The Dark Side


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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.

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

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

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

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

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

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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.

#MHAMBC Migraine & Headache Awareness Month #14: Temple Grandin: “A school bell sounded like a dentist drill going through my ears”: Many of us have wondered to ourselves, must you live so loudly? How do you cope with phonophobia (noise sensitivity)?


June Migraine awareness month

I have gotten behind on my blogging due to an extended Migraine cycle, so I am trying to catch up. Due to recent tragic events In the CMA Community, it is more important than ever to get the word out so that people understand Chronic Migraine Disease.

 

How does one with Migraine Disease and phonophobia deal with this sometimes obnoxiously loud world. During a Migraine Attack I am more sensitive to sounds than usual and I have to resort to ear plugs, or semi-silencing earmuffs to try to block out the excessive noise, as it makes it feel like daggers going through the head. I try to keep myself from loud places but sometimes it’s impossible. So I do travel with earplugs all the time for when I need them.

At home it’s difficult as well. When my daughter and husband are gone I have the TV off and it’s blissfully silent-except for one of the dogs going into a barking fit (ouch). But as soon as they come home they have to turn on the TV like they cannot live without it and blast up the volume and leave the room? So I either turn it off or turn it down. When they come back up goes the volume again. So even at home I cannot avoid noise, even though I find myself repeating what they already know-turn it down it hurts please! I resort to ear plugs or leave the room if it’s too much. When I’m cooking and use my stand mixer I have to use earplugs plus those earmuffs as it’s pretty noisy but some things I cannot do without my mixer. Same when it comes to running the vacuum-earplugs and earmuffs.

In the car I have the stereo turned off. I cannot tolerate the noise. But if my husband or daughter are driving they have to have it on. My daughter has hers loud but has slowly learned to turn it down, but not by much- earplugs. My husband has learned to turn down his stereo, Thank God! I can listen to my iPod sometimes but at the lowest setting possible and then it’s to listen to my meditation music or Binaural Beats music.

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

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

My Mission thus far to search for Chronic Migraine coping tools to add to my Migraine Survivalist Kit-updated 5-3-13


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Oh the sun. It’s great for normal people but to those of us who suffer Chronic Intractable Migraines seeing the sun is like being set on fire like a fictitious vampire exposed to direct sunlight. The sunrays feel good on your body. but are so bad for the eyes. Making the Migraine attack more unbearable as the pain increases in sharp stabbing pains when outdoors, or even opening the living room drapes. I often feel like a vampire-more comfortable in the dark than outside in the bright sun. Overcast days are good as long as it’s not raining or snowing. We don’t ask for much huh? Photophobia is a common problem with most Migrainers and starts in the Prodr0me stages, but can last through most of the Migraine attack.

Over the past couple of years I’ve tried in vain to find the darkest tinted sunglasses possible to block out the glaring sun. But I have not hand much luck as to date. What appears to be dark-colored lens doesn’t always mean it blocks out that much of the light. I have lost count out how many pairs of sunglasses I’ve bought the past 2 years alone. Maybe 6 or 8? The ones that were just pure crappy I tossed them. The local stores do not have much of a selection to go by, and frankly my budget will not allow me to go to a specialty Migraine eyeglass manufacturer and cough up almost $200.00 for just one pair-and that’s not even RX glasses. So just today I went to Amazon and for around $30-40.00 I got 3 pairs of sunglasses hoping that these will work. They are biker glasses and have foam inside the frames so they fit close to your face and block out the wind. My hope is that they block out as much bright light as possible. So this is the selection of what I ordered:

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61snno8VyxL__SL1000_ Sunglasses for Migraine Survival. Got this pair today 4-27-13. They are not dark enough to block the sun as much as I’d like, but they are polarized so there is no glare.

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These don’t really block the sun that well, but my RX glasses fit inside perfectly and the foam padding makes these fit close to my head and are comfortable. I guess I will keep them.

So we shall see. Hopefully 1 pair that works will make me happy. Two and I’d try to teach myself to do cartwheels, even thought I’ve never done them before in my life and I’m notoriously a Klutz, and that is meant to be with a capital “K”.

I have used on a nightly basis my H2EO Ultrasonic Diffuser with a mix of Therapeutic Grade Essential Oils. Over the past 3 months I have collected over 50 different essential oils and a few books that have recipes and hints for doing your own blending. So I’ve tried my hand out at making my own blends for the diffuser as well as for massage oils.  The model I got is pictured below. It works quite well and has 4 program modes and holds 8 oz of distilled water. When it gets down to 2 oz it automatically shuts itself off. I have a big problem with manufactured scented products, but I have no trouble with essential oils.

