Dancing through January

 Hi y'all!

I was raised my first 8 years mostly in North Carolina in and around Ft. Bragg, and even though we had neighbors with international heritages, I still have southern vocal patterns. Oh well, it is what it is. My parents are from the front range of Colorado and the midwestern part of South Dakota, so they don't really have southern ways, and their parents weren't southern either. It's just something I picked up over time. 

Anyways, I liked having the word of the season being Dancing. I had a section of my habit tracker in the bullet journal for it with the quote from myself discovery work, "Dancing the dance of life brings me joy." In that section, I also doodled some eighth-notes, a dragonfly, and a five-petal flower. I like the look of it, and it was visible every-ish day when I checked in about whether or not I had done the 22 things I was tracking for the month.

I used a lot of music through the month. There were the weekly zoom meetings with other crafters on Sunday afternoons that the local fiber store owner hosted where the first two-thirds is music jams supplied by the participants in a Spotify playlist we all listen to as we craft along where we happen to be located, then last third is us sharing our names, locations, and what we crafted that day (sometimes, since the last meeting, but not often). 

I also have been listening to the Daily Wellness on Spotify to get some music and some meditation and just have a happy start to the day. That lead to liking lots of songs, and then finding songs and artist from when I was younger and liking their music on there. Now, I listen to hip-hop women artists when I do a lot of my typing as I like the lyrics and the pace for focusing.

I've also been Dancing through my crafting. I thought I'd be lucky to craft 500 yards when the month started. Then, maybe 1,000 yards. Not even 1,500 yards would be a stretch. Nope, I Danced my way all the way to 1642.1 yards crafted, and 1478 yards out of stash through a skein of yarn that hadn't been removed when I got rid of it a while ago, so that's 3201.1 yards out of stash for the month of January. I'll do a separate post of the projects and their details later.

I've also been enjoying the scent of a vanilla and sugar candle. It's not Dancing exactly, and not quite hip-hop style, but it's been helping me to feel happy with the passing of the colder days of winter. There had been a mulberry colored candle that had a spicy scent, and it gave me a headache. This one is nice, and warm, and floaty, like Queen Latifah singing a mellow ballad. 

I just like all the joys of Dancing has brought to me this month. No, it's not in club, mostly in my living room, jamming as I bee bop along through life, and that's cool. It's nice to add some pep and some joy to your steps, some rhythm to your days, beyond the routines of getting up, some music to your cardio. It's all good stuff, and that's very good for my soul.

Take care, y'all, I'll write more later,
Jen

The Power of Yet

 Hey there, everyone!

Recently, I listened to the podcast, ADHD ReWired, and it was the episode 357 “Accept the Brain You Have with Terry Huff.” In that episode, Terry mentioned something about goals not getting done, and the host, Eric Tivers, made the distinction that a goal hadn’t been done yet. And, that small, three-letter word got stuck in my head. Yet.

We folks who have ADHD, or a sub-type, have lots of goals that haven’t been accomplished. Yet.

I am empowered by that little word. Yet gives me the hope that it will happen someday. Yet means I still have time to get the work done. Yet makes it possible for “done” to happen. 

So, how do you feel about the power of the word Yet? Is it a new thought, or, something that you’ve heard before? 

Let me know in the comments, and we can keep the conversation going.

And, with that, have a good day/night as the case may be!

Stay safe out there,

Jen

Thoughts on Non Attachment

 A while ago, I learned of the idea of non attachment to physical pain. I ignored that idea for a while. Then, I got ill with bacterial meningitis in 2011, and as an after effect experienced tremendously strong migraines and tension headaches, such that I thought my skull breaking open would be a blessing. 

During the midst of the bad headaches, I was trying to read Jon Kabat-Zinn's book, Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. I still haven't made my way through the whole thing, yet. But, I got to the part about his program for mindfulness-based stress reduction to help those with bad health outcomes reduce the badness of those outcomes through mindfulness meditation taught to them in specific ways. A big part of the program, from what I was able to understand, was accepting the pain as just a process your body is going through, that you are observing. It's about not identifying with the physical pain as a part of you.

I figured, what the heck, I have nothing to lose from trying this myself, and if it works... then I won't hurt as much. So, I started trying to meditate while going through a migraine. I didn't see immediate results, but it didn't make things worse. I tried some more. 

I remembered the studies I had read, and presented to the class about, where folks who were meditators of various times from less than a year to longer than a few decades were prodded with something like a mild heat stimuli. The ones who had been meditating for just a bit were easily distracted from the meditation by the heat thing. Those who had the most practice meditating never seemed to notice the heat thing, even when turned up a bit more. And, when asked about it, were unaware it had happened. 

I knew meditation could work, empirically, and, yet, could it work for me to modulate the pain? 

A week into my process, I decided to stop curling myself into a ball whenever the migraines struck. Instead, I would lie quietly on the bed, and not make a fuss over going through the process of the migraine. It helped a little bit more.

Eventually, I found I was able to go to my room, lie down, and be quiet for the duration of a short migraine. Taking the struggle and frustration at the situation out of the situation lessened my distress in the migraine overall. Now, I only get frustrated with the long migraines. The multiple day ones that tend to last for longer than half a month. I'm going through that now.

The stresses of the past week doesn't help. My theory as to why a lot of others and myself have migraines that last a while in January is because December is usually a stressful month. This past December was different than in years prior, which is a different kind of stress, so even though there were fewer folks to deal with, loved though they are, there was still a different set of stressors. So, January came in with it's usual migraine storm. And, now, with the stressor of the rioters in the nation's capitol, and the fear that induces, it's no wonder the migraine is continuing despite the medication that increases fears and yet breaks up migraines. 

So, now, I'm trying to recognize that even the fears are thoughts that deserve to not be attached to and so then I won't suffer because of the frustration between how things are and how things appear in my mind's eye. My mantra when going through the non-attachment to physical pain was, and still is, "Pain is just a mental event." My mantra for this non-attachment to mental pain will be, "Not going to get attached." If it needs adjusting, then tweaks will happen. The physical pain mantra without the word, "just," wasn't as effective for me. Some folks swear by the mantra, "Jesus heals all." If that works for you, so be it. It's not what works for all, and that's okay too.

