The Dark Side


2013-09-20-11-09-27[1]

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”.

evil-eye

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.

good angel bad angel

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.

2013-09-20 10.34.46

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.

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.

Social Media and Invisible Chronic Illnesses-The Importance of building a better support system


5-13-13

Social Media has been under scrutiny lately for giving too much exposure to all that is negative-bullying, bashing, hate, ignorance, obscenity and just plain rudeness. But it is not being given the real credit it deserves. There is a huge benefit to social media when it comes to the ICI community. Especially to those who cannot get out and connect to people as often as they’d like on a one to one basis or in group settings. Some people are so disabled by their chronic illness that they cannot get out and socialize at all and depend on their contact be in Face Book, Twitter, Google or IM (just to name a few). I really wish social media was this easily and readily available 25+ years ago when I started to struggle with Migraine Disease. What a comfort it would have brought and more knowledge in the illness by connecting with others.

 Images of Internet Browsers

And there is access to websites that specialize in these Chronic Illnesses where you can also interact via blogs, forums or email. There is a lot more information readily available for those learning to research on their condition, or for those who have been struggling for years with no end in sight that needs the comfort of interaction and support from others who suffer the same affliction.  I have also come across several sites that state how social interaction is vital to human health and this is just one of many to verify that concept: http://www.traumaregister.co.uk/Articles/Human_Health_Contact.htm

http://www.mayoclinic.com/health/support-groups/MH00002

http://www.worldusabilityday.org/social-networking-health-care-part-i-designing-trusted-peer-peer-support-groups-using-social-network

http://www.worldusabilityday.org/social-networking-health-care-part-ii-managing-trust-peer-peer-support-groups-social-networks

 

So no matter how you interact with people-if you can make it out to church gatherings or family gatherings, great. If not I strongly encourage you to join support groups online as it is so beneficial to interact with others and not stay cooped up in your home all alone.  And you don’t have to be computer savvy to interact with people online. You just need an internet connection, a basic computer or tablet and bookmark sites in your toolbar or favorites list. It’s really easy to set up a Face Book account as well and you can search for support groups based on your Disease and follow that group and interact on some of the ongoing conversations. Or start your own-don’t be bashful or scared of the network media. But when you can if at all possible it is still important to try to get out when you feel like you can tolerate it and interact with people in an individual setting or a group setting. Go to church, bible study, quilting group, sewing class, the library, if you live in a  town with well maintained sidewalks go for a walk on a clear day (wear your darkest sunglasses) and take a stroll and just say hello to people that walk by. With a smile on your face and a friendly hello can make someone else’s day and yours as well when you get a friendly response.

 Image of social gathering

Today’s cell phones are also a great form of Social Media, to text people for support-to let them know your struggling and need help at that moment if not just a kind word. These newer Smartphone’s are also an important role as you can have Internet access and you can keep in touch with your Media Contacts by having Face Book, Twitter, Google and even checking out some of the blogs you subscribe to. It doesn’t matter how you interact but just as long as you do so and on a regular basis. Even to just send a message to someone you know is struggling with a simple message of “thinking of you” or “sending hugs” means a lot to someone who is struggling. It means a lot to me when I receive messages of support.

 Images of Cell Phones

I have become a lot more involved in Social Media as of last fall when I was at my lowest point in the deep pit of despair and depression, and found comfort in blogging for the first time to express myself and to also find support groups via fellow bloggers and support groups on Face Book. Face Book has come a long way from being a tool for teenagers to interact, and sometimes bully and terrorize others. Sadly it’s also a place where adults too can be bullied and harassed. But for the most part I have found it to be beneficial. And to send and receive quick messages of support or updates via Twitter is a great boost when you’re having a low day.  And if you ever come into contact with someone that harasses you or tries to bully you on Face Book you can block them from your page and report them. So far I’ve not had an experience in the past few years so thankfully I can report I’ve not had to block anyone.

 Social Media Icons

I have become a member of 2 very important support groups via Face Book: CMA-Chronic Migraine Awareness and The Coolest Fibro Chicks around town for Support and Love. I felt honored to be invited to join their closed groups and have met many wonderful and inspiring people. In the Invisible Chronic Illness (ICI) community for years we have been neglected, ignored, trivialized, harassed, belittled, mistreated, misused, abused, traumatized, stigmatized, misunderstood, under medicated, overmedicated, not medicated correctly, misdiagnosed, under diagnosed, SSD denied, SSD appealed, SSD approved, legal issues, divorce, break-ups, family dissention-the list is endless and I could really bore you if I continued. But in an actual support group you can interact with others that have the same illness as you and not be subjected to any of that abuse. You are accepted and given love, support, kindness, consideration and most of all your given validation and a place to share without judgment. We are accepted for who we are and what we go through and we uplift each other and give each other hope. And in addition to that we learn more about our disease by hearing stories about how others have achieved goals and what they did or used so you can implement those into your plan of care.

