It has been years.

 It has been 4 years since the last time I posted on this blog. I am sorry to everyone who kept waiting for new content, and it never came. It is easy to say "life got in the way", or "I was too busy". But those are just excuses. I was dealing with a lot in my life at that time, a divorce, a lost job, a husband who wasn't working either; and on top of it all I had so many therapies for my migraines and other multiple conditions the doctors have recently diagnosed me with - that I was depressed and exhausted. I actually stopped writing for these past 4 years. 

Recently, things in our life have turned around from the dark place I was 4 years ago. My husband and I got married in July 2018, we bought our first house April 2020, and with the freedom and space to make our own, I have rediscovered my joy in writing. 

I will not be updating this blog any longer. I hope it helped many people and I hope it continues to do so. I have created a different blog for my writing and book reviews now. Here is where to find the Short Stories and Reviews.

I do have a final post to place before moving on in my upcoming journey. It is about how I am finding a way to overcome my pain through literature.

Overcoming

Living with a disability is a very difficult thing to do. I would not recommend it to anyone. However, some people are unfortunate enough in the genetic lottery to be forced to live this way. My husband and I are included in this select group (more about that later).

I find that one of the best ways to get away from my pain, is to escape into someone else’s imagination. It also helps to get away from the stresses of the life we are currently living. 

There are many wonderful new and established authors on Twitter and Tumblr, and they are always looking for new readers to experience their work. I am beta reading for a few friends, and doing some book reviews as well. (You can find my reviews here and here. I promise, it’s all me.😁) 

According to everyone I have read for, I am a very fast reader, and I can find more errors than a paid editor. So I figured, why not get paid? I looked at what most editors charge, and the prices showing, according to a blog on Reedsy, are $0.01 or $0.02 per word, that may not sound like a lot, but if you do the math,  at two cents a word it comes out to $420 for a 21,000 word manuscript (my MG fantasy is the basis for my word count). 

Another option, from Freelance Writing, is to charge by hours billed, that is anywhere from $10 - $85 per hour. I can edit a book in a week. I finished a 60k word count edit in 4 days. Most of the time was spent waiting for the next set of chapters. 

I believe that Proofreading, and copy editing are my strengths. I easily find the misspells, and sentences that don’t flow (they just jump off the page for me). 

About the pain, I live with chronic intractable migraines, and the hypermobile version of EDS (Ehlers–Danlos syndromes). Chronic Intractable Migraines, according to the National Headache foundation, are “severe migraines that have continued for greater than 72 hours and have been refractory, [or unmanageable,] when it comes to usual therapies for migraine.” Mine are triggered by many different situations and substances. Some I can control, like diet and some stress; while others are beyond me, like thunderstorms or fluorescent lights, and stress...😉. My migraines are powerful and there aren't many medications out there that can help with the pain. I live at a constant pain level of 5-7 if not higher. Aimovig is helping and so is Medical Marijuana (life saver).

H-EDS or Hypermobility-Ehlers-Danlos Syndrome, according to Web MD, “is a [genetic] disease that weakens the connective tissues of your body.” It can affect the heart, skin, and joints. Mine is centered in my joints. The connective tissue, ligaments and tendons, holding my body together are loose, and don’t always know when to stop. It makes for some pretty interesting party tricks, but at this time in my life (I’m almost 40), I am paying for showing off my ‘double jointed weirdness’ in my youth. Every ball and socket joint, both hips and shoulders, have been dislocated at least once, and they partially dislocate (or sublox) often. It’s hard to walk when your hips aren’t seated right in your pelvis. My knees, elbows, and ankles bend way beyond what is considered healthy or normal ( I can walk on my ankles). There aren’t many medicines out there for EDS that I know of, but the Medical Marijuana helps there too. 

Because of my pain, I am a voracious reader. I know fiction. That is my preferred genre. I will read almost any sub-genre too, sci-fi, thriller, mystery, romance, fairytale, fantasy, and any others I didn’t mention.

