Monday, June 27, 2016

Chronic Illness patients on Assisted Suicide

I posted the below in a chronic illness group in which I'm a member, and any comments I share below, I do with the person's permission.

 I was watching the news a couple weeks ago when it was announce that CA was going to decriminalize assisted suicide, and something the anchor said struck me. "A difficult decision." No - it's not. Not for the individuals for whom this is an issue to begin with. People with terminal health problems are either the type that will fight to the absolute bitter end of a painful life, determined to do everything and then-some. Other individuals have looked at their current situation, and the forecasted future, and see no point in putting themselves, and the people close to them, through the slow and agonizing (and often terribly expensive) inevitable. Having to watch the person you always have been slowly and inevitably slip away can be incredibly painful, almost more than the terminal illness itself.
  The public, who can only try to imagine themselves in such a situation may indeed think decided the right to die a difficult thing, but they cannot even begin to truly grasp the most fundamental part of the situation, it is an inevitable end. It seems to me, those who want the right to die on their own terms have so little of their own life actually still under their own control, that being able to have one thing left that can actually be theirs. If the inevitable suffering and wasting from their illness can be avoided, being given the opportunity to do so seems more humane than cruel.
The comments and ensuing threads were really quite something I don't know how many of the general public are aware of in same way. 

J.E.     What really frosts my cookies is when someone has a documented, notarized DNR order in place--and the family decides to fight it, "because they weren't in their right mind when they signed it, this isn't what they really wanted, they’re a fighter, they're too young to die," etc ad nausea. It's even worse when the doctor/hospital agrees with the family! It's completely unfair to the person who's actually suffering, to force them to remain alive because those around them "aren't ready" to "let" them die. 
Similarly, there were a few members who commented that they were already forming back-up plans, or people they felt they could trust on a deeper level to step in and stand up for their wishes or DNRs as they simply didn't feel that immediate family could truly be relied upon to honor their stated wishes, especially in emotional situations;

A.P.     I was very much in favor of legalizing assisted suicide *before* I saw my father die slowly and agonizingly from brain cancer.   Now I believe that death with dignity should be a fundamental human right.    If someone wants to live for as long as possible, that should be their right, as well -- but individuals should be allowed to make decisions about what level of quality of life is acceptable to them      .....    What I want to avoid is eugenics -- especially family members, hospitals, and insurers trying to influence decisions for terminal patients -- but I think that patients themselves should have their advance directives respected.
One member admitted that they have always wanted to choose the time and place of their own death, as a simple matter of the same right to death being just as intrinsically deserved as the right to life. Another told how they had a friend who had had an assisted suicide. There was no recrimination or apology, just a statement of fact.

N.H.     I joined the death with dignity [cause] for this reason. I can't in good consciousness stand by and watch others with my disease suffer when they could choose when to end their life with dignity. I want that choice not only for me but for my children, for whatever partner I might have at that time. My ex never agreed with me. We fought over it. I do believe in the right to no longer fight, to choose when and how to end a life. It's simple. I want that choice, any one who has a chronic or terminal illness should have it.   
A.P.  Very much agreed -- I think that counseling is a must. But the decision, in the end, needs to be up to the individual. 

Overall, I found the conversations that stemmed from my post interesting, but also rather what I had anticipated would be the general response. Chronic illness patients don't have the same hardship seeing a desire to control their death, as they often have much less control in their daily lives. This does in NO WAY mean that we are suicidal, please do not misconstrue my post as such. 

The general public, with its inability to even truly intellectually, much less emotionally understand the idea of their health never going to be able to improve, or to be able to "get well", don't have a similar basis of understanding about some choices that chronic illness patients can. It's simply a fact; 

How patients deal with and accommodate their own very definite reality should not be held to a moral standard set by the ignorant. 

Wednesday, May 4, 2016

Thankfully Embarrassing

Yesterday was one of those times when I was able to step back and really appreciate things. It wasn't necessarily the standard way to start that train of thought, but it was very honestly felt, and was also something that I'd spent many years trying to learn how to feel.

