Hi all! I have been sick a lot this month, so I am crazy busy trying to get these prompts done. Sorry if parts of the next few blog posts are garbled. We're in the stretch!
Dec. 22: Travel. How did you travel in 2010? How and/or where would you like to travel this year? -Tara Hunt
In 2010, I travelled almost exclusively by Prius, with the exception of about 200 miles. There was a cab ride back from the airport in January. My friend gave me a lift to my first post-op appointment for my foot. A few van rides and cab rides back and forth between my car dealership and my home. A bike ride to go pick up the Prius from the dealership. And finally, a tow truck, that carried my dead Prius to a Eugene Toyota Dealership (yes, another dealership).
I only travelled a little this year. In January, I made a brief trip back to my hometown, Pittsburgh, to spend time with my parents, sisters, and niece. The next travel of any sort was the Oregon Country Fair, in July. I drove myself up and back in two day increments, spending the night in Yreka on the northern drive, and Corning on the southern one.
In August, after my husband was offered a great job after almost 11 months of unemployment, we took a short trip to Lassen Volcanic National Park. While we had to cut our visit short, the reason for this is going to make me jump to the prompt after the next one. Don't worry, I'll get back to the one I skipped over.
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Dec. 24: Everything's OK. What was the best moment that could? serve as proof that everything is going to be alright [sic]? And how will you incorporate the discovery into the year ahead? -Kate Inglis
If "Fraught" was the word to describe 2010, August could be considered its zenith. We were really starting to stretch our finances to the limit. We were discussing our options: I had a small IRA I could sell, and DH had stocks.
Meanwhile, DH's seizures were becoming stronger, and more frequent. His new medication, one that has been on the market for less than a year, gave him such bad side effects that sometimes he had to crawl to get around the house.
DH and his neurosurgeon, thinking that there were no more job opportunities out there for the moment, set a date for surgery. Brain surgery that is. Surgery that involves cutting a door in his skull, wrapping his brain with a sheet of electrodes, and then purposefully stimulating those electrodes to cause him to have seizures, in the hope of pinpointing the part of his brain where the wiring went wrong, the "focus." At the end of the week, they would remove the sheet, and any brain they felt might be the problem (which they warned us might be golf-ball sized), and of course, put his skull back together. Recovery is 4-6 weeks.
While DH and his neurosurgeon seemed to be handling events with aplomb, I was falling apart. Looking at my mood chart shows I was pretty freaked out. The chances of death were as good as nil, but I still dreaded life without him. I also feared he would come home with a new personality, not the man I married. I still do fear that a bit, and it turns out, he worries about it too.
The surgery date was set late in August. I was buying pajamas, and teaching myself cribbage so we could play it in the hospital during his week stay. About two weeks before the date, DH got a call from a financial services company: They were interested in his experience in UI (User Interface). Suddenly, it became a race. Could DH get an offer before he was admitted to the hospital?
8 days before his scheduled surgery, DH received his offer. He was so excited, he forgot to sign and fax in his contract, he just read it. When we were on our celebratory trip to Lassen, just as we were about to head out for the day, DH got a call from his new job. Where was his contract? We made a dash to Redding, the nearest town of any size, and waited for a fax of another copy of his contract, had him sign it, fax it back in, then wait for confirmation of his new workplace's receipt of the document. It took 3 tries, but at last we did it!
It had seemed like a horrible last minute nightmare when we first realized we had to get the contract in, or he wouldn't be able to start for another few weeks. But when we knew that contract was in their hands, suddenly, DH was officially employed. The contract was signed, the "i"s dotted, and the "t"s crossed. We had made it. We had lived on umemployment that lasted 6 months, and then on our savings alone for another 4 months. We are playing catch up a little with our debt, but as of January 6, all of our credit cards will be back to zero. We have another round of surgeries and health problems to look forward to in 2011, but the outlook is so much rosier, with DH working, my foot nearly healed (meaning I can get back to my work), and really great health insurance.
We are back.
*********************************
Dec. 23: New name. Let's meet again, for the first time. [Cassandra]If you could introduce yourself to strangers by another name for just one day, what would it be, and why? -Becca Wilcott
Hello, my name is Cassandra. I am the archetype of the truth teller who is ignored. For predicting the truth time and time again, in other people's minds, I am a foreteller of doom, rather than a seer of the inevitable consequences of their own actions. I am falsely labeled "mad" when I speak truths they do not want to hear. But when I am truly waxing crazy, my truths become harsher, and bitter. They are just as often true. But it is when I predict bad outcomes that come true that people are the most scared of me.
I'm not psychic. I am a "student" of behavior. I am a studier, a watcher, drawn to details, a collector of patterns. It is true, everyone is different. But what makes them different is just the differing weights of the ingredients they share with Everyone else. There are only so many ingredients out of which to make people, although there are always one or two without raisins, and others with nuts.
I learned about human behavior from an expert, a psychopharmacologist who studied biologically based mental illnesses, AKA, my father. He taught me what was normal, what was not. He showed me the rigid patterns in which people think, the way the very words they use to conceal give them away. I learned there were a limited array of behaviours. Some are so dreadful that it is best not to think about them. But for all of them, it is as the old saw goes, there is nothing new on this Earth.
Sometimes, I scare and anger people with my assessments of their friends and what I foresee as the outcome of their actions. The more often I am correct, the harder they push me away.
