An Obvious Sign.

Obvious sign of a day that needs to come to a close… Not being able to find my reading glasses.
Yes, I was wearing them.  It took me 10 minutes of squinty searching and they weren’t in the freezer or the spice cabinet.  I found another pair and popped them on.
I was, then, wearing two pairs of reading glasses on my face, and another on the top of my head, with one pair hooked on my collar, while I searched for any single pair of reading glasses so I could check my email on my ipod and recline with a cup of tea.

At least it was only four pairs time.

It’s progress.

(four weeks into summer break so far)

My boy is the sweetest, kindest, and most patient person I know. When I apologize because I’m too tired to take us on any big adventures on the average day, or when the pain gets bad enough to warrant a day of Spongebob and Cheerios, heatpacks and drawing, he gently tells me that my apology isn’t appropriate because I didn’t choose the pain or the fatigue and he tells me I’m his “sweetest, cutest, nicest Mama”. I tell him that I’m also the luckiest girl in the world because I get to know him and be his Mama.

I don’t want him to ever feel like his role is, primarily, soother. He is my child and I am his Mama. We are best friends and on our really difficult days, we are kindred spirits who just don’t fit in easily but always fit in with each other. (Though these days he’s getting awfully close to the border of where I am really embarrassing in my goofiness, when we are out in public. I get reminders before we get out of the car.) At the same time, there is so much negativity out there about how hard it is to be the parent of an autistic kid and I make sure he knows that the difficult parts of parenting and his autism is other people and not him and that he is a joy. I also remind him that we are all works in progress and he has been saying that, lately, whenever either one of us has a particularly spazzy or goofy moment.

I am the luckiest girl in the universe.
I am the luckiest Mama in the universe.
I am fortunate beyond measure to know this remarkable kid.

Here he is, jumping for joy:

And right now I need some sleep.
There will be a post to catch up on the events that I have skipped over… Eventually.

Goodnight.
xo
B.

Sippy cups and speed humps.

The view from here…. I feel this nearly insatiable need to update that is stifled by an equally huge drive to rest these bones and ping around in my own squash.

Once I finally have the energy and ability to share and get it out from between these two ears I start hitting speed bumps and backing things up, back to a calm place where I can hit pause and know I’ll be coming back to that place, that thought that needed sharing… Well, I can’t back up anymore because I know I will be blocked from getting back to what i needed and wanted to do. So I shove forward as much as I can.  Each day I hit a wall too soon in my day, there are tears, and the anger deep in my bones threatens to float up from the steel piles driven deep into the muck, where I tether it daily, knowing I need to hone existing skills and forge some new ones before I can let them float off on the tide instead of using my reserves on big gulps of air to sink them once again, tethering them deeper each time.

Ok. That picture has nearly nothing to do with anything.

Maybe.

I mean, two folkloric and beloved characters from childhood… Sunk in a giant human-head sized hermetic seal glass jar… ok, ok. I know…

Anyway, my wrists and hands are hollering. This typing one handed thing is just miserable.  I miss the comfort of my homing keys and the soft clackety-clack.

More soon…
B

.

Dark week

This has been a strange week. I have not been awake very much. I sleep through day and into night. Tedious dreams blend with what little tedious reality I meet. This must be a flare of RA. The pain and stiffness have reappeared. The stiffness isn’t as sudden but in my hour or two of awake I scramble to meet demands and wants and I try to fit being a good mama, daughter, wife, niece, friend just under the security grate as it is fastened and locked for the night. I hope this is just a temporary slow down or some sort of healing crisis. There is too much to do and I still have not adjusted to my body’s newest level of stamina. I’m stubborn. I know when my hands and feet and spine start hollering that I’ve done the damage and I’ll keep pushing until my joints lock up and all I can manage is tipping myself over onto my bed. Hoping there is a shift this week and rest and activity will fall into a smarter balance and pain will be more manageable so I can work on the stiffness. I miss participating in my own life. I just want to hang out with my kid and make stuff. Hoping something falls into place so everything else follows suit.

Sample in a Jar.

So much is going on around me, and in my brain, while my body does little but sleep even when the rest of me appears to be awake.  So tired, battling another fever and the unrelenting pull of deep sleep.  Thankfully though, my body seems to have rebounded from the bad reaction (an unhappy liver) from the last RA medicine on the list that will not send me into severe anemia or make me swell up like a puffer fish.  Or I should say, more like a puffer fish.  I’ve got the moon face prednisone thing going on full force but the rest of me is shrinking while I sleep, not that I mind as I have plenty of cushioning provided by years of stress, medications, and finding an enemy in food as so many foods just require too much thought to eat them and cover them with all of the variables that impact my ability to utilize nutrients without running too sweet or too low because some other variable didn’t occur to me and the thought of having to prepare anything, combined with weakened and stiff hands and vertigo, usually is enough to send me back to sleep or weigh me down with a heavy enough blanket that I won’t wander off to find something.  This isn’t new.  Actually, over the past few weeks I have been eating more and eating better than the past couple of years, and I dropped 15lbs.  I just wish I had the energy to go with it and I really just hate being this sick all of the time.  I hate not being able to do as much as I want to do for Alex and we don’t get to play together much. Though we have been catching up on movies, and episodes of Little House and the occasional episode of The Golden Girls (he thinks the girls are hilarious).