After breakfast, Mom and I were walking our 15 month old goldendoodle, Gilbert, around the block before the day really started. Gilbert's astonishingly large for his breed, at just under 100 lbs, but he's the biggest teddy bear ever know to dogdom. Well, We were about 3/4 of the way around the block when he decided to take off back in the direction we'd just been, I think to go check out and grab a pine cone. Unfortunately, goldendoodles don't come with turn signals, and he can move quickly when he wants. He yanked me back around, with my arm flying in the lead, and I ended up just shy of falling on the ground. Color me less than impressed. Having been yanked hard, 180* from where I'd been holding the leash, my shoulder and arm were very...aware, I guess would be a good word(?) and the entire right side of my body felt slightly numb from shock.

Mom immediately had me check the range of motion of my shoulder, to make sure that I hadn't done any damage to the joint, and, since I could move it even if it hurt like all bajeezis, we continued the walk home, this time with her holding the leash. Once we got home, I did ice the arm for 20 minutes, but then not completely keep it immobile afterwards, as I didn't want the arm to freeze and end up making it worse in the long run.

Well -  fast forward a little over an hour later, and I was still really hurting in my upper arm, just below the bicep, actually, and then down into my lower arm it was feeling tingly, and then my fingers were cold and numbish. Not a great way to be feeling, especially since I had caved and taken two ibuprofen despite the fact that I get rebounds from it. I ended up calling the nurse hotline, and was recommended, after trying to answer the questions, to go to Emergency, rather than UC, because they were concerned that there might have been something vascular that was the problem. Vascular is something not to be messed around with, I agree.

I hit the ER at the perfect time, it seemed, as I was able to walk right in to triage, with about six people coming in after me in the following 10 minutes while I was being processed.

This was the part where things started to get somewhat embarrassing for me. 

Every time I talked to a new tech or nurse, and finally the attending himself, I was asked the completely commonplace question of what number I would rate my pain at. I hate this question, and felt completely ridiculous. The only time I've ever really been to the ER was when my migraines had gotten so bad that I was either losing consciousness, unable to stop crying, or else some other kind of horrific pain level. And I'd still never call a 10, because I knew it could be worse.  And now I was in the same place with a pain I'd probably have given a 7 at the absolute highest when they were pressing and stabbing my arm to look for injuries.

Wimpy me, right?
Only, no - and I really kept a grip on that.

Chronic pain is a completely different type of sensation than an acute injury. One I've had nigh on 15 years to get used to, at some level. The other showed up two hours prior. Very different, and I need t remember to treat them differently. Acute pain is something that my body's showing as a way to let my brain know that something actually is going wrong and I need to pay attention. When an acute injury happens, it's not something to automatically just shrug and struggle to ignore because that is what I'm supposed top do with the chronic pain. Acute pain needs to be tended to.

Acute pain is allowed painkillers too. And that's something.

I haven't had any painkillers for my migraines in around three years, I think. Before that it was only very occasionally that I would allow myself to take what my neurologist had given me, because I knew that I have a tendency to habituate to medications. I couldn't afford to lose the effectiveness of that Rx.

There's also another reason
Many years ago, back in middle school when the migraines were first settling into the status migrainous, I was, it turns out, abusing Excedrin Migraine at school, trying to deal with the pain and keep going at school. I always stuck to what the bottle said as the doses, yes, but I would be taking the max doses every day, sometimes for several weeks at a time, trying to be able to function and go to school when I could. When my neurologist found out exactly how frequently I was taking the Excedrin, I almost thought he'd blow a blood vessel.

I was informed in no uncertain terms that taking that much pain medication was unacceptable, and was actually doing my body more harm than good. I didn't want to believe him, of course, but Dr B explained that my body was now associating the ingredients in the pills with pain, and would actually go and create more whenever it saw those chemicals.
Rebound headaches.
It took a phenomenal about of willpower and tears to stop taking the Excedrin, and my attendance did plummet (although my grades didn't) but I eventually stopped getting that type of headache so frequently.

Now I practically never take any OTC painkiller. Aspirin, ibuprofen, and acetaminophen all induce rebounds, and I use naproxen very sparingly for physical pain, as I know it could easily lose effectiveness.

But cutting back to yesterday and my arm - The attending MD decided that I had just strained the nerves in my arm, as well as the muscles when Gilbert yanked me so suddenly, but that there was no lasting actual damage. He recommended icing it and taking 600 mg of ibuprofen as needed to help with the pain and any swelling that might be happening.

Ibuprofen  -  Great.

