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

                         


                            
         

4/03/2015

Walk in Red: Autism Acceptance

Autistics, a lot of them, hate the blue puzzle piece, for good reason. They are countering it with Walk in Red.


Kim Wombles 
In honor of my three wonderful autistics.

3/12/2015

On Revisiting Past Interactions and the Unfairness Factor: Newsweek's Autism Article

In December I was contacted by a reporter from Newsweek asking to interview me for an article about Jonathan Mitchell. I politely declined, as I haven't had any interaction with him since I apologized in 2011 for allowing him to be bullied in the comments on several of my blog posts. I sent the reporter the link to the article and my addendum with the apology.

Since I declined, I was more than a bit surprised to find out that my words to Jonathan about autism not being his biggest problem, along with my take on my three children with autism, essentially close the article.



 Initially, after reading the piece online, I decided against commenting on it. The title for the article online wasn't really that reflective of the article, as the article was more about Mitchell and his life and how he was a loner even in the autism community. My 13-year-old read the article, and she came away from the piece feeling bad for Mitchell, wanting him to like himself. She felt his situation was unfair and he should like who he was, commenting on all the things he can do and how brave he was to sing in public.

I've had mixed feelings about the article, whether it was aimed at being sympathetic toward Mitchell and his point of view or if its point was far different. Online with the title "The Debate Over and Autism Cure Turns Hostile," it is innocuous enough, but it is very dated. My interactions with Mitchell were from 2009 to 2011. In the online world, that's ancient history. It didn't just turn hostile. It's been hostile from the get-go, long before I arrived on the scene.


The picture opening the article shows Mitchell as he would seem to see himself, alone and lonely, fading into the background.

The actual print magazine, although the article is word for word, changed the intent by changing the title:

 
 The full first two pages shows Mitchell at his desk, a picture that appears in the online article.

02_20_JonathanMitchell_01 

It doesn't appear with that title, though, and I think the bait and switch of the initial online title and the title in the contents, "Hope Kills," is unfair.

Sure, several individuals I know online appear in the article, quoted from present time, stating that Mitchell hates himself.

Is this how we want to treat people? Mitchell, in the article, admits to being rude, and the article author notes that he gives as good as he gets, but again, what does it serve to cut a man down?

By reducing Mitchell to a trope to either sympathize with (feel sorry for) or to dismiss as a self-hater trying to make other people hate themselves, the article does Mitchell a disservice. It doesn't see him as a whole person with feelings. It doesn't consider how this bait and switch headline will affect him or other autistic individuals who are similar to Mitchell in that they are ostracized, alone, and lonely, because of difficult behaviors or behaviors just off enough to make people veer around them.

Mitchell himself might be fine with the portrayal, seeing any acceptance of autism (autistic individuals) as the same as accepting a potentially (and perhaps often) crippling disability as the norm, in need of no mediation.

I think Mitchell and all the individuals like him deserve better. I'm not sure he was heard in this article, that the reality he was trying to convey was really understood. That sometimes a "cure" would be a blessing for those who are severely disabled by autism.

When I started blogging six years ago, I ran across Mitchell through the Age of Autism blog, which featured him as an adult autistic wanting a cure. We had several acrimonious interactions, and rather than considering the individual on the other side, I focused on the words. I ignored the communication disorder that is part and parcel of autism. At the time, my oldest was 19, and I did not see my son in Jonathan. I saw a middle aged man who was bitter. I didn't go deeper.

Six years later, it's becoming easier to see my son thirty years into the future, with his difficulty in regulating tone, reading facial expressions, and understanding receptive language. I hope and pray that people who cross his path will look past the issues and see him empathetically and give him the benefit of the doubt, that they will be kind and patient and accepting. 

I hope that there won't be pictures portraying my son as alone or lonely or as a self-hater. I hope he won't feel that way. And I hope Jonathan Mitchell will not always feel that way, either. As my 13-year-old says, "Everyone deserves a friend and to be happy."


2/24/2015

Reinforcements




Some things you see coming. You know it's ahead and you make preparations. You fortify yourself and get ready.

But what do you do when you go from having the best time of your working life, in the middle of things, working hard, putting in more hours than ever to literally fall flat on your face? And not just once, from one fall, but from multiple falls? What do you do when your words fail you and the most interesting and incorrect words come out in place of what you meant to say? What happens when even in your head you fight aphasia? And when those words stick for the item? When it becomes a permanent replacement? What happens when you don't even notice you are screwing up your words?

 Doctor's appointments. MRIs. Blood tests. Nerve conduction studies. Specialists. No answers, some answers, recommendations to keep going to bigger specialists hours away. No thanks. I'll learn to cope since there's no fix.

Diabetic neuropathy to add to 27 years of fibromyalgia along with the other issues that make life interesting and challenging. Learning to accept that those burning patches are there to stay, and figuring out how to manage them by acknowledging them and then boxing them up in my mind, a container for each toe, each finger, each foot, each leg. Going through this routine until the pain is boxed up or I've fallen asleep.

And a walker. And a cane for when the walker won't work for the situation. And frustration at having to concede that driving is risky given the dizziness and brain fog, so that freedom is taken away 99% of the time. Learning to lean on my family and friends and admit weakness. And live with it. Own it. Get around it. Give it the finger when I've got bigger plans. Learning to plan around what I want to do so that I can do it. And accepting the price of that.

 

And since my fingertips are numb, and my wrists hurt, someone else gets my meds for me or she's picking up the whole bottle's worth that I've dropped. 

Learning to work from home, to teach online, to figure out how to get back into the classroom in the fall. Living with being home 24/7 and days that take on a regularity of being awake for awhile, asleep for awhile, and in pain all the time because the meds that work on the fibro and neuropathy also make me an even greater fall risk and give me a foggier brain. 
 


Surveying the living room from my recliner and watching the cats rub all over the walker, the dogs play under it, the kids occasionally sit in it. Accepting that it has become a part of the background in the three months it's been here. The cats even take turns being wheeled into the bedroom when I go that way for a nap. The dogs run ahead--they know when nap time is. I've gotten used to it, to what it is, what the cane is, what the permanent disability placard is: reinforcements.

With my walker, I can zoom. And I do. Sometimes, it feels close to flying, and there is joy in the zoom. With my cane, I feel older, more fragile. I trust the walker. I do not trust the cane. I certainly do not trust me. My balance is awful and I fall a lot. Into walls, bookcases, cabinets. Onto the ground. So, walker it is. Shiny and red and loved by cats who get rides and take naps on it.



Plus, I can match my outfits to it. As long as I don't start thinking I need a walker in every color. You know?