We are in survival mode thanks to his Dad’s new job, and I spend all of the time when Alex is in school sleeping, but I am getting to spend more time having quiet talks and reading with him.  It blows my mind that two years ago he couldn’t tell us the “story” of his day and he mostly spoke in quotes from tv shows and recited lines from books, and now he is just a constant stream of chatter (mostly about 1980’s video games- his latest special interest) and he often shares little tidbits about his day as he’s snuggling into bed for the night.  He’s an amazing little boy and the sweetest kid ever.  I said to him “I’m sorry I’m so sick all of the time.  I just want to have enough energy to play and help you.” and he tells me not to apologize because it’s not my fault and that the stuff I can do to help him and play with him makes me the best Mama ever.  I imagine that even without Asperger’s we’d be so close, but I do believe that we are closer because in some ways we are like two exchange students who speak the same language, in a foreign land where nobody speaks their language.  It’s frustrating sometimes, but more often than not we both find so much joy in our unique neurobiology.

Though lately, it is the “other” that has been on my mind too, as I feverishly clip blog bits and news pieces to Evernote for focused viewing when I can glue them together in a meaningful form.  I hate how non-sick people just don’t get it and offer criticism instead of sympathy or empathy or what all of us people living with degenerative and debilitating illness really would like- to be treated kindly and to be given the benefit of the doubt on occasion.  So here are my suggestions for non-sick people who just don’t freaking get it.

Don’t be an asshole because I self-advocate.

Don’t assume that I am negative because I mention chemo on occasion or a medication or physical therapy.

My poor health and my communicating about my experiences (some of them are damn funny, some are poignant, very few are depressing in the grand scheme of things because this being sick thing isn’t a choice, it’s not a personality defect, it’s a body rebelling against itself for unknown reasons that started when I was less than 2 years old. I would be negative and probably go some version of off the deep end if I didn’t talk about it.)

Don’t assume that nobody wants to read about my experiences, you’d be surprised how many of my dearest friends and I have found each other because of our own personal wars.  Don’t shit on veterans for talking about their war, especially if you are too young or too healthy to have been enlisted.

Don’t be an asshole because I communicate with other people like me and you overhear the conversation through the din of social networking.

Don’t be an ass and assume that because I can type a few words once a day (or in the case of my blog lately, once every 2 months or so…I am always thinking about my blog and you, dear reader, even if I haven’t been nearly as prolific as I would like) that I can do anything else.

It’s all about the spoons.

Go ahead and be a selfish turd because you feel that I don’t try hard enough or I don’t put the effort into relationships.  Totally ignore the fact that my abilities and my availability depend so much more on current technologies than the old school methods you feel are “real communication”.  I’m sure people thought the telegraph and telephone were the devil’s playthings, but times they are a changin’ and as much as some like to criticize social networking (typically those who have a very singular and narcissistic and selfish perspective on how they believe everyone else should use it) there are those of us that find Facebook to be a life line and for many of us, it’s not the way we used to do things, but it’s the way we do things now and for those of us who have communication disorders, hearing or speech impairment, are caregivers and/or insomniacs, or just don’t know when we’ll have the time and energy to pick up a phone or if we can even get to the phone if you return our call.

So go ahead, demand that the person in your life who is managing illness use their few precious spoons to call you because you don’t know what it is like to have limited spoons and you don’t know the snowball effect that using up spoons to fast can have on that person, their health, their kids, their home, their job… If you do communicate with them, however briefly, via any social network, just be a judgmental ass and say that the person’s “friends” aren’t real friends because they aren’t live and in person and standing in the same room chatting.  Most of us that do prefer this method of communication, due to illness or disability or caregiving and treatment schedules, have been betrayed by our own bodies. For many, social networks are a way to stay alive, be buoyed by shared experiences, be entertained, keep in touch and banish the loneliness that can come when you can’t drive, are stabbed by sunlight, have trouble walking, take medications that alter your ability to operate heavy machinery or even remember to put your pants on before you leave the house to get the mail.

I was just shocked at how much I read over the past couple of weeks about people with any chronic, debilitating illness or any deficit impact communication via any method, all having experiences with complete jerks who say really stupid things about our challenges.

Then again, there are those that see the true beings beneath the scratched and dented exteriors, behind the assistive technologies, and within the neurological differences.  Those people are the ones who are the real friends, and it has nothing to do with geographic proximity and everything to do with mutual respect and love and the understanding that some people find triumph in getting an A in a class, some people find it in getting a promotion or a new car, but some of us get to see the beauty in everyday things and the little triumphs that are hard won and brushed aside by many able-bodied souls.  I’d love to be in the position to post status updates about keeping up and surpassing the Jones’ (actually, I probably wouldn’t) or feeling like posting what I ate for lunch or that I’m out and about for a mani-pedi and lunch with friends is important news to share.  But my life is more complex than that. My friends, my true friends, celebrate the little victories with me, and I rejoice with them when they find their little triumphs.  So it’s not “my BLT is repeating on me” or “what color should they do my nails?” but for us the posts about getting through another treatment (or finishing a treatment and getting fantastic labs back!), or having a morning where we felt so good that we sat outside and read a book or that a loved one did something really sweet for us, or for the parents of special needs kids- when our kid reaches one of those little teeny goals that we would have never even considered a goal until we entered this strange and wonderful and brutally hard world of raising a special needs kid to be their best.  That’s not negative.  That’s amazing.