My plan for now is to lie low, I refuse to fall victim to any scheming Clytemnestra. Another meaning for the name Cassandra is "defender," and I have always been someone who tries to defend the rights of the most marginalized members of society. Sometimes defending is altruistic, such as helping prisoners make legal appeals,. Other times it just means protecting myself from the consequences of mishaps created by my own peculiar recipe of perspicacity and crazy.
Showing posts with label seizure. Show all posts
Showing posts with label seizure. Show all posts
Monday, December 27, 2010
Tuesday, December 14, 2010
Action: Walkabout #reverb10
December 13 prompt: Action. When it comes to aspirations, it's not about ideas. It's about making ideas happen. What's your next step? -Scott Belsky
"A journey of 1000 miles begins with a single step." -Laozi
I don't have an extensive bucket list. While some things on it are not unusual, other things are going to be a little more difficult to accomplish, especially now that I have a husband to consider. Some things on my bucket list that I have already crossed off are: Going "behind the ropes," and touching Stonehenge; driving across the United States on both the Northern and Southern routes; having sex on a train in Europe (no more detail than that, sorry); and going to Australia, not once, but three times.
Australia is featured in several further wishes on my bucket list. One item is to travel to Australia with DH to show him a place I have come to really love. A really fantastic trip, at least 3 weeks, and a month would be even better. I have been to most of the major cities, except Perth and Hobart. I have seen, felt, touched, smelled, and tasted so many amazing and beautiful things in Australia, to describe it all would require innumerable posts.
Another item I have yet to cross off is living in a foreign country for two years, minimum. But truly, I want to emigrate to a foreign company permanently. And while I do have a back up country (New Zealand), when I say I want to emigrate to another country, what I really mean is I want to settle in Australia, Melbourne ideally.
We started the process for applying for my husband's work visa, once. He had plenty of points. But when we checked out the health requirements, his epilepsy clearly was an insurmountable obstacle to a visa, at least while his seizures are so poorly controlled. They don't want to put the burden of assured multiple hospitalizations onto their health care system.
But if DH's neurosurgery in 2011 were to either stop his seizures entirely, or allow them to be controlled with medication, that obstacle would be gone. And while we pretty much emptied our savings during DH's recent period of unemployment, we agreed to create a special account, and to put a minimum amount into it every month, for the dreamed of fantastic trip to Australia. Our goal is to make it a trip for my 50th birthday, which is just under 3 years away.
But my (not very) secret agenda doesn't stop there. Unless DH were to have a job already lined up, with an offer letter from the company in hand, he has only 5 more years before he is too old to get a visa (45 is the cut-off. Yes I robbed the cradle). As an accompanying spouse my age wouldn't matter. If this trip is as fantabulous as all my other trips to Australia have been, DH will see why I love that country so much, and why I want to live there, and I hope be equally excited at the prospect. It would be a tight schedule, but I have it all planned out. Heh.
To fulfill this fantasy, we would have to start the application process as soon as we got back from our vacation. I know, I know, "unlikely" is probably an optimistic assessment of our going forward with an application. But you never know.
But first, the great vacation. We plan to open an Australia-dedicated savings account in January. DH will have his surgery in 2011, and that will answer the question of whether or not we can ever permanently settle in another country. And even if the surgery isn't as successful as we hope, we will be going to Australia in late 2013, or early 2014. I know it seems far away. Hence my opening quotation by the Chinese philosopher, Laozi (Lao tsu). I am already excited.
So both my medium and long term goals involve Australia. And whatever the end result, the first step to pursuing those items on my bucket list, will be the first deposit into our Australia savings account.
"A journey of 1000 miles begins with a single step." -Laozi
I don't have an extensive bucket list. While some things on it are not unusual, other things are going to be a little more difficult to accomplish, especially now that I have a husband to consider. Some things on my bucket list that I have already crossed off are: Going "behind the ropes," and touching Stonehenge; driving across the United States on both the Northern and Southern routes; having sex on a train in Europe (no more detail than that, sorry); and going to Australia, not once, but three times.
Australia is featured in several further wishes on my bucket list. One item is to travel to Australia with DH to show him a place I have come to really love. A really fantastic trip, at least 3 weeks, and a month would be even better. I have been to most of the major cities, except Perth and Hobart. I have seen, felt, touched, smelled, and tasted so many amazing and beautiful things in Australia, to describe it all would require innumerable posts.
Another item I have yet to cross off is living in a foreign country for two years, minimum. But truly, I want to emigrate to a foreign company permanently. And while I do have a back up country (New Zealand), when I say I want to emigrate to another country, what I really mean is I want to settle in Australia, Melbourne ideally.
We started the process for applying for my husband's work visa, once. He had plenty of points. But when we checked out the health requirements, his epilepsy clearly was an insurmountable obstacle to a visa, at least while his seizures are so poorly controlled. They don't want to put the burden of assured multiple hospitalizations onto their health care system.
But if DH's neurosurgery in 2011 were to either stop his seizures entirely, or allow them to be controlled with medication, that obstacle would be gone. And while we pretty much emptied our savings during DH's recent period of unemployment, we agreed to create a special account, and to put a minimum amount into it every month, for the dreamed of fantastic trip to Australia. Our goal is to make it a trip for my 50th birthday, which is just under 3 years away.
