Well hello there. Sorry it’s been so long! It’s been a long and very hard time last year. I’ve had some major set-backs that have made some chronic illnesses more severe, and then I’ve had intensive cervical nerve blocks followed by a couple of rounds of ablations to control my Cervical Osteoarthritis and Degenerative Disk Disease which in turn has toned down my Occipital Neuralgia a few notches. Now that has not cured my Occipital Migraines. Not in the least. It just keeps me less suicidal that when I was in 2010-2011 and keeping me from bashing my head in the wall to try to either dull the pain or end it. That idea always sounded like it would make it better for some odd reason. I think fellow Migraine sufferers that have this horrific pain that starts in the back of the head and feels like Satan himself is drilling relentlessly out your eyeball thinks sort of along the same lines. I’ve had 4 rounds of Botox for Migraines this years + the 2 the prior year. I do not think they are being effective. Along with the medication trials, those I’ve had since 1996 since the present time I had a week long migraine 2 weeks ago. Not a really fun time over the holidays.
And the Fibromyalgia and CFS has really been deteriorating into the severe mode. My PCP started letting me do Vitamin B12 Injections at home, 1ml every 2 weeks. Then just 2 weeks ago he changed it to every week. He’s hoping this will help for the CFS. If not he was talking about trying a low dose of Ritalin but I don’t want to go that course. My Cymbalta was increased from 30mg to 60mg and added Lyrica back 50mg 3x a day. That helps with Fibromyalgia and Chronic Pain.
I have been trying to stick with therapy but have had medical issues and medical crisis interrupt my schedule. I hopefully plan on 2015 being a better year as my PTSD and Major Depression are not getting better. And my therapist helps with pain management. My Diazepam was changed from 5mg to 2mg. I take 2mg in the am and 4mg in the am. Helps with my PTSD and Anxiety/Panic Attacks. Yep, those still plague me.
My SSD comes up for review this coming December 31, 2015. I just happened to come across my SSD Court Decision papers and I emailed my SSD Appeals Attorney what I do. So I’m waiting to hear back. I’m still in constant pain and the severe Fibro pain, CFS and Migraines make it hard to even work at home. I try but I need some help every so often from my BFF of over 30+ years. Very depressing to need so much help.
I belong to CMA and a few CMA branch FB support groups. I started my own FB support group: Making all Invisible Illnesses Visible. There are really awesome members in all groups, especially mine. I have pretty cool fellow co-administrators. If not for ALL these groups support this past year, my BFF and my Bible Study Group, I would have lost my mind and ended up hospitalized again. Normal people just don’t understand how bad Chronically Ill people feel. We don’t make this stuff up. We’d give ANYTHING to be more productive!!! It is NO FUN being sick all the time!! We hate this way, WAY more than you normal’s hate it!!! And all we ask for is a little compassion and empathy! Not hatred, sarcasm and spite.
This is all I can write for today. I’m exhausted. The Insomnia has been acting up again. I wish you all Peace, Love and many Blessings. Julie. xoxoxoxoxoxoxoxoxo
“Hard times build determination and inner strength. Through them we can also come to appreciate the uselessness of anger. Instead of getting angry nurture a deep caring and respect for troublemakers because by creating such trying circumstances they provide us with invaluable opportunities to practice tolerance and patience.” ― Dalai Lama XIV
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.
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”.
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.
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.
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.
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.
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.
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?
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.
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.
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??
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.
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:
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.
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.
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.
It saddens me to think that everyone that is in the Invisible Chronic Illness Community, that includes Chronic Migraine Disease as well, do not band together to get the true issue out about what is fact and fiction when it comes to someone from the outside touting that “alternative” therapies are the “only” treatment for a known Neurological and Genetic Disease of Migraines. I have struggled with this disease for over 25 years and have tons of research as I’ve had to in many cases be an educator for my Neurologists and PCP‘s as they still as of today don’t have a clue as to what is going on with Migraines. Many doctors do not get skilled teaching on Migraine Disease as it is such a complex Disease requiring a lot of time, effort and research. And there are many different types of Migraines as well, so to get correctly diagnosed and treated properly can take years. There is no “one size fits all” diagnosis or protocol for any one patient. But the fact remains clear, those who do suffer Chronic Migraine Disease do need pharmaceutical intervention in ADDITION to alternative to make a well-rounded approach to the care of everyone who suffers from this terrible disease.
No one ever once stated that Aromatherapy was not a good treatment. It was only pointed out that when a “sales person” was promoting a product she sells as the “only” solution was where the problem began. And again, I cannot stress it enough, as with any other chronic disease or illness there is NO one size fits all answer and there are more pieces to the puzzle than just essential oils. I have on some of my past blogs where I have noted I use alternative treatments as well. We all do. But it’s part of the “complete” regimen and does not replace medical care as this person professes.
ALL of us, myself included, do practice healthy living-eating right, avoiding dietary triggers, exercise, physical therapy, massage therapy, cognitive therapy, Chiropractic, Acupressure, Acupuncture, Bio-Feedback-to name a few. We all have tried and do use aromatherapy when it’s tolerated. We all have tried and use different muscle rubs on the head, temples, neck and scalp to help reduce pain-those are alternative therapies, as is using ice packs, heating pads, bed of nails mat, Chillo‘s, cooling patches-all again are alternative therapies-we all do anything and everything possible to try to stop the pain. But we use all these things in ADDITION to preventive RX medication and RX abortive medications prescribed by a qualified physician. Everyone I have come across, and myself included, have tried just about every alternative therapy known and then some, as well as trying all types of medications to try to manage, stall and abort a Migraine Attack. When all approaches fail we often have to resort to emergency intervention, be it the dreaded ER or to get into an infusion center, or have our doctor call in a cycle-buster. I am not a lazy, incompetent, self-serving, attention seeking Migraine Disease Sufferer. I have fought and battled this beast for many years and will continue to do so. I have spoken out in the past when approached with a Stigmatizing statement and will continue to do so. If someone reading this doesn’t like it then it’s your problem, not mine. I will continue to investigate, research and blog on what is medically sound information. If you don’t agree you can offer your own Medical and Scientific research to dispute that.