Word of the Year, Personal Review, 2020 ~ Manage

 My Word of the Year for 2020 was Manage. This came from a larger quote, by Sri Sri Ravi Shankar, “One who can learn to flow with the current as well as manage the current is the successful one.”

I think I focused on the wrong part of the quote, but the season before last year had been one of floating a lot, and I wanted a little more direction. By the end of the year, I had come to dislike the word Manage for my word, but not enough to change it.

The year began simply enough. January, was it's usual beast with 100% of the days being full of migraines. (I have a new theory about this for a future blog post, so watch for that! It's not earth shattering, just mind expanding for me with implications for future changes.) The migraines continued into February with some other things going on in the personal world to Manage. March, what can I say that hasn't already been said before? 

We in the US, not sure about the rest of the world, began the month of March much the same as any other month in the rest of the 21st century. Then the weekend around the Ides of March in the middle of the month came (for those that don't know their Julius Caesar history, the Ides of March are the 15th of March, the date to settle debts, which Caesar did with his life, as did a great many people in this century from that date forward, but I'm getting ahead of myself). And, my household went into a holding pattern, as many in the world did. Would we go to work on Monday? Would we be able to go to the grocery stores? The hospitals? What exactly was closing and when? So many questions. So much misinformation. So much confusion that looking back could have been avoided. But it wasn't and so we are still digging out from the mess that was started first by those in leadership saying it was a "flu" and then because of that not providing adequate care and information for the masses needing an unprecedented amount of both.

April passed in a blur of Managing expectations and wearing masks when out of the house. Because whether or not they did anything, what if they did do something. And, they showed as a sign of respect that I respect your health, so I'm wearing my mask to protect you in case I'm asymptomatic and don't know it. That's the simple thing that showed up a lot in the Spring and Summer months was the sheer entitlement of folks not respecting each other. Folks deciding that their anger at the situation was more important in grocery store videos that went viral than the government and store rules that we wore masks. 

May came and went with more time outside. My pup and I took some time in our neighborhood to take socially distanced walks around. Our neighborhood is semi-rural and so we walk on the roads. I carry a mask in my pocket, to pop on my face if I happened to come across a person who wanted to come closer than 7-8 feet even though the distance for masks at the time was 6 feet. I have had some weird health things in the past, so was and still am acting from a very cautious place with this. 

June the world learned the name George Floyd. Managing my own internal biases and learning which family members were being ignorant on purpose and so were trying to pull me into discussions about whether it was possible for black people to have the same prejudices with white people, which for the record, it's not, was an interesting exercise in patience, which I don't have a lot of. There's not a 400 year history of black oppression of white people by black people with the rules of one drop of whiteness in your blood making you white so there's more white people, so there's more enslaved people to work the plantations and homes of the black oppressors for free. Sounds kind of ridiculous when you change the positions of the races. To paraphrase Dr. Jaiya John from a podcast I heard in October, through the Good Ancestor podcast by Layla F. Saad, white supremacy is a virus that we have lived with and don't know what it would be like to live without. I want to live in that world. 

July was more Managing. This time internal as well, as I had asked for an assessment for distractibility and memory issues. I had been noticing that I couldn't settle my mind to much of anything. I had been putting it down to the pandemic for the last few months, but thinking on my life, I noticed that this was how I just was. Always mentally curious and able to do deep dives into subjects that are interesting, but hardly able to do anything that wasn't at all somehow motivating to me. I had to know why it was important, agree it was important, and like doing it, to maybe even want to do it. Or, I'd find an excuse not to do it. Doing it because of making other people happy doesn't work because that's manipulating them, if I don't want to do the thing. So, at the end of the month I was evaluated for adhd. 

August was more Managing. Still internal, but with others too. In early August, I got the diagnosis of a type of adhd. Then, I did deep dives into what that was. I took a dedicated break from a crafting group I'm part of to figure out my place in the world with this new information. Also, my pup was beginning to do poorly, and I didn't want to deal with a lot of questions, so a break would give some space for whatever happened in the next few months.

September came with some hard conversations to Manage. We talked with the vet about the process for euthanizing our dog because he was doing so poorly. As a last option, we took him to a specialist vet on the off chance that something might be easier for him in the last days of life. The first appointment was in October, so we Managed to wait for a while, did I mention I don't have a lot of patience? The new school year brought a new pattern to the schedule of the weeks. Since March through June the weeks had been fully remote through the computer. Then the summer was it's usual break. Summer school had been thought about, but dismissed in this time. So, the county had been in the yellow for most of the summer with occasional bursts into the other two colors. (out of a red, yellow, and green system, with red being fully remote, yellow being hybrid, and green being fully in person allowed.) The school district chose to do a yellow hybrid system for the school year, until and unless they had to go red - fully remote, even if the county went into a green zone to better protect the students and staff. That means our days have had a different pattern than ever before with two days in person, a remote day, and then two days in person. Getting used to the pattern of days has taken a bit of effort, but it's happened and now feels normal.

October came with more chances to Manage. Early in the month my pup met the specialist vet. I have only ever heard her voice over the phone as the visits have been curbside the whole time of knowing her. She did some tests, used her vast knowledge and care, and developed a plan to try to turn around the bad bacterial infection he had had for a long time that was resisting other antibiotics he had tried. She started him on an antibiotic that required wearing gloves, washing hands before and after administering the medicine, and making sure not to touch it to anything we would ever use for human consumption. While he was using that medicine, we couldn't let him lick us or touch his nose or face to us at all. He did sleep on the bed, but that was too much of a battle to fight at the time. In October, I also went to the orthopedic to see what was going on with my shoulder that was really sore and weaker than it should be, and had been since the summer. He took some xrays, gave me a shot of steroids and lidocaine, and sent me to regular pt. I started pt and loved going there, as the people were great and it felt good.

November, I also Managed expectations. I was still going to pt and wasn't progressing like I felt I should be. At the end of about 2 months, I was still at what felt like the beginning of the process. I requested another appointment with the doctor to see why. Until then, pt was the only time the shoulder felt good naturally, so I continued appointments until the day before the doctor's appointment in mid December. I also Managed handling the scary medicine for my pup. The medicine could cause a weird kind of anemia in those that touch it and ingest it. I also Managed writing about 37,000 words for the month in NaNoWriMo, an international writing competition to write a novel in a month. It was the first time I tracked my words written in a month.

