Saturday, January 13, 2018

Such a choice as this

     I haven't posted in an exceedingly long time. That's actually pretty indicative of how the last many months have gone. They haven't really; gone anywhere that is. The vertigo was increasingly debilitating, and occurring more days than not. Except... not quite. There were times when I didn't have any attacks of vertigo for several days. But those were the days when I was mostly sedentary, either just visiting with my friends on the couch, or else somehow not doing much physical activity.

     However, on days when I was moving, either just with regular household work and management, or else doing day excursions to a museum or such, later that day or the next I would be laid low with vertigo. Frustratingly, since my neurologist had directed me to sedate myself whenever the vertigo hit (so that my brain wouldn't rewire itself to thing that the natural state of being as it has with my migraines) it meant in the long term that productivity was actually counterproductive and led to me losing large chunks of time to being out of it. Activity induced vertigo didn't exactly sound neurological the way we had first thought it was

    I mentioned the correlation I'd noticed to my cardiologist when I saw him in October, and he was very interested to hear that I'd found this. We had me wear a halter monitor for 24 hours back when the vertigo first became serious in 2014, so the possibility of an irregular heartbeat was already ruled out. After reviewing my chart for a bit, he asked me something I never thought I'd really need to decide:

Which was more debilitating, the vertigo or the migraines. 

Heck; this was not something I'd want to have to weigh like that, but I knew the answer immediately


My physical safety was being threatened by the vertigo. I never know where or when it would hit. Falling over randomly in places such as sidewalks, stores, and even in my house wasn't safe. I'd been very lucky that I used to pass out so much as a kid, and that I'd been in gymnastics as well, because I knew how to fall to decrease the likelihood of hurting myself. But still, everybody was aware that it was only a matter of time until something happened that resulted in a more serious injury than just the bruises I had.

More than once I'd been mistaken for being drunk, including by my para-transit bus drivers. If that continued, I would be taken less seriously by the public, even if something was seriously wrong.

My mental capacity was diminishing as well. This terrified me, and was a serious part of why I stopped posting here. Comprehending conversations or directions, following through on plans, and even maintaining my ability to communicate with others at times were all devastating to my personal identity as an intellectual, as well as to my general functioning.

So yeah, I knew that the vertigo was more debilitating. But what a choice to have to make. In the end, my cardiologist and I have halved the doses of one of my heart meds, and added another. Thrillingly, I haven't had any vertigo since just before Thanksgiving in November. The migraines have increased quite a lot in intensity, severity, and frequency, as well as producing a ninth(?) distinct type of migraine to my list.

I'm incredibly grateful that I have, at least for now, eliminated the vertigo and that I feel physically safe in a way that was long gone.
...but, reconciling now the knowledge that I have deliberately chosen to increase my migraines to a level they haven't been in almost five years is something that I'm really struggling with.

Saturday, July 15, 2017

Adaptive living requires adapting

Adaptive living requires that you actually adapt. I've been coming to not only recognize that fact now, but also internalize it and start doing so. And it's helping.

For so much of my life, the migraines hitting, and then receding, would give me an easy All or Nothing lifestyle. When I was younger and I didn't have a migraine flooring me, and later after my intractable migraine settled in,  the pain was more in the back of my mind, I was able to function as a "normal" person would. Then, come the pain and other symptoms, boom I was flat on my back, functionally ceasing to exist. Frankly, that was somewhat handy, I'll be honest, as the extreme black and white idea fits comfortably with my bi-polar.

But now? The vertigo is different, and that scared me.

Learning a new way to live at 27 was incredibly hard, and frankly, I fought it a bit. Not intentionally, but because I didn't really know or understand any other way to cope. Having to find a way to carry on when I didn't know how the vertigo would effect me each time an episode came was, and is, incredibly unnerving. Trust me, with all that I've come to live with, I cherish any sort of control or predictive abilities I can get my hands on.  But the vertigo doesn't work that way, and after what, about two and a half years, I'm finally starting to figure that out.

After years and years of procrastinating, and also of reluctance on his part, my neurologist earlier this year did willingly fill out the paperwork I needed to get handicap placards for parking. I had to eat my ego to do so, but I had finally heard what I had been saying. I frequently didn't have the endurance to go to the store when the vertigo was hitting. I knew that getting to the store, then doing whatever shopping was needed, and then getting back to the car was far too much. So, in my lovely prewired mind, that meant that since I couldn't do ALL, I would do nothing.
It wasn't working. There were a lot of times I could have done part, but was too afraid of getting stuck halfway through.

