6/08/2017

No words

More than 30 months ago, roughly 900 days give or take, my ability to keep pushing against the barriers my body was imposing on my will faltered, fell, shattered, and our lives have not been the same since. My mother's body had been giving her all sorts of grief for many years but had attacked with a ferocity none of us expected. Learning to live through these things has been challenging for all of us.

We've hobbled along, my mom and I, together through phone calls and visits, commiserating and laughing in the face of this ridiculous roadblock to our plans and we've each pushed and fought and paid the price when we pushed too hard. Many of our ailments are overlapping and I've believed that if we could and did do genetic testing, we'd both have a glitch in the same place causing this. Not that it'd do much good. There's no stopping this train we're on. There's just maximizing the journey.

For nearly two years I've had no words to offer here. I learned to write essays that offered a story, a wrap up at the end with a lesson, a witty line, or closure.

I can't do that any more. There's no lesson in a disease process that defies naming definitively all while attacking one's body in new and novel and often cruel ways and seeing one's mother continually being hammered with greater and greater challenges.

There are no witty lines left. I've lost them. I've battled depression, anxiety and panic attacks for decades and the ways they screw a person's life up when they're winning. I finally owned my PTSD--the flashbacks and nightmares and the inescability of the experiences that created it this past month to the new psych NPs now managing me and my four labels as they move my meds around, attempting to undo the damage people not trained in psychiatric meds did me. So far, I've weaned off one med and am weaning off another this month. Come the end of June, my 49th birthday present to myself is being off two meds that have hampered my ability to take other meds for pain and migraines. In July I will start a long weaning off the original psych med I've been on for eight years plus. In the end, I'll be down to one med that treats the first three labels, which should make the fourth one quieter. 

I suppose that could be read as a closure but people with those labels know closure is a joke, a fairy tale, a cruel lie.

Fixing that doesn't fix a body bent on attacking itself. It just means maybe I'll develop wit again. I highly doubt I'll ever find anything really funny about this, but my labels and the med taper may be obscuring my view a bit.

So I'm left here almost at the end of this tasting the bitterness of a raw almond, knowing I've failed the goals of essay writing. No lesson. No witty line. No closure.

If I argue I'm truly not bitter, it will ring hollow, an obvious lie to readers sensing that bitter undercurrent. I am a bit bitter. Things were going well. The kids were doing well, Rick was ok, my job was great and I was where I wanted to be professionally. And truthfully, all I lost was being in the thick of things. Being homebound as an introvert is not a hardship. Mostly. Losing driving isn't an issue when one's too ill to go anywhere. There's no room for boredom with all three kids, seven dogs and nine cats to entertain me. 

It took bifurcating my life into my illness over here on its own and my life with my family as far from that as possible. Everyday with my kids, husband, and critters is a damned good day, a victory wrested from an illness that is constantly changing while consistently worsening. My illness doesn't get to make my life sad (even when it does) and it doesn't get to rob me of the joy I find in my teenagers' animated chatter, in the lapful of cats and dogs I get each day and their curling next to me at night, surrounding me like protective talismans. And none shall pass, their protectiveness says.

My illness doesn't get to take teaching from me. It just makes me a better teacher, kinder, softer and a believer in how easy it is for a person's life to go to hell on them with no warning. Deadlines retreat into the distance and the focus of showing care takes precedence. We're all on the same ride, whatever metaphor one might prefer. Mine's a train hurtling ever faster into the pitch dark blackness of a tunnel with no end in sight. Yours might be the roller coaster from hell.

The reality is we're all walking wounded and it will go a hell of a lot easier if we link arms, share adaptive equipment, and hold on tight to each other. 

And there's a lesson. Not bad for having had no words at the start of this.

8/11/2015

No, Seriously--I Wasn't Joking At All

I would break out in a victory dance, 
but I'm still new to the wheelchair game. 
Haven't got all my moves worked out yet.

It was our trial run, the girls and I, to the college to see how much energy it was going to take for them to lift the wheelchair out of the truck, set it up, and me get into it. And then into the college. We only covered the office area, and we encountered some difficult points, but we did it. We went, we got in, we saw people and talked. And we got back into the truck safely. That's something, my friends. I'm proud of  it and my girls for their help. I couldn't have done it without them.

8/10/2015

Out Into the World

From where I sit, I can see the handles for someone to hold, the wheels that will turn as it is pushed. The girls have practiced lifting it high enough to load into the back of the pickup where it will be bungycorded in so off the girls and I can go, somewhat independent.

Still no name, no label, to explain how in less than a year I've gotten here, but here I am, regardless.  In order to go to the college and get from one end to the other, this is what I've got: a sweet ride of a wheelchair, designed for comfort, a gift from two wonderful families, one who no longer needed it so passed it on to one of my rocks, my foundation, who with her husband, mailed it to me, buried in hundreds upon hundreds of peanuts. I am blessed. We've paid out of pocket for canes, a shower seat, a walker. The wheelchair was out of reach, as is a scooter, until we have diagnosis and insurance will pay. The area for the ramp to be built has been cleared of rose bushes and trees. In a couple months, I will wheel right out the door and race down the ramp and out into the world. Still with my helpers, no doubt, but we are all entwined, all interdependent. Our family simply expresses it more loudly and clearly. And I am reminded of how lucky I am to have such wonderful helpers.

Oh, and thank heavens for all my stuff that lets me get around. I did it again. Left ankle sprained again.
 It looks worse today, and now the right is matching it. I give up. Bring on the wheels!