December was a month to Mange lots of things. Near the beginning of the month I said good bye to a new friend as they left their internship at the pt clinic. I Managed to show my love in tangible ways thanks to the beneficence of the year. I Managed to write 8,000 words without the help of the daily check ins and sprints of the writing community. which is still pretty good. I have a simple bank book system that has columns for date, document name, starting word count, total word count, running balance (resets monthly, manually), and then time in minutes and a words per minute column where the word count for document is divided by the minutes. Oh, and there might be a comments column, I usually have one of those in most spreadsheets. The math columns are formulas, so I don't have to do the math mentally, and I have them filled in for about 20 rows at a time until I get to the bottom of the filled in rows and then pull down the formulas another 20 or so rows. (All this in case you want to duplicate your own spreadsheet.)

So, towards the end of December I participated in Susannah Conway's process to find your Word of the Year. I had the idea before beginning that I wanted something funner than Managing, and I wanted something more active and external as well. Dancing was running through my mind, but I had heard that this process would help solidify the Word of the Year for folks that were a bit vague on it at the moment. 

I went through the process of the first two days about a week after receiving all the emails. Then, I set it aside for about a week. Found it again and finished the day's work that I had been doing. Then, continued on through the process, just not always giving it the time that the process had intended. By the end of the process, I had solidified that Dancing was a good word for me in 2021. To support Dancing, I selected Energy, flexibility, Vibrant, and Ease as these are the feelings that Dancing creates in me. 

In hard times, our attitudes can make or break our spirits. May yours make your spirit sing, and if it isn't change it. 

Ravelry

On 16 June 2020, Ravelry rolled out a new look. The aesthetic is their choice to do with as they see fit. However, they also broke some of the screen reader access they had in doing so. Folks have reported seizures, migraines, vertigo, eye strain, and other symptoms from spending a bit of time on the new version.

Two days later, Ravelry released a way to access the older version of the website, but one had to go through the new version to get to the older version to do so. This still leaves out those who cannot access the site because of the broken screen reader access or other symptoms. Plus, the fact that one had to know that the access to the older version was even available.

Throughout the time since Ravelry has released their new look, they have posted two blog posts. Both posts are super cheerful and encouraging about the changes. Neither post mentions the hardship some members have in accessing the site, just a small reference to a set of users using the older version. Not that that is an indication of anything when all the former users are not able to access the site, and what does it mean anyways. Percentages were given, but percentages of what numbers, from what time and what kind of snapshot is that. Statistics are always manipulations of data.

There's been a lot of new accounts from folks logging in to see how things are to see how the code works and offer how to help adjust it for better practices to make it accessible to all users. Some new accounts are also journalists and others looking for interesting things to stir up trouble. And, a few are valid accounts of new folks actually interested in the crafts Ravelry represents. A 103% increase over a time when account sign ups were closed isn't hard to explain away.

In the past, the owners of Ravelry have been transparent and hands on with users. In the time since the change, Ravelry has only posted twice on social media outlets to share the blog posts already mentioned. This feels like ghosting from the owners.

The forums have always been open to a variety of topics. In particular forums, everyone can ask questions of the management of Ravelry and have a discussion. Since the change, the moderators of the forums in question have been locking threads and hiding posts by folks asking valid questions of the management. When that happens and folks ask more questions, those are hidden and the questioners are banned from asking questions. This is why folks with disabilities and their friends feel like the management of Ravelry is being ablest and gas lighting and demeaning us.

We just want an open discussion with the ability to fix this snafu. It can be fixed. Alt text for screen readers is not hard to add to the log in screen. A choice to log in to the old or new version at the log in screen is not a hard thing, why make folks go through the adverse reaction website to get to the better website (even if it's not the best it could be).

Frustration ... Acceptance

Frustration leads to suffering.
Acceptance leads to peace.
Existentially.

Let me break that down.

I used to get really frustrated when I had migraines. Sometimes, I still do. I'm human. That frustration at having the migraines led to the suffering from the pain.

You can be in pain and not suffer.

I have been in pain and not suffered.

The secret, not-so-secret-secret, is to not resist the pain and therefore not get frustrated and just radically accept that yes, there is going to be pain, now how am I going to deal with it?

Am I going to rest, and let my body have a break?

Am I going to take some medication to assist my body in getting through the time?

Am I going to use ice or heat to reduce the pain?

All of those things require acknowledging that I am in pain an accepting that it is happening.

Pushing through the pain, creating more pain, and making things worse leads to frustration.

Frustration from not being able to do what I want when I want.

Frustration from my body being not as strong as I want in the moment.

Frustration from not accepting life as it is.

That's the simple definition of radical acceptance.

I'm human, so it's a continual lesson. I do learn it again when frustration sneaks in.

Acceptance is self-care.

Blessings of the Migraines, an update

So, why would I post about the benefits of migraines? Grandma prays continually for a cure, but I don't think that will happen. It may, but, I'm not holding my breath.

So, what are the benefits of migraines?  Let me count them....

1. Greater gratitude for life and simple things.
1. Walks with my dog in the crisp winter sunny days, the sharp scent of snow enveloping my entire being
2. Summertime walks at night and getting to see inside the neighbors houses'. Thankfully, they're all decent folks.
2. Noticing the changes of when birds start to sing in the morning from the insomnia the various medications cause.
3. Understanding how to communicate without words about stuff with folks who don't talk.
4. Getting more knowledge and connection with others in the extended family and friends circles.
5. Growing in a sense of who I am, and what I'm not going to put up with anymore.
6. Less caring about what folks think of me since I have to wear sunglasses at night in the winter to go into stores.
7. Getting to know the quieter people in my neighborhood a bit more.

It's not all roses. There's days when I can barely keep anything in me due to the ongoing nausea, and days when I can barely get out of bed due to the head hurting to move, and the great inconvenience of it all being random. But, I also look at the silver linings.

Soul Cleansing ...

Hey there, everyone!

