It’s Been Awhile, a song made popular by the rock group Staind


untitled

Happy New Year

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.

Migraine-eye pick pain

 

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.

pulling-hair-out

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.

meditate

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.

Migraine zombie

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

http://youtu.be/oT8awm90zl8

“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

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.

Dealing with Chronic Migraine Disease, Depression and tackling the topic of Suicide


gothic

(7-18-13)

Everyone that experiences Chronic Migraine Disease and other Chronic Pain Diseases, know all too well that along the long and bumpy road of Medical Care and Self-Help, there will be many stumbling blocks and pot-holes that we come across and must find a way to navigate and deal with these issues.  For us seasoned Veterans in this ongoing war we should be use to these setbacks, and we do expect them and for the most part we can get around them pretty well. But once in a while you get thrown for a loop and try to struggle to recover and march on. Or rather, ease on down this long and difficult road.

gothic-anime-awaken-candles-dark-fantasy-girl-gown-mist-416644

For those of us who suffer this disease there are many Comorbid Conditions that go hand-in-hand with Chronic Migraine. It could be Fibromyalgia, Chronic Fatigue Syndrome, Depression, PTSD, IBS, Lupus, Lyme. I could just go on with many other devastating diseases but want to focus on my key issues for now. Chronic Migraine Disease, Fibromyalgia and Depression. I have a few others but these right now are my main areas of concern/problems.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3008936/

As most of you know by now that have followed me, I have suffered Migraines for over 25 years. They started out as Episodic and turned Chronic in 2010. I get them daily and no matter how many identified triggers (of which my list seems to grow in leaps and bounds lately) and alternative therapies I use in conjunction with Medical Care and Medications, there seems to be no relief.

gothic_039

Since 2006 I’ve seen 4 Neurologists, 2 Gynecologists, and 2 GP’s. All this time I have always complained about constant neck pain. I’ve actually had neck pain longer than that. I was in a car accident in the mid 80’s where I suffered whiplash from being rear-ended by a negligent driver. At the time they didn’t think it was serious and through the years I sought Chiropractic care that would temporarily help the problem but it never eliminated it. It would always come back a day or 2 after treatment and even with my doing cervical exercises at home and neck strengthening exercises, to no avail the pain persisted slowly getting worse over the years. For about the past 10 years I would hear crunching in my neck when I would rotate it and I could never fully rotate my neck to the LH side as it would hurt and pull, becoming more painful the further I’d rotate, to where eventually it felt “stuck” as it would not rotate further. My rotation to the RH side was not impeded. I did have a great Chiropractor in Bridgman that did take the time to x-ray my neck and showed it curved the opposite way of what it should. She worked tirelessly on my neck, doing accupressure and trigger point stimulation. It was feeling a little bit better and sadly this Chiropractor moved away and I could no longer get the care I was accustomed to. Good Chiropractors are hard to come by, as is Medical doctors.

Doctors

About 8-10 years ago I suffered an injury to my shoulder. I suffered a small tear in my rotor cuff as a result of falling down my basement stairs on my back all the way down the entire length. I unwittingly put my LH arm up and out to try to stop my descent and that arm ended up being twisted behind me. Stupid me thought I could go to work as the panic wore off and the adrenaline, I was sitting at my desk and the horrible pain kicked in. I had to leave and get an x-ray and then be referred to an Orthopedic Specialist who gave me Cortisone shot and PT to strengthen my shoulder. The tear was too small for surgery but big enough to require injections, which were pretty painful. I’ve had those before in my hip for Bursitis and in both heels for heel spurs and those didn’t hurt. But the one in the shoulder hurt like a son of a hockey puck!! I had prescription Motrin to help w/the pain.

baby face  crying

All during this time I was a guinea pig trying all kinds of medications and alternative and traditional therapies for Migraine Prevention and treatment. No combination seems to have helped so far. And all this time I still complained about neck pain but it was always glossed over and ignored. I was told “oh, it’s a part of the migraines-the migraines are causing it. I let it pass, like a fool. About a month ago after having a really bad experience with my current Headache Specialist who is a Neurologist, I sought out the help of a Pain Management Specialist. I was desperate. The neck pain was getting worse, even though I’m currently in PT and they assigned me a home cervical traction device that helps only temporarily. This doctor finally took my neck pain complaints seriously and ordered an MRI. I got my results last week and I have DDD-Degenerative Disk Disease in my 4th and 5th Vertebrae. I have arthritis settling in as well. I have some spurring and cartilage missing. And also the jack hammer ice pick Migraines I was having that no one else would pay attention to-well he finally did and I got a Bilateral Occipital Nerve Block. I was fighting one of those monsters and getting nauseated while waiting to see him on that day. Within seconds of those injections the occipital pain went away as did the nausea. He is waiting to see the results of this step before he will proceed with zapping those nerves. This coming Monday I will get more nerve blocks in my neck-Trigger Point Injections, to help with the neck pain I pray.