But my (not very) secret agenda doesn't stop there. Unless DH were to have a job already lined up, with an offer letter from the company in hand, he has only 5 more years before he is too old to get a visa (45 is the cut-off. Yes I robbed the cradle). As an accompanying spouse my age wouldn't matter. If this trip is as fantabulous as all my other trips to Australia have been, DH will see why I love that country so much, and why I want to live there, and I hope be equally excited at the prospect. It would be a tight schedule, but I have it all planned out. Heh.
To fulfill this fantasy, we would have to start the application process as soon as we got back from our vacation. I know, I know, "unlikely" is probably an optimistic assessment of our going forward with an application. But you never know.
But first, the great vacation. We plan to open an Australia-dedicated savings account in January. DH will have his surgery in 2011, and that will answer the question of whether or not we can ever permanently settle in another country. And even if the surgery isn't as successful as we hope, we will be going to Australia in late 2013, or early 2014. I know it seems far away. Hence my opening quotation by the Chinese philosopher, Laozi (Lao tsu). I am already excited.
So both my medium and long term goals involve Australia. And whatever the end result, the first step to pursuing those items on my bucket list, will be the first deposit into our Australia savings account.
Friday, December 10, 2010
Headaches and Hippies, #reverb10
December 8, and 9 Prompts:
Beautifully different. Think about what makes you different and what you do that lights people up. Reflect on all the things that make you different- you'll find they're what make you beautiful. -Karen Walrand
Party. What social gathering rocked your socks off in 2010? Describe the people, music, food, drink, clothes, and shenanigans. -Shauna Reid
Sorry to have been MIA. The reason for my absence is essentially what makes me different: I have been a chronic migraineur since I was 13. This has really thrown some huge curve-balls at me during my life, but I rarely am able to increase my slugging percentage.
The last two days I had a full blown migraine, with aura, photo phobia, vomiting, osmophobia, dizziness, and agonizing pain. Having suffered from such a bad headache, ending only a few hours ago, it is hard for me to find anything positive and beautiful in my experiences. In fact, they have been depressing and isolating. One of the quandaries of migraine (or in this case, migraine co morbid with bipolar disorder), is that it is a chronic, painful, but invisible and non-lethal. People think that I exaggerate how often and how severely I suffer from headaches.
Unhappy things that having 2-30 migraines a month for the last 34 years has taught me:
*Life isn't fair
*Pain is incapacitating, yet invisible, putting your claim of genuine disability into question.
*People are very willing to tell you what you are doing wrong when they have no idea what you are going through
But there are useful things I have learned as a result of my condition, too:
*Living a "conventional" 9-5 life life is not the only way to lead a happy life.
*Joy can be found in things as simple as an absence of pain
*Life isn't as linear as the average high school counselor would like you to believe.
In addition, using medical Cannabis to treat pain has exposed me to a new activist community, and a new cause for my lifelong civil rights activism
Overall, being a migraineur has had positive impact on my world view and approach to my life. I am intimately acquainted with the pit falls of having an invisible disability, and have used that knowledge in my activism, especially for IV drug users, and HIV patients. I have developed a hobby interest in neurobiology. DH's seizures provide more fodder for that interest, and the fact that my dad was a widely read psycho-pharmacologist, who did research in neuropsychiatry meant that I was taught about how our brains work by a world-renowned clinical scientist.
The amount of pain I experience for no valid reason, with no end in sight, makes me very empathetic to people who are struggling with their health, regardless of what condition they suffer, or what caused it. I have more insight into chronic illness than the average person, and unfortunately, learned about it at a much younger age than the average person who will develop a chronic disorder. This understanding of the bone-sucking weariness that chronic illness creates in its victims is what lead to my extensive HIV prevention activism, and support of people with HIV. Migraines are not fatal, but I can easily relate to those who feel poorly more often than feeling well.
Another thing I have learned is nothing is more important than keeping myself healthy. The rest of my life will go careening off the rails if I am not careful enough about looking after myself. I have the deeply held belief that if I had not come from a well-off family, and then met DH, who loves me with all my failings and lack of earning power, I would be homeless. So I tend to keep change in my pocket for the mentally ill and homeless people in the City.
One unusual fact about myself is my ability to interact with anyone, from the crack addict sitting on the stoop of my apartment building, to the members of the royal families I went to college with. When I lived in the San Francisco Tenderloin, which is a red light district, I had first name basis relationships with a lot of the homeless people that lived in the UN Plaza.
Being incapacitated by illness most of my adult life taught me the very important fact that life is a crap shoot, shit happen, and to remember other people in my world may also be ducking invisible curve balls.
****
Now I almost skipped the next prompt, because it is becoming a bit repetitive to say that the Oregon Country Fair was the social highlight of my year. But it was a very bad year, with a few peaks, and the OCF was my major excitement for 2010, but for a two day driving trip with DH in August. Those of you who are here for the first time, my December 3rd prompt: Moment blog post was about happenings at the Fair.
I basically describe the Fair to people who want to know as a convergence of dirty hippies, faeries, rainbow people, burning man aficionados, and the like, creating a Counter Culture space-time singularity each July. Music Bands from the well known, to the virtually anonymous play on various stages throughout the weekend, so there is music coming from one or many directions at any time. There is a non-stop drum circle, which was joined briefly by Bob Weir last summer (I realize now by looking at the Wikipedia picture that I actually saw him: I hadn't aged him in my mind since 1990, so I was looking for a much younger man). Puppet shows, acrobats, magic, mehndi booths, hair braiding booths, face painting, ice cream, and children with dread locks. All sorts of delicious food, caters to everyone from the omnivore to the vegan. Even though I fall into the first category, my favorite food item at the Fair is vegan, Blazing Salad's Avocado Dream Boats. I already know what I am having for breakfast on July 8, 2011. I wish I could tell you what is in it, so far I have figured out avocado, hummus, garlic, and hot sauce.
