Wednesday, March 16, 2016

WTINW: The Two Year Anniversary

Profound apologies for a brief interruption of my favorite week of the year (rounds 1 and 2 of the tournament!).

As it happens, this week also marks an important anniversary: Two years ago this week, I had my first major symptom flare, first realizing that something was 'wrong'. 

It was much longer before we realized that 'what was wrong' was not easy to pin down and was not going to just go away. But that one day marked the turning point. The line between 'okay' and 'not'.

There are many stories to tell.... of how my symptoms evolved, of the warning signs leading up to The Incident, of my slow education of how the world of medicine works: the players, the silos, the competing goals.... I've mostly avoided telling them because, well, they are all long.

Today I think I will just try to explain what happened that day, and where I am right now. 

The Incident:

One evening 2 years ago, I sat propped up on the couch with my laptop, (probably reading and watching basketball stuff), and my cheek started to feel 'twingy'. Since I'd had my wisdom teeth out a few months before, and I'd had a hard time healing from it, I thought maybe it was related to that -- an exposed nerve or something.

But through the evening it started to creep further up my face and down my neck, until it was at the top of my head/scalp... and then it started to spread down my back, arm, hand, fingers... side, leg, and by the time I went to sleep last night, had reached my foot.

Suffice it to say that I was more than a little bit concerned. But I was tired, and after all, had not been feeling well for awhile... and sleep has been my magic cure-all since I was a small child. So I went to sleep planning to make a doctor appointment in the morning if it was still going on.

And then it was morning. And it was not only still there, but seemed to be getting worse. And not only was there this 'twingy-ness', but in the shower I realized that I could feel hot water on the left side of my back but not on the right. And at that point, I was getting pretty close to freaking out.

I managed to calmly pull out my phone, and started typing numbers.... and realized with a shock that my fingers were not cooperating. At which point I finally sort-of did freak out and drove to the hospital, reasoning that it was either going to just go away and I would feel like an idiot, or it was going to get worse, and I should probably drive to a medical center while I was still able to.

I made it to the hospital without incident, found my way to the front desk (Baptist is a crazy maze, just saying), nervously looked around and said something like:
So... I'm 30-something years old.
And I know that I am not having a stroke.
But I really need for someone to tell me that I'm not having a stroke.

The emergency department was very thorough, running all sorts of tests and CT scans and MRI's, but after ruling out the major players, and deciding that I wasn't in any immediate danger, sent me home with instructions to come back if it got worse, and follow up with a doctor in any case.

Thus began my journey through the medical system.

Since That Day:

There have been a ton of symptoms affecting nearly every group of organs -- from GI issues to weird dark patches of skin to weight changes to vision.... but many of them have come under control by becoming Celiac-level ruthless about gluten and dairy. (Which is a story all its own).

But then there are the stubborn ones that just don't seem to budge... The symptoms that linger, and might get worse during a flare but never quite resolve, like the other flare-stuff...

Many of these symptoms fit under Complex or Hemiplegic Migraine, and many of them fit under ME/Chronic Fatigue Syndrome, which are the two official labels I have for this crazy illness.

But there's one thing to consider that I feel remains unexplained:

At no point in the two years since The Incident have I fully regained the feeling in the right side of my face. Every day, all the time, right side of face can feel pressure but not sharpness or hot/cold. 

Which sort of begs the question, if it's a migraine, why is it a constant state that never goes away? And to my knowledge, all the numbness/weakness on my right side is not the usual sort of thing that happens with Chronic Fatigue? Plus all the other stuff that happens as a flare, which we sort-of ignore now that it's 'under control'...

The big elephant in the room is of course "MS". And for the better part of a year we chased that. The very short answer is: the MRI was inconclusive, and it hasn't changed. So the door is still open a small crack, but with the severity of symptoms, we'd expect there to be more evidence. Second and Third opinions concur.

I absolutely understand the labels the doctors have settled on. But at the same time feel like it's fair to push back on that a little and say 'it seems like there's lot about this that we don't understand and can't explain'.

And also, I think it's fair to say that despite the labels, I still don't fit in a convenient 'box' in the system, with a checklist, treatment protocol, and support group to go along with it.

For these reasons, I still in many ways feel 'undiagnosed' although my doctors would have valid reasons for telling you that's not the case.

So.... What does this mean; Outside of the flares, what, exactly, is 'wrong'?

The Current Symptom Breakdown 
(Partial list of the major everyday issues)

Numbness on my right side. 

- 'Numbness' is a little vague -- I can feel pressure but not hot or cold, or sharpness.

- Always on my right side. Often sometimes extending from the top of my head all the way to my toes, but always in my face. (The first question people ask is usually about whether it might be a pinched nerve in my spine... We know it's not because we checked, but also because a pinched nerve in my spine wouldn't be causing numbness in my cheek, eye, etc.)

- I also did a nerve conduction test, where they ran electricity through the nerves in my arm and my face, and they were working fine. (Which rules out something like carpal tunnel causing the issues with my right hand.)

Burning Pins and Needles on my right side.

- At different places, different intensities, but is always there, most often 'settling' in my face, and side/hip.

