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


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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


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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

My tricks and tips for dealing with unexpected changes in day to day life due to Migraines


purple stream

First and foremost I make sure I stay hydrated each and every day by drinking a lot of water during and cut back on caffeine. Dehydration is a #1 cause of most migraines and if your dehydrated I found out personally it can take longer for your medication to kick in and take effect and compounding the situation. Other than that I have found the following my best way of trying to cope in a day to day basis that is so unpredictable:

I have a few tools that I use to keep ahead of the weather, as some of my migraines are weather related due to changes in the barometric pressure. On my iPod I have three go-to tools: Migraine Mate which will let me know if my risks for that day are elevated based on weather patterns due to my GPS location-I can add my pain rating and it will keep a Migraine Log that tracks your Pain vs. Temperature; Barometer which will give me the constantly changing pressure, temp and wind speed based also on my GPS location; and ecoHeadache paid version so I can customize with all my medications and alternative therapies-this is my migraine log and I can print a report to take to my doctor based on my documentations and settings. I downloaded those apps from Apple online store and they are very helpful in helping me keep track of migraines and triggers. On my cell phone I have a paid app through Google Play Store called My Pill Reminder: I have all my meds listed with the doses and times and it will sound an alarm that will not stop until I shut it off so that I do not forget to take my preventive meds on time. Missing doses or forgetting the times and not being on schedule is another big trigger for a Migraine to take root. You must take your meds on time and the same time every day and if you take the same med twice you enter it in twice and have the times set. The night before I have a pill box where I put my doses for the next day so I can have them ready when my timer goes off, that way there is no confusion and no forgotten pills.

With those techno tools I can try to keep ahead of any of those migraines that are weather created by taking my abortive at the 1st sign of an attack to hopefully prevent a devastating migraine. Along with watching the weather updates on TV there isn’t much more I think I can do in that department.

And then I make sure that my Migraine Survivalist Kit on by beside nightstand is replenished often-after each and every use. I will do an inventory and pre-fill any anticipated RX’s in advance regardless if I need them at that moment or not. It’s best to have them on hand so that I do not run the risk of running out in the middle of an attack, which would be a nightmare and unimaginable.  I also ordered a couple of those old fashioned ice caps, the kind my mother use to have years and years ago. The bag you fill with ice cubes and it has a screw on cap and the outside of the bag is cloth covered so you don’t have to use a hand towel with it. I found these last longer than the gel filled and cost around $6.00 to $10.00 depending on where you buy them. I got mine on Amazon for about $7.00 each. Any freezer gel packs I have I will often check to make sure they have not developed a leak. After repeated use of thawing and being refrozen the plastic weakens over time and I have had some of the gel ooze out and get on my dark navy sheets. Plus with a dog around I’m sure it’s toxic and I won’t have to worry about my dog getting into it 1st If I don’t catch it in time.

If I try to make any plans with friend or family I always leave an opening in advance. I will tell them I’d love to have them over or go with them, but I forewarn them that if I get a Migraine that will prevent me from participating to not get upset and be prepared if I have to call or tell them I cannot make it the day of so that they are not caught unprepared. I know no one likes to be cancelled on last minute, but my family and remaining friends have known me long enough and know what I go through and they have learned to expect a possible last minute no-show. Family might get a little upset but friends are more understanding. So on that point I try to maintain and keep open lines of communication with everyone I relate to on a day to day basis and keep them informed of medication and therapy changes as that can play a role as well. Communication is key.

When I actually do get to make it out of the house, I have learned to carry a couple of pairs of ear plugs in case I end up in an environment that is too loud since I’m really sensitive to loud noise. I have also learned to carry with me at all times, regardless of the weather, my sunglasses because I can even use them indoors under that terrible florescent lighting. I might get some odd looks if I use them but it’s to my advantage and not those passer-bys. I always make sure I have back-up medications with me as well and even have a pair of my Sumatriptan injections w/alcohol swabs just in case. In my cosmetic bag that’s been changed to my medication bag I also carry a printout of my current medications, OTC supplements, current doctor information and contact information-just in case an accident should happen it’s in print so that there is no lack of communication or confusion when the occasion occurs. In an emergency who can remember the names of the meds, doses and all their OTC items-or those of their doctors contact info or who to contact in case of an emergency? I sure couldn’t. I also carry a mini tablet and a couple of pens to document when I take meds away from home along w/a few short notes so that I don’t lose track of that information. And I will have my mints as well that will soothe my stomach and a pair of Sea Bands for the nausea if it should hit me all of a sudden. And I do a last minute check before I go anywhere that I have my driver’s license and insurance cards and a method of payment in case I end up in the ER to pay the co-pay, so my checkbook or debit card is always with me as well. I’ll have some portable wet wipes with me as well, just in case……….