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I have the Breo iSee 371 massagers which has been of some help. I’ve used it like crazy the past 2 days. You make it fit as snug as you can stand it and it will puff up with air, heat up and then vibrate to massage the sore temple and eye areas that are common with migraines. I do have to admit it is on the noisy side so if my migraine has me too sensitive to noise I will wear ear plugs. This runs on AC or Double AA batteries. If you use the batteries it’s portable and you can use it on car trips and plug into the base control unit the supplied earplugs to use the music feature. Or use your own MP3 player. The Breo is pictured below.

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I have also received and mixed for FM muscle spasms and pain Veterinary strength Absorbine and DMSO. 4 oz DMSO to 3 oz Absorbine in a lotion dispenser and rub on sore spots. I picked up this hint by reading some blogs. It smells minty and works pretty well although I do not recommend it for everyone. If Absorbine Jr. bothers you then you want to steer clear of the stronger stuff. And this is in no means an endorsement. These are just ticks and tools I’ve picked up to help me ride out my Migraine Storms. I have found this works best for ME than OTC pain liniments.

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I have also acquired and am using the Heavenly Accupressure mat. It feels pretty good to me but I’m use to this sort of thing. For others you will want to use the guidelines, if this is something you wish to try, by using it in 5 min increments and building up time. It is best if you use it on bare skin. I will lie on it for almost 20 min per side and really feel the blood circulating. This helps with the pressure point tenderness and pain and increases circulation.

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For deeper muscle penetration I have acquired and use on occasion The Soft Percussion Thumper massagers. It works deep into the muscle fibers unlike typical massagers and works out the soreness. If the FM flares up too bad and my tender spots on my upper back, neck and shoulders are too sore I cannot use it because it hurts too much. But when my neck and shoulders are really sore from a marathon Migraine I use this and would not imagine using any other type of massagers.

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And for those body aches that won’t go away and the Hot Epsom Salt bath doesn’t do the trick, I have this large heating pad that has a foam insert so you can use it wet or dry. My daughter has taken off with this and I will hunt it down after I’m done with this post.

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Also sometimes during a migraine when I retreat to my room and curl up in bed I take my microwave bed buddy and booties, as at times during a migraine it’s easy to get chilled and besides the bed buddy is great for shoulder tension and pain.

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And I cannot do without my oversized eye mask. Even though I made sure my bedroom is dark, with room darkening blinds, foam backed curtains and dark blue walls and no window in the adjoining bathroom, to a Migrainer in a full-on attack any light, even low light, has to be blocked or the ice pick occipital Migraine will peak at it’s worse (if it’s possible to get worse). So utter darkness is my friend, not my foe. Ironic that as a child I feared the dark. Now I crave it. What a reversal.

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And I cannot do with the most simplest of tools that I found out about by one of my Migraine Blogging Mentors. Plain ole simple Sea Bands. Wear them while I take my Zofran and chew on organic peppermint candy or take a whiff of pure essential peppermint oil-1 or 2 drops on a cotton ball is all I need. I found peppermint works best for me, ginger works best for others.

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Update 4-27-13

I just knew after I posted this I forgot some things that are in my Migraine Home Survivalist Kit. These help me ride out the storm when a Migraine Attack occurs.

My Cluttered Bedside

My Cluttered Bedside showing all my essential Migraine Survival Tools at arms reach

My side of Headboard

My side of Headboard with my aromatherapy diffuser, iPod, and a couple of bottles of essential oil rubs I blended

My Bedside Table

My Bedside Table with my Bedside Emergency kit in tote w/meds and notebook for recording meds taken

My Bedside Table

My Bedside Table Emergency Kit top layer-peppermints for sour stomach, stash of earplugs and saltine crackers

My Bedside Table

My Bedside Table Emergency Kit bottom layer-all my duplicate abortive meds, Rolaids, straws and q-tips, alcohol wipes for Imitrex Injections.

My Cluttered Bedside

My Cluttered Bedside on floor near bedside stand I have my Breo Eye massager, Absorbine, DMSO and the extra bottle contains the Absorbine and DMSO blended ready for use on FM pain or temple/head sore spots.

Top Drawer of my bedside table

Top Drawer of my bedside table contains my collection of Theraputic Grade Essential Oils. Kept in dark cool spot to use in diffuser or make oil blends-bottom drawer contains empty amber bottles, extra nasal cannula tubing for O2 and extra hand wipes and mints.

My side of Headboard

My side of Headboard up on top contains my backups of Migranal Nasal Abortive Spray and extra earplugs.

