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.