 649512y4khod2fs

I have learned more this past year than I have in the whole 25 years of researching on my own. At first there was hardly any information and it was so frustrating to try to find out new medications and treatments to try. Then you try things by trial and error on your own because back then doctors were not that well educated, and frankly several of them still are not. More times than not I clearly remember taking a printout from a site to my doctor on a treatment or medication to try. That says a lot when the patient is more researched on a medication or therapy than his/her own doctor is. But it has happened and continues to happen because Migraine Disease is still a work in progress. At first they thought it was vascular and gave medications to control the constriction and dilation of the blood vessels thinking that inflammation from that was triggering the migraines. Then they thought it was chemicals and they gave medication to control the Serotonin in the brain because they believed Migraine Sufferers either had too much or not enough of it. Now they’ve come to the conclusion that Migraines are neurological because it affects the whole body and not just the head pain. Bingo a light went off in someone’s head someday to finally figure that one out. It affects the WHOLE body and the head pain is only 1 out of many symptoms and problems with a Migraine Attack. That is why when people have Chronic Daily Migraines they are so disabling it renders the person immobile and unable to work or interact with family and friends. Everything is too painful and hard to endure.

http://migraine.com/blog/recommendations-for-those-with-chronic-migraine/

http://migraine.com/blog/stigma-makes-it-harder-to-live-with-migraines/

http://migraine.com/migraine-basics/migraine-phases/

 sad kitty face

Over the past few years’s sufferers have started their own blogs to share their stories, their pitfalls, their success and trials along the way. I greedily ate up all the information, interacted with the Arthur of those blogs I really liked and got some really valuable information, and I bookmarked or subscribed to their page to get updates. I have so many bloggers I follow and each and every one of them is a source of invaluable information as there is no one spot on the web to get ALL your information from. I do have a couple of main websites that are my go-to for current information and updates and I really interact with all the writers who contribute with their stories and I consider their information top notch and invaluable. I consider these sites and all the authors to be my Migraine Mentors:

http://migraine.com.

http://www.puttingourheadstogether.com

http://somebodyhealme.dianalee.net

 

And these go-to sites I consider my fibromyalgia Mentors:

http://chroniclesoffibro.blogspot.com

http://fibro2010.com

http://debsfibromyalgiablog.blogspot.com

 

Of course I follow so many other sites I cannot list them all here and all the other bloggers are valuable to me as well for the information they put out there and the support and encouragement they readily provide.  I just started to blog last fall and I found it to be enjoyable to share my experiences and trials. Even if some of my experiences were not pleasant ones it was therapeutic to write it down as so many other fellow chronic sufferers can relate and interact with you and you can share stories. If you’re not a chronic Migraine of FM sufferer then you cannot understand the importance of blogging about a chronic condition that takes away your will at times. Those people have no business leaving negative feedback when they have not walked the walk. I had not encountered negative feedback on my blog until this past month, but I deal with it and consider the source-uneducated people that have not experienced the pain that we all have and still are on a day to day basis with constant medical help and no relief from pain. They are the cold-hearted and thoughtless and we encounter “those” type of people daily so we should have learned by now to let it roll off our backs like water off a ducks back and not let them get to us. Our goal is to interact and share with fellow chronic long term pain sufferers.

 angry-cartoon-woman-seated-shooting-computer1

And if the person reading this right now doesn’t experience the chronic pain of daily Migraines and the whole body experience that goes with it , or you do not experience Fibromyalgia then you should not read my blogs or leave comments. You should not visit anyone else’s site either that contain the same topic matter. No matter where you go you are bound to find mean spirited people so just ignore it-respond politely to their comment and go onto the next one and forget about the ones that don’t matter. As you have to learn to do in real life-interact with positive people and stay away from the negative ones as they are the ones that always want to bring you down. But if you have not blogged before I do encourage it because it is a rewarding experience and you do get a lot of positive feedback and you get to interact with others in the community as your list of followers increase and you increase your list as well.

 computer-cartoon-happy-guy2

So no, Social Media does not belong to just the teenagers and young adults anymore. And you are never too old to learn. So get online and get started today if you haven’t already.

 

Until the next time Blessings for a pain free day.

Julie

 

“Happiness cannot be traveled to, owned, earned, or worn. It is the spiritual experience of living every minute with love, grace & gratitude.” – Denis Waitley

 

Disclaimer: Nothing on this site constitutes Medical Advice. I am a patient who has been educating myself through the years and I am sharing my own personal experiences about Chronic Migraines, IBS, OCD, PTSD, Panic Attacks, Depression, Fibromyalgia and CFS. Contact your own Health Care Provider for information about your own particular needs and medical advice.