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(My cosmetic case that I have made my Travel Migraine Emergency Rescue Kit)

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(As you can see it’s stuffed to over capacity w/anything I can think I’d need away from home to abort a Migraine)

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(These are the essential items as I had listed them out for display-a duplicate set of my backup abortive meds and the rest-medical info printout, etc)

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(My billfold clutch that contains checkbook, coin and paper money along w/ID’s, insurance card, medic alert card and debit card & store discount cards)

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(Once this items are loaded into what I once thought was a good sized purse it’s bursting and any extra room for anything is pretty sparse)

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(I add my sunglasses and by the time I’d put my eyeglass case and cell phone in there I can barely zip it up. I guess it’s time for purse shopping, UGH)

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(The front zipper pocket barely has room for lip balm and house keys. I hate to purse shop because I’m so picky about what I get)

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(this is my new purse, or should I say “suitcase” to carry my On the Road Migraine Kit. I’m already catching jibes about it-hey Julie, couldn’t you have picked out something a little bigger-sarcasm abounds. I’m not too happy w/it myself but I need the size and it’s leather and it was under $30.00. Sold)

I make sure my cell phone is always on a full charge and I have my contacts phone number information updated. I have my most important ones set on speed dial and I love the feature where I can put my important contacts as a direct dial app on my home screen, so then I just click on their picture and it will automatically dial them up. That would be a great life saver when you can’t think of a name off hand-you turn on your phone and your screen lights up, you see a picture of a face and you select that picture and it direct dials. Because oftentimes when a migraine strikes confusion sets in and you cannot think too clearly, so this is a good tool I like to use even at home. Technology is so amazing this day and age we need to take advantage of every tool as well as the tricks learned on these amazing devices to our advantage. And I make sure in my phone settings I have my GPS turned on so that it’s track able.

If I leave the house I will always let someone, spouse, daughter, and friend-know where I’m going and what route if possible. And I’m learning that I need to take the GPS with me so that in case if I get confused if a migraine hits and I cannot find an alternate way home, that I will not get lost and if I have to call someone for help the GPS will show where I’m at. In the past when I’d get lost on my way home I’d call and I’d be embarrassed to say I didn’t know where I was for sure. That is just not a safe place to be-it’s terrifying and could be life threatening if something else should happen like if you get too dizzy to drive or your vision gets too obstructed w/an aura. When you’re out on your own a GPS device and a cell phone are a must have. And if you think you may be gone longer that a couple of hours take along a cell phone battery charger that plugs into the cigarette lighter. And make sure someone checks out in advance the cigarette lighter actually works so that you know you can use it if your battery runs down. You don’t want to be stuck out away from home with a dead battery. And I make sure I have a bottle of water to stay hydrated and of course in case I need to take pills.  And I try to concentrate on staying focused, calm and not to panic.

If I get a migraine at home and need the quiet and silence I will put a sign on my front door that will state a Migraine is in process and please do not disturb. Many people have been very courteous and have not knocked or rung that God awful doorbell when I put that sign out. So that is a good way to deter unexpected would-be guests or solicitors when you’re in a not so hostess friendly mode. And if I’m home I retreat to my bedroom that I have made a dark and quite fortress, I will shut off the ringer to the phone, turn on the fan for white noise and use my iPod with meditation music and have turned down low, and I now have an aromatherapy humidifier on my side of the headboard w/soothing essential oils to calm and soothe me.