Since I got the placards in late May, I've used one only four or five times, I believe. But those few times have made a huge difference.

On one occasion, I was able to agree to go to the Phoenix Art Museum with my family, because I knew that I would have a little bit of an aid there in the parking lot. It might not sound like a terrifically huge leap, five parking spaces closer or such, but mentally it gave me the strength to go.

Another ego blocker I conquered on that same trip was agreeing to use a wheelchair. I never wanted to do so; as somehow in my mind it showed weakness...or something. I never understood how that was, but I'd wired it in my mind as such.
However, about five minutes into the visit, the vertigo came along and decided it wanted to visit the museum as well. Instead of turning around and leaving, I agreed to a wheelchair which was happily provided by the museum staff, and I was able to spend the next several hours going around the rest of the museum.
Yes, as I had to take more medication to fight the increasing vertigo I got less and less able to focus or pay attention, and almost fell asleep in the last gallery, but the fact that I was able to actually stay and be there, and if nothing else, not end up wrecking the trip for the rest of my family, was an immense achievement for me.

It won't work every time. I don't expect it to.  But the thing is, adapting to my new health situations can't ever happen if I never try.

Saturday, June 17, 2017

In Sickness Come from Stress

Starting out, let me just say that, to put it mildly, life's been a mite stressful for me of late... on multiple fronts. Because why not, right?

There's been the "typical" stresses that come with life:

  • Migraines: it seems that I might be developing an 8th distinguishable type of migraine. 
  • Vertigo: the vertigo attacks are getting much more frequent, as well as severe and debilitating.
  • Life Situation: my mother retired from 21 years of teaching and after the first school year of her not teaching, we have settled into a reasonable balance of both of our needs, but it's been a real shift.
  • Family: there was a death in the family that, while lasting only a week, didn't happen in an easy manner. 

Add to these that I've ended up coming out to my uncle's while Mom is out on vacation as I can't stay home by myself, and yeah, it's been stressful. Staying at my uncle's can be nice, it's a mini-vacation of my own in a way. I guess, however, life's caught up with me in an interesting way.

I've gotten shingles; at 29. 

   I'm incredibly lucky that the rash was in a small area, on my torso and not a more dangerous place such as my neck or face. Even though I didn't realize I needed to get the rash looked at and treated until the fourth day of the rash, instead of within the first 48 hours. However, the prescribed antiviral I was given did stop the rash from spreading, and it has since started to go away.
  I was rather bemused that I did develop shingles, when I'm so much younger than even when the pharmacies start being willing to give vaccines. Nor do I have a compromised immune system, as is the other common cause. 

Then it was pointed out to me: Stress

Major stress can make the body much more susceptible to illnesses. And I've been dealing with enough stress, not only the regular stress to my body from having chronic illnesses, but from major life changes as well. And that's natural.

I've never been one to...   outwardly emote the stresses in my life. It's much more something that I tend to internalize. The stress usually then gets processed in bits and bites,usually when I get to where I feel is a safe place. There were times when I would make it though a very stressful situation much better than I would have expected only to fall into a complete collapsed mess. That collapse I'd go into would most likely be worse, I'd guess, than if I had been able to express the stress I was dealing with while I was in the situation. 

This time, however, instead of my body's waiting to get home to purge its internalized stress, the release, yes in the form of my getting shingles, has happened much sooner. I'm hoping that that means I will be able to not have as much of a crash as I might have in previous times. 

I hope also, this indicates I now feel safer in my own body.
That is my lifelong goal. 

Wednesday, April 19, 2017

Pediatric and Adolescent Migraines - they're a real thing

If I had to point to a single part of my childhood which I would call the pivotal aspect that really influenced my entire life, I know what I would choose:

The lack of recognition and medical information on pediatric migraine.

That was huge. In the mid-1990's to the beginning of the 2000's, when I was first developing chronic, yet episodic migraine, and then when those migraines became intractable at age 12, there was little to no serious medical research readily available. My pediatrician was at a complete loss and I was bounced from a few specialists, including an ENT, a physical therapist, and a pediatric neurologist until I was summarily dumped in the lap of a neurologist who had almost no experience with early adolescents. My migraines were considered serious enough to garner his attention, however, and I have continued to see Dr. B for over 15 years now.