Well, I did take the ibuprofen, as instructed. I'm a good little patient, and do as my doctors say. But today, yes, I'm still dealing with the rebound headache that I started about noon yesterday when I took the first full 600mg. It's incredibly frustrating, in a way, my having/getting to deal with the headache even though I was taking the painkiller for something completely unrelated, something acute. Accepting pain as an exchange for relief of pain might not make the most sense to some people, but I guess it's logical for me. I know that the rebound headache is just that, and I'd rather wait it out than end up creating a worse situation with my arm.

It's interesting, this morning. The headache woke me up around 4:15 maybe, although I fought to fall asleep for about 20 minutes. I'm not used to the rebound headache feeling anymore. The pain feels different, presents and focuses differently than my normal migraine, and frankly? I'm out of practice. Each different type of headache or migraine that I get has a different way to tolerate, and I haven't had to do so with a rebound in ages.

I'm proud of that.
I'm also proud of the fact that I allowed myself to feel the acute pain in my arm. There was a time when I would have refused, or even maybe been unable, I'm not sure, to acknowledge that something was wrong. I didn't feel my body, I existed only in my head.
So feeling physical, acute pain in my body, where it was a simple injury, being able to pay attention, give it a pain number of its own, and get it checked out when I was concerned with what I was feeling, and then also being able to be caught out of practice with my painkiller induced rebound headaches are all things I'm glad I had happen.

I'm successfully and more attentively living in my body, no matter what the migraines be.

Sunday, April 24, 2016

shaving for the St Baldrick's Foundation

On May 7th, I will be shaving my head to raise money for the St Baldrick’s Foundation; an organization which helps raise money to combat pediatric cancer. I was the target age that St Baldrick's works with when a diagnosis of pediatric cancer was a legitimate concern for me. 

As you know, I’ve suffered from severe migraines all my life. I was in 5th grade when I first went to a pediatric neurologist because my usual doctor was afraid that I was developing a brain tumor or other serious neurological condition. I didn't know how serious the concern was at the time. Mom, however, still talks about how as we were walking into the hospital, she saw a kid, about my age, coming towards us with their head bald from chemo. That sucker punched her, knowing that child could soon be me. 

I was never found to have a cancer, and after I was in my late teens, my doctors stopped screening as frequently. 

This August will mark 15 years of my having the same intractable migraine, but it isn’t cancer. When I shave my head on May 7, my hair will grow back, and I'll still have migraine. However, I hope this will not only be a way to show acknowledgment for my own migraines, but more importantly, recognition of how very different, and difficult, life must be for the kids who are dealing with what I avoided. 

I’m asking you help by sponsoring me, so that kids who are dealing with pediatric cancer can continue to get the support St Baldrick’s brings. 

Friday, April 22, 2016

showing true

I haven't posted in ages because, even as my migraines have been become slightly less 100% front and center in my mind, I've started having episodes of confusion. My brain will stop wanting to be able to make the connections, or else I can't find the words for what I can be thinking inside my head. I've always thought in meaning, not words, sounds, or reading type methods, so I can't rely on that much to help. It's incredibly frustrating that I can get into a great discussion with somebody, and then even halfway through my own sentence, I'll completely lose the thread. It's just... gone ...

For that reason, I'e been finding it incredibly difficult, frustrating, and frankly embarrassing to try and edit the novel I wrote in 'o9 or write journal/blog entries. I didn't want to have the break off of thought be so obvious and have whatever I was trying to express cut short. I always prided myself on the quality of my writing, especially back in school when there was more of a continued audience for it.

However, it was pointed out to me yesterday that here, this blog, I wanted to show and discuss migraines as they affected my life and just show a snapshot of what it is like for me. And the abrupt loss of train of thought actually is a very important aspect of what has been occurring recently. I don't need to try and gloss over or not let that show as much as any other part of my life.

Therefore, in future entries, which I am going to try and be posting much more frequently, there may be times when, mid-sentence, the post will end. That's because that's what was written, and that's all that needs to be posted. I don't want to hide my confusional migraines anymore, because I'm aware that I am not the only one going through situations like this. While mine might be a unique combination, letting it be seen and read by other migraine sufferers who are dealing with the same, or similar problems, don't need to think that they're having an abnormal, one-off experience.