I have been having a hard year. I had migraines non stop between March and November of 2015. I lost my crafting mojo. I even lost a lot of faith in reality and God. I have found faith in reality again, but I don't know what I think about God anymore.

I don't think in the same way about a lot of things. I'm more clear eyed about my past and some people who misused my generosity of spirit. I have no control over the ways that the head works, but I do have control over how I respond going forwards. Anyway, that is not what I wanted to write about tonight.

But, it's what needs writing about, so I am going to rename this post, and write about the bullet journal journey later.

Now, I am writing about this as it is important.

I have medicine for a few things. Some are to prevent migraines by increasing the tolerance for the things that set the brain of into a spreading cortical depre, like those experienced by folks with seizures, only the electric storm only affects the brain and not the parts of the body that control gross and fine motor movement. Depression, the mood disorder, is also sometimes associated with the spreading cortical depression, which is just like a ripple across the surface of the brain that dims its electrical activities for a bit, and that leads to the seizure of folks with epilepsy, the attack phase of the migraines, and possibly the lowering of mood in depressive epi, along with a host of other side effects that this spreading cortical depression sets in motion that are designed to protect the brain and the body, but mostly the brain.

Some of you may remember that there are four stages of a migraine when it is in the wild by itself. They are prodome, aura, attack, and postdome. The prodome stage is marked by a sudden increase in desire for carbohydrates and simple sugars. This stage can last a few days. This is also when lots of people eat the chocolate that is blamed for their migraine, even though it is just a bit of time linking the two things along with the cravings for those carbohydrate and simple sugars. During the aura stage, which is not always present, the person experiences hallucinations of sound, smell, and sight along with flashes of light that crosses their field of vision. The attack stage is the pain of the migraines, also there is nausea, sensitivity to sounds and lights. Most people in this stage strive to get to the darkest and quietest place available. The attack stage will last anywhere from four hours to three days or so. Then comes the postdome. This is like the hangover for those who know what that feels like. For those who don't, you're groggy, sounds still smart, bright lights can hurt still, you want to sleep it off, and food is not a good idea. This stage can last for a few days too.

A single migraine from start to finish can go something like this...

Sunday, you wake up and eat pancakes with syrup, cereal, coffee with milk, and a muffin for breakfast. You spend the morning trying to catch up on paperwork. Lunch comes and all you want is a sandwich and a bowl of soup in a breadbowl from Panera bread stores. You get the apple to look healthy for the cute cashier. Then, it's shopping at the department store for shirts and jeans. Then it's mid afternoon and you notice that you are sneaking the snack cakes to your child's school lunches. You know that something needs to change, you had to buy bigger clothes than last time earlier today. Then, it's supper time. You decide to be healthy and that you will have a good sandwich with lots of vegetables and some fruit for fillers, hey, you still have the apple from earlier today.

Monday, you wake up a bit after the second snooze button press. You have cereal and milk, toast with butter, coffee and milk, and some oatmeal to stay focused throughout the morning. Lunch time and you have a whopper of a burger with your friends from work on the floor, and think about getting lemonade, but get a super sized cola instead.  Snack time and you raid the vending machine in the break room, you get licorice, tortilla chips, nuttier butters, and some flavored water. Supper is steak, mashed potatoes, corn, cranberry juice cocktail, and butter pecan ice cream for dessert.
Tuesday, you don't so much as wake up as you are suddenly aware of this crushing, burning, white hot poker of a stick holding your head up on top of a spike with the same excruciating pain, no, this is beyond pain, whatever it is, it surrounds and is cleaving your skull and brain in half along the corpus collosum, and the sensation, whatever the heck it is envelopes your spine. All you feel is white, hot, burning, pain. Eventually, you pass out unable to take the intensity anymore. When your eyes finally flutter open again, you find that you can't move just yet. Your body is still in an insanely tight fetal position. You stretch out on foot and then that leg slowly, ever so slowly, just in case the pain of the night returns.  Eventually, you have stretched out all of your limbs and there was no return of the pain. You sit up on your side, so that you can vomit in the trash can that now lives by your side of the bed. The room darkening shades are not dark enough, and you can see it is a beautiful day outside in the world of the rest of the world.  You gingerly flex your toes as you stand up , sort of, you are still leaning on your bed, heavily. You use the wall and bed, then the door frame as supports on your way to the bathroom. After making it to the toilet and sitting down, you do your business. The strain of solid waste management causes you to loose your breath with the effort, and to get a small bit of pain, nothing like the night before, to hurt your head and your vision pulsates with the blood being pushed through the vessels in your eyes. You know you are a wreck and weak. You want to be able to do what you normally do, but today is going to be a lucky if you make it to the living room day. You are happy to have the habit of charging your phone by your bed. You make it back to bed gradually. Then, you do the hard part. You call your boss and disappoint them again, then you call your spouse to come home and get the kids ready for school bc you are not able to do it. You failed again. As if the excruciating pain and torture for no purpose wasn't bad enough, you have the ability to make sure you feel like the worst possible person for experiencing this horrendous event that you didn't ask to be part of.

Wednesday, you wake up still hurting, and groggy. You are feeling better today than yesterday about going through this, but otherwise you are still in the attack stage.

Thursday, you only hurt a bit in the morning, by evening you are ready to start being part of the family again.

Friday, you are still not fully functional in the cognitive areas and driving is not a good idea this time, so you stay home today too. You can handle the kids, getting them ready for school, and your spouse can go back to work.

Saturday, you are back to being able to drive again, and you take the day easy. By supper time, though, you are wanting something crunchy and sweet, maybe a lb and jelly sandwich with some potato chips would be a good idea.

And, so goes the story of another week in the life of a person who lives with migraines.

I have experienced the searing pain that I described above, and the other more insidious pain caused by finding fault with myself for having had the migraines. I'm still working on being gentle with me. But, there is no way to know when a night will wake me up from deep sleep with some pain or the cruciate curse pain, for the other Harry Potter fans out there. That's the hard part. For all of the advantages and advancement in technology and medical research we have access to now, I am at the mercy of my own brain waves and electronic system.

Micromechanics may have to be a new adventure for me, or someone, to find out the how and how to fix of the brain.  I could be content with not knowing the why of mig, if only the how was much better understood.