I discovered if you mash those ingredients together, you will have a filling, yummy sandwich spread. Eat it the day you make it, avocados don't keep!
And I haven't even talked about all the cool items sold there. There are great artisans and artists selling a variety of wares.
But there is far more to the fair than what I can list in one post. As I have said, the ambiance is a large percentage of what makes the fair great. Some concrete examples (if you will) of created ambiance: Parades with brass instruments and costumed marchers; the big juggling pavilion in Chela Mela; the singing around the sauna at the Ritz; the Women's lodge in the Community Village, an homage to estrogen; speeches on topics controversial and not; women rolling out rugs and dancing like dervishes to their favorite music, or the drumming circles' rhythms.
I hate to end this post this way, it seems unfinished. But I am hoping to get my Dec 10 prompt done before I go to bed tonight, so I am going to leave this topic for now.
Beautifully different. Think about what makes you different and what you do that lights people up. Reflect on all the things that make you different- you'll find they're what make you beautiful. -Karen Walrand
Party. What social gathering rocked your socks off in 2010? Describe the people, music, food, drink, clothes, and shenanigans. -Shauna Reid
Sorry to have been MIA. The reason for my absence is essentially what makes me different: I have been a chronic migraineur since I was 13. This has really thrown some huge curve-balls at me during my life, but I rarely am able to increase my slugging percentage.
The last two days I had a full blown migraine, with aura, photo phobia, vomiting, osmophobia, dizziness, and agonizing pain. Having suffered from such a bad headache, ending only a few hours ago, it is hard for me to find anything positive and beautiful in my experiences. In fact, they have been depressing and isolating. One of the quandaries of migraine (or in this case, migraine co morbid with bipolar disorder), is that it is a chronic, painful, but invisible and non-lethal. People think that I exaggerate how often and how severely I suffer from headaches.
Unhappy things that having 2-30 migraines a month for the last 34 years has taught me:
*Life isn't fair
*Pain is incapacitating, yet invisible, putting your claim of genuine disability into question.
*People are very willing to tell you what you are doing wrong when they have no idea what you are going through
But there are useful things I have learned as a result of my condition, too:
*Living a "conventional" 9-5 life life is not the only way to lead a happy life.
*Joy can be found in things as simple as an absence of pain
*Life isn't as linear as the average high school counselor would like you to believe.
In addition, using medical Cannabis to treat pain has exposed me to a new activist community, and a new cause for my lifelong civil rights activism
Overall, being a migraineur has had positive impact on my world view and approach to my life. I am intimately acquainted with the pit falls of having an invisible disability, and have used that knowledge in my activism, especially for IV drug users, and HIV patients. I have developed a hobby interest in neurobiology. DH's seizures provide more fodder for that interest, and the fact that my dad was a widely read psycho-pharmacologist, who did research in neuropsychiatry meant that I was taught about how our brains work by a world-renowned clinical scientist.
The amount of pain I experience for no valid reason, with no end in sight, makes me very empathetic to people who are struggling with their health, regardless of what condition they suffer, or what caused it. I have more insight into chronic illness than the average person, and unfortunately, learned about it at a much younger age than the average person who will develop a chronic disorder. This understanding of the bone-sucking weariness that chronic illness creates in its victims is what lead to my extensive HIV prevention activism, and support of people with HIV. Migraines are not fatal, but I can easily relate to those who feel poorly more often than feeling well.
Another thing I have learned is nothing is more important than keeping myself healthy. The rest of my life will go careening off the rails if I am not careful enough about looking after myself. I have the deeply held belief that if I had not come from a well-off family, and then met DH, who loves me with all my failings and lack of earning power, I would be homeless. So I tend to keep change in my pocket for the mentally ill and homeless people in the City.
One unusual fact about myself is my ability to interact with anyone, from the crack addict sitting on the stoop of my apartment building, to the members of the royal families I went to college with. When I lived in the San Francisco Tenderloin, which is a red light district, I had first name basis relationships with a lot of the homeless people that lived in the UN Plaza.
Being incapacitated by illness most of my adult life taught me the very important fact that life is a crap shoot, shit happen, and to remember other people in my world may also be ducking invisible curve balls.
****
Now I almost skipped the next prompt, because it is becoming a bit repetitive to say that the Oregon Country Fair was the social highlight of my year. But it was a very bad year, with a few peaks, and the OCF was my major excitement for 2010, but for a two day driving trip with DH in August. Those of you who are here for the first time, my December 3rd prompt: Moment blog post was about happenings at the Fair.