imagesCA95GB5C

But I have suffered another set-back. Even though last week I was finally seeing light at the end of the tunnel, my Depression had to make a rude reappearance, and it made it big time. I thought it was under control with the meditation and other holistic approaches I was taking, but I do believe it started to skid out of control after my lack of care from my recent former Neurologist-he was not available for a major migraine due to medication withdrawal as he didn’t want to be quote “contacted for Migraine emergencies on a Friday” unquote from his answering service. And I refuse to go to the ER with a migraine and be treated like a drug seeking addict. So I had a major meltdown in front of my husband and daughter. Up until that point they never took the pain I was having serious until that night. I was at the end of my rope with all the chronic, improperly treated Occipital Migraines and neck pain. Even though this new doctor is helping this Depression is not letting up and seems to have gotten worse. With the Fibro and CFS the Insomnia has been really bad again. To the point I’m getting more forgetful, more clumsy, more touchy and more in the dumps. I can’t shake it off. When chronic Insomnia builds up it really damages the psyche over time.

http://www.webmd.com/depression/guide/treatment-resistant-depression-what-is-treatment-resistant-depression

goth angel

When you are down and in your weakest point emotionally and physically, it’s easy for the dark thoughts to take over and crowd your mind. If the Depression is left untreated it can become really dangerous, especially if one has a history of entertaining thoughts of ending it all because the fight is too hard to maintain over a long period of time, and you just get battle weary. Battle fatigue sets in along with the chronic fatigue and pair that with poor medical care and poor pain management, well that is like throwing gas on a raging inferno if left untreated and unrecognized. After dealing with this for so long you think I would know better by now, but the subconscious mind is very powerful and oftentimes hard to break free from. And I don’t care how religious you are, until you suffer the unrelenting pain of horrible daily Migraines, if you haven’t been there you have no idea and have no right to judge that a person is not “Christian” enough to battle the demons of Depression. Support groups are essential for those in Chronic Pain. But recognizing and validating the pain someone is going through is sometimes better medicine than you could ever imagine.

http://blog.advancedmigraine.com/blog/bid/297694/Fighting-the-Blues-Chronic-Migraines-and-Depression

depression

The Social Stigma for Chronic Migraine Disease, Fibromyalgia, Chronic Fatigue Syndrome and importantly Depression has got to be put to an end! It’s the stigma and public perception, as well as the poorly educated Medical Profession, that makes people become more desperate and sink deeper into despair.

http://www.webmd.com/migraines-headaches/news/20130627/migraine-sufferers-face-significant-stigma-study-finds

http://youtu.be/TlAZKbMz3Lk

And if left unchecked and untreated it is an all-consuming anguish that some people think the only escape from the pain is to end it all. They cannot focus on other people or their “religion” because the pain is too severe and all-consuming. And if you have bad doctors who are not there when you need them the most, and no support from family and friends, you are more of an outcast than someone that has Leprosy. Getting people to understand that these “Invisible Illnesses” are real, legitimate and not just “in your head” is so vitally important. I know I can talk until I’m blue in the face to people, especially family and friends, but to no avail I get a blank stare and then get “unsolicited” advice on what I should try when in all due respect I’ve more than likely tried it more than once already in the past 25 years!! So please don’t tell me something I already know. I’ve been to a so-called “Headache Clinic” in the past and they do the same that all the other doctors do-turn you into a guinea pig and just experiment with different drugs. I was told to go to Mayo Clinic, but they don’t have the answers either. Why do you think they were partners in the launch of the current campaign :36 Million Migraine Campaign. Check out their YouTube video at this link:

http://youtu.be/23ZG0cc7TXg

And check out the official website link here:

http://www.americanmigrainefoundation.org/support-the-foundation/36-million-migraine-campaign/

I was so happy when I saw this on the National News when it was first launched with Cindy McCain, also a long-time Chronic Migraine Sufferer. This will hopefully bring more awareness, education and much needed funding to further develop Migraine Treatments. But also so that we can be treated with more respect and not less than 2nd class citizens.

http://www.nimh.nih.gov/health/publications/depression-and-chronic-pain/index.shtml