Right now, they are lucky to have a model of migraine stages.

Then, there are oddballs like me who don't fit the normal mold for migraine disease. I have as many as I do bc I have scar tissue in the brain section where migraines happen, so the reduced space for normal functions leads to more migraines than before getting sick and than others with migraines would have without the scar tissue.

My submission to the Meredith Vieira Show, Digital Make a Wish Booth

I was diagnosed with bacterial meningitis in 2011.  Since then, my number one hero has been Karen Forbes.  She saved my life by insisting that I go to the hospital when I was so sick I could barely make sense of the world.  She has helped me recover, supporting me when the world fell away leaving us alone.  She was there when oil had to be ordered in 50 gallon amounts because we couldn't afford full orders since I was unable to work.  She does the dishes even though it is my responsibility when I can't keep up because of constant migraines, which is my after effect from the bacterial meningitis.  She has done this while maintaining at least one and sometimes two jobs.  I am just amazed at how strong, powerful, and supportive she is.  I admire her stamina, and ability to maintain a positive affect through tough times.  I have had to reorder my life from a useful and happy worker bee, to one of a disabled person and relearning my new normal.  To say that this has been a simple easy road is a laugh.  Karen has been my rock through that process and continues to be so when the road gets really rough.  We also have a puppy that she insisted we get.  At first, I was angry about him and his unpredictableness, but he has grown into a great therapy dog.  He knows when the migraines are hard.  Karen's best idea. Thank you.

Goals

Hey all,

I want to share my goals for 2015 with you, so you can all be my accountability partners. Yay!

Here we go!

Crafting Goals

1. Spin luxury batt with supported spindles 
2. Finish MKAL Alpine 
3. Spin a traditional 3 ply with the wheel 
4. Reduce stash by 1/3. 10 miles to 20 miles 
5. Finish coopworth locks spinning 
6. Use handspun in 3 projects
7. Weave a scarf 
8. Finish 2014 Year of Lace scarf

Priority Based Goals

1. Health
1. Lose 5 pounds in the first quarter of 2015
2. Lose 20 pounds for the year
2. Family
1. Date nights with K
2. Fun as a family once every to every other week
3. God
1. Maintain daily Bible reading plan
2. Pray the World Mission Rosary weekly
3. Daily prayers
4. Education
1. Attend one Mythgard course
2. Attend at least one Coursera course, not at same time, nor same time as Mythgard
5. Self
1. Take care of my body
2. Respect my limits
3. Relax daily

So that's it!  That's my goals for the next 12 months or so. I can do this!

When I feel like giving up, I will tell myself

The pain is only temporary.  This too shall pass. I can use this time to teach myself more about how I work.  My thoughts do not make my reality.

Meningitis Anniversary

So, it's been 3 years ago today since I walked out of the hospital after contracting bacterial meningitis.  How has my life changed since then?

I still am rather isolated.  Not many folks visit me and I'm still easily tired by too much social interaction.  This is a result of depression and fatigue from the migraines that are the fall out of the meningitis.  I'm in pain a lot of days and try not to let others know since that's not really fun to talk about.  Instead we talk about dealing with symptoms, daily events, current projects, and so on.

I'm more attuned to the spiritual realm.  I see God in others easier than I used to.  I also am open to knowing God in different ways than I had previously believed were valid.  That is part of my ongoing growth as a Catholic, and part of my growth as a child of God.  I have been challenged to pray not just for the victims of various crimes, but also for the perpetrators of crimes too.  Even for those doing horrendous things, they are still able to be children of God, they just haven't realized it yet.

I'm about the same physically, though much less interested in being physical.  The bright noonday sun is too bright for my eyes, so I wear a baseball cap, but that is not enough to protect my eyes from the photophobia.  The lights inside stores are also horrible for my migraines.   I do utilize physical therapy exercises in the morning and evenings, but going for a walk is still unusual.  Doing more than a walk is unheard of, unless I'm on a vacation where there is a swimming pool.

I knit and crochet and spin now almost daily.  These activities were sometimes activities before.  Now, I know I'm doing well emotionally when I'm doing regular crafting.  Though, when I don't craft, that is a good signal that I'm not feeling well.

So, overall, how am I doing now compared to 3 years ago?  I am able to do more for myself than when I immediately had left the hospital.  I may have walked out of the hospital, but it wasn't very fast or very far to the car.  Now, unless I'm in great pain or feeling sick, I can walk pretty good for both distance and speed.  Yet, I'm still not back to where I was pre getting sick.  I'm variously frustrated, sad, angry, and accepting of this difference.

What are your ways of knowing you are in a healthy space?  How has your life changed in the last few years?

How to choose an online course for the term?

Fall 2014 Courses, Mythgard Institute, Signum University

There's open enrollment for the next term at Signum University already for the Fall 2014 term.  The summer has seemed to speed by this year.  I'm surprised to be thinking about courses again.

There are always three topics for the lecture courses, along with some foreign languages available each term.  This term the lecture courses are on Lewis and Tolkien, Science Fiction, and the Root of Fantasy before Tolkien.

Each course is taught by an expert in that field.  Lewis and Tolkien is taught by Signum's own president, Corey Olsen, of The Tolkien Professor|podcast fame and author of Exploring JRRTolkien's The Hobbit.Science Fiction is taught by the eminent Dr. Amy Sturgis.  And, finally, the Fantasy before Tolkien course is taught by Douglas A. Anderson, editor of The Annotated Hobbit.

With such awesome faculty, narrowing the choice of course down to just one (for my own sanity!) is going to be very hard.  I do like Dr. Olsen's teaching style, but have had a lot of Tolkien lately.  That's also a reason for steering away from Douglas Anderson's course as well, plus the vastness of the readings from Homer to Tolkien covers a large area and I'm a bear of very little brain when the migraines hit.  So, that leads me to looking closely at Dr. Sturgis' course.  I have read the larger works the course will be covering, and just need to read the short stories from the anthologies for the most part, to understand the topic.