7/29/2015

Denial Ain't Just a River, But Thank God, There's Joy


You know things aren't right here if three months go by without an update. Most of that has been because if I didn't write about it, I could ignore it. The rest of it was what's the point in saying I still feel like crap and no one is quite sure why.

I can't keep my eyes closed forever and friends deserve updates. 

By the end of April, the Cushings was finally gone, and the roses were in bloom. I actually made it out to the backyard with the cane and Rick's help. I looked less miserable and I had recovered my sight, so it was easy to feel like I'd caught a bit of a break. I had. All the other stuff was still going on, but at least the two new things went away.

 

 In May, I managed to sprain both my left foot and ankle in a series of klutzy moves involving the cane and my husband trying to help me up.


Thank heavens I already had a cane and a walker (and shortly after, a wheelchair, thanks to a dear friend). Still, I looked better. I got out a few times a week with Rick driving. I didn't always make it into the store, but I happily sat in the car and waited. Out of the house? Priceless.
 
  
But before you think that looking halfway decent means feeling it, my daily schedule since October has not really changed. On good days, I'm up for an hour or two in the morning and an hour or two at lunch. Otherwise I'm asleep. I usually am up by four in the afternoon and able to stay up till ten or so. If I go anywhere, do anything above my usual, I'll be in bed longer. The pain meds don't really kill the pain, but they take the edge off. There are some glorious moments, like this evening in the pool, where I felt good. I mean, like almost me again. 

And those moments when the beauty of the world around me stills my soul and brings me joy.
 
For so much of the last ten months, I've been unable to concentrate, to think for very long, to read. I'm pleased to say that for right now, that part is gone. I feel almost right mentally. I still have word salad, though, as Lily likes to remind me every single time I have it.

I'm also still using the cane and the walker for shorter excursions. The wheelchair is there if distance and time are of a length that is untenable. My ankles have gotten worse over the last several months, and where the cane and walker were first about maintaining balance, they are as much about taking some of the pressure off my ankles. Let me assure you, your shoulders and upper arms can get a work out when you redistribute some of  your weight to them. 

When I have found myself blue, though, my critters have been there. They seem to take turns to make sure I'm never without one or five. It may also be that we have 14 animals. Who can really say?

 
 
June was the longest month. Waiting to get to the appointment in Dallas and thinking we'd finally have answers stretched the month out. It was the longest month of my life, in some ways. 

I amused myself by looking for shoes with cats on them.

A week before I saw the MS specialist in late June, I woke up and was unable to get out of bed or, afterwards, get dressed. I couldn't even sit up. My 13 year old got me up and got me dressed. My brother took me to the ER.
 
See, here's my "I'm miserable, please kill me or drug me" look. They did neither, but there were some comical, kill me now moments because not only could I not really move around much, I also couldn't pee. I couldn't be catheterized, either. Three very experienced and very un-shy nurses did a hell of a number on me as they tried. I can only imagine the view from the south, you know? So, an IV later and a prescription for an antibiotic, I got the hell out of there, relieved to be released. The weakness eased up as the day passed, and thanks to the saline, well, other matters resolved themselves, as well. It looks like the weakness was possibly caused by inflammation that would later be found in my cervical spine from C-4 to C-7.

Not to worry--the miserable look went away for awhile.
 
Despite all the hope for an answer, the specialist in Dallas provided no solutions. His response was that I did not have MS. Instead, I should look towards metabolic disorders and go see a rheumatologist, along with getting my blood sugar under control and my weight down. He ordered a neck MRI, which found that I at least had a real reason for the pain in my neck: stenosis and inflammation.

My own doctor was surprised--he still feels MS is the most reasonable cause, but no lesions...who knows. Let's see what the rheumatologist has to offer in September.

So, do I have MS? I don't know. Is it a combination of fibromyalgia, migraines, diabetes complications and injuries to my joints?

I don't know that it matters. Symptoms are being treated as best they can be. It isn't perfect, but I'm so exhausted, having an umbrella name for this, if it won't change it, isn't needed. It is what it is.

The things that can be done are being done. Harmful and no longer helpful meds have been removed. The removal of the unpleasant side effects has been another semi-break that is much appreciated. And in order to get my blood sugar under control (8.2 A1C), I'm on insulin. Three to four shots during the day and one at night. Good think I'm ample enough to have plenty of injection sites. On the tight diet I'm on, one would hope and figure the weight will work its way off.

So here I am now.


Somedays I look like me. And people think I'm better. And while, in some ways, that is true, that I do have good moments, the reality is that I've learned to choose joy. Even when my ankles are killing me and I'm sitting in the car while Rick does the shopping because I hurt too bad to join him.

 

In the last ten months, I've been blessed to be home with the kids, to see the girls' art grow and change as they've grown and changed.
 Lily's
  Rosie's
 
 the girlies
 


Making a sign from  a saying of Jenny Lawson's (The Blogess)

 
I've watched the boy grow out his chin hair.
 I've wandered around my flowers.
And I've cuddled the new furbabies.
 
Whether I wanted to or not.

My doctor assures me we will figure this out, to not give up. He doesn't promise he can make it better, and I appreciate that honesty. After ten months with some key symptoms unchanged and years of heading towards where I am, I can accept living with chronic pain and fatigue and I can do my best to find a way around or within my limitations to make the most of my life.
 

No regrets.
Be Brave.
Choose Joy.

All these are words engraved on rings I wear on my chubby and swollen fingers. They are my reminders if I forget. Although, honestly, being with my kids, husband and critters are natural reminders.

 

 
Truthfully, though, the most important lesson might be this:
Be goofy.

4/16/2015

In the Meantime