I will be reducing my beta reads, (I am a bit to much of an editor to feel comfortable with the beta reader limitations) but @ShellyH43722284 will still be reading, if it is a horror novel or something that will give her nightmares, I will be reading it, but otherwise I would like to concentrate on developing my editing and story writing abilities. 

If I am already beta reading for you, don’t worry. I will continue. Instead of pointing out how to fix any errors I find, I will just be notifying you if I find any. 

Please sign up for my newsletter for up to date information and sneak peeks here. Feel free to message me on Twitter @DeLong252L, or contact me via the form on my other blog if you have any questions. I would be happy to discuss prices and times with you. 

Happy reading!

~Lynn~

~4💜 Keep your eyes to the sky~

Migraine: an explanation for people who don't get them.

Migraine: an explanation for people who don't get them.

Have you ever had to explain your migraines to someone who doesn't understand? It could be a boss, a doctor, a family member, or a friend. I have had to explain, and in the past I have sounded like a bumbling idiot. Hopefully this explanation will make more sense.

I deal with chronic daily migraines, for me that means that the nausea and pain come in waves, and never really go away. I have been chronic for 18 months. My head continually pounds, or is in a vice grip while pounding. I know when a storm is coming, because the pain in my head increases drastically when a storm draws near. My eyes tear up, and my vision gets blurry. Sometimes I feel like I am on a boat because the room is rocking under my feet. The longer my migraines continue, the more difficult it becomes to concentrate, or sometimes accomplish the smallest tasks. This is what I deal with day to day.

It is nothing compared to when my trigger level overwhelms my pain threshold, and I am hit with the excruciating immobilizing pain of a high level migraines.

Here is the explanation of that: I have to skim my feet on the ground, just to make sure my head stays on my shoulders, every sight, sound, odor, or regular step I take jars my head to the point I feel it will fall off. I cannot tolerate even the slightest sound, the hum of electricity, or the whisper of my own breath leaving my body. The barest flicker of light, from outside or from my phone, catapults me from intolerable pain to intolerable agonizing pain. Every word whispered, either by myself or people around me, feels like having a broken bone, repeatedly re-broken.

I use a few different metaphors to explain the kind of pain I experience in my head.
If it is a stabbing pain in my temples: the invisible man with the ice pick is stabbing me there.
If my whole head is throbbing and won't quit: the miniature miners in my head are using their tools on my brain.
If my head feels like it's in a vice grip: the rubber band around my head is going to pop my skull like a watermelon.
All these metaphors explain my pain in a picture that is easy for others to imagine.

I know that each one of us is different, and we all experience our pain in different ways. If any of my explanations help you, feel free to use them, or tweak them as necessary. If you have an explanation that works for you, and you would like to share, please do so in the comments below.

"I hope when people in pain see how I am dealing with chronic pain they aren't wishing they could be so lucky to cope as well. My hope is that they realize God is my strength - - and He is available to them as well. I am weak. But He is strong. He will be strong for all who ask Him. I couldn't 'do' illness without Him." - Lisa Copen

Poem

Since Chronic Migraine Awareness Month is here (June), I decided to write a little "poem" it doesn't really rhyme, but it does express my thoughts and feelings about dealing with this disease. This is my start of the month fun blog, no information to impart (sorry) just a quick little blurb about migraines.

Choices that aren't ours
Hating our days
Reason is out the window
Only the truest loves stay.
Never think
It's easy living with
Chronic pain.

Migraines pull us to pieces
Impairment of our lives
Gives us endless days of
Relentless pain and advice
All we really want
Is the return of inner peace. We
No one feels at ease
Every day, no relief, help us
Someone, please.

"Fall seven times, stand up eight" - 1000+ chronic pain quotes on Pinterest.