It is nice to be able to go into support groups and be supported for a Chronic Disease. People always have opinions that differ, but that does not mean people have to be mean, nasty, hateful and disagreeable. Especially when someone is SUPPORTING the cause, not fighting against it. This part I do not understand and never will. All Chronic Disease have a Neurological factor. They just don’t appear out of thin air for no rhyme nor reason. Like cancer, we know some forms are genetic. Is anyone going to dispute that as well and say the “only” way to cure it is with aromatherapy. While it may soothe it cannot and will not banish those nasty cancer cells. For that you need trained medical intervention. The same with Migraine Disease, Fibromyalgia, Lupus and many more diseases. If you’re not being treated correctly you need to shop for another doctor who will. You just don’t sit there and settle and not try to get better. You have to fight with all your might and all your worth.
We also know that it is neurological and it is genetic. I can paste the webpages yet again from well-known institutions that support this fact. But again this is all getting to be so repetitive. If you cannot support the correct education of what this disease is then you should not promote anything. I’m for the truth, will remain truthful and tell nothing but the truth. Some people cannot understand that concept but that is what I’m about.
In closing I’d like to wish all of you-Chronic Illness Community and all those who do and do not agree, a low pain day and sending you Blessings to you all as I do not wish to be a disagreeable person. I just merely want to present the facts and share the truth in this Disease. I do not lead people astray.
But yet people are Oblivious to this scientific backed information. A “regular” Headache cannot give you a stroke or kill you. And the fact it’s Neurological also bears fact that a Migraine attacks the WHOLE body and not just the head. Head pain is only ONE out of many symptoms of a Migraine Attack:
Sensitivity to sound, particularly loud sounds ”phonophobia”
A “regular” headache doesn’t cause any of the above symptoms. A Migraine sufferer will experience many of those symptoms and maybe more. The whole person as a whole is under attack. And yet the public continues to stay in their Oblivion to this Disease. Those who are not privileged to suffer the regular old run-of-the mill “headaches” are not bombarded with an overwhelming menu of Preventive Medications to try to control the disability that comes with Migraine Disease:
Methylergonovine, aka Methergine (the only ergot used as a preventive)
Leukotriene Blockers:
Montelukast, aka Singulair
Zafirlukast, aka Accolate
Zyleuton, aka Zyflo
Other:
Baclofen, aka Lioresal
Botulinum Toxin Type A, aka Botox
Medication for Alzheimer’s Type Dementia:
Memantine, aka Namenda
A person who suffers the occasional standard headache would not be prescribed any of the above preventives nor the following array of Abortive Medications:
Analgesic Agents:
acetaminophen (APAP).
aspirin (acetylsalicylic acid, ASA), which can be used alone or in combination.
These medication lists are just a sampling and are reserved for those who suffer Chronic Migraine Disease who cannot get relief from OTC Medications used for regular headaches. More medications that are not marketed for Migraine Prevention and Abortive Treatment are being tried on a daily basis. I don’t think they can even compile a complete lists because doctors everywhere are trying other medications out of desperation. Now some Migraine Patients have been advised they can utilize OTC WITH their medication regimen but it doesn’t take the place of. We use other “alternative therapies” along with our prescribed medications to help with our own care, but not take the place of regular Medical Care.
But yet the public still remains Oblivious to the chronic suffering of Chronic Migraine Sufferers. They prefer to see them as “drug seekers” “whiners” “complainers” “attention seekers” even going to the point of telling us it’s “all in our heads” “we’re making it worse than it really is” “get out and do something and you’ll feel better” “it cannot be that bad” or my favorite “can’t you just take a pill for that”. Even some in the medical profession still do not take Migraine Disease as a legitimate Disabling Neurological Disorder and will treat patients who come to the ER’s for emergency treatment. These patients in desperation are turned away, again labeled as “drug seekers” and treated with contempt. They too remain Oblivious even though there is more proof it is a “REAL” disease. And yes, it can prove fatal to some who can get no help for their chronic condition, who can not get relief from the relentless pain, and they will tragically take their own lives to escape the ridicule, disdain, mistreatment, mismanagement and isolation: http://www.puttingourheadstogether.com/2013/06/dont-tell-me-migraines-dont-kill.html
Enough is enough. People, stop being Oblivious and open your eyes. Become educated to the plight of Chronic Migraine Disease. Don’t walk around in Oblivion to the plight of those who are suffering and need support.
THIS SITE DOES NOT CONSTITUE NOR TAKE THE PLACE OF PROFESSIONAL MEDICAL ADVICE. PLEASE SEE YOUR OWN PHYSICAN FOR DIAGNOSIS AND PROFESSIONAL CARE. I AM ONLY A BLOGGER THAT LIKES TO DO RESEARCH ON MY OWN AND SPREAD THE WORD TO GET THE STIGMA OF MIGRAINE DISEASE TAKEN AWAY, AND EDUCATE OTHERS AS WELL AS MYSELF.
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.
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.
This past week has been trying and most difficult. After years of being treated as a doormat, having my feelings, emotions and illness stomped on and disregarded as trivial and non-important, I blew my top. I’ve turned my cheek for too many times and I admit I am partly to blame for letting this cycle continue as long as it has. If I had known years ago what I was getting myself into I would have run the opposite direction. I would have run so hard and long I’d probably still be running to this day, and avoiding all emotional entanglements PERIOD!