I've been reading/listening to audiobooks of the Lord of the Rings and that feels like ancient history.  Whereas, the stories for science fiction will have more of a futuristic feeling, even if set in the past,m at least they are set in the 1800s and not the ages before time.  I'm ready for a more current reading material, and stories to carry me away from reality.  Escapism is one of the themes I expect we will cover in Dr. Sturgis' course, as well as the other.  With these migraines, I need chances to escape and feel like an outsider of the human race at times.

So, that's it for my thinking on how to choose the online course for next term.  What course is most interesting to you?  And, why?

Migraine Emergency Toolkit

I carry one of these with me daily.  It takes up a lot of space, but I don't want to not have my needed things with me.  I also almost always have a hat with a brim on to block the florescent or other too bright for me lights.  I'm nearsighted, so I use my regular glasses outside of stores more often and the sunglasses inside stores.  With the hat and glasses, I'm sometimes afraid the store loss prevention staff is going to ask to talk with me.

Another reason for carrying my kit with me is to have all the numbers on me for meds and doses, doctors and offices, and so on.  It makes my mind easy that I can just hand over my list to hospital staff and they can update my meds list if needed.

Since Zofarn, an anti-nausea med, can only be taken once every 8 hours, I also carry peppermint candies.  The Zofran is a melt in the mouth med and tastes of peppermint.  I've also done some checking into medicinal uses of mints and peppermint especially.  Peppermint naturally soothes the stomach.

So, between doses of Zofran, I suck on a peppermint candy.  Also, did you know that chewing hard candies can increase feelings of stress?  And, sucking on the candy, like on a teet or bottle nipple, can be soothing and send relaxation messages to the brain?  Well, they are both true.

Deep breathing while experiencing great pain or intense emotions also sends relaxation messages to your brain, that in turn, send out relaxation chemicals in your blood and so the tension in your body becomes lessened.  I'm trying to do that as I go through therapy to deal with the pain and stress of the changes to my life since 2011, now that I'm moving beyond the frozen survival stage.  I want to thrive, not just survive.

I choose to ...

Well, it's a long way off from Invisible Illness Week in September, but seeing as how I just found out about it, I'm sharing about it now.

It's a week for others who have an illness that others don't see to get mutual support and have a sense of community and not having to wonder if the answer to the question, "How are you?" is supposed to be the easy, "Fine, thanks and you?" or the real, "Feel like crap today.  The illness is acting up and I have to accept that I just have to make it through this bit of time to get out on the other side." or the sometimes even more intense, "Shut up! Your whispers are so loud they are making the ax cleaving my brain dig even deeper, so please just be quiet!"

Only that last one is not the best to maintain good relationships, even though it is why I grit my teeth sometimes.  I do sometimes tell Casper, my dog, "Be quiet! Just be quiet for a minute! Please!" Karen realizes then, before I do most of the time, that a migraine is going on because I'm usually long suffering and very patient with Casper.  He just responds by trying to lick me and kiss me.  Dogs are love.  Well, at least Casper is.

Nights like right now I know I'm in for a migraine when I slow down enough and the insomnia stops.  It's not even just being tired and wanting to sleep, it's a total absence of the sleeping thoughts and feelings kicking in.  It is almost 4AM, and I am finally starting to get a migraine, like I expected.  Lack of sleep is a trigger. Florescent lights are a trigger.  Going shopping for a bit, driving home in the rain with bright headlights coming at me from oncoming traffic and from behind with reflections off the night vision mode for the rear view mirror, all of that is a trigger one each by itself, but together... yeah, I don't stand a chance of no migraine tonight/this morning.

Anyways, this post is supposed to be about what I choose to do, in spite of my illness, or along side of it as it is always a constant frienemy.  I do my best to choose to accept the pain and stuff when I can't control it and hope that the medicines work.  If they work.

I choose to go shopping anyways.  Yes, I wear a dark hat and sunglasses even on dark and stormy nights, making the shop staff think I might be a burgler, but I do what I have to have less of an impact from the environment on my system.

I choose to create.  I went to the store and got yarn for a gift for my dad and a second gift for my mom.  I also picked up a journal I've had my eye on for months.  It's been months because the first store didn't sell them anymore and hadn't for a while, longer than a couple of weeks.

I choose to pray for folks when I can't do anything else.  I choose to use the mantra, "Pain is just a mental event." when the prayers are too hard to do with the pain in the cranium.  I choose to live and be messy and be myself and take care of things as things happen and am learning to be much more decisive than I used to be.

I choose to have fun!  That's been my mantra since childhood.  If it ain't fun, why in Sam Houston would any one do it?  Whatever it happens to be.

I choose to love strong.  I choose to drink water mostly, but when needed vodka or rum don't go astray.  Beer is too yeasty for me.  Oh that's another thing.  Somehow, I am supposed to go gluten free to see if that elimination diet does anything for my migraines. Then, I'll have to decide if there is an effect, whether to suffer the effect and enjoy bread and pasta and couscous and did I say bread? and muddle through another migraine.

I'm getting used to them.  That doesn't mean that I have to like them, or understand them all the time.  I can't. Even my neurologist doesn't understand migraines and why sometimes there's a slow burn to build up to the pain and others it's all I can do to get to the bathroom before my stomach revolts from the sudden intense onslaught of pain and associated nausea.

I choose to ask God to use my suffering to bring peace to others.  I guess this is what was meant by lifting up your cares and worries to God when I was younger.  I never really understood how you could give something to God, one because all is his to begin with, and two because how do you give someone your pain?  How do you let go of your anguish?  How do you let go of your brokenness and leave it at the foot of his cross?  How do you let the Great Comforter comfort you?  How? Why?

That's one question I will never know the answer to.  Why did this happen.  I had none of the markers for the bacterial meningitis that almost killed me and left me with migraines.  Compared to my friend who has blood cancer, at least mine is just something to suffer through and not die over, not unless I get bacterial meningitis again.  If I do the ventricles in my brain may get backed up with cerebral spinal fluid as the meninges that filter the fluid into the outer layer of the brain and the spinal cord will be even more scarred and filled with debris.  It is like I have arthritis not only of the joints but of the meninges too. :-)  A little gallow's humor there if you don't mind.

Anyways, it is now after 4AM and this is getting just a teensy bit long, so I'll hush for now.  I need to find an image that does this post good.  I know just the one too.


