Friday, September 12, 2014
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?
Sunday, July 27, 2014
|Fall 2014 Courses, Mythgard Institute, Signum University|
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?
Wednesday, July 23, 2014
This was a fast, compelling read. Kelyn faces hardship and grows through some sacrifices, including the death of her mother and the fining of her long lost father, who'd left before she was born. I read this through in one sitting, only getting up for food and a few other small breaks. I even stayed up the whole night through. It was a glorious read. The scenery descriptions were awesome, as were the characterizations and the plot was continually building towards the climax. I thoroughly enjoyed this book I received through the Early Reviewers program for LibraryThing. I gave the book 4/5 stars and would recommend it to anyone who likes high fantasy with barbarians, witches and quests for destiny! :)
I didn't expect this to be as boring as it was. I tried to like it. I really did, but I just couldn't. I read through the first two chapters faithfully, then skimmed the rest of the book. Nothing was satisfying in the characters, their actions, or the drama(?) of the story. I'm sorry to have requested the book. The cover is great, but as they say, "You can't judge a book by it's cover." I received my copy of this book as a part of the Early Reviewers program for LibraryThing and am giving my honest opinion. I gave it 0.5 stars.
Saturday, July 5, 2014
100 Christian Quotes by 10 Great Christians from Pastor Duke Taber was a joy to read. There are gems from some of Christianity's favorite saints and others from virtually unknown persons, but all are good thought provokers. The book is just a listing of the collected quotes. There is no commentary on the quotes and very little biographical information on the authors. Here are a few of the quotes I loved and highlighted in my version of the book.
"The real test of a saint is not one's willingness to preach the gospel, but one's willingness to do something like washing the disciples' feet -- that is, being willing to do those things that seem unimportant in human estimation but count as everything to God." ~ Oswald Chambers
"To excuse what can really produce good excuses is not Christian charity; it is only fairness. To be a Christian means to forgive the inexcusable in you." ~ C.S. (Clive Staples) Lewis
"If you board the wrong train, it's no use running along the corridor in the other direction." ~ Dietrich Bonhoeffer
"Destruction of the embryo in the mother's womb is a violation of the right to live which God has bestowed upon the 'nascent life'. To raise the question whether we are here concerned already with a human being or not is merely to confuse the issue. The simple fact is that God certainly intended to create a human being and that this nascent being has been deliberately deprived of his life. And that is nothing but murder." ~ Dietrich Bonhoeffer This one has helped to solidify my views on abortion.
"Secular music belongs to the devil? Does it? Well, if it did I would plunder him for it, for he has no right to a single note of the whole seven. Every note, and every strain, and every harmony is divine, and belongs to us." ~ General William Booth
"I notice that those who don't believe in uniting with a church or organization. I notice ya'll use electric lights -- that's organized! If it wasn't, you'd be electrocuted." ~ Aimee Semple McPherson
"Remember something, God never permitted a difficulty to come into our life without also giving us the ability to handle it. God has provided us with every faculty. He has given us the power that we need for living victoriously. It is a fact that everyone of us down deep has what it takes to sucessfully meet whatever life brings." ~ Kathryn Kuhlman
These are just a few of the great quotes in this book. I gave the book a 4/5 stars.
Wednesday, June 25, 2014
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.
Wednesday, June 11, 2014
Second time this week. I'm at 40 and counting hours with no sleep. Again. This week. I'm going to need something to knock me out. I'm getting exhausted. I don't even know whether to come or go. I have to always be on guard against triggers. I hate it.
You know what, they can kiss my fucking ass! I'm tired of my head treating me like a piece of shit. I don't deserve this. I am human and am running out of humor and hope in this situation. Everytime I meet someone new, there's the question, do I tell them now that I'll bail on them at some point because of my stupid head?! EVERY SINGLE TIME!! I have bailed on those I live with too many times to count. The people at TOPS are lucky I make it to the meetings. It's a huge effort to go, and I just can't on my own.
Where is God in all of this?
Where is my Comforter?
Why in hell does he forsake me?
I should just die and then the pain would end.
But, that would sadden many people. People who I love. I don't want to hurt anyone. I want to not hurt. I want to not have to struggle for everything. I don't want to be the model patient who is happy to get her doctor's agreement that, "Pain is just weakness leaving the body." Stupid Army Guard doctor... who isn't really stupid. I'm just lashing out.
Money is a struggle. Food is a struggle. Health access is a struggle. Dental care is a joke. Medicaid doesn't cover dental and Medicare doesn't either, at least not for adults.
I HATE BEING DISABLED. I WANT OUT OF HERE.
Wednesday, May 28, 2014
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.
Thursday, May 8, 2014
Ode to a Hexi-Flat*
By Jennifer Cragen, May 2014
Oh so sweet!
The lil' hexi-flat!
You are fleet of knitting,
Double mint thick.
Turkish cast on,
Kitchener bind off.
Born of the mind of an English woman,
Crafted by folks around the world.
Embroidery, cables, and
Your surface disguises.
Luxurious yarns involved, or humble.
To be made, and shared,
Fun for all,
You're made for one and all.
*A hexi-flat is an unstuffed hexipuff from the the beekeeper's quilt pattern on Ravelry by tiny owl knits.
Monday, April 28, 2014
Amy Purdy is inspirational to me for a few reasons. Not only is she dancing after having double amputations on her legs! Talk about wowzers! She is so smooth and beautiful with how she dances.
She also is an inspiration because she also survived bacterial meningitis. She shows me what can be accomplished if one pushes through the pain and develops strength of will. I utilized her example today while at a concert by the Sunshine Band at the Morrison Center in Scarborough, Maine.
The concert was from 5 p.m. to 7 p.m. with bingo and refreshments available too. The various members of the band warmed up and started playing songs. There were two guitarists, one person on a kettle drum, various people on tambourines, and all singing and having tons of fun. Sometimes the audience sang along with the band.
I had a migraine starting before leaving for the concert, but I wanted to attend the event to have some fun family time. I took a migraine abortive pill when we got there and I availed myself of the free iced tea. An half hour later the pain was still great so I took a pain pill. By 6 p.m. I could not go any further, so we left, but we had had an hour of fun and enjoyment of the band and watching others sing and dance and have fun. It was a really good event. My system just didn't agree with my ideas of what I wanted to do, so we lived within the limits of my system.
I've been trying to apply the Serenity Prayer for my pain and living in my limits. If you are unfamiliar with this prayer, here's the text of the prayer.
Give me the serenity to accept what I cannot change,
the courage to change what needs to be changed,
and the wisdom to know the difference.
In your name I pray,
I have peace about today's experience of the concert. I cannot change how my head worked. I took the medications as directed and did what I could. The rest is up to the effectiveness of the medications and nature. Sometimes the migraines last a while, and sometimes they go away with one dose of the medications. There's no rhyme or reason for either reaction of my system. I just live with, along side, this giant.
Anyways, I hope you have peace in your life about what is going on in your life. Where are you in regards to accepting your limitations?