I do not and cannot understand why some humans treat others like they are worthless, useless, and insignificant, with malice and total disregard for another’s feelings, pain and distress. Even when you point it out time and time again all it does is fall on deaf ears. My problem is when I love, I do so without condition. I guess that has made me an easy target over the years to be treated the way I have allowed myself to be treated. I always give others the benefit of the doubt, especially those who are the closest to me. But oftentimes in return I do not get the same consideration or the same treatment. I’m not in by no means painting myself to be a saint or an angel, but when you are suffering in daily chronic pain where your lowest pain level on a lucky day might be a 5-6 and can spike up to a 8-9, and on a few occasions even up to a level 10-when your mind and body is under constant assault, my option of the past 3 years is to avoid conflict, confrontation and arguments as it just tosses gas on my pain and gets the fire roaring. I’ve been the one walking on eggshells as to not “rock the boat” and be considerate of the other person and not even “nag” them about one flipping darn thing, and to what avail? I might have just been making myself sicker. Who knows?
What is even more exasperating and frustrating is that I am not taken at my word when it’s physically clear as the nose on my face and the nose jutting off the other persons, how much pain I’m in and that I’m suffering. It’s not fun being shut up in a totally dark bedroom, isolated from the world, in total silence with ice packs, heat pads and medication on your bedside table with your log of when you took it, and when to take again so that I don’t lose track and accidentally double-dose. Any medium to loud noises send the pain sharper behind the eye that I have partial blindness during an attack-they call it Ice Pick Migraine but I call it TheJackhammer. And any strong smells also send me over the edge and add more to the pain. When I’m in the most extreme pain, movement or exertion will exacerbate the it even more and add to it the nausea that sometimes comes in full throttle, and then I’m worshipping the porcelain throne, or it takes spells as dry heaving. My scalp is painful to the touch and I often get ear popping to the degree sometimes that it too is painful along with ringing in the ears. Then the Fibro pain will flare up and I get the muscle spasms that will go from the back of my neck, along the top and backside of each shoulder-blade, center of back down through my lower back and hips. Sometimes I will get throbbing and tingling in the hands, feet and knees. Sometimes it’s almost like a burning sensation. This is no way for a person to live, nor does this person wants to live this way! I’d give anything to have my old life back-no pain, being able to work and not be treated with quite as much disrespect.
What really gets my goat is that those closest to me see my pain and suffering and disregard it. I’m told it’s either in my head, my imagination, I’m making out to be worse than it is, if I got out and did some mowing or yard work I’d feel better, if I did something with my life I’d feel better, if I just stopped taking all my meds I’d feel better, and the list just goes on for all the BS I hear. But the point is that they always blame ME for having apparently inviting these diseases into my life! Like HUH! Are you kidding me? What planet did you just land from and where is your return address and I can ship you right back! Who would want to live this way day in and day out? Certainly not me and I have been VERY active in my healthcare trying to get better. I’ve seen several GP’s, Specialists and Neurologists to no avail. All they can do is experiment on you as there is not ONE medication on the market that is designed for and made specifically for Migraine prevention. All the meds that are available to treat you are second-hand meds used as “off label” which means a medicine use for epilepsy or heart problems for example; over the course of time they found they helped with SOME people’s Migraines to lessen the severity and duration. But the stickler is that everyone has their own unique set of genetics, neurological mapping and chemistry, so what works for one person will not always work for the next person. So they experiment with a whole range of medicines to try to find the right “cocktail” that will hopefully make a person’s life with Chronic Migraine more tolerable and manageable. But they will not cure nor prevent the Migraines totally.
As of today’s date I’ve tried over 60 different medications for Migraine Preventives since 2006. I hate taking medicine more than the next person and I hate having to take a pharmacy along with me to be “prepared” for an attack that is getting out of hand. I also have a little larger version on my beside table. I hate paying for these medicines as well, and I’m totally DISGUSTED with the side effects that I DETEST this all with a passion! If the side effects get to be too much we move on to another one. Or if after 3 months that certain combo is not working its revised and another new regimen added with yet more medicines to adapt to. And so it goes, on and on over and over. Wean on new meds, wean off to start new ones. And so the medication merry-go-round goes and my hamster wheel keeps spinning. I hate it more if not as much as the next person but I have no option. If I went medication free like I’ve been told before by a so-called loved one I’d be in much worse shape than I am now. I probably would have had a Migraine induced Stroke and lie comatose or 6’ under years ago. Maybe that is what they want. I don’t know and I can’t think any other way because of the way I’ve been treated-with no empathy and a total lack of support-emotional support. And I go out of my way to do extra things to be nice and helpful, even when I don’t feel up to it to make it “easier” on the other person and what do I get in return? Nada. Zilch. More of the same. All I want in return is respect and love. I’m not asking for Mt Everest to be climbed , but you’d think that was what I was asking for due to the lack of compassion and support I get in return.