Migraine on the go Essentials

I remember when I was a new mom, how many things I had to have, just in case. Diapers, wipes, change of clothes, light blanket, bottles, formula, snacks, baby food, toys... The list goes on and on! There were times I could get away with half of it, but most days I needed my entire diaper bag.

Having to deal with migraines makes me feel like a new mom all over again. I have my "go bag" that I better not leave the house without. Medication, water, travel cup, snacks, sunglasses, phone, tablet, ear plugs; and if I am going to the doctor, then I have to bring my migraine folder. If I am spending the night somewhere, I have to grab my mouth guard and daily medication as well. I am always glancing through my bag before we leave the house, just to make sure I'm not forgetting something.

Medication, more specifically the acute medication that is supposed to stop a migraine in its tracks. I have two different triptans, Benadryl, ibuprofen, and some PMS medication. All in a little case that keeps them nice and orderly. The little bag is especially important to me, I can find anything I need with my eyes shut (as long as no one messes with it).

I take my travel cup everywhere, it can hold around 20 ounces of water. Before I leave the house I fill it up, if I run out while we are out of the house, then I get a bottle of water somewhere and refill it. I even made a carrier for it for when I do my walking.

Snacks, I carry these so I won't miss a meal, seeing as that causes migraines too. I do my best to keep them to healthy snacks, if only because chocolate melts when it gets too warm.

I don't think I have left my house without my sunglasses in over two years. My fiancé teases that he never gets to see my eyes anymore. I even keep them on when visiting other family member's houses. My sunglasses are polarized in order to "keep the fluorescent lights from reflecting into the eyes". They are not all that successful, I really want to take them to a car tint shop to get them darker.

Like most people, my phone goes everywhere with me, not only because I feel lost without it, but I have tracker apps on my phone. If I get hit with a migraine while I'm not at home, I can input details about what medication I took when. If I don't have the phone, then I am liable to forget what I took when.

My tablet is almost as glued to me as my phone is, for pretty much the same reason. I have different trackers on my tablet, and it also helps me remember important dates.

Ear plugs, these are necessary for many many reasons. Reducing the sound of sirens, loud music, or any other auditory irritant.

My migraine folder is where I keep my paper migraine log, along with EVERYTHING from my neurologist. It goes with me anytime I need to see the doctor, especially in the E.R. I also put all paperwork relating to my migraines in it, E.R. visit papers, medication list printouts, doctor visit summaries, all of it. (I am already on my second folder, and I probably need a third.)

The rest of the items, mouth guard, and daily medication, only come with me when I am leaving for an extended period, an overnight or longer. Otherwise, they are easily accessible at my home.

Most of my "go bag" can fit in my purse. The only issue is that I really don't like carrying a big purse. For some reason it doesn't bother me in winter, but by the time summer rolls around, it is too hot to carry a big heavy bag.

I cannot wait for the day when I am free of these encumbrances, when I can just shove my phone and wallet in my pocket and just go.

"Your present circumstances don't determine where you can go, they merely determine where you start." - Nido Qubein

Doctors for migraines

For some people seeing a doctor is an experience that happens once a year. For chronic pain sufferers, it's closer to once a month. The process we have to go through in order to be properly treated, is almost like jumping through hoops.

First we have to pick a Primary Care Physician (PCP). This doctor needs to be someone who will listen, and knows how to help. Our PCP then refers us to a neurologist. The referral may be instant, but the waiting list is extensive, mine was 3 months. That seems like a lifetime when you are dealing with so much pain, and nothing your PCP can do is helping. What we need to understand is that this is not the olden days, when the family doctor treated people from birth to death, and everything in between. In the current times, our PCP is just that, primary. They can treat us for routine things, like a check up, but beyond that, they are just a stepping stone to the specialist that can handle your specific problem.

There are many specialists your doctor can send you to. Everything from dermatologists (Drs who deal with skin issues), to podiatrists (Drs who deal with feet), and everything in between. Most of which I cannot even pronounce. If I were to try to list them all, this blog would seem endless. The main specialist that concerns people with migraines, is a neurologist, a doctor that works specifically with the brain and nerves.