I live by the phrase I found in a book years ago; Quantum in me fuit, which roughly translates to "I did the best I could."
That's what I want to be able to share - my best, whatever that may end up looking like at that moment.

Wednesday, July 24, 2013

Guest Molly Clarke - "Migraine and SSD"

Molly Clarke is the Social Media Coordinator for Social Security Disability Help and contributes regularly to the Social Security Disability Help blog.

What You Should Know about Applying for SSDI or SSI with Migraines
If you suffer from migraines, you already know that they can be debilitating and often result in significant time lost at work. However, you may still be wondering whether or not your condition is severe enough to be considered a disability and therefore qualify you for Social Security Disability (SSD) benefits.
If you have questions regarding migraines and disability benefits, look no further. The following article will provide you with a general overview of the disability benefit programs and will give you the information you need to begin the SSD application process.
SSD benefits are governed and distributed by the Social Security Administration (SSA). The SSA currently operates two main programs that provide benefits to individuals who have disabilities. These programs are Social Security Disability Insurance and Supplemental Security Income (SSDI and SSI, respectively).
SSDI provides financial assistance to disabled workers and their families. To qualify for SSDI, applicants are required to have earned an income and paid taxes into the system for a specific amount of time.  SSI is a needs based program that provides benefits to elderly and disabled individuals who earn very little income. To qualify for SSI, applicants cannot exceed very strict financial limitations.  In some cases, individuals may be able to qualify for benefits from both programs.
Learn more about the technical eligibility requirements for SSDI, here and SSI, here.
Definition of Disability
Although there are very specific medical requirements that individuals must meet in order to qualify for benefits from either program, there is one basic requirement that all applicants are required to meet—and that is matching the SSA’s definition of disability. The SSA considers a person disabled if they meet the following criteria:
  • You cannot do any type of work.
  • Your disability has lasted or is expected to last at least one year or result in death.
Migraines and Social Security Disability Benefits
Typically, the SSA uses a guidebook of disabling conditions—called the blue book—to determine whether or not a person qualifies for disability benefits. Unfortunately, there is no listing in the blue book for chronic migraines. Although this can make it more difficult to qualify for benefits, it is certainly not impossible.
Individuals that get migraines as a result of another medical condition may be able to qualify under that condition instead. You can access a list of all disabling conditions, here.
If you do not meet or match the requirements of another listing, it is still possible to qualify. Rather than proving that you meet specific medical criteria, you will have to prove that your migraines regularly prevent you from performing work activities.  This may include concentrating, following directions, walking, standing, lifting, or interacting with others. The SSA will also evaluate the frequency and duration of your headaches to determine how much time away from work your condition may cause. It is important that you provide evidence of any other conditions you may also have. This is due to the fact that the SSA will evaluate the combined effects of all conditions that you have, rather than just the effects of your main condition.
Because your condition is not listed in the SSA’s blue book, you will have to provide the SSA with extensive medical documentation to support your claim. This documentation may include records of the following:
  • Your diagnosis.
  • Any hospitalizations or medical appointments.
  • Any treatments you’ve received and your response to them.
  • Any lab tests or diagnostic imaging.
  • Written statements from doctors and former employers that explain how your symptoms affect your ability to work.
Social Security Disability Application Process
Once you are ready to begin the SSD application process, you can do so online or in person at your local Social Security office. You should have your medical evidence as well as employment and financial records readily available.
It is important that you realize how difficult and complicated the application process may be. In fact, many initial SSD applications are denied. If your initial claim is denied, it is important that you do not give up. You are allowed to appeal this decision and continue to seek the benefits you need to survive.
For more information about the Social Security Disability application process, visit Social Security Disability Help or contact Molly Clarke at

Sunday, June 30, 2013

2001: A Space Odyssey: "I am putting myself to the fullest possible use, which is all I think that any conscious entity can ever hope to do.": (Day 30)

Hi there,

   It's ok to cry.

    I know that this pain is really scary, and that your head really hurts, but it's ok to cry. Nobody's going to see you here, and even if they do, crying doesn't mean that you're a fraidy-cat or a baby.

   I'm not saying that you should cry all the time. That doesn't do any good. But when something like this happens, when it feels like gnomes are jumping up and down in your brain on pointy pogo sticks, or you're wearing a hat that's too tight and you're scared, it's OK to cry.