I was told last year that they are just “too tired” of hearing the same thing and tired of it not going away. THEY’RETIRED!!! I’M FLIPPING EXHAUSTED AND TOTALLY WORN OUT FROM IT ALL. PITY POOR THEM-THEY HAVE IT SO TOUGH! Well guess what, like I told them then and telling them now-it will never go away. It’s here to stay. If the Migraines do eventually go away somewhere down the road it will be on its own terms, not mine. And Fibromyalgia, well there is no cure for that either so that is something else to have to learn to work around and deal with. But guess what-medication is part of the picture and it’s not going away anytime soon. I wish it could but it can’t and that is my reality. That and the constant non-stop pain. So the emotional pain and the physical pain are wearing me down and I cannot find my positive place that I use to be able to find and release the tension. My positive has turned into the negative that has surrounded me for so many years and it’s wearing me down on top of everything else. So a little over a week ago I snapped and had a breakdown of major proportions. Things have to change or I’m out of here! And I mean it. I am not going to be treated like a door mat anymore! I already have too much to deal with as it is and it’s not fair more is being added onto me, through NO fault of my own! And if you think I’m just whining and being a big cry baby just to have my own pity party, I’d pay you to walk in my exact shoes and live my life and bear my pain for onewhole week. I dare you to. You wouldn’t be able to do it. So don’t sit there and judge me for feeling the way I do or thinking the way I do or for what I have to deal with day after day continuously. If you don’t experience this kind of pain you have no right to judge someone who does! No one can empathize but for another fellow sufferer!
Sad thing is that I’m not in this boat alone. My FB support groups CMA and Fibro Chicks, a lot of the members go through the same exact thing. They get no understanding, support, empathy, consideration, love, compassion or ahelping hand. If we were dogs our so-called “owners” would have had us put down by now because we are being such a “burden” and such a “drag” and “not being productive” and not bringing in “our share” of the money. And the sad thing is that sometimes when we get to the bottom of the barrel, we actually start to think we’d be better off is someone would do us the favor and put us down, or a few of us have thought about doing it on our own. But then we’re told we’re “retarded” or “psycho” if we think or feel like that. Well you tell me how are we suppose to feel? When you’re always being put down and your feelings and emotions are made to feel like it’s OUR fault and we “asked” for it or we’re “not trying hard enough” and your being berated all the time. How is someone suppose to feel when they get that kind of treatment day in and day out?
I’m in PT now to try to get some help to cope with and live with the physical pain. As there is no cure for Migraines nor Fibromyalgia PT is an alternative option as I have tried just about everything else. We are trying to fix my very weak neck and shoulders, especially the LH shoulder that was injured a few years back during a fall down the steep basement steps. I got a small tear in it but it wasn’t considered big enough for surgery, so they just did cortisone shots and PT the 1st time around. The 2nd time I reinjured it was during work and because it was so late at night on the weekend and couldn’t report it to HR “immediately” (well everyone was in bed and it was a late Sunday night-I couldn’t tell them until that Monday morning-DUH) that was their reason to refuse to acknowledge it as a work related injury. HR had the NERVE to tell me to my face “sorry, but I have to protect the company”. She was a long time friend of the family that owns the business and the biggest back stabber that I have EVER known! I still had to undergo another round of cortisone shots and I will do no more as that last round just about did me in. I hate needles to begin with and that last one hurt like a son of a hockey puck! But I hope the PT I’m taking now will help me so I can learn to work through the FM pain. The neck treatments they are doing they hope might help a little with the Migraines, but it won’t take them away. And the FM pain could be adding to the Migraine pain. They don’t know so they can’t tell me. They are still trying to learn what makes Migraines tick and what causes FM and how to better treat that. So even the so called professionals are drawing a blank.
But telling a Chronic Migraine and FM sufferer to “snap out of it” is like telling a paraplegic to get up and walk on his own-he doesn’t need a wheelchair, he’s just faking it or using it as a crutch. And no offence to those that suffer paralysis. Just to show how retarded some people’s thinking is when it comes to Chronic Daily Migraines and FM. A lot of the fault goes to drug companies and their commercials-they add more stigma to this disease. If only it were that easy to take an Excedrin and the pain would go away. If only. I’d be eating those things like M&M’s if it would work. But no enchilada baby. Those things do NOT touch the severe pain of Chronic Migraine. Been there, done that-tried and only made me sicker to my stomach. They will help with tension headaches but not severe pain that is only a small part of the Migraine Attack.
If you are as horrified by Excedrin Migraine minimizing migraine and treating women as a superficial, please express your outrage on Excedrin’s Twitter and Facebook pages.
And with that I end my vent. I’m still trying to release my anger by venting as I have on my support groups-we all have. There we can talk about our symptoms, what we’ve tried, what’s worked and what hasn’t, but mostly we talk about the lack of support and being shut out and slammed down constantly. If it wasn’t for my best friend, the help of my daughter and my support groups I would have gone insane long before now. So a big THANK YOU to my support system that I have set in place. And a big THANK YOU for my online support groups that have invited me in and for once I am not judged.
Until next time Blessings to you for a pain-free day, and love hugs and support for my FB Support, daughter and best friend.
Who would think that suffering with a chronic disabling Migraine Disease, and other invisible Illnesses, that during the course of time you could find any good to come out of all the pain and suffering. Let alone to find any blessings in any of the chaos-with all the conflicting diagnosis, tests, trips to doctors offices, being yanked from one specialist to another, and trying all different concoctions of medications as well as a slew of alternative and holistic approaches, to try to find some sort of relief of any sort! Some people would not blame you if you just walled yourself up, shut yourself off from the outside world and wallowed in your own pity, crying day after day “why me”. Some people actually do that for a while until they wise up and too fortunately others still stay stuck in that self-pity mode. If you stay in pity mode for too long you end up living a life on your own. My Blessings are my Lessons learned because as you go through life and your given a task or a lesson, you work on it, trouble shoot it and overcome it, and then apply it positively to your day-to-day life I consider that a Blessing-to take a negative and make it a positive to live by, follow and hopefully inspire others.