My Comforting Blend Recipe:

5 drops Lavender Essential Oil
5 drops Ylang Ylang Essential Oil
4 drops Clary Sage Essential Oil
4 drops Tangerine Essential Oil
2 drops Vetiver Essential Oil
2 drops Frankincense Essential Oil
1 drop Marjoram Essential Oil
1 drop Sandalwood Essential Oil
1 drop Myrrh Essential Oil

I combine these oils in a European dropper bottle and keep in a dark, dry cool place-my bedside stand drawer. I will add 8-10 drops in my diffuser because it can take that amount. Some diffusers take less and some might take more. But I found that the pure unadulterated essential oils do not irritate nor do they trigger a migraine. Only the commercialized, manufactured scented items will trigger me. This will not abort my migraine but it will soothe, comfort and relax me so that I can better endure and ride it out.

All the essential oils I use are pure therapeutic oils. They are not pre-blended nor are they perfumed oils-those would trigger a migraine, so stay away from perfumed oils.

(I will carry a small vial of pure essential Peppermint oil as well to sniff if needed when a migraine starts to flare up)

And I avoid my triggers: food, beverage and atmosphere like the plague. I eat freshly prepared food and stick to the NHF Low Tyramine diet guidelines where 1 restriction is to not eat anything that is more than 6-8 hours old-so no leftovers. Protein the longer it sits the more Tyramine builds up and is a major migraine trigger. And of course I avoid my other triggers: MSG, Nitrates, Nitrites, Diary, red wine, aged cheese…..

I hope some of these tricks and tips will help out someone. If you have a few of your own to share or add to this list please let me know. I’m always on the lookout for new tools and tricks to use for my own intervention.

Check out this months Migraine Carnival Blog postings listed as of 5-13-13 for other bloggers tips and tricks and coping with Chronic Migraine Disease:

Coping with Change May 2013

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.

May 2013 Headache Disorders & Migraine Blog Carnival: Theme-Practical tips & tricks for coping with the changes brought about in our lives by Migraine & Headache Disorders. Posted 4-8-13

Unexpected Lessons Learned and Old Ones Renewed


long road into the sunset
Who would think that suffering with a chronic disabling Migraine Disease, and other invisible Illnesses, that during the course of time you could find any good to come out of all the pain and suffering. Let alone to find any blessings in any of the chaos-with all the conflicting diagnosis, tests, trips to doctors offices, being yanked from one specialist to another, and trying all different concoctions of medications as well as a slew of alternative and holistic approaches, to try to find some sort of relief of any sort! Some people would not blame you if you just walled yourself up, shut yourself off from the outside world and wallowed in  your own pity, crying day after day “why me”. Some people actually do that for a while until they wise up and too fortunately others still stay stuck in that self-pity mode. If you stay in pity mode for too long you end up living a life on your own. My Blessings are my Lessons learned because as you go through life and your given a task or a lesson, you work on it, trouble shoot it and overcome it,  and then apply it positively to your day-to-day life I consider that a Blessing-to take a negative and make it a positive to live by, follow and hopefully inspire others.

Human nature is self-preservation. It’s in our genetic makeup and being human and all we cannot overlook that flaw we all have built into us. We can however change our perspective and relearn a new thought process and coping mechanisms if and when we get out of the initial grief process given a diagnosis of a disease that has no cure. Of course the process is far, far worse for those with a terminal illness. But pain is pain no matter which way you slice it and to live in it and with it day in and day out not only wears out the body but the mind and soul as well. NOT to minimize those with terminal illness, I would never do that. BUT you do have a way out by learning to put others first and not focusing on your own pain so much but by putting empathies’ on others above yourself. In the process this makes your suffering seem less catastrophic and gives you a better mind-set makes for a more peaceful transition into a balancing act of normalcy, or what we can come close to in the Invisible Illness Community. You take the hand you’re dealt with and make the best of it. Oh sure you can moan and groan and have a little pity party and bombard friends and family with daily or weekly emails of how sick you are and how hard it is to manage. And it could be very well true as we all know. But after a while those people that you moan to and complain to after a while will turn a deaf ear to it all and become desensitized by your plight and minimizing your illness and you as well. And that as a result will diminish the plight of all chronic pain sufferers everywhere in the long run.