I have been to two neurologists and they have been radically different from each other. I will call them Dr. S. and Dr. C.

Neurologist number one, Dr. S.: I saw him about five years ago, Dr. S. was a doctor that pumped me full of pills, and when the pills failed, he told me I was impossible to treat, and he could not help me. So I left.

Because of the way he treated me, I was afraid to go to another neurologist. What if they said the same thing? What if I am untreatable? What if I never get better? So I ended up using the E.R. as my treatment facility for three years. Luckily for me I changed PCP's and got one that really listened. As a result of that, I was referred to a great neurologist.

Neurologist number two, Dr. C.: She is the doctor I wish I had years ago, when my migraines weren't so bad. With her help they may not have gotten as strong as they are. Dr. C. is great. I can ask any question, she answers what she can, and if she doesn't know, she says so. I asked her about Dalith piercings, she "did not have any scientific information one way or another on their effectiveness" and asked if I got one I could help her figure out whether or not to recommend them to some of her other patients. It seems to me that we are working together to solve my migraine issue, and that is the kind of relationship you want with your neurologist. Even when I am not there for a follow up, she still does a mini check up on me, to see where I am, and what she can do. She will sometimes alter a medication here, or eliminate at trigger there. Your neurologist will most likely send you to other specialists, a sleep doctor, psychiatrist, chiropractors, and dentist, just to name a few. There will also be tests; MRI, EEG, blood work ups, and many many more. These are important steps in your treatment process. They serve to rule out many physical barriers, or causes of migraines.

Just because one doctor can not or will not help you, doesn't mean a different doctor will be the same. Five years ago I was untreatable according to my doctor. I was afraid to go to another for help, so I didn't, until the migraines got so bad they are almost impossible to control. If I had tried a different doctor right away, my life might be radically different right now.

It doesn't hurt to try a different doctor, the worst thing they can say to you is, "I can't help you", that's when you move on to one who can. If they don't listen, drop them like hot cakes, and get yourself a good doctor. So what if you see five different neurologists in a year, you are trying to find the best doctor for you, and that is the most important factor in your migraine fight. Like I said in an earlier blog, tell your doctor everything. Be totally honest! It is the only way to get the treatment that will work for you.

**This blog is not intended to be used as a substitute for medical advice**

"It is so important for those living with chronic pain to establish good communication with both their healthcare professionals, and their caregivers. Clear communication about pain is vital to receiving proper diagnosis, and effective treatment." - Naomi Judd

Screen Usage

Everywhere we look there are screens, cell phones, e-readers, flat t.v.'s, tablets, and computers. Unfortunately there is something about these screens that play havoc with our migraines. It could be the brightness, the amount of blue light, or the wavelength of the light. Even the amount of time we spend in front of them could be a factor. A good day can turn into a bad day in the blink of an eye if we spend too much time in front of screens.

But we, as a society are extremely attached to our screens. Our smartphones go with us everywhere, they help us keep in touch with everyone. Even if we have a bad migraine day, we just pop our glasses on, and jump onto Facebook to let others know.

I'm no different. I spend way too much time on my screens. I love my e-reader (tablet). I just love reading, I always have, and with an app that turns my tablet into an e-reader, I can get books from the library without leaving my house (meaning I don't have to deal with the lights). I am ecstatic this app is available and free. However, I have also noticed that if I read too much, if I finish too many books in one day, I get stabbing pains behind my eyes. Part of me wants to say, "it's worth it", but the more realistic part of me says, "nothing is worth this amount of pain."

Flat screen t.v.s give off so much light and noise that sometimes I can't be in the same room as one. My fiancé is disabled, so he is home all day. I am fighting for my disability for migraines, so I am basically a hermit. There are moments the t.v. is just too much noise and light, and I just have to run away.