If you know of anyone suffering Chronic Migraine Disease and think they are suffering un-Diagnosed Depression, or even if it is diagnosed, PLEASE do not tell them to “snap out of it” or “it’s all in your head”. You are just adding to the burden and the ostracism they are experiencing and will cast them further into that dark abysses of despair and desperation. It could very well add fuel to tragic thoughts they are thinking. When someone is Depressed and contemplating suicide it’s not a chicken way out, and they are not thinking what it will do to those that are left behind. They are too consumed with pain, anguish, untreated suffering and unrelenting Depression. They are not thinking like a normal healthy person because they are NOT healthy and may not be for quite some time. Not until they find a cure or better medication for this Neurological Disease. Please have empathy for us who suffer sometimes in silence. And offer a helping hand, not medical advice. But best of all be a friend in time of need and do not pass judgment. In reality all too sadly those who are in deep despair internalize their deepest thoughts and keep them hidden so as not to be labeled “Psycho” or “Psychotic”” or “crazy”. It can have tragic consequences. Just recently the Chronic Migraine Community lost yet another beautiful soul to suicide. We have to work to eliminate the stigma of Chronic Migraine Disease, Chronic Pain Sufferers-all those who have an Invisible Illness are ostracized and stigmatized and scared to speak up. Some are afraid of being locked up and institutionalized. Please don’t add to this stigma anymore and please help us fight to bring theses diseases to light and get rid of Stigmas.

http://www.save.org/index.cfm?fuseaction=home.viewpage&page_id=705c8cb8-9321-f1bd-867e811b1b404c94

http://www.metanoia.org/suicide/

http://www.metanoia.org/suicide/samaritans.htm

http://www.suicidehotlines.com/

Need help? In the U.S., call 1-800-273-8255 National Suicide Prevention Lifeline

#MHAMBC Migraine & Headache Awareness Month #16:Riverdance: Have you found a way to work exercise or movement into your life with Migraine/Headache Disorder? What is it?


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.

 

In the past I use to exercise vigorously and often. But then Chronic Migraine set in and became a daily nemesis, therefore cutting off my desire or ability to continue to workout the way I did. Hard physical exertion would make the Migraines worse. I did try Pilates for a while and it got to where I’d get all over body pain. Only to find out I had received late last year a diagnosis of FM. So exercise was a challenge although last year I got outside often and tended to my new flower garden.

My PCP prescribed PT for me this past month to try to help me work with instead of against the FM pain. I do need to lose weight as well, which is a side effect from all the toxic medication I’ve been on, especially the past few years. I have a chronic shoulder injury that looks like it’s turning into arthritis and a lot of problems with my neck and traction applied at PT by a therapist helps for a day and goes back to where it once was. I work on the NuStep, Elliptical, Treadmill for aerobics. Then the leg press, bench step, lat pull downs, tricep extensions, lateral extensions-thus far.

But the goal is to strengthen my muscles and increase my endurance and work around the pain instead of against it. If my Migraine is too bad one day I will have to skip and work out the next day and just add a few extra sets. But I’ve stopped punishing myself for missing and have made it a habit to be healthier. So my goal is to continue with PT and then stay there as a customer as they also offer a fitness center membership so I will be held accountable by having paid to go there so I must take advantage of it.

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.

Short answers in questions I get on this WordPress Layout (this is a very short post)


5-14-13

I get a lot of questions on what theme and layout I’m using. I am using the free version and this theme is Dusk to Dawn. When you go in to set it up you can select layout options to where you can have the menu on the LH or RH side and the background color. Then you select the widgets that are available for the free version and you drag them to the RH or LH menu position you chose. You can also go into settings and customize the background picture and status picture from what you have saved in your pictures folder or downloaded from the web. This makes the site more custom and unique. You pick out your blog name 1st before it lets you go into any themes to set up, and set up your account and username along with password. When your done for the day save all your work and be sure you log out-if you stay logged in even with the browser closed it could open you up as a target for hacking if anyone can get past your firewall and virus settings.

For getting comments to show you have to go into the actual settings of your blog each day and sort through what was caught by spam and see if you want to approve them. Once you approve them you can go to that page and reply. Also you will get an email to notify you of any new comments to moderate that were not caught by Spam. I have over 3,000 messages caught by Spam and I’m debating if I want to continue to go through them all and sort them as it’s very daunting task.

You do not need any programming experience to do this free version of WordPress. It’s pretty easy to set up and customize as they guide you through it. I’ve not had much experience on this as I’ve only been doing it since late fall 2012 and I have no prior writing experience other than way, way back in high school. I would often get marked down on book reports because I made them too long-I just loved reading books and got a lot of information from them and didn’t want to leave out anything I thought was important. So I reluctantly learned to size them down to get my better grades. When I worked on the then small town ambulance service I was always stuck doing the paperwork to write up all the information that happened on each run. Everyone liked my attention to detail and I admit I got carried away and made them too long. But in life and death situations and not knowing if one call could turn into a lawsuit down the road (not saying we were bad, just that people around that time were getting sue happy) so more detail was better than less detail.

That is really all I have to share on information on the layout, the template, the customization, comments and blogging/writing experience.

Until next time Blessings for a pain free day. Julie

 

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.

Front Garden before mulchFront Garden in process024

(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.

Front GardenProgress in front garden036

(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….

Memorial Garden 019037

(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.

garden visitor

(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.

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