My Stash of various ice packs

My Stash of various ice packs in the freezer ready for my use. My favorite is the old fashion ice cap very upper RH corner-it lasts longer as the ice cubes slowly melt in the insulated bag and the outside is soft material so I can put it directly over my eye socket.

My Supplements

My Supplements, Minerals and Other Nutritional support for health and for Migraine support

Emergency Migraine Meds

Emergency Migraine Meds-comparison side by side. LH is kit I carry in my purse w/all meds needed for Migraine Abortives and RH is my bedside Emergency kit w/a double of my Migraine Abortive Meds. Pretty expensive to suffer from Migraines.

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I got a Buckwheat pillow for sleeping-after reading reviews it’s suppose to help w/neck pain and migraines. I got this 5-2-13 and already I can tell there is not as much pain as I had before when I get up. It’s a little stiff at 1st but actually has gotten a little more comfortable. I got also on 5-2-13 Badger Stress Soother Balm, Salonpas pain patches and CryoDerm Pain Relieving Roll on. The patches come in 7 pouches that are easy to travel with and they include 20 patches each travel pouch. Size is 2.56 x 1.65 so it’s for smaller areas. Wanted to get some larger ones for shoulder and back but too much $$.

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Today 5-3-13 I got Tiger Balm and Sombra Cool Therapy and Tiger Balm Extra Strenght to add to my Salonpas pain patches, CryoDerm Pain Relieving Cryotherapy Roll-on and Badger Stress Soother Balm.

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I got also 5-3-13 this bigger purse than the original one. It’s roomier and it is definitely the size of a carry-on bag but if I have to carry my portable kit along w/a couple of roll-on gels for pain it’s needed. The other bag went back.

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5-3-13 Inside view of new bag-larger and roomier but hard to tell from this angle. Won’t bore you with more pictures.

These are just a few extra tricks and tools that work for me that I’ve found them along the way. My portable Migraine Toolkit I listed in an earlier blog for tips and tricks I’ve learned to cope with Migraine along the way as it interferes with daily life. I hope you have found some really good tools to help you. Now I’m off to use my Bed Buddy-my neck muscles are pretty stiff from the past 3 day Migraine. So until next time wishing you all a Blessed Pain Free Day and be Happy.

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Blessings

Julie

This is not intended as a Medical site and this does not constitute Medical Advice in any shape or form.

Please consult your family doctor or a medical professional if you wish to incorporate any of these items into your Migraine preparedness toolkit. This is not an endorsement for any of the listed products. This is just the brands I happened to buy that I tried and found to be keepers.

Gardening is theraputic for the mind and soul-Getting your mind off your Disease by finding a hobby.


I discovered the love of gardening last year when I was at my lowest point in life. Depressed and in despair over the constant migraines, body aches and pains and you name it-it was bogging me down. I had yet to fully learn the coping skills I have in place now, so looking back at that time last year, this garden actually saved me! It made me feel productive even when I’d forget things constantly, I’d never forget each morning to go out and water my newly planted babies and take care of my established plants from prior planting a couple of years ago by my best friend Heidi. She planted Mum’s for me and the Daffodils and Crocus. Those plants are all lined up between the sidewalk and side of the garage. I think that’s why my Mum’s have come back each season for about 5 years now. But I had a purpose. I wanted to make the front more inviting as I had let it go. It basically became a mulch garden a few years ago by my husband and I hadn’t touched it since. After my mom passed in May 2003 I bought a concrete Angel statue and it was randomly placed in this area not knowing at that time what to do with it. When my dad passed in April 2005 I went to the same place I got the Angel and I got 2 large concrete stepping-stones. I had them willy nilly in the garden with no real placement.

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(Pic#1 this is the front w/old mulch)

(Pic#2 Mulching in process)

(Pic#3 My garden stepping stones)

So in the spring of 2012 I decided I was going to do a Memorial Garden to honor the memory of my loving parents that I miss dearly. Their ashes are buried in the very southern tip of Missouri and to drive from this location in Michigan to there takes about 11 hours one way. And that was with my husband doing his heavy petal to the metal. We went down there on Memorial Day Weekend 2005 to bury their ashes in the family plot. That was their request and I was the executor of the Estate and I followed all of their verbal instructions they drilled into me for years to the letter. My Aunt that lives down there had already purchased their headstone at my dads request and he paid her. I thought it was morbid at the time him showing me the picture of the headstone in place with mom’s info filled out. It made me feel sad and empty. So when dad passed my Aunt said she’d fill out dad’s part instead of sending a card or flowers. It’s a very nice headstone, if you can call them nice. It’s black granite.