   Crying is something that shows.  People don't know anything is wrong unless you tell them. They can't see your headache. Sometimes you can talk to them and tell them your head hurts, but sometimes, I know, your head hurts so much, talking doesn't make sense. It's OK to cry then. Crying is a form of talking when you can't talk with words.  It's your body talking.

  You don't have to pretend your head doesn't hurt.  That pain is real.  It is.  Real things matter.

  I know that in the book  "The Twelfth Easter Bunny", the child who never cried got the most beautiful egg.  But you want people to get to know YOU.  You're not some kid in a story book.  This is real.  This isn't make believe.  It's OK to play make believe with your friends when you don't hurt, but then you put away the dress-ups and the toys and you are you again.  And right now, you hurt.

  And right now, it's OK to cry.

Gretchen, Who's Been There

Saturday, June 29, 2013

Misfits: (Day 29)

   The prompt today is free form, with no guided suggestions except for one: that if I suffer from Chronic Migraine to make sure to incorporate it in my blog today. So I hereby incorporate Chronic Migraine in today's blog.
   However, I don't think that it's fair for me to just incorporate Chronic Migraine, as that's not the only kind of migraine that I deal with that makes me stand out from the crowd.

Chronic Migraine -I'm a Misfit

     A purple ribbon symbolizes migraine awareness. The red stripe symbolizes the chronic status. In order to be diagnosed with chronic migraine, a sufferer needs to suffer from migraine at least 15 days a month. So over half the month. This is to differentiate from episodic migraines, where a person will "only" have migraines either a few days a month or less often.
    But remember, I don't have regular chronic migraine, I have Status Migranous. This simply means that their migraine has lasted for more than 72 hours straight. So a person who has a migraine for three days and then has it break on Day Four, has suffered status migranous.
   I guess you could say that I'm an over achiever in the chronic migraine/status migranous spectrum. That whole - I haven't had a day without a migraine for over 11 years - bit, since early fall of '01 when I got an eight week debilitating migraine that just decided to stick around pretty put paid on me fitting in with most of the "Normal" migraine community. But that's ok, I was already a misfit.

Pediatric Migraine 
- The Beginning of Being a Misfit -

    The pink and blue stripes symbolize the boys and girls who suffer from chronic migraine or chronic daily headache. By age 15, one in ten children will have suffered a migraine. I find this a horrible statistic, as it goes unrecognized. And yes, sure, some could argue that it's only 10% of school aged children have or will suffer a migraine, but I think that it needs to be paid more attention to in general. 
    I know that I've had migraines (or at least headaches) for as long as I can remember. I remember hiding under the stairs in preschool, sobbing because my head hurt and I didn't want to have to go outside and play with my friends. I think I was maybe 3 or 4? I just grew up with the migraines. I didn't like them, they hurt, but, as a really little kid, I thought that it was just a part of who I was. And so it was. The migraines grew with me, getting more severe with age. 
    I started to really stick out from my peers in mid-school when my 2 week migraine runs turned into 4-6 week migraines, and then, finally, the infamous 8 week migraine happened and all bets were off.

Chronic Migraine & Depression
 - How I Stick Out Even More -

    The purple ribbon with the black half-stripe represents depression. Chronic migraine and depression are often found together as they're both have roots in chemical imbalances of various chemicals and signals in the brain. That's why antidepressants can effect migraines and migraine medications effect depression. 
    When I was forced out of school in the spring semester of my junior year because of my migraines, I went into to a depressive episode that lasted for close to two years and was so severe that I started to shut down my organ functions and was sleeping up to 20 hours out of 24. It was a terrible time, and during that time I just shoved everything in a "deal with it" pile, rolled over, and went back to sleep. Sleep was my only vaguely effective painkiller. But it was causing its own problems like the beginning hints of body shutdown. 
    Fortunately for my sake, I had a wonderful support system that eventually took a metaphorical cattle prod to me and made me wake up and get better. And by "get better", I obviously don't mean that I got cured of my status migranous. What it means is it made me wake up and face reality in a way that many don't ever have to.
    I've now been going to both a psychiatrist and the cattle prod holding body-centered psychotherapist for so long that I've basically lost track of the years; I think 6 years? And when I really decided to take advantage of the opportunity I was given, I learned to look at my migraines, and my life in general, in a way I guess most people never get. 
    I've been made aware of just how differently I view things like the pain of my chronic migraine through this month's prompts when I've been surprised or taken aback by what I perceive as negativity about the migraines. I've come to accept the pain as a part of Life. I don't have to like it, I just have to accept that it is there, only then can I move on to finding the positive. I'm almost afraid that people reading these entries will think that I've given into the pain, or else I'm faking how badly I hurt because I don't have it effect my life the way that it seems to most chronic migraine suffers. 