Tablets are wonderful, I am writing this blog in a notebook, then I will type it on my tablet, then with one finger, I can copy and paste it into my blog. Quick and easy. The game apps on my tablet also keep me occupied most of the time. I can use the Internet to find crochet patterns and "screen shot" them with a push of a button so I can come back and try them later.

As for computer screens, both the old boxy screens, and the new flat screens are bad for us. The "refresh rate" (or the rate at which the screen updated itself) on the old screens was absolutely painful to migraineurs. I remember walking into my call center job once, migraine free at the time, sitting at my little cubicle desk, taking one glance at the screen, and feeling like someone was repeatedly stabbing me in the head with ice picks. I could barely move. I was trying to see through tear filled slitted eyes, seeing double, trying to type a legible note to my supervisor stating there was no way I could work that day. Once back home I struggled with myself, but eventually I decided my health was more important than any job, and I quit the next day. The new screens behave like t.v. screens, they have the same issues. They are too bright, and the light they emit is the wrong wavelength for migraineurs.

The "blue light" produced by all these screens is adding to our migraines. There free apps to help reduce the amount of "blue light" coming from the screens. You can also buy some physical filters to use. Click on this LINK to find out more about the different kinds of filters, and how they can help you. Unfortunately there isn't a blue light filter for Apple products (unless you are willing to "jailbreak?" your item), but Google has a great one that works, it's called "Bluelight Filter" it mutes your whole phone, and is adjustable. The apps for Apple only work on web pages.

"My illness has shaped me, but it does not define me." - Inspirational Quotes Chronic Illness

"Good" days

In case you haven't read any of my other blogs, let me start off this way. Everyone's ability to tolerate migraine pain is different. Each person has their own definition of what they can and cannot handle. Please keep that in mind as you read this. Every person's "good" days are relative.

"Good" days for some migraineurs, is making it a whole day at work, for others it is just making it out of the bedroom. Every migraineur has their own ruler to measure their "good" day. They may not be able to verbally define what it is, some may not have had one recently, so they forget what a "good"day looks like to them. The blueprint for each migraineurs "good" day is locked up somewhere in their mind. We need to stop focusing on the bad days, and start looking for the "good" days.

I consider my "good" days, days when I can get out of bed in the morning and join my family in their daily activities. My "good" days happen when I can go grocery shopping, when I can do any kind of shopping. Too bad they don't happen more often. In the morning, if I can get up and make coffee without suffering stabbing migraine pain, it's a "good" day. Thanks to my still healing dalith's, most of my mornings are good. It is the afternoons that bring the pain. As long as I don't feel I have to mince my steps in order to keep my head on my shoulders, the day is "passable". The second I have to take small steps, or slide my feet so I don't jar my head, I know my "good" day is going downhill fast.

Even if I start with a "good" day, I know it is not likely to stay that way. Most days disintegrate from "good" to "passable" to "Holy bleep, who is trying to kill me now?" To make it worse, the deterioration usually happens with in hours, if not minutes.

Last summer, I was having a good day, so we went to our local roller coaster park. Bad idea, very bad idea. We got there around 11 am., and by one pm. my good day had become a "who is trying to kill me" kind of day. Between the screaming (mine), the jerky rides (my poor neck), and the noise and pressure of humanity, I was beginning to get a migraine of major proportions. Thankfully, I brought my medication (they were still working at the time) and they muted the migraine enough to allow me to have a great time with my family, without feeling like I was floating or falling asleep. That was the best day of last summer.

I wish that all of our days could be that way. The pain comes, the medicine kick the migraines butt, and we enjoy the rest of our day. I know it is a dream, but dreams are what gets us through this thing we call life. So, dream big. The memory, and sometimes just an idea of a "good" day, is what gets us through the "worst" days. We know the "bad" days cannot last forever, "good" days have to return sometime. I hope that the "good" days outweigh the "bad" for all who suffer from migraines.

"Every Day may not be Good, but there is Some Good in Every Day." -Quotes Valley.