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(Pic#1 The garden w/new mulch and new plants)

(Pic#2 Another view looking from the South)

(Pic#3 My Mums in early Sept after pruning all summer)

Anyway to move out of this morbid train of thought. It was just to give a little background to my garden planning. My mom loved the color pink and my dad loved red. I am partial to red, but I love blue and my best friend and sister like purple. My friend always loves my lavender I planted many years ago. It needs some major tending to now that I’ve learned after the fact you need to prune it, because now it has some woody growth to it. It needs a major pruning and I pray I can do it correctly w/o hurting it. I have always loved Lillie’s, especially the Asiatic ones. I like the Day Lillie’s too with all the different colors they have. So along the garage side I added 4 different sizes and colors of Day Lillie’s behind the Mums and near my Honeysuckle. That is where I put my Angel as well. I needed something there that would bloom after the Daffodils and Crocus but before the Mum’s. I’m still pondering if I should add anything more there….

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(Pic#1 My Memorial to Mom and Dad-Completed)

(Pic#2 My Angel Illuminated at night)

(Pic#3 Late August things really started to grow, Yeah~!)

On the other side of the garden, the North side, I planted 20 mixed Asiatic Lillie’s. To my horror all summer I was battling a mole varmit! He came and ate all but 3 bulbs by August, but by the end of the month those 3 were gone! I did all I could think of-traps, grape bubble gum in his tunnels and I was also told to place moth balls around the base of the bulbs. To no avail he still gobbled them up. I was ready to take my gun out there and shoot him. Sometimes I’d be out there and he’d zip from my lavender, across the front edge of the garden to under my Mum’s. I’d race to try to stomp him but being as uncoördinated as I am I missed and almost fell all the time! But to continue on with my saga: I planted 4″ potted Little Princess Spiraea, in the corner on the other side of the picture window I planted 2 Black Beauty Elderberry (I know I need to keep it pruned so it won’t outgrow that space, but it looked so cool) and in the front of the bird bath I planted Veronica Georgia Blue (sad to say of the 6 I planted only 3 have survived).

Yellow daylillie Christmas Red Daylillie

(These are the Day Lillie’s that are on the garage side wall-survived the mole invasion)

It had been a few years since mulch was put down and it was worn down and worn out. I was crazy to think that by buying 6 bags of beautiful red mulch I’d have enough! Hah, it barely filled in the section by the North wall! By the time it was all said and done, the whole area re-mulched, I was 20 bags into it!! Quite expensive but there was no truck available to get any in bulk and to get the color I wanted-Red. Vivid Red.  I then on a whim found some fantastic Bronze finished solar lights I put alongside the sidewalk to illuminate the way to the front door. They were on sale and a set of 8 which I considered quite a steal (until I realized why when getting the garden ready for winter-the finish was coming off and they started to rust 😦 )

Just planted Little Princess Spiraea

(The top picture is my baby Spiraea at just a few weeks and on the bottom it has doubled in size in just 1 month)

Around the Angel it looked incomplete and I was figuring out what to do with it. I came across the idea to get 2 solar lighted memorial markers to put on each side and a small bag of white marble chips. I got through a craft store a small bag of white stones to put in the Angel’s bowl she was holding. Then I got to thinking after I saw an advertisement banner searching online, I got 2 personalized stones that represent my mom then my dad. Then it seemed to come together for me.

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(one of the other many visitors that came to my garden-we have many rabbits and as a result many Coyote in the middle of the night)

I made a point of it each morning to go out and water my new plants, I called them babies actually, and the older plants as well. I’d weed and put down more Preen. Preen became my best friend as well as Miracle Grow. But while I was out there every day, even when it was hot but the sun didn’t hit that side of the house yet as it faces West, I’d forget my worries and concentrate of making my plants thrive and grown. Plus fighting that varmit! It turned out to be a hot and dry summer so I had to tend to my garden every day. And since it was in memory of my parents that was extra motivation. I plan on adding more to the garden this year, a vibrant red plant (Perennial is a must) to surround the Spiraea and fill in the blank spaces. I’d like to do Lillie’s again now that I got a great hint on using chicken wire to cage them in when I bury them. Wish I had known of that last year. Oh well I got those bulbs on sale so it’s not like I lost a lot of money for them to turn into mole food. It’s just the idea of it.

This part of gardening I detest

(This is one garden visitor that freaks the crap out of me-the other one was a small garter snake slithering under the lavender-I stayed away from that for the rest of the season-no weeding around the lavender!)