It feels damn good when something happens that means more hope or progress or even just a good laugh.   It feels shitty when other people, who cannot begin to imagine (or can’t even feign empathy or just keep their mouths/fingers still) decide to drop a steamer on these little joys and little pieces of hope that are sweet nectar to those of us who have known and seen the worst in our physical selves, emotions, and in others.

That’s all.  End rant.  Soapbox being sent out for repairs.  Oh who am I kidding, it’s just going to the garage with the other stuff that I will fix one day when I am up to it.  I just wanted to put this out there,  in hopes that anyone who has been critical of an ill person in their lives, because of what they can no longer do or do differently, will be more mindful if they cannot grasp they why or how.  I also wanted to put this out there to remind my fellow beings out there who are feeling muted or lonely that many of us have been there and many of us won’t disappear when the world gets in your way or your body protests everything.

I will post resources and links about communication and relationships when living with chronic illness, or coming to grips with a loved one’s chronic illness, as I find them.  I would love if folks would add their experiences and any links or resources they have found helpful, in the comments section.

For now I’ll leave you with one that just makes me feel less like a patient and more like the Chronic Babe that I am.  Of course, that is the fantastic ChronicBabe.com (be sure to sign up for the ChronicBabe Goody Bag!  It’s a joy to read the email/newsletter and it puts the spring back in my…um in my hair. And eventually my step.  Fingers stuck in crossed position.

xo,

B

You had to be a big shot, didn’t cha?

 

Voila. The big shot.
Ok, it’s not *that* big. Actually, the needle itself seems only a little longer and thicker than my old insulin syringes, but with Cimzia it is much more volume and the solution is much thicker..

I started Cimzia last Saturday and so far I have nothing to report, though I have been asleep for most of the past 48 hours, I have stubborn headache, and my appetite is ravenous and then non-existent, which is a change for me as my appetite has been mostly non-existent for a few years now.

I’m in the loading/onboarding phase of this medication and hopefully will start seeing results in the next couple of weeks. Fingers metaphorically crossed and hopefully they will be literally crossable when this stuff kicks in and works it’s magic.

The syringes are pretty cool. I know that probably sounds a little freakish, but I have a thing for good design, and OXO Good Grips teamed up with the Cimzia people to design a syringe so not only could patients administer the meds at home, but as most of the patients that use Cimzia have RA which often results in limited dexterity and hand strength, syringe design is one of those things that should have been important to other manufacturers, but it seems that the Cimzia peeps were the first to run with it.  AND I’m all about looking at the bright side of things we can’t just ignore- so boohoo I have to take yet another freaking needle, but yay! it totally makes my inner design geek squeal with delight.

And they just plain look cool. They are definitely easier to use and I am glad I had my doc request self-administration with my pre-qualification for this medication. I just can’t see traveling 30+ minutes each way, to the cancer center, to pay a copay and have the nurse inject this stuff. I have 17 years of needle experience under my belt, thanks to diabetes, so another subQ shot is no biggie for me (though if it was IM I would have the baldguy do it for me, or I’d suck it up and get a ride to the cancer center which is just something I do not need in my day when I have less than even low energy).

I was nervous about adding on a biologic/anti-TNF med as I had such a lousy experience when the last new med we added onto the methotrexate almost did me in (Plaquenil, due to G6PD deficiency), but after a brief 3 weeks off RA meds and a rapid return of the more painful symptoms, I knew that this was the next logical step as far as regaining some quality of life. I do know there are risks involved with all of this, but RA is not “wear and tear” arthritis, it’s systemic and it does have, at least for me, a larger impact than just some achy joints or not being able to go running. If it was just an issue of discomfort, I’d suck it up. I have a high tolerance for pain and I have lived with major osteoarthritis damage in my spine since I was 19. But RA destroyed the mobility in my hips. They don’t hurt anymore, but I can’t move them much either, then again the loss of mobility/range of motion is easier to accept than the idea of putting myself through two more major surgeries at this point in my life. RA messed up my vision due to inflammation and made breathing without discomfort a serious challenge over the past year due to inflammation in my ribs. I quit smoking almost 4 years ago and oh the irony that something else would screw up my breathing, right? Doesn’t matter, I’m glad that I did quit because all of the toxic substances in a pack of smokes would make things worse now and for the future. And I smell so much nicer, so I get more of the sweet snuggles from my kiddo, which keeps my spirits up.

Anyway, enough of my babble for tonight… I’ve got to go catch up on some sleep as I have been awake for a whole 5 hours. Joking. I am happy to be awake, but I don’t want to overdo it or I’ll knock out for the whole weekend. I’m learning, slowly but surely, to pace myself.

xo
Bek