- People tend to relate this to the tingling that happens to people as part of a migraine aura, and that is definitely a good theory, but there is something I realized I don't communicate very well about this --

- Before finding medicine that could help it, the normal every day amount of pain was equal to when I burned my hand on the stove and burned all my fingerprints off. Every day. All the time. Constant. Often flaring up much worse than that. These days, with medicine it tends to range around a bad muscle cramp or bad sunburn. But just knowing that there's a ceiling on it is a relief, and helps me ignore it.

Motor Control Issues

- My right side has taken a big hit. And when the numbness and/or pins and needles 'settle' into fingers, foot, arm, leg, etc, motor control really goes out the window. Even after 'recovering' from an episode, I never quiet get it back.

- It's not that noticeable to the outside world, because I overcompensate with my left side, but it's actually one of the more frustrating things to deal with. My right hand is much slower than the left when I type... have trouble throwing overhand because my fingers won't know when to release it... it's easier to eat left-handed...


I've been using a walking stick lately, which seems like a new thing, but the truth is I really needed it all along (which is yet another story.)

But 'dizziness' is kindof a vague term there are a couple types:

Feeling lightheaded/like I'm going to pass out. If I stand long enough without moving, it feels like I have to will myself to stay upright. (Very noticeable standing in line at the store or standing to pray at church...)

Spatial awareness and vision issues. This one is harder to explain, but if you've ever had a new pair of glasses, or looked through a warped piece of glass, it's like that. Not 'blurry'. It's more like "wavy" and "flat". "Flat" meaning...

I don't really have depth perception. I can't tell how fast objects are moving, or how close or far away they are. Driving in daylight is okay most of the time but at night almost never.

So it's also hard to tell if the floor is slanted or if I'm about to run into something. There are a lot of days that the walking stick is less about steadiness and more about spatial awareness.

There are days that I would be totally fine without it if I could just always run my hand against a wall to orient myself (which was how I got away without using it for so long). The trouble is that other people don't know that's what's going on, walk between me and the wall, or don't know that I will have trouble walking around them, and walking down a crowded hallway becomes much more difficult than it should be.

- As a side note, this is one of those things that's really different out of the house vs in the house... At home, were everything except the cat is stationary, I move much free-er and faster... and wind up covered in bruises from all the things I've walked into. So it's not better at home, it's just that I know if I run into something it's the coffee table, and not a small child, so I'll let go of being careful for awhile.

Vision Issues:

See 'Dizziness'

Memory Issues:

Here's the thing about fatigue/energy.... Usually something happens before my body says 'no mas'. And that something is that my brain completely stops working.

Left/right, backwards/forwards. I cannot add and subtract units of time to save my life. I have to set a reminder on my phone for absolutely everything. Siri has been a life-saver.

-  I can still figure things out, it just takes me much longer than it should. I have to write everything out, draw pictures, rely heavily on external-data-storage in physical tangible forms that I can see....

...and also, rely on alternate inputs. So if I have a fork in one hand and a piece of paper in the other... "which one to throw away" becomes a problem-solving activity, where I think about things like "which one is heavier".

Physical Fatigue

at a certain point, my body just stops working. After walking a lap around a track, my right side starts dragging, I get really stiff, I have to think and concentrate about movement to make it happen, so thinking and walking or talking and walking is usually not great and either causes spacial awareness issues or crazy conversations with misunderstandings and miscommunication.

From the very beginning this was one of the most frustrating things to explain. Right before The Incident, I ran a 5k race that felt like Death. It felt like I'd had the soul sucked out of me. And I say that as a person who has run many many races out of shape. I've run with 8 year-olds who like to sprint/walk the whole way, and with much faster siblings and friends... this was nothing like that. This was like I had the full-blown flu and was on mile 20 of a marathon.

From the very beginning I kept saying that my body wasn't working right. It gets stiff and hard to move, it feels heavier than it should... it breaks down and just doesn't want to work.

The problem is, I can "pass" all sorts of strength tests. First of all, Yes. I can do anything once. Through sheer willpower I can force myself to pull a box down from the attic. But what you don't see is the aftermath -- the fact that it used all my energy for the day, that I slipped on the stairs, that I wasn't able to cook dinner later that night...

And there's also the drastic and sudden drop from where I was -- I was never a great athlete, but I was at a point where a 5 mile run was normal, had run a RAGNAR, and started half marathon training...

- Also, different tests reveal different things -- just last week the physical therapist did a timed walking test and I did not meet the standard for a normal 80 year old. Where was that test two years ago...

So what does all of this mean? Two years into this, How am I?

There are days that I am frustrated and angry.
There are days that I am hopeful and content.
There are days I would tell you I'm really good, forgetting how much smaller life has become in order to have 'really good' days.

I am grateful for supportive friends and family.
I am grateful to have (finally) found a good group of caring doctors and medical folks who want to find ways to deal with the symptoms even if we can't fully explain the cause.

I am confident that God is leading this somewhere.
But impatient to get there.

I am leaps and bounds beyond where I was a year ago, or two years ago.

..."I'm okay". But I'd like to be Well.

*WTINW: Ways That I'm Not Well

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