So along with gardening that I discovered took my thoughts off my problems, I also did journaling and then blogging. But my best friend was right. And so is my new blogger friend Steven. Gardening is very therapeutic, when you don’t have rodents and creepy crawly things to scare the crap out of you, but it still gets your mind off your problems, you’re doing something productive, you’re getting out of the house, your improving your atmosphere as well as the appearance of your yard, and you get to sit back and watch the fruit of your labor thrive and grow. Doing this and being able to interact with some pretty doggone amazing people online through blogging, Face Book and Twitter, all of these avenues are great coping mechanisms. I would highly recommend a flower or vegetable garden. I’m trying an indoor herbal garden with Rosemary. That is slow going but Steven said it would be so I will be patient. I will get it a buddy so it’s not alone in that pot. And I will do another container planting on my back deck. I can’t do any landscaping because that is where the dogs go and they eat and tear up stuff. But I am going to involve my mind more by planning what to add and where to put it, therefore distracting myself from my burdens.

I will post some updates to my project in the future. I hope all of you have a hobby you enjoy that you can find joy and happiness from. If you don’t have one by now please find one and immerse yourself into it fully and reap the rewards.

Until next time wishing you all a Blessed and Pain free day.

Healthier Gluten Free Carrot Cake


My healthier Gluten Free version of my carrot cake went live on this Migraine support site. They are gathering Migraine and Gluten free recipes to make a Migraine safe cookbook. If you have a recipe to submit you can do so-there is a link at the bottom of the page how to sign in and proceed from there.
(PS-if you don’t suffer from Migraines or have a nut allergy, add 1 cup of chopped walnuts to the cake batter when you mix in the additional ingredients.)

When you suffer from Chronic Migraines it’s hard to find ready to eat items at the store. I have been finding ways to alter traditional recipes to make them healthier and Migraine friendly. I added the gluten-free because my husband has Celiac, and the Gluten free flour mix I use is Red Bob Mills All Purpose Baking Flour Mix. I think I got that title right-I’m trying to type w/o my glasses. Fibro and Migraine Fog double time today. I cannot find my glasses anywhere nor can I remember where I last had them. So I’m typing this 1/2 blind. But instead of using vegetable oil I use unsweetened applesauce. For the sugar sometimes I will use raw sugar. I make sure everything I use does not have a hidden source of Soy or MSG as it’s a trigger, as well as nuts-that is why I omitted them in the original recipe but if that is not your trigger adding walnuts makes it tastier and I will finely chop some and cover the top of the frosting before serving. Then I know I can’t have any or leave a section clear of nuts so I can. Nuts have a high source of natural occurring Tyramine and if you follow the NHF or Diamond Clinic Low Tyramine Diet for migraine prevention nuts is on the list of no-no’s.

But even with the applesauce this cake is moist. I use an oblong cake pan with a clear lid when storing. It must be refrigerated after the 1st day as there are preservatives or chemicals in there to give it a longer shelf life. I hope you enjoy it. My husband and daughter do as does my best friend.

http://www.relieve-migraine-headache.com/carrot-cake-with-cream-cheese-frosting.html

 

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When you get a chance check out this site and get my recipe.

Until next time be happy, healthy and have a pain free day.

People in the ICI Community need to be more supportive and less judgmental of fellow sufferers


dawn breaking

I was dismayed, sad and shocked by recent posts in the Invisible Chronic Illness Community bashing, criticizing and cussing out another in the community that found a way out for “himself” and he posted and shared his experience because he was finally able to break free from the vicious pain cycle and find happiness. I thought in this community and in the midst of all this blogging we were to share our experiences w/o fear of repercussion from another in the same category. I thought we were to be supportive of one another and encourage each other on, and then rejoice if someone has a breakthrough and feels better. I’m shocked at the lack of support I found. If a person was diagnosed with cancer and then was found to be in remission and for the time being considered “cured” that person would be ecstatic and that person’s supporters and other cancer victims would cheer that person on now that they don’t have to fear cancer anymore. Cancer is an Invisible Illness and often misunderstood and stigmatized as well. So when a fellow Migraine sufferer finds a way out of the dark tunnel we bash him? That would be like telling the cancer survivor “you don’t deserve to be better and happy-suffer with the rest of us and be ill!” Now I’m sure if you all sit back and think about it you would agree-we would not wish for a cancer sufferer to regain their cancer, so why would we want a Migraine sufferer to continue to suffer?