I basically describe the Fair to people who want to know as a convergence of dirty hippies, faeries, rainbow people, burning man aficionados, and the like, creating a Counter Culture space-time singularity each July. Music Bands from the well known, to the virtually anonymous play on various stages throughout the weekend, so there is music coming from one or many directions at any time. There is a non-stop drum circle, which was joined briefly by Bob Weir last summer (I realize now by looking at the Wikipedia picture that I actually saw him: I hadn't aged him in my mind since 1990, so I was looking for a much younger man). Puppet shows, acrobats, magic, mehndi booths, hair braiding booths, face painting, ice cream, and children with dread locks. All sorts of delicious food, caters to everyone from the omnivore to the vegan. Even though I fall into the first category, my favorite food item at the Fair is vegan, Blazing Salad's Avocado Dream Boats. I already know what I am having for breakfast on July 8, 2011. I wish I could tell you what is in it, so far I have figured out avocado, hummus, garlic, and hot sauce.
I discovered if you mash those ingredients together, you will have a filling, yummy sandwich spread. Eat it the day you make it, avocados don't keep!
And I haven't even talked about all the cool items sold there. There are great artisans and artists selling a variety of wares.
But there is far more to the fair than what I can list in one post. As I have said, the ambiance is a large percentage of what makes the fair great. Some concrete examples (if you will) of created ambiance: Parades with brass instruments and costumed marchers; the big juggling pavilion in Chela Mela; the singing around the sauna at the Ritz; the Women's lodge in the Community Village, an homage to estrogen; speeches on topics controversial and not; women rolling out rugs and dancing like dervishes to their favorite music, or the drumming circles' rhythms.
I hate to end this post this way, it seems unfinished. But I am hoping to get my Dec 10 prompt done before I go to bed tonight, so I am going to leave this topic for now.
Thursday, December 2, 2010
One Word: Fraught to Healing #reverb10
When I first saw this challenge on nakedjen's blog, before I even finished the sentence, the word "Fraught" popped into my mind. It seems that in each decade of my life, there has been one year that is awful, stressful, disastrous. My decennial Annus Horribilis to steal a phrase from Elizabeth II. This appears to be the Annus Horribilus of my 40s.
This is indeed a year that has been fraught with drama and difficulties, as well as illness for my DH and me. In January of 2010, my DH was entering his 3rd month of unemployment, and I had just quit my job working with dogs to have surgery to reconstruct my foot. January 13th, I had the surgery. In early 2011, I will have surgery to remove the metal installed in the first operation.
DH was housebound while I recovered, because of his epilepsy (i.e., I am the sole driver in the family). My recovery was slow, painful, and depressing. Throughout the year, my husband and I suffered from worsening of our respective neurological illnesses. I also had several mood swings, which were particularly "fraught" with concern at the time, as I tend to spend money when my mood changes, and we had no income other than unemployment insurance, and our savings.
Our car broke down and needed major repairs twice within two months. We dedicated a credit card to the care of the car, and have been paying off big chunks every month, but we had always paid off our credit cards each month,
DH had a job in May for 3 weeks that was a disaster, and which he quit. His boss lied to the Unemployment Insurance dept, and said DH had been fired for cause, thus making sure my husband could not collect unemployment benefits. DH was too late getting his personnel records, which demonstrated otherwise, to file an appeal. At that point, we were living on savings alone.
As the summer progressed, DH's seizures became so severe, that we came to the decision that he was going to go ahead with a new surgical procedure that has a 50/50 chance of stopping or improving his seizures. Yes, he is at the point that those odds actually look good. The surgery was scheduled for late August. I began to fall apart, as my bipolar illness makes stress extremely difficult for me to handle.
Literally 6 days before the surgery was scheduled, my DH received an offer that was more than equivalent to his last job: It has better hours, clearer expectations, and better benefits than his previous job. It was such a relief. We spent the next couple of weeks purchasing items and paying bills we had been stalling on until we had an income again. The job was not willing to delay his start date for a few months so that he could have surgery, so he went for it.
So far this fall, he has had two seizures at work, both resulting in hospitalizations. I can't even remember how many hospitalizations he has had this year, and he goes in only for a tiny percentage of his seizures. His neurosurgeon has insisted that DH cannot wait until next fall to have his surgery. He will probably have it in early 2011.
As I have said, my neurological condition, migraine, and my bipolar illness have both been flaring this year, making it very difficult for me to even look for work. One more stone was that we had very expensive dental work done right before DH was hired. Even our French Bulldog, Violet has had to have a root canal.
And as the final insult, Friday, I was bitten by a Black Widow Spider. While not deadly to the average adult, the venom in the bite is a neurotoxin, and provides quite a wallop to the system. Headache, tremor, vomiting, heavy sweating, cramping, dizziness, diarrhea,
We have had at least 40 doctor visits between the two of us this year. Easily. I have had days with multiple appointments several times this year. The very fortunate part of all of this for us was that we were able to afford COBRA payments for our health insurance, a Cadillac Plan that included vision and dental. Still, copays for medications and doctors' visits add up.
But even in this terrible year, there were moments of contentment and joy that auger well for 2011. With both of us in the house 24 hours a day, we could have driven each other off the deep end. Instead, my husband and I became closer than we have ever been. This has been a year that has proofed our marriage. Oddly, we have never been happier.
In July I had the joy of experiencing my second Oregon Country Fair with one of my closest friends, nakedjen. It is hard to really describe the OCF to people, because so much of what makes it wonderful is the ambiance, which cannot be translated into words. But if you consider yourself a dirty hippie, a faerie, or a fan of yummy food, original performers, soul-refreshing encounters, and glitter, you should definitely take a look into the Fair. I can't wait until next July.