It was even more of a fight for me to get any respect from a lot of the people around me when I tried to explain my migraines. There was a belief that kids couldn't get migraines. That we didn't feel chronic pain. That frustrated and hurt me at a tremendously deep level. I was dismissed as a malingerer. It was said I was just asking for attention. "Everybody" knew there was nothing actually wrong, and if just a little headache hurt me that much, I needed to learn to toughen up. The judgement from people whose good opinion I would want, and who cast those kinds of cruel accusations at my developing ego did a huge number on me.

After a while, however, I realized; no, they were wrong and I was right. There really was something wrong in my brain, and that the migraines were real. Also, there was an incredibly important medical fact that I could hold onto; a piece of reality when the world was calling me a fake.

 There is a difference between a migraine and a headache.

A headache is a symptom
A migraine is a syndrome

Frequently, still, I've heard headache and migraine used interchangeably. This frustrates me to no end for two reasons.
1. It continues to put an entire medical condition at the same level as a single physical sensation.
2. There forms a mental one-to-one equation of a migraine only being a headache. That migraine, a complex neurological condition that is still not fully understood can only somehow be shown as a headache, and nothing else.

That's so not true. Fortunately now, that myth is being dispelled. The Diamond Headache Clinic has recently published an informational presentation, focusing on pediatric and adolescent migraine, explaining the many different types of migraines that there are, the various symptoms that can come with each type, and also what sort of information and treatments there are for sufferers.

Slide presentation provided by Diamond Headache Clinic.

I seriously wish that this type of medical information's availability had been around when I was that age. I applaud the Diamond Headache Clinic for pulling this presentation together and getting it out there to the people who need it most.
 My greatest hope is that at least a few children and their families can start to learn about their migraines and how to best go forward so that their life can be an easier one.


Wednesday, March 1, 2017

Awkward Hospital Lobbiies

You know, for all that hospital lobbies are very safe and meant to be gateways to good health and treatment, there are times when I feel incredibly stressed beinig there. I guess it's because for the most part, hospitals are about ascute issues. Sugery, worsening illnesses, emergency care, heck, even childbirth as this is technichally a Woman's Hospital, all are more about getting attention to the patient and the issue and tryinig to figure out what to do.
That doesn't work for me. I know exactly what my concerns are, and there's not much in a hospital for me. I was practically blackballed from ERs back when I was a teenager and still trying to figure out how to deal with the incredible pain spikes from my migraines.
I was on a migraine ward for treatment for four weeks when I was 16. That was a time that left me with several peronal issues I still fight. The one that fits this was actually out of no fault of my own. I used to pass out randomly up to 10x/day. We had no idea why, and didn't figure out how to treat the syncope until years after my stay on the ward.
I was a minor when I went, which meant that my mom was with me for most everything as my adult adovcate. Also, because I was 16 and the ward was technichally for adults only. One evening, as Mom and I were going back to the ward from the dining halll, when I ended up on the floor. I never actually lost consciousness for very long, just long enough to fall, but still, it did end up quite dramatic usually to outsiders. Mom knew there was nothing to do until I had myself back together enough to be ablee to stand up on my own. Otherwise, I'd just drop back down. So she did as she always did, and made sure I was in a fairly safe location and that nobody would run into me.
Well, a few doctors from a different part of the hospital saw me on the floor and ended up completely raising hell. They forced me (conpletely against Mom's wishes) into a wheelchair and took me back to the migraine ward as quickly as possible. This meant that I hadn't recovered yet, so was incredibly unstable while being moved. Also, when I finally did end up back at the ward, Mom and I were thoroughly balled out by the nurses there for being in a wheelchair. They were sayinig that I had created a big fuss over nothing and needed to have made it back myself. Apaprently the fact that I'd tried to fell on deaf ears.

Anyway, that was close to 13 years ago now, bbut again, I'm getting into situations where I end up in the floor as the safest place. It's the vertigo this time, but still...a chronic condition I have no diagnosis for, and no effective treatment.
Just now I've been fighting another attack of the stuff, and while I took the meds that I've been given, I still find being horozontal the safest. Also, the Rx makes me incredibly sedated. But I knew that even just rather slumping in oine of the chairs in the lobby and dozing would alarm the staff, making them think I was unresponsive (I would be slightly) and set them off into Emergency Mode.
That's not something I wanted to have to deal with. I prefer to be invisible, since my disiblities are. It's easiest.