I have blogged about my 25 year journey with Migraines and how in May 2010 they progressed to daily intractable Migraines for no apparent reason, and I was not misusing my medications either. My panic attacks also got out of control as well as the Deep Depression I was in over the years long battle with what I then called the Migraine Curse and then everything else piled up on top. I felt like I was drowning in a deep dark abyss of pain and suffering. I had heart surgery Sept 11, 2009 for my long battle with an arrhythmia problem called SVT and by May 2010 I felt my whole world was caving in because one thing after another seemed to go wrong. I was battling Hypoglycemia and non-stop pain. I don’t have to tell all you Migraine sufferers out there how debilitating a Migraine is. You know all too well. But to recount my spells I can have them for 2-3 days at a time, get barely a break for a day and here comes another cycle. I have bad Aura’s prior and during an attack. I’ll  get a partial blind spot in 1 eye and very dizzy and easily confused and lose my balance often. I was already clumsy to begin with but the balance issue just gets worse with a Migraine attack. I get those lovey Icepick Migraines which I renamed Jackhammer Migraines-the stabbing pain behind and in the eyeball was so intense I’d think it would fall out if I bent over, or actually the pressure increased when I did bend over. I think whoever penned the name Icepick never had one in his/her life or they would not have labeled it with such a lame term. That temple on the same side hurts like heck and the skin will be sore to the touch all over my scalp. In fact after I get one of these Migraines I cannot not wash my hair until the pain subsides and even then it’s often too sore to wash-my scalp has always remained tender and sore to the touch and I’d lose more hair than I would have normally pre-2010. If I come into contact with anything artificially scented-someone wearing cologne, scented lotion, hairspray, cleaning supplies, candles, soaps-it will set me off. I am so hypersensitive to smells. Even the smell of Bacon is evil and I cannot tolerate it, but still my husband and daughter love for me to cook bacon, and I suffer afterwards.

I get very nauseous as a result and sometimes if I didn’t hurl into the porcelain throne I’d dry heave, which is worse than the actually vomiting. And I will often get chills or break out in a clammy sweat-it all depends I guess on how my internal thermometer wants to operate on any given day. If I get chills they seem to be deep to the bone and I put on my electric blanket for a couple of hours before I will stop shivering, yet my skin would feel normal if my husband or daughter would touch my forehead. Explain that phenomenon if you can. I cannot tolerate bright light or those artificial fluorescent lights. My husband will come home from work and complain the house is always dark because I live like a vampire-the curtains and shades will be closed and I will not turn a table lamp on unless I absolutely have to and I make sure it’s not too close to me. I have yet to find a dark enough pair of sunglasses to block the sun, that is how much the bright light hurts my eyes and adds to the pain. I cannot watch TV for long or read a good book, oh how I miss reading my books, because of the constant pain, the lack of visual focus and the side effects of the migraines is that I cannot comprehend what I’m reading most of the time because the confusion sets in. I have a ton of books and I love to re-read them but I have a lot of new ones I cannot even crack open and start and it’s like they are just begging me to pick them up, and I so miss my reading. I cannot stay on the computer long because the screen glare (even with the additional anti-glare applied to it) makes my eyes water, burn and adds still to the pain. How I’d love to go to the Movies when a new one comes out-but the noise and the moving screen would be too much. At home I can walk away every 5-10 minutes to recover and come back.

I turned my bedroom into a dark cavern I call my Fortress. Window darkening blinds, cark foam backed curtains, dark walls, dark floor, dark sheets-everything dark. My husband is not too happy it’s so dark but that one room is my Fortress-to slink away, curl up in bed with my ice packs and heating pads, turn on the fan and ride out the storm. I have my Migraine Survivalist Kit on my bedside table. A kit I put together over the past couple of years based on what I found were my essential needs during an attack to make it easier on me, and some various tips from other bloggers. So I only have to get out of bed to go to the bathroom or get more ice packs-everything else is within arms reach. I have an emergency kit in my purse for when I got out with my rescue meds and Migraine essentials. It makes my purse weight a ton and it’s a burden and my husband always loves to rag me about my “suitcase” but hey, I’m prepared.

And the noise. When I’m home alone during the day the TV is off! But when my husband and daughter come home the 1st thing they do is turn it on and ramp up the volume like they are deaf. OUCH! When I can get control of the remote (yep, good luck on that one) I will turn it down. Way down. When I use my iPod for meditation with my soothing meditation and Binaural Beats tones to relax and meditate during the pain I have it turned as low as possible where I can barely hear it. But then when my husband drags me out to his “playhouse” which is the Pole Barn to help him with his car project the noise is horrific and I must wear those noise reduction ear muffs. But the sound still comes through them. In the house when someone comes to the door the dogs bark like crazy and the one will howl like he’s on the hunt (he has Beagle in him) so imagine hearing that when your head is in excruciating pain along with everything else. Or when a major project is going on in the house and the spouse rips out the saws, electric drills, mini-compact air compressor, nail gun-HORENDOUS!! And then he likes to think I’m part male with as much testosterone as he and haul a monstrous humongous frig through the front door that barely fit through the doorway! Just to name one of many, many times I’ve been called upon during my Migraine pain the tasks to help him perform! But I’m not allowed to say “no” because he has no one else that can help him and then he rampages and goes on a tirade. Best to tough it out and suffer more later.