Human nature is self-preservation. It’s in our genetic makeup and being human and all we cannot overlook that flaw we all have built into us. We can however change our perspective and relearn a new thought process and coping mechanisms if and when we get out of the initial grief process given a diagnosis of a disease that has no cure. Of course the process is far, far worse for those with a terminal illness. But pain is pain no matter which way you slice it and to live in it and with it day in and day out not only wears out the body but the mind and soul as well. NOT to minimize those with terminal illness, I would never do that. BUT you do have a way out by learning to put others first and not focusing on your own pain so much but by putting empathies’ on others above yourself. In the process this makes your suffering seem less catastrophic and gives you a better mind-set makes for a more peaceful transition into a balancing act of normalcy, or what we can come close to in the Invisible Illness Community. You take the hand you’re dealt with and make the best of it. Oh sure you can moan and groan and have a little pity party and bombard friends and family with daily or weekly emails of how sick you are and how hard it is to manage. And it could be very well true as we all know. But after a while those people that you moan to and complain to after a while will turn a deaf ear to it all and become desensitized by your plight and minimizing your illness and you as well. And that as a result will diminish the plight of all chronic pain sufferers everywhere in the long run.
I have seen over the years waiting in the doctors or specialists waiting rooms people worse off than I am on an outward appearance and I feel empathy towards them. I’d go out of my way to open doors for them when entering or exiting the building, or letting them get ahead of me in line-no matter where I am: at the store, the pharmacy or at the check in desk at the clinics. And then I would get to wondering about the people that didn’t show any outward sign of distress (as it can be easy to hide sometimes in public, based on the severity of pain that is) and I would silently wonder what demon (s) they are dealing with and I’d feel empathy for them. Not many “well” people wait for an hour in the neurologist waiting room for the heck of it if they feel well, let’s put it that way. And I’d marvel at how composed some people were that they’d keep their pain hidden from the public. Other times some people would persistently go up to the desk and demand to be seen sooner than the others that came in ahead of them. I would not know their situation fully so I would not sit and judge unless on a few occasions they carried on because they had an audience. But again you cannot judge that person’s circumstances like they cannot judge yours. I’m sure if I allowed myself to be taken to the hospital with a full-on horrible migraine I would not be a pretty picture, so one could only imagine.
I do admit at first I was in the denial, weepy, self-centered “why me” phase for a while and I moaned and groaned and went on about the injustice of it all. Then you look and see newborn babies born premature or with devastating birth defects then you start to feel foolish. Then you see people have strokes, get cancer and die of Diabetes and you feel more foolish. Pain is pain and sickness is sickness. It does not discriminate-we are all destined to be grasped by its devastating effects. I have learned this humbling experience along the way and slowly I learned to put others first and to pray for others first. Because in the end we are all in the same boat one way or another-suffering and trying to cope. And when I’m struck down with another debilitating migraine and as I do my meditation in my dark room with my Migraine toolkit and fight it out, I take a moment to remind myself that there are others out there less fortunate that I am and who have it worse.
I have learned that there are people who cannot afford the medical care and medications I receive and that is unjust. I feel blessed that I do get good care and pray that others can have access to even better health care. I will always try to think the best and wish for the best of others as I fight through my attacks. I learned I am blessed to be provided for as I look at people in line at the grocery store, and especially the senior citizens. I see them digging in their purse or billfold to pay for their groceries and I wonder what hard time they are having and say a silent prayer for them. Or if I see a handicapped person I give them the immediate right of way or help them reach for something on the shelves if they appear to have trouble. Any kind of helping hand is better than none at all. I often wonder if they sacrifice food for meds or visa versa and what a terrible predicament that is. Then I’m humbled and shame myself not to complain. Then I will be at the deli counter and someone has waited longer that me, so I let them go ahead of me. Also if someone is in front of me in the checkout line and lacking some change for their purchase I will offer it if I have it not judging, but with empathy that they are having a hard time making ends meet-do they have to spend their life savings on food and/or medicines I often wonder. I do not judge but I have empathy and I realizethat after all these years that yes, I suffer horrible pain, but I will recover and continue on. I have shelter, food, medicine, family and good medical care so for that I have learned my pity party is No More. And I interact with people online that are more ill or as ill as myself, and I put the focus on them-not me. I will share my experiences if it feels right and maybe that is why I have this Chronic Invisible Illness-to help others with my experience and insight.
We don’t know the master plan of why this and that happens, and we are not supposed to know why, but we can do our best to conquer, survive and thrive. I have also come to realize that yes indeed there are others that have it worse than me and how dare I whine and complain about what may be trivial as compared to someone who may be terminally ill or have a more chronic condition that I do. It is not a contest of who is the sickest and it’s appalling when you see that play out in life, the “I’m sicker than you are because of this or that” or make a competition out of it. Come on, grow up people and see the bigger picture. It would do no good in the end and would only end up adding to my suffering and make me or someone else lonely, bitter, and resentful ole hag. And who the heck wants to be around that? NOT me! Attitude is half the battle and if you win that you’re on the home stretch. Life is what you make of it, as it’s been often quoted but so very, very true. And your attitude impacts your health-mind over matter. It’s been proven and from what I’ve tried to practice I’ve found it to be true. I’m human and I slip up from time to time, but then I will catch myself and put it all back on track. It’s a constant learning experience. I’ve learned doing a daily gratitude journal is a great way to reinforce this mindset, and to practice writing daily what I have to be grateful for. It’s all about keeping things in perspective. And also by doing daily Bible Devotions as well and incorporating them into my journaling and remembering while meditating through the pain or even on tolerable days-it doesn’t matter what the circumstance remember what I have to be grateful for and how fortunate God gave me the gift of another day so I make the best of it as best as I can.
I have learned to be a better patient as well. To research online before my appointments and take any documentation with me and especially make sure my information sheet I make up and take with me is better organized and updated with current medications, supplements and symptoms I’m having trouble with. I learned a valuable lesson from a pier online how to make a better patient form and my last visit I took my draft and the doctor was very appreciative. They see so many patients in a day that they don’t have the time to go through the electronic files and remember everything about each patient. I keep mine to two pages max as not to overload him/her and I update it as soon as my medications are updated and/or changed so that I don’t have to do it last-minute before my next appointment. I have come to be more organized in some areas but a work in progress in other areas.