I've managed to keep myself going by typing this up in the cafeteria after buying myelf a second breakfast and coffee. Now it's time to go to my second apppointment before heading home where I can finally be flat.
Survial techniques, no?

Wednesday, February 1, 2017

Grimace; but Always Say Thank You

I woke up with a rather spectacular migraine spike this morning. I've been having more of them, and a new kind at that, recently. It's been really frustrating, especially as the last three months or so I've been pretty much in free fall in terms of number of good days I have. The vertigo I started getting in 2014 is getting a lot more so, and only a few days a month can I really go a whole day without it getting in the way at all. Add to that starting in November a new type of migraine on top of the others, and I'm in a lovely mood.

Yesterday I was griping to myself as I was curled up in the fetal position on the couch again that one of the things I hate most about the vertigo is that the only method of dealing with it that I have been given right now is to drug myself so that I don't register what is being felt. But that means that my functionality has gone to pot, as being made to not register what my brain is feeling makes it pretty difficult to be able to register or accomplish much of anything else. I was bemoaning to myself that with the severe migraines, at least there were times when I could just grit my teeth and take two more steps than were at all felt to be possible. Even if I "fell" and ended up with only one, at least I'd done something; or at the very basic level, I'd been able to try.

Cue this morning and the migraine spikes that had me curled up crying on the kitchen floor before breakfast. (That really distressed my dog Gilbert. He tried to make me better by licking my face and nuzzling me for about 5 minutes.)

After about 9AM, I decided that since it was obvious the pain wasn't going to be going away, but I had any amount of brain function, I made myself get up and try to do something. I ended up managing to sweep some of the floors in parts of the house. I didn't get it all done, and ended up needing to rest with an ice pack around my shoulders and gatorade to drink, but I did get a tiny bit of something done. The 15 years of intractable migraine, and my 29 years of just living with pain have made it so that occasionally, I can do something.

It's rewarding, seeing myself having gotten something done when the pain's so bad; especially as it's so rare I can. But when I can, I'm grateful, and need to remember to say thank you for the successes I can have. 

Saturday, January 7, 2017

Good news that disappoints

There's always a sort of dichotomous struggle I go through whenever I get sent in for another test of some kind. It's frustrating because, I suppose, there's obviously no control I have over results of any MRI/CT/EEG, and yet there's always a part of me that feels I should "make" my body give answers.

Answers are the only real thing I ever want.

The last three or four months of 2016 weren't great ones for me. My migraines were getting more aggressive, I was developing new symptoms and presentations of pain, my vertigo has been getting increasingly debilitating, etc. December was pretty much a farce in terms of being reliable in any way. But what am I to do? It's par for the course that I develop new...specialties, shall we call it, as time progresses. It's just my thing.

I had an MRI mid December, ordered by my neurologist to check for any physical changes in my brain. That's pretty much SOP for whenever I get new symptoms. Honestly, it'd been almost a year and a half since my last one, which might seem close together for some, but there had been a time when I was having either an MRI or CT about every 9 months, searching for something that would give answers to why the status migrainous had started. Eventually it was decided that, as it was phrased, if I was going to have something, I would have been dead already, so we really stopped with the constant testing. That was nice, but frustrating, I suppose in a way. The answer to "Why the pain?" was No Answer. Very zen, very unhelpful for getting a diagnosis.

As always, when I realized we were going to go check for physical issues again, part of me really started to freak out. Understandable, I suppose. Getting a brain tumor isn't high on anybody's Xmas present list. On the other hand, there was that small part of me that was hoping, not for a tumor per se, but for something, finally, I could actually point at and say, "Look, that's it!"

As always, in the end, the only thing I truly hoped for was answers. 

I got a call from my neurologist a few days ago, giving me the results of the MRI. I have, as usual, a "beautiful brain" to use his words. Nothing abnormal, everything as it should be.

So hurrah, there's no tumor that has started to develop, nor any other sort of physical issue that could start causing a lot of issues and other problems I can't even imagine.
But, yet once more;

My answer is 
no answer.

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.