So I know all too well what goes into having Migraine Disease. And I was in such a dark hole of despair, anger and resentment I seriously considered ending it all. Yep, I actually considered suicide. Not once, or twice but a few times. My best friend intervened twice to stop me. The other times I  just chickened out and could not go through with it. But I was in the planning stages the other two times and I was so close to going through with it and I think that is why I told my friend so she could intervene and stop me. I was in such a dark hole of despair and thought I wanted to die to get away from it all, but deep down inside a voice told me NO. So that is why I believe I told my friend, so she could stop me.

That was a turning point for me. I realized that I had become so unhappy, bitter, angry, resentful, sad, lonely, lost, isolated and I blamed everyone including myself-even though I was doing everything right by avoiding all my triggers, trying to eat right, exercise and follow my doctors instructions and to not over-medicate to get caught in the rebound cycle. I was in such despair and mad at the world. I’d hear people make friendly suggestions to me on what they read or saw and I would blow up-I was so angry because I had done so much research all these years to learn what I could and even take info I found to the doctors to try out. I would think they were criticizing me for not doing enough when I was already doing more than my fare share. For someone to give me advice on a book to read because they just saw it online, but I had the book already a few years prior to their suggestion and I’m like “hey, I know this stuff already, so tell me something I haven’t tried cause I’m already doing it all”. I’ve done holistic, natural remedies, diet elimination and raw foods along with vitamins, supplements, massage, biofeedback, chiropractic, cupping, meditation, acupuncture, acupressure-the list goes on and on what I’ve tried to get these blasted things under control. And that’s not counting the traditional medical approaches. I’ve been to Diamond Headache Clinic in Chicago Illinois. All they did was experiment on me with drugs like the other doctors out here were doing. After a year of driving into Chicago with no improvement I quit going there. The drive was too much for me and would trigger a bigger migraine because my schedule would be so disrupted. I tried Botox in Dec 2010 a month or 2 after it was approved for Migraines. The insurance denied it because they were trying to argue it was NOT approved, then I had to have the doctor submit detailed documentation it was medically necessary due to the severity and duration of the migraines and to state even at that time I’ve tried everything else to no avail. The insurance company still found a way to deny it stating it was not covered under “preventive protocol” in their handbook and guidelines. So my husband had to fork out the THEN #1,500.00 out of pocket for the full cost and paid it monthly. I will never hear the end of that from him! I had written pre-certification from the insurance it would be covered, then they don’t and deny it. I fought the insurance and appealed, they still denied after all the documentation was submitted and I even went through the Board of Indiana Insurance appeals and they sided with the insurance company, of course.

So that added to the stresses mounting up on my marriage. I was unemployed and getting temp disability at that time. My husband puts a lot of importance on money and when he had to fork over that amount it just put a bigger strain. He could not understand for one how bad the migraines were even though he saw me in bed with ice packs and in a pitch black room, and all the doctors I’d been seeing and the new medications to try. Even telling him how much pain I was in with all the other effects of the Migraine, and still he doesn’t get it. Then I’m not working which is a big no-no with him. He kept railing on me to get another job so I can contribute. It was a sin to him that I was not bringing in a regular paycheck. When I applied for SSD he was against it saying I’d never get it and basically implying I’m not that sick. Yes I was denied the 1st time because they do that to discourage people. They don’t want to pay out anything unless they have to. So I was told “I told you so” too many times to remember. I appealed my denial and got an attorney that deals with SSD appeals. He would not take payment unless I won. He worked hard on my case and gathered my long extensive list of medical records from all my doctors over the last several years. He said I had a good case. My spouse was still not supportive and still ragging on me to get a job and give up on the appeals. When I had my appeal hearing my best friend drove me because again I was not safe to drive myself. At the hearing my therapist showed up to testify on my behalf, she felt so strongly for me. I did win my appeal and got my back pay and my monthly benefit. All my hubby said was that I was “lucky”. So that is the support I’m dealing with while I’m going through this ordeal-no support from the spouse I have to get it from other sources.