I have seen over the years waiting in the doctors or specialists waiting rooms people worse off than I am on an outward appearance and I feel empathy towards them. I’d go out of my way to open doors for them when entering or exiting the building,  or letting them get ahead of me in line-no matter where I am: at the store, the pharmacy or at the check in desk at the clinics. And then I would get to wondering about the people that didn’t show any outward sign of distress (as it can be easy to hide sometimes in public, based on the severity of pain that is) and I would silently wonder what demon (s) they are dealing with and I’d feel empathy for them. Not many “well” people wait for an hour in the neurologist waiting room for the heck of it if they feel well, let’s put it that way. And I’d marvel at how composed some people were that they’d keep their pain hidden from the public. Other times some people would persistently go up to the desk and demand to be seen sooner than the others that came in ahead of them. I would not know their situation fully so I would not sit and judge unless on a few occasions they carried on because they had an audience. But again you cannot judge that person’s circumstances like they cannot judge yours. I’m sure if I allowed myself to be taken to the hospital with a full-on horrible migraine I would not be a pretty picture, so one could only imagine.

I do admit at first I was in the denial, weepy, self-centered “why me” phase for a while and I moaned and groaned and went on about the injustice of it all. Then you look and see newborn babies born premature or with devastating birth defects then you start to feel foolish. Then you see people have strokes, get cancer and die of Diabetes and you feel more foolish. Pain is pain and sickness is sickness. It does not discriminate-we are all destined to be grasped by its devastating effects. I have learned this humbling experience along the way and slowly I learned to put others first and to pray for others first. Because in the end we are all in the same boat one way or another-suffering and trying to cope. And when I’m struck down with another debilitating migraine and as I do my meditation in my dark room with my  Migraine toolkit and fight it out,  I take a moment to remind myself that there are others out there less fortunate that I am and who have it worse.

I have learned that there are people who cannot afford the medical care and medications I receive and that is unjust.  I feel blessed that I do get good care and pray that others can have access to even better health care. I will always try to think the best and wish for the best of others as I fight through my attacks. I learned I am blessed to be provided for as I look at people in line at the grocery store, and especially the senior citizens. I see them digging in their purse or billfold to pay for their groceries and I wonder what hard time they are having and say a silent prayer for them. Or if I see a handicapped person I give them the immediate right of way or help them reach for something on the shelves if they appear to have trouble. Any kind of helping hand is better than none at all. I often wonder if they sacrifice food for meds or visa versa and what a terrible predicament that is. Then I’m humbled and shame myself not to complain. Then I will be at the deli counter and someone has waited longer that me, so I let them go ahead of me. Also if someone is in front of me in the checkout line and lacking some change for their purchase I will offer it if I have it not judging, but with empathy that they are having a hard time making ends meet-do they have to spend their life savings on food and/or medicines I often wonder. I do not judge but I have empathy and I realize that after all these years that yes, I suffer horrible pain, but I will recover and continue on. I have shelter, food, medicine, family and good medical care so for that I have learned my pity party is No More. And I interact with people online that are more ill or as ill as myself, and I put the focus on them-not me. I will share my experiences if it feels right and maybe that is why I have this Chronic Invisible Illness-to help others with my experience and insight.

We don’t know the master plan of why this and that happens, and we are not supposed to know why, but we can do our best to conquer, survive and thrive. I have also come to realize that yes indeed there are others that have it worse than me and how dare I whine and complain about what may be trivial as compared to someone who may be terminally ill or have a more chronic condition that I do. It is not a contest of who is the sickest and it’s appalling when you see that play out in life, the “I’m sicker than you are because of this or that” or make a competition out of it. Come on, grow up people and see the bigger picture. It would do no good in the end and would only end up adding to my suffering and make me or someone else lonely, bitter, and resentful ole hag. And who the heck wants to be around that? NOT me! Attitude is half the battle and if you win that you’re on the home stretch. Life is what you make of it, as it’s been often quoted but so very, very true. And your attitude impacts your health-mind over matter. It’s been proven and from what I’ve tried to practice I’ve found it to be true. I’m human and I slip up from time to time, but then I will catch myself and put it all back on track. It’s a constant learning experience. I’ve learned doing a daily gratitude journal is a great way to reinforce this mindset, and to practice writing daily what I have to be grateful for. It’s all about keeping things in perspective. And also by doing daily Bible Devotions as well and incorporating them into my journaling and remembering while meditating through the pain or even on tolerable days-it doesn’t matter what the circumstance remember what I have to be grateful for and how fortunate God gave me the gift of another day so I make the best of it as best as I can.