But it will come as a surprise to no one, that the word I hope to be using to describe the year of 2011 next December is "Healing." Not only from our many surgeries, but also emotionally from the stress and traumas of this year. At times it seemed the blows would never end. Also, more concretely, financially, as we used up our savings. We are fortunate to have saved so much, we needed every penny.
Healing is also a direction I may be pursuing professionally. I have attended a course at Oaksterdam University and intend to attend more, with an eye towards getting into the medical cannabis industry. As readers of this blog are well aware, I have benefitted from medical cannabis, and have recently become more active in the medical and recreational legalization movements. I don't know what I would do, yet. I liked growing it, but I don't know how I would get a job doing that. I would like to learn to cook with cannabis, and I could see working in a commercial kitchen. I also could see bud tending, which is being familiar with the different properties of each strain of cannabis, so as to help patients choose ones that target their conditions. But I have to choose one of them, I think. The weekend session I went to this past October was really fun, but unfortunately, I had a migraine for a cooking class I was registered for. I plan on taking another weekend session in January. A good start to the new year.
While not related to healing, there are more good things to look forward to: My French Bulldog turns 7 on New Year's Day. I plan to return to the Fair in July. But perhaps most importantly, July 21, 2011 is my DH and my 10th anniversary.
It is funny how one of the years of my life most fraught with disaster, is probably one of the happiest years of my life.
Friday, November 19, 2010
Dain Bramage and Neurosurgery
[Editor's note: I noticed that I often write garbled sentences in these blog posts. This is not just due to poor writing skills, but also because I often post extremely late/early, and wrap up when I feel fatigued enough to sleep. So my proof reading is often shoddy. My new policy will be I may go back into posts to correct grammar or spelling without notification. Content changes will be noted.]
Well, excitement has abounded at the home of DH and crtclms. DH was transported from his job to the ER for the second time in 10 days. This time he didn't hit his head. The prior seizure, he caught the orbital bone of his eye on the corner of his desk on his way down, which gave him an impressive shiner. This time, he went into a fugue, during which he wanders around in a semi-conscious state.
So off to the ER I went. I couldn't find my purse, and during the hunt, I had time to snap a pic. I know how long it takes them to process him, and expected to arrive before he was released, and this turned out to be true:
So, leaf-type chandelier earrings you have seen; dirty hair pulled up; new lavender top with rhinestone embellishment from recent GW hunt; ancient pair of bleach spattered jeans from dog care; they look worse than usual because I was in a hurry, and pulled on dirty jeans. One attempt to hide part of the dirt was the boots. Now, I love these boots, one of my gypsy princess purchases, and really I do understand it is a matter of personal taste, but I saw them and had to buy them. The velvet inset on the top is very close in color to the sweater:
Ah yes, the infamous computer backdrop. Hey, sometimes it is the only way I am not too lazy to take the picture.
Anyway, you can see the velvet, with embroidery, trimmed with a narrow floral band. Tweed laced through, and the seam above the ankle is tweed, too. I bought these about two years ago, and one of the nice things about them is you can wear them with a longer skirt, or under jeans, and they just look like plain brown boots.
And we are back to the Land of Fucked Up Brains: This was not only the second time in 10 days I had to go pick DH up from the ER, it was the 2nd time I had to do so with a migraine. This is not to complain about his timing, but to demonstrate what a fun month we are having generally. In the fall, my frequent migraines actually morph into "Chronic Daily Headache." This is not only painful and incapacitating, it is embarrassing: Headaches are invisible, and how many times in a short period of time would you accept the excuse, "I'm sorry, I have to cancel, I have a headache," when this is the 3rd, 4th, or 5th time in a month I have had to cancel? Only people who know me extremely well can even tell I am in the midst of a headache. Plus, migraines manifest in a lot of "non-headache" ways, which can ruin any social outing, even without actual pain. Today, for instance, I have been "buzzy" because a weather front is coming in, and migraines are often triggered by weather fronts. What does "buzzy" mean? Hard to say, but I can feel things going on in my head. However, even though it was a term I thought I came up with on my own, I found anyone who has migraines or epilepsy knows what I mean when I say "buzzy," and many already use the term to describe their own cranial happenings.
Now, the activity of having to pull myself together to get DH did distract me from the pain a bit, and other than the purse mishap, I got to Stanford pretty quickly. This is one of the first times I had been to Stanford ER in the early afternoon, usually it has been at night. ERs are SO much calmer during the day! DH was awake and alert (he apparently had awoken while being strapped to the gurney). I actually know how to read the monitor he is attached to now, and all of his vitals, including blood oxygen, were excellent.
The nurses and doctors on call were very nice, because they weren't overwhelmed. They kept coming in to tell us what stage they were at with DH's release every few minutes, which has never happened before. Then, the doctor came in, and said DH's neurosurgeon, who is the head of the Stanford Epilepsy Center, wanted to talk to us before we left. Again, a first. But we knew seizures were coming too fast and hard. What we didn't expect was how blunt his Dr. F was. When he walked into the room, the first thing out of his mouth was, "This is not acceptable." He is concerned that DH is having so many seizures it may start causing more brain damage, or that he may really hurt himself hitting his head, which DH does regularly, and we have been lucky that a black eye is the worst thing that has ever come of it.