**These are by far the best lessons I have learned-to be unselfish, compassionate, , patient, calm, focused, forgiving, dedicated, spiritual, humble and self-sacrificing. I have finally learned to stop fretting and worrying about tomorrow or the future-it’s out of my hands to an extent as God has the master plan. So I take each day as a present and consider tomorrow a gift. I have learned to love unconditionally even if it is not returned, to let go of past grudges-let it go and don’t fester on it-it only hurts you not the person your grudging. And to live each day like it’s my last. To not hold material possessions as more important than family, friends and life-you can’t take it with you and it’s only temporary while we walk this earth. We didn’t grow up with much and mom and dad always told us you came into this world without a penny and you will leave without it, so don’t put value on meaningless material things-God first, family second and friends. It helps too that my parents raised me this way-to do unto others as you’d have them do unto you. We were constantly told that as we grew up. It was actually hammered into us as well as to respect your elders and to always say pleaseand thank you, and to always behumble. And it’s not worth it to fight-who cares who’s right or wrong. Usually the person you’re arguing with will not change their outlook or perspectives, so why waste your breath and time. But to stand up for friends and family and lend a helping hand to others in need when possible. It hammers home the practice of turning the other cheek, which for people as a rule we are prideful and do not want to turn the other cheek and let any insult or wrong-doing pass. No, we want an eye for an eye and a tooth for a tooth. We want punishment-we want revenge. It eats us alive over time because we let it, and that negativity also feeds to chronic pain. We are not in general forgiving people. I have worked hard to overcome that thought process and have forgiven a past horrendous act against me physically and emotionally. My attacker did not ask for forgiveness, but I gave it after years of repressing it then seeking help and dealing with it to get my PTSD in control. I do feel freer to have done this and talking about it helps-that in and of itself if anyone takes away anything from this post it should be that-FORGIVE any past grievances, work on it with a counselor if needed like I did, talk to friends and pray, pray, pray on it. With work you can let it go and that too improves your outlook on dealing with chronic pain. There is truth in mind over matter. Practice and believe it because it’s true. Again, it will not cure you but makes the whole situation more tolerable. It’s ok to have bad days and slip, but recognize it, correct it, and get back in line.
I have also learned over time and research there is NO cure for this disease and have come to grips with it. I have made peace with it and even when I have sometimes well-meaning family and friends say I need to work harder and go places to be “cured”, it’s fruitless to try to re-educate them that this is cureless, I let it now go over my head and pass by me like the breeze and not upset me anymore. I have learned, the hard way, that they will never get it even seeing reports in print and online so why fret over it and stress over it. I’m at peace with it and let it pass me on by. That is a Blessing that I can come to terms with the disease and almost make friends with it by letting it be my teacher.
Well, mom and dad, it finally stuck and yes I did learn something after all. As they are watching down from heaven I can only hope I’ve done justice to their lessons taught. You cannot take Southern manners out of a Southerner, even when I’ve been transplanted to a Northern location 🙂
Sometimes Chronic Illness can be a blessing in disguise with all the lessons you learn along the way. Especially for me as these are my experiences and what I have learned and can attest to. You can learn how to be a better person and leave a positive footprint in the lives of others. I think that being so ill and struggling with chronic and most times excruciating pain daily, and focusing on being positive, peaceful and calm-meditating and praying through it with my calming mediation music, my darkened sanctuary, essential oils and my best puppy friend. That along with my parents teaching has made me a better person. At least I like to think so.
DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.
Migraine Carnival April 2013 Theme: Unexpected Blessings that have come out of our experiences living with Migraine Disease and other Headache Disorders.
(Submission 3-27-13)
Those of us that struggle with this Invisible Chronic Illness called Migraine Disease have heard it all and then some. Not once or twice but over and over again like a warped record that you’d like to take and bash against the wall into a million pieces so you don’t have to hear it anymore! You’ve tried to explain it over and over again to loved ones, family and friends. But they don’t listen or they don’t care to or they just don’t get it. Some days you’re just so frustrated it makes you want to scream! But other days your just so battle worn and weary that not only is your body weary and worn out so too is your mind, and you just mentally say to yourself “whatever” and curl up in a fetus position and want to be left alone in silence. We have to just face it-until they experience one themselves they will never understand nor appreciate the pain and the whole body experience one goes through when an attack happens. I have had to unfortunately learn to function at a pain level 6 and will not medicate until I reach a level 7. I’m in quite a bit of pain at 6 and make myself put on a brave face and its taken years to get to this point, its taken meditation and prayer, but I can semi-function but I cannot be overloaded or overstressed.
I have in the past, replied to a few but not all comments (depending on who it is-if it’s family it’s gloves off) with some sarcastic dark humor and off the cuff comments because they don’t listen to me any other way so I figure what the heck. Knock them off guard and counter attack is the best method-deflection has saved me a few times. Once in a blue moon it has not. But it’s been my ally a time or two because it’s made the other person really stop and think and I do believe it’s made an occasional person stop to think how idiotic they are. Well, maybe once.
