Sunday, December 11, 2016

Different Schools of Thought

I'm feeling rather torn right now, as to what is the proper way of taking care of myself. It's frustrating, because I really do try to do whatever will end up being best for me in the long term, even if it can be rather hard or difficult to work with in the current time. I don't have the luxury of only thinking about how I feel in the present. I have to always keep in mind that I'm only 29, and there's a lot of longer-term effects and, in a way, damages that I have to be more concered about. That's why I'm so conflicted at the moment. I'm dealing with two very different schools of thought on how to best deal with bad days like this one.

Back in 2014, I went to the Cleveland Clinic for three weeks of an intensive outpatient migraine treatment program. And intensive it really was. One of the biggest points of how to cope with the migraines long-term was that showing "pain behavior" was one of the worst things you could do. That meant things like wearing sunglasses inside because of photosensitivity, lying down during the day, rubbing your head a lot, etc. were all things that should be avoided. There were two reasons for this. The first was that so we wouldn't present as patients to general society. The other, and more important reason was that the body and brain follow and learn from each other. If we acted as though we were in pain, then our bodies would be thinking pain, and it might well end up making our conditions worse long term. Instead, the idea was to train our bodies to continue functioning at an almost normal level even if our pain was excruciating.


Later in 2014, I began developing really severe episodes of vertigo that were landing me flat on my back. The choice was I either lay down voluntarily, or gravity and my lack of any inner balance would do so for me. I got rather colorful arms and legs for a while while I learned it really was better to get flat on my own.
I saw my neurologist about the vertigo, and he agreed with me that one of the biggest concerns I had/have is that my brain easily rewires itself to think abnormal situations are in fact the norm. That's how I ended up with intractable migraine; my brain now thinks that it's normal and right to have migraine pain, and will go and create it if there is none being felt.
Our mutual concern was that I'd become rewired for vertigo to become the constant instead of the aberation. Since I was only 27 at the time, that was a very serious concern. It may happen eventually, we both know that, but preventing the new problem from being permenant any sooner than absolutely necessary, my neuro gave me a low-dose sedatiev to take whenever the vertigo hit. The idea is that if I sedate my brain when the vertigo does start to take over, there won't be as much awareness of what is happening. Basically I'm pausing my brain, or at least turning way down the volume the vertigo would broadcast to my brain.

But therein lies my problem. I can't continue to act completely normally with the migraine if I have to sedate or shut down my brain's ability to process reality to deal with the vertigo.

now what?

Friday, December 9, 2016

10 Minutes in

I have 10 minutes until I need to go and check in for a doc appointment. My bus got me here almost exactly an hour early, so I've been trying to burn time in the meanwhile. Mostly I've been playing a facebook game that my best friend and I really are into together, but then I realized that I had a vey good set amount of time for me to tr and do some writing. I havev been writing almost nothing at all, eitheer in terms of entries in places like this, or even just in my own journal. It's very frustrating, and does have a reason; my linear thought processes have become incredibly disjointed and hard to actually even really qualify as having for about a year now.

I started getting what seem like aphasic episodes where I llose the ability to find words, understand what is being said, or just can't follow the thought that I was halfway through. It's not absence siezures, we've checked, so riight now I have a huge ? as my reason for this happpening. It's incredibly abrupt, and frankly, incredibly scary as a huge part of what my personal identity has always been has been revolving around how verbal I am. To lose that all of a suddenn is frankly crushing. And, of course, as with all things, since I stopped writing as muchh because I couldn't keep the thoughts coming, I have become more and more rusty, I'm sure. Use it or lose it.
I don't want to lose it.
As such, I've decided that at times like this, when I do just have a set little bit of time, no more than 10 minutes or so for now at the beginning, I'm going to write. I don't care if it ends up being stream of consciousness, blather, or the Next Great American Novel. If it's writing, it counts.

I'm actually very pleased that I've been able to write this much in my allmost-over-now 10 minutes. I wasn't counting on it, but was determined to do what I could.


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.