The question for both of us: What quality of life is acceptable, and what isn't? Are the number of headaches I have by refusing to take a particular medication worth the physical intimacy, not just sexual, but day to day, I share with my husband, worth it? How many seizures, how many drug side effects, will my DH be able to tolerate, and still lead some semblance of a normal life?
Monday's ER visit brought this question into sharp relief for DH. Dr. F informed DH and myself that brain surgery could no longer be postponed until next Fall as we had planned, and that DH's job was now officially secondary to his health. This is a little scary for us, because what some of you do not know is, DH got his current job a few weeks before I started this blog. This had been after being laid off for 10 months (he had had one short job that blew up). It is a fabulous job, that he loves, and we are pretty sure they love him. We don't want him to lose it, and we frankly can't afford it, especially if DH has the surgery, and we don't resume receiving income after his recovery.
But, he has violent seizures about once a week, and less violent ones one or twice a week. He can't drive. He has had seizures on his bike, and on public transportation, so even though he isn't a danger to others, he is actually very likely to get hurt even when not behind the wheel. He has to take almost all his sick and personal days to recover from seizures. He has visible hypoxia of the brain (under-oxygenated parts) on his MRIs.
I had to stop working at my job as a doggie daycare provider because my foot was reconstructed in January, and it only now is beginning to feel like a real foot (it takes about a year to totally heal). So even though my salary was meager, I was at least working. Now, my foot is not strong enough for dog care, and my headaches are preventing any aspirations of any other part-time work. I can only work half-time, because of my migraines, and my mood disorder. Like headaches, bipolar illness is invisible, and like migraine, it limits my life even though it leaves no mark on me physically. In order to keep myself even somewhat healthy, my p-doc in Pittsburgh told me I should only work part time, or at most, a clerical level job if I were going to work full-time. So much for that Ivy League education.
The round-about point is, I am bringing in zero income myself. We might be entirely reliant on an account we were really hoping on not touching. My only "hope" is that he is eligible for disability from work or the State. His contract doesn't say he has to have worked there any amount of time in particular to be eligible for their benefits, so we have our fingers crossed, but are prepared for either possibility. [The old law student in me wanted to abbreviate that to "K," which is a legal shorthand for "contract."] Because he has only been there a few months, we don't know what kind of leave he is eligible for. He would be willing to take an unpaid leave, if it meant there would be a job to go back to. That would wipe out our savings (making Goodwill even more attractive to Ms. Hypo-mania), but we have enough. As one of my friends said to me yesterday, we can get more money, I am thankful we have what we do. DH's health is more important than our savings, any day.
We are upper middle class, even given the loss of income and savings during DH's unemployment. We have had health insurance, either through COBRA, or his new job. I know it isn't exactly the same as those families who have to declare bankruptcy, and I understand that most of our monetary hit did not come from DH's or my conditions per se. But the expense of co-pays for meds and treatment, seeing doctors, having surgery (we both will have had surgery in 2010), ER visits, the lost days to migraines, the compulsive spending that often accompanies my mood changes, it helps to chip away at our income.
Well, excitement has abounded at the home of DH and crtclms. DH was transported from his job to the ER for the second time in 10 days. This time he didn't hit his head. The prior seizure, he caught the orbital bone of his eye on the corner of his desk on his way down, which gave him an impressive shiner. This time, he went into a fugue, during which he wanders around in a semi-conscious state.
So off to the ER I went. I couldn't find my purse, and during the hunt, I had time to snap a pic. I know how long it takes them to process him, and expected to arrive before he was released, and this turned out to be true:
So, leaf-type chandelier earrings you have seen; dirty hair pulled up; new lavender top with rhinestone embellishment from recent GW hunt; ancient pair of bleach spattered jeans from dog care; they look worse than usual because I was in a hurry, and pulled on dirty jeans. One attempt to hide part of the dirt was the boots. Now, I love these boots, one of my gypsy princess purchases, and really I do understand it is a matter of personal taste, but I saw them and had to buy them. The velvet inset on the top is very close in color to the sweater:
Ah yes, the infamous computer backdrop. Hey, sometimes it is the only way I am not too lazy to take the picture.
Anyway, you can see the velvet, with embroidery, trimmed with a narrow floral band. Tweed laced through, and the seam above the ankle is tweed, too. I bought these about two years ago, and one of the nice things about them is you can wear them with a longer skirt, or under jeans, and they just look like plain brown boots.
And we are back to the Land of Fucked Up Brains: This was not only the second time in 10 days I had to go pick DH up from the ER, it was the 2nd time I had to do so with a migraine. This is not to complain about his timing, but to demonstrate what a fun month we are having generally. In the fall, my frequent migraines actually morph into "Chronic Daily Headache." This is not only painful and incapacitating, it is embarrassing: Headaches are invisible, and how many times in a short period of time would you accept the excuse, "I'm sorry, I have to cancel, I have a headache," when this is the 3rd, 4th, or 5th time in a month I have had to cancel? Only people who know me extremely well can even tell I am in the midst of a headache. Plus, migraines manifest in a lot of "non-headache" ways, which can ruin any social outing, even without actual pain. Today, for instance, I have been "buzzy" because a weather front is coming in, and migraines are often triggered by weather fronts. What does "buzzy" mean? Hard to say, but I can feel things going on in my head. However, even though it was a term I thought I came up with on my own, I found anyone who has migraines or epilepsy knows what I mean when I say "buzzy," and many already use the term to describe their own cranial happenings.