My pet peeves based on my personal experience:
My biggest one (and everyone’s) you don’t look that sick to which you’d give a tart reply of “oh well hold on a few seconds maybe if I hurl on your shoes maybe that will convince you then”
One that gets me riled is can’t you take an Excedrin for that and get on with it, to which I have replied from time to time “well I tried M&M’s too because they are just as effective-close but no cigar so I had to give them both up and go to the doctor for real help. Mars was not happy but they got over it since they got more customers to take my place and Excedrin didn’t miss me one bit”
I still hear from extended family and friends about a “cure” they hear about or that I should go to Mayo. Again I have learned, slowly, to stay calm and explain “There is NO cure for migraine disease-it is a neurological genetic disease that they can TRY to control with hand me down medications and Triptans to abort migraines from becoming full blown migraine attacks, but again there is NO cure. I hear this is a cure for idiocy, but alas that has failed time and time again (heavy sigh)”
Then the ones that like to judge just how sick you are by the look in your eyes by a number of how sick you really are to which you say “I just medicated earlier so you can’t judge that way” Or I have replied to a couple of people “I figured I better put on my best face so I could give the undertaker a vacation” Or better yet “If I really looked how I felt I’d scare the crap out of you or else I’d be a convincing extra in that new zombie flick that’s out now in the movie theatre”
But how about the ones that say If you get out of bed and get outside and do some yard work or mow the yard you’ll feel much better than lying in bed with an ice pack and the curtains closed to block the sun, to which you reply “Leave me now-I’m practicing to be a vampire for True Blood and your ruining my practice for daylight down-time you irritating mere mortal.”
Or how about what another Migraine AGAIN didn’t you just have one, to which you’d reply “Well, I’m sorry if my schedule and yours isn’t lining up. I’ll talk to my head when it lets me regain control and see when we can pencil you in for a tentative spot, subject to change since I have basically no control”
Or you’re in bed with your head packed in ice, heat pad on your neck, room totally dark, everything shut off, you just finished your abortive med with oxygen therapy and you get the comment “what have you done all day, the house needs cleaned” to which you reply “You just missed the toga party and I’m having so much fun here can’t you see”
And an oldie but goodie, are you going to get up and make supper OR what’s for supper I’m hungry, to which I’d reply “I have my bucket here on the side of the bed-would you like me to reheat it for you and add some veggies for a stew?”
Or yet another oldie but goodie, they email me or come to me and say here’s an article they read I should see to which I replied “That’s from a book I purchased in 2003, so that’s old news, it was a good book I read it a few times if you care to borrow it. Thanks all the same I’ve been researching migraine disease for 25 years and your info is old news so leave the researching to me please I know better what to look for since I’ve been at it for so long”
And still yet, I get all the time about supplements or meds to try to which I respond “Been there, done that, tried that-cannot use that-it interacts with my current meds but thank you all the same leave the research to me and my doctor-we know what’s best for me and what will and will not interact with my current regimen”
They all still rile and irritate me but I have learned to knock them off guard with sarcasm and deflection tactics. Since they won’t listen to reason they respond or change the subject or until they wake up and realize what’s going on, or when they are made to feel like an idiot or the brunt of a joke or that they made a mistake. That gives me a breather sometimes and gets them off my back which is my intention, which lessons the stress which we all know stress is not good for a migraineur especially when you’re in the throes of an attack. If you like any of these feel free to use them or expand on them. Or feel free to share some of yours with me.
If you do not suffer from Chronic Migraine Disease then do not waste your time nor mine by posting a reply to my post. It will not be replied to as it only shows ones ignorance as I cannot make it any clearer as to the fact I am speaking TO MIGRAINE sufferers and the impact the disease makes on THEIR lives!! If you don’t suffer Migraines you won’t get it so move on!
Or else just sit back with me sometimes with that dazed and bewildered look as you stare at those repeat offenders and wonder just what is really going on between those ears of theirs, besides a wind tunnel. I mean honestly!
DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.
New Years resolutions are easily made and easily broken. Usually they last a week or so. But to make a New Life Change for Better Health and to actually get down to the nitty gritty, take control of your health care decisions, be more assertive and pro-active is a life long commitment. And if you have not done it by now what better way to start than by doing it as a fresh start to the NewYear!
I made the 1st step by finally taking care of nagging and persistant on-going pain that was nottotally migraine related and finally getting it checked it. At first it was just a little bothersome and I ignored it. Then it progressively got worse that by late summer early fall I could not ignore it anymore. Thanks in part to the great support from the patient advocates and other members at Migraine.com, I did some research online and started putting the pieces of the puzzle together, adding up 2+2 to figure out that I must have Fibromyalgia. Thanks also to Dr. Marcus for basically reaching through the computer darn near to slap me across the side of the head to say “duh”. Or at least she should have!. More sensative than prior years to smell, lights, sound, cold, heat. Constant chills, deep muscle aches and sore to the touch. I once enjoyed deep tissue massage but now it hurt like the dickens so I declared NO MORE of that.
My already sensative nose could now pick up smells like a bloodhound and drove me into more migraine fits. I had no idea that Migraine sufferers could also suffer from Fibromyalgia until late last year. Lots of lessons I have learned but lots more on the horizon I fear. My IBS that I was diagnosed with in early 2002/03 was under control with a strict non dairy and non soy diet was now out of control, and I was still on my strick diet. I was ticked but also alarmed until I discovered online that is part of the Fibro. And then when the painful bladder started I thought holy heck (cleaned up the language here) until I read that was also from the fibro. But the Cymbalta is suppose to help with that. So fingers crossed I took my 1st dose on January 8th that it works. My Gerd, also Fibro, seems better since I started this med and stopped the Remeron. Doesn’t work that fast, I know.