Image is from: http://www.bioidenticalhormonemd.com/assets/images/img_brain-electrical-activity-mapping-beam_1.jpg

I chose this image because it looks like the electrical storm that the migraines sometimes feel like in my brain.  I know that the meninges isn't really in the brain, but on the outside of it, but that's the easy to explain the geography.

5 Reasons Migraines are Not Just a Headache

24 months post BM, and I don't mean bowel movement, thank goodness!

I rushed going back to work before I was ready. That's the one thing I do regret, not getting to know my beast as others have called it. I worked for exactly 2 months, and haven't been able to tolerate going back since. That was 2 years ago November. I advise not driving when you are going from fine to tired and weak. And, definitely get in touch with a neurologist if you can, as they are trained to deal with changes to the physical structure of the brain, which is what has happened.

I was lucky that the hospital assigned a neurologist in the hospital and that I've been able to continue with him. Though, I feel like more should have been done sooner, in my care, then my after effects wouldn't be so bad. But, tis what it is, and can't be changed.

As for the migraines that come after BM, they are different because not only is it a migraine, but the part of your brain that has headaches/migraines has been damaged by the infection and has to heal. It takes 18-24 months for complete healing, though you're most of the way there by month 12. All headaches occur in the meninges, where meningitis caused inflammation and swelling. That swelling takes a year or so to heal fully, though most of the healing is in the first 6 months. 

This pushes your baseline for triggering a headache/migraine up a few notches, or in my case a lot of notches. This also changes the severity, intensity, length of the migraines. Before BM, my migraines were a few hours and gone with home care in the next morning. Now, it's a beast, migraine prophylactic and abortive medications to prevent and stop migraines, three of those, and that doesn't always cut it. Sometimes I've had to go to the ER for them to give me IV drugs to cut the pain. That doesn't always cut it, and I get admitted to the hospital for the migraine. My longest migraine was 45 days, with no break, two admissions, two trials of steroids, two trials of DHE45-protocol (supped up NSAID), and lots of time in the dark with nothing going on. I was bored and hurting. The second run of DHE45 finally had some effect and it started to break up the constant, unforgiving migraine. That was this January and February. Before that, my record had been 15-days. Now, if it stays under 20 I'm happy.

I'm not trying to scare you. Just sharing that this is a beast unlike any we've been on before. And, it changes as time goes on. I'm at 24 months post BM and I know that unless there's a miracle drug, which would require much better understanding of neuroanatomy than we have now, I'm not going to get much better. I'm at the best I can be with this. From here on out it's an attitude game. And, sisters, that's the hardest game out there, but the easiest to win too.

Blessings of the Migraines

It may seem weird to say I feel blessed to have the migraines, but hear me out.  I am alive, so feeling pain is proof off being alive.  But, it goes deeper than that.  When I suffer from a migraine, I feel like God is taking suffering from others to make theirs less harsh.  By having me experience this little pain, though large feeling to me, it makes another person's experience better, much like Jesus and the Cross does for Christians.

Just as Jesus prayed to God in the garden of Gethsemane to not have this cup, but not his will, but God the Father's will, I pray not to have the migraines, but not my will, but God's will and if God's will please use it to lessen the suffering of others in ravaged parts of the world.  I feel like this is the right way to be with the migraines at this time.  Maybe things will be revealed in the future to change that, but this is where I am for now.

One thing that was revealed, though, was not just to relieve the suffering of the victims, but also of the persecutors.  If the persecutors are forgiven and loved, they will eventually stop giving in to the persecutorial acts being asked of them.  I don't know if that is true, but it feels true.

Anyways, I started praying for the victims in Syria, especially the young girls and boys kidnapped for their desire for education and freedom.  Then, I heard a small, still voice asking about whether I could forgive the Syrian attackers, I was beyond shocked at the question.  Forgive those animals!  Did God know what they did to those children? To those innocent children? 

Of course he did.  He had died on the cross for the souls of all men, women, and children.  So, he must have died for these violators of others' being too, right?  It was hard to wrap my head around praying for the kidnappers and attackers to be forgiven and to have a better life than they have now.  But, what God wanted me to do.  It was easy to pray for the victims.  It was not easy to pray for the violators and mean it.

I learned that God does have a small still voice, that he really wants us to love our enemies as we love ourselves, and that what Jesus did with the cross is more intense than I had already figured out.  Jesus didn't just do die on the cross for my sins, or the sins of anyone I know, but for the sins of the attackers, the people we like to say are truly evil so we feel like we will never be in that place too, those are also the people Jesus died on the cross for.  He died for Andrew Jackson, whom signed off on the Trail of Tears, Hitler, Khan, Alexander the Great, the Vikings, the ones who attacked anyone all throughout our world's history, even back through the ancestry to the first human, many millennium ago.

And, did Jesus die on the cross just for homo sapiens or for all the human species?  My mind is blown just thinking about homo sapiens applications, though God and Jesus are so big that there is no limit to their love and power.  If he wanted to, he could have died for all of humanity from austrolipithcus and on up, at least I think that is the grouping Lucy was in.   I am just amazed at God's power and love.

Faith of a Mustard Seed

Earlier this summer, Karen and I had gone to a wedding with Casper.  I ended up getting a migraine from the lights.  The loud music helped to make me nauseous.  I let Karen know I was going to the car to take my medicine and rest my head, and that I'd like to talk with her there if she was okay with going outside for a while.

Thankfully, she came out to the car.  We had been talking with someone earlier in the evening and I couldn't hear what had been shared exactly because of the music.  Karen shared the story that had been shared with us.  After that, I initiated praying for those that had been shared about. Immediately after saying, "Amen," I got a stupendous insight.

I saw the mountain and a pail taking one pailful of dirt at a time and building a mountain in a different spot.  I had always thought of Jesus' statement, "If you have faith the size of a mustard seed, you can move mountains," as being in the background.  I had never given a lot of thought to this principle. It had always been believed but in the background, like wallpaper, the wall is there, but you don't really think about them.

