. I really hate this lifestyle as it has taken away my life. I feel cheated at times because there is so much I want to do and at times I feel my life is over and I’m confined to excruciating and exasperating pain for the rest of my life. It gets depressing but then I have to pull myself up out of that dark pit when the pain lessens and I can try to function. I just cannot do things I use to do in days gone by which saddens me and frustrates my family to no end. When you become chronically ill you find out fast who your true friends really are because the others disappear from your life, never to be heard from again.

Sending you all Blessings for a pain free, or low pain day. Tidings, Julie