Chronic Migraine Trifecta
- The Last Way I am a Misfit-

    So I have now given three ways, Chronic, Pediatric, and Depression, in which I am a misfit from most of the migraine community, making me stick out like a sore thumb in most online communities. I'm learning how to blend the edges of what I think with what is appropriate for the situation. And yet again, I am a misfit. For while I may be a perhaps extreme case of each of the examples given, there is a badge for all three ribbons to be displayed at once already made up. So I am a misfit by not being the total misfit that I first appear.

Quantum in me fuit,

Friday, June 28, 2013

Saturday Night Live: (Day 28)

How does humor help you cope?

   Humor is a huge help for me. Life's a giant cosmic joke, after all, and, as the saying goes in my family, "Laugh; it drowns out the screaming."

   Keeping a good sense of humor is key to dealing with things like Migraines that can be viewed negatively. I'm reminded of the part of Harry Potter and the Prisoner of Azkaban where the class is learning to face the Boggarts, which take the form of whatever the witch or wizard facing it fears most. The spell to defeating the boggart is to make it ridiculous by making it appear differently. Laughter is it's enemy.
   Pain, I've found, is much the same. First, you have to realize I don't actively laugh at my migraines. Not usually at any rate. But finding humor in the situation, or at least minimizing the negativity is huge.

   Also, watching comedy of a certain caliber; that which entertains, but isn't obvious, can effectively distract me from focusing on the level of pain I am, and rather can immerse myself in the plot. Reading books with a similar level of entertainment value can do the same thing.
   I need a happy ending. I don't do well with tragedies, especially when I'm in a lot of pain. But books that have triumphs over tribulations can be very pleasing and uplifting. But comedies are the best.

Quantum in me fuit,

Thursday, June 27, 2013

Anger Management: Goosefrabba: (Day 27)

How do you constructively deal with the anger and resentment that arises as a result of living with Migraine/Headache Disorder?

   Eep! This is a very agitating prompt. I even originally censored it in my mind, changing "anger and resentment" to "frustration", while typing it up, and I have an excellent memory for words. I just find that is is a sad commentary on the mindset of most sufferers.

   Sure, occasionally I'll pitch a fit when something goes to heck because of my migraines, but that's frustration, not anger, and certainly not resentment. What am I to resent? The migraines are a part of who and what I am. To resent them would be to resent myself, and yes, I've tried. It's a singularly unhealthy mindset, and I've spent years in therapy trying to undo the damage that approximately 14 months did to me back in 'o5-'o6.

  I think if we (the Migraine Community) focused on more positive phrasing, or at least less negative seeming, maybe we as a whole could come to accept the pain a bit more, and then be able to move forward with our lives.

Quantum in me fuit,

Wednesday, June 26, 2013

Men in Black: Migraine Neuralizer (Day 26)

How do you cope with the way Migraine/Headache Disorders can impact your memory?

   Irony; oh how you sting! Allow me to explain:

   No sooner had I typed the prompt and began to think about how to answer it, but my phone rang. And, I learned, somehow back on May 25, I didn't complete a PayPal order the way that I thought that I had, and thus the product never arrived. What's even more slightly embarrassing is when I had been asked about getting the package (I supposedly had ordered three that day) I said I'd gotten it. I counted one box twice.
   Whoops. And now I'm suppose to be answering how I deal with a memory that's such that things like this can easily happen.

   I laugh. I mean, sure I'm embarrassed right now, because I really was proud of how well I was doing at juggling two things at once, and apparently I'm not doing as well as I thought. But there's no point in getting angry, because there's nothing that I can do about it, and it's not my "fault". I know that I had a migraine spike the day that I was doing the ordering, and now here's the fallout. It's just something I have to deal with.
   I've corrected the forgotten payment, and everything's as good as it can be. It'll just be a month late, that's all.

*shakes head*

   What a perfectly timed snafu.

Quantum in me fuit,