Tag Archives: RA

Sippy cups and speed humps.

17 Jan

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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.

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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.

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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

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Dark week

14 Oct

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.

You had to be a big shot, didn’t cha?

21 Oct

 

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

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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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