My Neurologist/Headache Specialist nor my MD came up with the diagnosis. With my Neuro we concentrated on my migraines which were driving us both batty, so in his defense I really didn’t complain about the complex body aches and pains and all that good Fibro junk. I had to make printouts and go to my MD and take charge and say “look, I have all these symptoms, they are not migraine related and I seriously think I have this disease. Can you check this out and confirm it and help me and treat me for it? Well, this was in late November and my MD ran a bunch of blood work she said to rule out various other diseases
before she’d “officially” diagnose me with Fibromyalgia and then she’d treat me for it with Cymbalta. The lab messed up on my blood work twice and I have to go in a 3rd time for yet another blood draw for a SED Rate and Lyme Titer before she will even see me again to diagnose me and treat me! Needless to say I’m searching for another MD.
I saw my Neurologist/Migraine Specialist this week on the 8th. He was flabbergasted at the fact I’m not being treated. He said without a doubt with my symptoms and pain points I have Fibromyalgia no questions. He put me on Cymbalta. He said to go through with the blood work because the SED Rate is important and to have all the results sent to him.
But the point is that you don’t sit back and let any doctor treat you with disrespect, or as less than a human with physical needs. Here I am in pain and suffering and I keep being put off. This makes the 2nd time they called to cancel my followup appointment because of botched up lab work that is not my wrong doing, but yet my “official” diagnosis and treatment is on hold and being held hostage because of lab error and a doctor with rigid inflexible standards and will not take a person suffering into account and help them out in the interim.
But my goal other than to find a competant MD is to work with my Neuro to get off of some of these meds. He took me off of the Remeron right away and is weaning me off the Amitriptyline so I will be off that in a week. The Tizanidine will be taken PRN as the Cymbalta will take the place of those 3 medications. But I’m hoping after I’ve been on that med for a while I can be taken off the Diazepam.
I will continue to research online and if I find treatments or medications that sound promising that I’d like to try I will print them out and take to my neuro, like I have done in the past, and we will discuss if it’s right for me and if this is the right time to try it or if not to put it away for a later date or if he doesn’t like it he will tell me why and we will debate it until one of us gives in or we both come to an agreement. At least with him I can talk to him because he is willing to listen, he’s open to my ideas and input as I’m open to his. We have good communication. I just wish I had found him 25 years ago. But I cannot look a gift horse in the mouth. At least I have found him now all thanks to my therapist-she referred me to him and I cannot thank her enough.
And then I have to learn all there is to know about Fibromyalgia now as this is a whole new kettle of fish to me. I have to start very slowly on an exercise regimine to control the pain and the very intense muscle spasms. Night before last I woke up in the middle of the night with the most severe muscle spasm in the calf muscle. It would not go away. I tried to stretch it and it spread to my hamstring. I laid on the floor to do the hurdler stretch and I was about ready to cry when the bottom of my foot started to cramp. Yipes! I took a Tizanidine, used hot pads, that morning took a few hot Epsom Salt baths. That leg and foot hurt for a good 24 hours. Yes, I need to start a slow and steady exercise program to make sure that does not happen again.
I have always eaten fresh prepared food made from scratch. I cannot eat anything prepackaged or premade due to chemical sensativities. But I do need to cut back on simple carbs and eat more complex carbs and more fresh veggies and fruits. If fresh veggies are not an option I can go with frozen. I need to stay away from canned to watch the salt intake. I have to limit my meat intake to once a week. I eat a lot of boneless skinless chicken breasts but I have committed to eat more grilled or broiled fish. We got some Salmon fillets and divided them up in portion sizes and froze them. Finally they had a sale on them. Got some other fish as well but Salmon is my all time favorite. I grill all year round, even when it snows. But I draw the line in a snowstorm so then it’s under the broiler in the oven.
I need to meditate more and get more peace and tranquility in my life and try to push away the stressors. If I cannot remove the stressors I need to find better coping mechanisims. I need to see my therapist more often. She has offered to do sessions via Skype for when I cannot drive due to visual aura’s or disturbances so I’m going to have to take her up on that. I need to have a steady anchor in my life that I can count on that can counsel me and keep me on steady level footing and help me cope with the insanity. And I also need to keep my depression in check, as well as my anxiety and OCD. Without seeing my therapist on a regular schedule I have seen how I have slipped back into old patterns of self-doubt, anger, resentment and deeper depression. I am sinking into the despair that put me into the hospital last summer and I cannot afford emotionally nor monetarily for that to happen. I do not want to admit defeat or failure or repeat the same cycle of self loafing and self hate. I must get this under control and do it fast.
I need to focus on doing all of the things above and by doing so I hope to get the migraines under control and the Fibro pain under control and then I can get my life back under control so that I can participate in life and the life of my family and friends. What I would love to be able to go out on the spur of the moment to the stores and go shopping, or go see a movie (taking ear plugs of course and a sweater even in the summer, brrrrrr) or on a road trip on a vacation as a getaway and not worry about getting sick and ruining everyones fun and my being totally miserable. Having an impromptu cookout and inviting some friends over or family. Or being able to keep up on the housework for a change instead of having the housework bear down on me and seem like a Mt. Everest that I cannot conquer.
This is my New Year, New Life Change Game Plan for Better Health. My Take Charge Initiative is not a New Years Resolution because on this I cannot falter because these diseases will be with me for the rest of my life. And if I fail on my Game Plan and Life Change I will only become sicker and not better. And only God knows how sick and tired I am of being sick and tired! I want to feel well again! I know I cannot regain good health and be 100%, but if I can get 50% I’ll be happy with that! I try to think of the glass 1/2 full. Thinking positive thoughts will bring about positive changes.
Oh, and by the way-Happy New Year.
Stay Happy, Healthy, Peaceful and Safe
Sincerely
Julie
ps
I just got in the mail a survey form for my MD. Hmmmmmm, this should be very interesting how I fill
this out. Got a gut feeling she won’t be getting 5 stars from me, ya think? And neither will the affiliated lab for that matter.
DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.
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JulieG350 A Day in the Life with Migraines 