It is also humiliating as to how it affects my marriage. "Not tonight, I have a headache" isn't a "line" in my home, it is a pretty much daily occurrence. While sexual activity as a general rule is helpful to headache patients, that is only the case when they are not in the throws of an actual attack. It is upsetting and guilt inducing to feel like you are not up to being an equal partner in intimate aspects of your marriage. I actually quit a medication that was working somewhat at controlling my head, because it totally destroyed my libido, to the extent I didn't even like to be touched. My neurologist agreed with me my marriage was more important than the medication.
DH has also had horrible, life-altering side-effects from medication. A lot of people don't realize that when you have a chronic illness, you are not only dealing with the illness itself, but also with the sometimes severe and dangerous side-effects of prescription pharmaceuticals. This is why I use Cannabis, and why I feel so strongly about protecting its medical use, and legalization in general.
Now, the activity of having to pull myself together to get DH did distract me from the pain a bit, and other than the purse mishap, I got to Stanford pretty quickly. This is one of the first times I had been to Stanford ER in the early afternoon, usually it has been at night. ERs are SO much calmer during the day! DH was awake and alert (he apparently had awoken while being strapped to the gurney). I actually know how to read the monitor he is attached to now, and all of his vitals, including blood oxygen, were excellent.
The nurses and doctors on call were very nice, because they weren't overwhelmed. They kept coming in to tell us what stage they were at with DH's release every few minutes, which has never happened before. Then, the doctor came in, and said DH's neurosurgeon, who is the head of the Stanford Epilepsy Center, wanted to talk to us before we left. Again, a first. But we knew seizures were coming too fast and hard. What we didn't expect was how blunt his Dr. F was. When he walked into the room, the first thing out of his mouth was, "This is not acceptable." He is concerned that DH is having so many seizures it may start causing more brain damage, or that he may really hurt himself hitting his head, which DH does regularly, and we have been lucky that a black eye is the worst thing that has ever come of it.
The question for both of us: What quality of life is acceptable, and what isn't? Are the number of headaches I have by refusing to take a particular medication worth the physical intimacy, not just sexual, but day to day, I share with my husband, worth it? How many seizures, how many drug side effects, will my DH be able to tolerate, and still lead some semblance of a normal life?
Monday's ER visit brought this question into sharp relief for DH. Dr. F informed DH and myself that brain surgery could no longer be postponed until next Fall as we had planned, and that DH's job was now officially secondary to his health. This is a little scary for us, because what some of you do not know is, DH got his current job a few weeks before I started this blog. This had been after being laid off for 10 months (he had had one short job that blew up). It is a fabulous job, that he loves, and we are pretty sure they love him. We don't want him to lose it, and we frankly can't afford it, especially if DH has the surgery, and we don't resume receiving income after his recovery.
But, he has violent seizures about once a week, and less violent ones one or twice a week. He can't drive. He has had seizures on his bike, and on public transportation, so even though he isn't a danger to others, he is actually very likely to get hurt even when not behind the wheel. He has to take almost all his sick and personal days to recover from seizures. He has visible hypoxia of the brain (under-oxygenated parts) on his MRIs.
I had to stop working at my job as a doggie daycare provider because my foot was reconstructed in January, and it only now is beginning to feel like a real foot (it takes about a year to totally heal). So even though my salary was meager, I was at least working. Now, my foot is not strong enough for dog care, and my headaches are preventing any aspirations of any other part-time work. I can only work half-time, because of my migraines, and my mood disorder. Like headaches, bipolar illness is invisible, and like migraine, it limits my life even though it leaves no mark on me physically. In order to keep myself even somewhat healthy, my p-doc in Pittsburgh told me I should only work part time, or at most, a clerical level job if I were going to work full-time. So much for that Ivy League education.
The round-about point is, I am bringing in zero income myself. We might be entirely reliant on an account we were really hoping on not touching. My only "hope" is that he is eligible for disability from work or the State. His contract doesn't say he has to have worked there any amount of time in particular to be eligible for their benefits, so we have our fingers crossed, but are prepared for either possibility. [The old law student in me wanted to abbreviate that to "K," which is a legal shorthand for "contract."] Because he has only been there a few months, we don't know what kind of leave he is eligible for. He would be willing to take an unpaid leave, if it meant there would be a job to go back to. That would wipe out our savings (making Goodwill even more attractive to Ms. Hypo-mania), but we have enough. As one of my friends said to me yesterday, we can get more money, I am thankful we have what we do. DH's health is more important than our savings, any day.
We are upper middle class, even given the loss of income and savings during DH's unemployment. We have had health insurance, either through COBRA, or his new job. I know it isn't exactly the same as those families who have to declare bankruptcy, and I understand that most of our monetary hit did not come from DH's or my conditions per se. But the expense of co-pays for meds and treatment, seeing doctors, having surgery (we both will have had surgery in 2010), ER visits, the lost days to migraines, the compulsive spending that often accompanies my mood changes, it helps to chip away at our income.
So that can also be added to the daily cost, in money, body, and spirit, of chronic illness.
Now, I do have purchases and outfits to show you. And tomorrow is a fundraiser for a Food bank, where I intend to do some Hannukah shopping, and I will come home with other things to show you. But even the little "fashion" I did have in this post didn't seem to fit the tenor of the post, so I am saving it for this weekend. As Eddie Izzard would say, "Ciaooooo!"
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