I have learned to be a better patient as well. To research online before my appointments and take any documentation with  me and especially make sure my information sheet I make up and take with me is better organized and updated with current medications, supplements and symptoms I’m having trouble with. I learned a valuable lesson from a pier online how to make a better patient form and my last visit I took my draft and the doctor was very appreciative. They see so many patients in a day that they don’t have the  time to go through the electronic files and remember everything about each patient. I keep mine to two pages max as not to overload him/her and I update it as soon as my medications are updated and/or changed so that I don’t have to do it last-minute before my next appointment. I have come to be more organized in some areas but a work in progress in other areas.

**These are by far the best lessons I have learned-to be unselfish, compassionate, , patient, calm, focused, forgiving, dedicated, spiritual, humble and self-sacrificing. I have finally learned to stop fretting and worrying about tomorrow or the future-it’s out of my hands to an extent as God has the master plan. So I take each day as a present and consider tomorrow a gift.  I have learned to love unconditionally even if it is  not returned, to let go of past grudges-let it go and don’t fester on it-it only hurts you not the person your grudging. And to live each day like it’s my last. To not hold material possessions as more important than family, friends and life-you can’t take it with you and it’s only temporary while we walk this earth. We didn’t grow up with much and mom and dad always told us you came into this world without a penny and you will leave without it, so don’t put value on meaningless material things-God first, family second and friends. It helps too that my parents raised me this way-to do unto others as you’d have them do unto you. We were constantly told that as we grew up. It was actually hammered into us as well as to respect your elders and to always say please and thank you, and to always be humble. And it’s not worth it to fight-who cares who’s right or wrong. Usually the person you’re arguing with will not change their outlook or perspectives, so why waste your breath and time. But to stand up for friends and family and lend a helping hand to others  in need when possible.  It hammers home the practice of turning the other cheek, which for people as a rule we are prideful and do not want to turn the other cheek and let any insult or wrong-doing pass. No, we want an eye for an eye and a tooth for a tooth.  We want punishment-we want revenge. It eats us alive over time because we let it, and that negativity also feeds to chronic pain. We are not in general forgiving people. I have worked hard to overcome that thought process and have forgiven a past horrendous act against me physically and emotionally. My attacker did not ask for forgiveness, but I gave it after years of repressing it then seeking help and dealing with it to get my PTSD in control.  I do feel freer to have done this and talking about it helps-that in and of itself if anyone takes away anything from this post it should be that-FORGIVE any past grievances, work on it with a counselor if needed like I did, talk to friends and pray, pray, pray on it. With work you can let it go and that too improves your outlook on dealing with chronic pain. There is truth in mind over matter. Practice and believe it because it’s true. Again, it will not cure you but makes the whole situation more tolerable. It’s ok to have bad days and slip, but recognize it, correct it, and get back in line.

I have also learned over time and research there is NO cure for this disease and have come to grips with it. I have made peace with it and even when I have sometimes well-meaning family and friends say I need to work harder and go places to be “cured”, it’s fruitless to try to re-educate them that this is cureless, I let it now go over my  head and pass by me like the breeze and not upset me anymore. I have learned, the hard way, that they will never get it even seeing reports in print and online so why fret over it and stress over it. I’m at peace with it and let it pass me on by. That is a Blessing that I can come to terms with the disease and almost make friends with it by letting it be my teacher.

Well, mom and dad, it finally stuck and yes I did learn something after all. As they are watching down from heaven I can only hope I’ve done justice to their lessons taught. You cannot take Southern manners out of a Southerner, even when I’ve been transplanted to a Northern location 🙂

Sometimes Chronic Illness can be a blessing in disguise with all the lessons you learn along the way. Especially for me as these are my experiences and what I have learned and can attest to. You can learn how to be a better person and leave a positive footprint in the lives of others. I think that being so ill and struggling with chronic and most times excruciating pain daily, and focusing on being positive, peaceful and calm-meditating and praying through it with my calming mediation music, my darkened sanctuary, essential oils and my best puppy friend. That along with my parents teaching has made me a better person. At least I like to think so.

 

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

Migraine Carnival April 2013 Theme: Unexpected Blessings that have come out of our experiences living with Migraine Disease and other Headache Disorders.
(Submission 3-27-13)

Unexpected blessings that have come out of our experiences living with Migraine Disease and other Headache Disorders.