I was hospitalized in August of 2012 for a week. That was my turning point. With intense therapy I realized I could not let my negative feelings rule my life as they were making me more miserable and contributing to the pain, stress and suffering I was enduring. I realized through counseling that how you perceive things in your mind and how you process them effects the body as well. So if I’m all stressed out and negative it adds additional stress to the body and therefore increases the pain because that is all I’m focusing on. I was so intent on focusing on the pain and how miserable I was that I blocked everything else out. No wonder people would not listen to me anymore. Who wants to listen to someone complain all the time and being negative about this and that! I couldn’t blame them when I stepped back and took a good long look at everything. I realized attitude is part of the problem, but not all of it. I started to journal and then blog and interact more with people online who are going through the same thing. I began to realize if I started being more positive about things in my life and learn to accept the fact there is no cure for Migraine Disease and let go of my anger, hate and resentment over it, and just learn to accept it and that all I can do is find ways of managing it better. If I would meditate more during the painful cycles it would distract my mind from the intense pain and I would not feel it as much as I would if I was tuned into that only and all the negativity surrounding it. Yes, Migraine Disease sucks. It’s horrible. It’s terrible. It’s a curse I would not put on another person. The side effects from the countless medications suck. The cost of the medications suck. Going to the doctor all the times sucks. But you know what, if you just learn to go with the flow and accept it you can go with the flow a little easier and be a better person to be around. So I focus on that-being a better person and going with the flow because I cannot change what I cannot change. If that sentence makes sense to you. Why vent and rant and get all tied up in a knot over something you cannot change or cure? At the end of 2012 I was diagnosed with FM and CFS. I was a little deflated at first and almost got into that mind-set again of “oh great, another curse”. But with the support of a network I set up of people who provide positive influence and positive feedback I got back on track again.

Now I’m in NO WAY preaching to people that you need to be more positive to “cure” Migraines. Heck no!!! I know there is no cure for one thing, and what works for me may not work for everyone else! I know that. I get that. I am only blogging about what works for ME and I am in NO WAY telling everyone out there that suffers with ICI MUST follow my thought process and my routine. NO. You can disagree with how I handle migraines or my thought process to make it through a bad cycle all you want to. It will not change the new way I’ve come to handle them. I found that for ME being positive and focusing on what I can do instead of what I can’t do is a big help. And I did use my positive reinforcements this past weekend when I had a horrible 3-day Migraine attack when I had to use my Imitrex Injections. I tapped into my friend “hotline” I call it for a moral boost and it helped. It didn’t take away my pain, but it helped me to battle through it with no anger, bitterness, resentment, malice or being mean. I stayed positive which is a day to day, hour by hour process. I have to be constantly conscious of it and work on it for it to work for me. And I state “work for me”, not a “work for everyone else”. I do not profess to be a doctor and have the answers for everyone but I can go by my own experience and what works for me. Period.

So if someone writes a post about how they found a way that works for them and that they found happiness in the middle the deep dark abyss, I am happy for them. I will not resort to being angry, bitter, resentful nor criticize them or curse them. If someone finds some kind of relief from this horrible pain I say “all the more power to you” and that will be it. And if I see a post that I don’t agree on I just pass it by and I don’t let it phase me because you know what? It’s not worth the extra energy your putting into bashing that person when you could be putting the energy into yourself. Now if I do come across a site that states “guaranteed cure” I will speak up because I know enough that a statement like that is a bunch of bunk! BS if you prefer. So I’m happy someone could find a way to be happy in spite of suffering from a horrible disease like Migraine. Yes, I know it’s a neurological disorder that has genetic factors to it. I had 2 parents that suffered from it years ago when there were no medications for Migraines. My sister suffers from it and has told of many terrible, horrific ER stories. Which in fact I’d rather roll around in my bathroom floor in extreme pain like this last weekend-a pain level 8-9 and deal with it on my own than go to an ER, thank you very much!

I feel sorry for those who are bitter and angry over someone that has found a way out. Someone who can be happy in spite of it all. I don’t envy the contempt this person is facing and which I might face as well after this post. But life goes on and you get out of it what you put into it. And for me I will put in positive attitude and deal with this my own way. I do not force anyone to read my blogs or agree with what I’m saying. But we can agree to disagree in an agreeable fashion. There is no need to curse or be vile over it. That is an attitude I cannot accept. That is nothing short of Cyber-Bullying. Have we stooped that low?

For that I will sign off wishing you all better health, peace, harmony and good will. Try to have as pain free a day as possible and I wish I could make it all go away for everyone, but that is not in my power. Instead sending you all good wishes to be Happy, Healthy and Be Well.

Julie

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.

So