I realized all of a sudden that the faith of a mustard seed doesn't mean magically levitating the mountain from point A to point B, but rather, that it is the faith that with concerted effort over time, the mountain will be moved with the filling of a pail of dirt, walking over to point B, emptying the pail, and repeating the process over and over until the mountain has been moved.  In that one second of of saying, "Amen," I went from a wallpaper understanding to totally understanding that thought fully.  I was so amazed that I said, "Wow!!"

Karen asked, "What?" So, I explained the insight to her.  It took a good five to ten minutes to get all of the words out.  I was so excited, but my head was hurting so we went home for the night.

Top 10 Blessings from Meningitis Induced Migraines

1. Time to pause and reflect on life while trying to distract from the pain.
2. Compassion increased for others who go through invisible disabilities.
3. Understanding of how the brain works increased.
4. Forgiveness increased for others and self.
5. Time to slow down and focus on relationships because work is out of the question with migraines 66% of the time.
6. Spiritual insight and awareness has increased greatly, yet I still understand very little.
7. Time to figure out my purpose and identity as an individual, not as a worker.
8. Ability to help train puppy because I am home almost all the time.
9. Blog more consistently.
10. Time to write letters to grandma.

 There are other blessings meningitis and migraines have brought me, but these are the ones that are top in my mind.

Coping After Meningitis, A perspective

There is no test for migraines/headaches. Doctors have to rely on the patient or caregivers for this information. You have to advocate for a neurologist who is educated in meningitis.

I started with Imitrex as a migraine aborter. It helps, but sometimes the migraine is persistent. There are prednisone tapers that help with the migraines too. There are drugs that push the migraines further apart, amytriptyline and topomax. I also take zofran/onadesteron for nausea and flexeril for muscle relaxation when too tense and unable to unclench my muscles. Then there is the breakthrough pain med that is a narcotic. I take it when the others aren't working and it's before time to take the next dose.

Wearing sunglasses in bright light or florescent lights with a hat is an accommodation I've figured out. Florescent lights are a trigger for the migraines. The dark glasses keep the florescent light from going in my eyes. The hat keeps the florescent light from going over my glasses and into my eyes. I tend not to get a migraine on the times I wear both while under florescent lights.  Is it a perfect system, no, there are still times I get migraines even with the glasses and hat.

Strong smells, raw green pepper, and bright sunlight are also among my triggers. It is good to try to notice if there's a time of day, after a repeated activity, or some other pattern to the headaches. I also rate the headaches. 0-no headache, 1- mild take nothing headache, 2- medication for the headache, 3- knocked on my back, pausing life, headache. I typically have 2 and 3 level headaches.

I don't know if you've joined a depression support group, chronic headaches can be co-morbid/ co-occuring with depression. For that, zoloft is a good mood stabilizer, and amytriptyline will help to get to sleep at night helping to reduce the concurrent fatigue, while also pushing apart the headaches.

Teaching and learning about coping skills are a great thing to do. There's paying attention to what's in the room (how many tiles are in the ceiling, how many blue/ white/ purple things can you see, have the person feeling unsafe describe the room she's in) this is a good distraction technique. Also, deep breathing and yoga does wonders for the body and for being able to cope with pain and stress. Any kind of exercise does, but yoga because it focuses on the breath gets you remembering to breathe. When we get all tense, our breathing gets shallow, heart rate increases, and blood pressure skyrockets. By deep breathing, we initiate the relaxation response and tell our bodies that they are safe.

Learning how to instill a sense of safety is key to stopping the self harming. Even just repeating, "I am safe. Today is Monday. I have to go to school/event" can be enough to bring on a sense of safety.

Pain is not constant, and it is just a mental event. Think of when you stub your toe. You really move it suddenly, with lots of pressure and force. That is what the body notices. It sends those signals to the brain, where we interpret the messages as "Ouch!!!" This happens really fast. But, the pain doesn't happen until the signals are in the brain. Now, with a headache, the pressure/ tightness/ achy feeling are physically in the meninges. So, the signals have even less distance to go before being interpreted. My mantra during bad times, is "Pain is just a mental event."

All headaches occur in the meninges. In meningitis, the meninges are swollen and tender like a twisted ankle, just in the head. The meninges are also the shock absorbers of the brain and spine. They are just under the skull and cover the entire brain and spinal cord in a protective layer.

With the brain, injuries take a long time to heal. My neurologist said that the first 6 months there's lots of healing, the second 6 months still lots of healing going on, the third 6 months less so, and after that healing levels off.

I'm at 21 months. My meninges are paralyzed from the severity of bacterial meningitis when I was taken to the hospital. I almost died. There are cognitive, perceptual, physical, and behavioral changes associated with the meninges having been infected and possibly damaged.

A thing like cutting, or not taking showers, or other self harming behavior is your coping mechanism. And, self harming coping mechanisms show a need to learn new skills for coping. Anger is a valid emotional response to this, harming yourself is not. I am in that process too.

Knowledge is power. Share this with the affected one and let her take it in slowly or voraciously as she is able.

It does get better. I had constant headaches at discharge in 2011. My present 66% is a 33% improvement. I have come a long way. I learned a lot about meningitis from WebMD and the Mayo clinic.  Both have good online resources. You can investigate the physical changes of meningitis in addition to looking up medications and a host of other things.

I just joined Daily Strength, an online support group forum, as there are no support groups for meningitis here in Maine that I could find.  I have been wanting to reach out and share with others like me.  I don't want to be alone, the only one I know with this disease, so I joined their support groups.

A great writer on grief, which is part of what we all go through with this diagnosis, is Elizabeth Kubler-Ross. She wrote about the five stages of grief, but never meant for them to be understood linearly. Life, and grief, is messy. We have grief for what was compared to now, for what changes our life will have to go through, and for the drain on our persons from the debilitating effects of living after meningitis. Whether that grief is recognized or not, it is there. Her writings may prompt conversations with your friends and family members about what you grieve over from this incident in all of your lives. Wikipedia is a good place to get the basics of her views on grief, or her book On Death and Dying.


So, what are some ways you cope with things that feel out of your control?  How can you gain some tricks to distract yourself from the pain?


I know meningitis sucks, but without it, I wouldn't be here now, and here is pretty good when I can ignore the pain, migraines, and my other co-morbid issues.  I hope the same for you.