Tag Archives: sick

I’m still here-ish.

25 Oct

Gah.  I’m totally failing this NaBloWriMo thing this year. Lots has happened.  Some stuff is just so big that covering it needs more focus and oomph than I have right now… Some of the things now seem to inconsequential to cover, and writing about them before writing about the big things seems almost disrespectful of the big things…  Jiminy freaking crickets.  I don’t even want to be running around in my own head this week.  It looks like an episode of Hoarders in here…  Shot day today (Enbrel) and official day after shot day is tomorrow (stay in bed, watch TV, stick hands and elbows in paraffin, nice hot packs, cold packs, and making lists of shit shidoobi I need to deal with when I’m not in the middle of shot day or the day after)…

I’ll be in touch.

Really.

I will.

Thanks for hanging in there,  dear reader(s?) :-)

xo

B

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Sample in a Jar.

31 Mar

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

Meanwhile, back at the factory…

12 Oct

The snot factory, that is.

Poor kiddo has a nasty cold and a temperature.  Needless to say, nothing is getting done- no rest, no work, NOTHING.

I’m amazed his voice hasn’t given out as he had trouble sleeping last night due to the very sad passing of a classroom pet (Finchy, the Zebra Finch) over the weekend.  He has dealt with death before, but had never seen something dead, at least as far back as he can remember.   I went in to take his temperature and he woke up and wanted to snuggle.  He looked like he was trying to cry, but he said he couldn’t.  I told him that the tears would come when he was ready and they don’t always show up when you think they will.  We sat up for a few hours eating apple wedges and toast and warm milk and then he snuggled in for approximately 4 hours of sleep.  Of course, he got me right up with tales of phlegm.  At some point baldguy got up, got kiddo settled with his listening therapy/headphones, and then went back to bed.  I was standing in the kitchen like “hello! where do you think you are going?”.  But it was too early to argue, so I made a loaf of oatmeal-brown sugar in the bread machine and left tea in the microwave (again).

Anyway, I finally got the approval for Cimzia!  Hopefully tomorrow I will be able to start.  Fingers metaphorically crossed. I’m also design-geek elated to see the OXO Good Grips syringes that they are dispensed in.  I’m not so excited by the copay but I don’t mind the $150 so much when I see that insurance is (so far) picking up the rest of the $3000+/first month tab.  Of course, $150 is still a pile of money, but that can be charged (as much as I hate to do it) whereas the $3000+ would put the hope that this treatment will work on my RA symptoms completely out of reach.

I won’t put all of my hope on this treatment, but the chance that I could feel better is worth a shot (or 2 shots the first week, and in two weeks 2 more…)

Today the boys and I assembled most of a Toy Story lego train set and it’s only in fine motor work that I realize how bad things have gotten with my hands.  I can type, no problem.  But pincer grasping and Legos are definitely off the table (step carefully! those things hurt like hell!) until I regain some dexterity.  Or until they start making cooler Duplo sets as those seem like they are just the right size for these old hands.

Other than that… No new adventures to share right now, but a new day begins in a few hours.

xo

Bek

Blueberry muffins. Frick.

5 Oct

I have noticed that Alex’s focus and ability to listen and hear us has been not quite as powerful as it was the first week we had him off the G6PD trigger foods… That week showed a dramatic difference, as did some of the 2nd week…

This evening I found out that he has been eating the snacks at school that they give all of the kids (even though we have been reminding him on a daily basis to eat the snack we put in his bag).  Today it was blueberry muffins (most commercial muffins contain soy or soy derivatives and blueberries are an off limits food).

*headdesk*

Long discussion took place… Baldguy will talk to the teachers in the morning (again).

*yawn*

Long day.  I have been sleeping all of this week.  So exhausted.  I’m happy that blogging allows me to start a post and finish it as I can.  A word here, a word there… No time or energy constraints (even on the days where a slow one word at a time is pushing it, far from my usual 120wpm)…. No pressure.

More tomorrow… Methotrexate day…. Though the day of is usually fine. Thursday through Tuesday are worrying me, as I attempt to stick to my NaBloWriMo pledge and keep kid in bread (thank goodness for the bread machine or all of the time I’m knocked out by this med would have him living on shredded cheese and cheerios).  It’s hard to carve out a life when you’ve only got max 16 hours a week of functioning, but that isn’t a choice, it is what it is.

xo

Bek
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Checking reflexes…

22 Feb

Today I was talking to Jeff about some spine info I found on the internet.  I haven’t been googling about my shoulder, and my arm being numb and shaky. I was going to do that after the MRI and it has gotten somewhat intermittant rather than constant and constantly worsening… But it’s still there…

And my legs are weak.

So I know something is going on.  So I googled.  I read aloud to Jeff.

And Alex heard me.

He comes in to the bedroom, smiles and me and

“BAM!”

Slams my left knee cap with his solid hardwood toy tool bench hammer.

Shocked the daylights out of me.

He told me “like at the doctors”

I replied “they use a rubber hammer!”

Jeff came to see what the fuss was about and I lost it.  I just cried and cried and cried, while I really wanted to laugh but the tears just kept coming.  It was funny, by itself it’s funny…..But my body does not agree…  My back hurts, it feels like a stack of cement blocks grinding against each other, whittling themselves down to nothing.  It’s not just pain, it’s that nails on chalkboard, things not moving right feeling that won’t quit.  My right arm isn’t working right, it’s numb or all pins and needles and the intention tremor is worse. And now my legs feel like I just ran a marathon and went on a bar crawl- sore and rubbery, wobbly.

Blech.

Kiddo feels so bad about the hammer thing.  He was trying to help. He is always trying to help me feel better.  And that makes me feel so terrible.  I want him to focus on being a kid, I want to be able to enjoy his childhood and his life and I really want to participate.

I hope this is just some temporary swelling thing and nothing that requires anything else to drag the last of my energy and my strength away from me.

Will update soon…

xo

b

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