Tag Archives: arthritis

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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Baking 2: Electric Boogaloo

10 Oct

The danger is not lest the soul should doubt whether there is any bread, but lest, by a lie, it should persuade itself that it is not hungry. -Simone Weil

The hunger for love is much more difficult to remove than the hunger for bread.
Mother Teresa

Bread for myself is a material question. Bread for my neighbor is a spiritual one.
Nikolai Berdyaev

The wretch who digs the mine for bread, or ploughs, that others may be fed, feels less fatigued than that decreed to him who cannot think or read.
Hannah More

To be sensual, I think, is to respect and rejoice in the force of life, of life itself, and to be present in all that one does, from the effort of loving to the making of bread.
James A. Baldwin

(love love love BrainyQuote.com)

Bagels/ Laugen (pretzel)Bagels (by me!) The grey/weird speckles are Celtic grey sea salt. Yum!

We found out rather quickly, that all commercially available breads at our local supermarket (Publix) contains either soy, a soy derivative, or ascorbic acid.  All of these ingredients are on our list of forbidden foods as Alex and I try to build our health and learn to live (and hopefully live well!) with G6PD deficiency.  The only bread we have found is pita bread, and while we enjoy it sometime, we both had been craving some fluffy, more leavened bread.

First off, I ordered an inexpensive Sunbeam bread machine from Amazon.com.  That solves the daily bread issue- I can make a 1.5lb express loaf in an hour, without any kneading or oven heating to make my arms and hands hurt more (from the kneading and the hand-wringing when I get another sky-high electrical bill…thankfully the cooler season is almost here, so I will be able to shut off the air conditioner. Woohoo!).   This is a pretty good solution, and allows me to make a loaf every day.  We usually have fresh bread at dinner (the express loaf, while still warm, tastes just like Carabba’s bread according to Alex) and the rest of the loaf is used to make Alex’s school lunch for the following day (now that Smucker’s Uncrustables are off our menu. They were a staple during my pregnancy with him and have been a staple for him since starting school.)   However, I noticed a neato looking book on bread on Amazon.com and coincidentally, my friend Marissa mentioned it the next day.   So I considered that a sign and bought it.

It is called “Artisan Bread in Five Minutes a Day”  and it is fantastic.  All of the breads are for the most part, “no knead”.  Basically you mix up a base dough in a large batch, using a mixer with a dough hook or just a large spoon or your hands.  You mix just enough to combine the ingredients, but not enough to actively knead it to develop the dough.  Most of the doughs can be kept in the fridge for up to 14 days, and the book features many recipes and suggestions for using those doughs. All of the doughs can be used to take multiple types of breads, so it’s not like a person who actively bakes using this book will get bored over the 2 week period, from eating the same loaf constantly.

However, being creatures of habit, we have found that the Olive Oil Bread is our favorite and it is perfect for pizza, focaccia, calzones, even a simple rustic round.  I do find that one batch of the Olive Oil bread dough only lasts us a couple of days as I’m definitely not on my feet yet, so when I am I like to get as much done as possible.  It’s hard for me to cook anything, but if I make pizza for Alex on one day, I’ll set up a few mini-pies so he will have lunch for school and a snack the next day, and Jeff will have leftovers.

Anyway, just wanted to share this awesome cookbook with all of you…. It has definitely put artisan bread within the grasp of this arthritic old gal, and in the mouth of my little one with all of our “contraindicated” foods.

Oh and the best part?  You should see how much Alex is eating now and how happy he is!   It’s an incredible change and it just makes my heart smile to see how strong he is getting.  It’s making-me-all-teary-wonderful!

xo

Bek

P.S. Thanks to my friend Marissa, for suggesting this book!  Please check out her amazing art & visit her Etsy shop!

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P.P.S. Does anyone have an easy to use ice cream maker they really like? (I’m thinking an electrical one, to preserve my energy)

A Letter to Patients With Chronic Disease…

18 Aug

I think this blog entry, from distractible.org, offers an interesting perspective… Food for thought for those of us living with chronic illness and food for thought to everyone in the medical profession who may come in contact with PEOPLE with chronic illness.  I do suggest that folks who think that those of us with chronic illness are just negative and whiny, especially about the medical profession, read the comments after the letter from Dr. Rob.

Be sure to add your comment there, or here. That is totally up to you, my dearies :-)

Here’s the link:

A Letter to Patients With Chronic Disease.

xo

Bek

The Sun Will Come Out Tomorrow.

9 Aug

Hello!

Here I am!  No really, I’m here!  Stop rubbing your eyes. This is not a mirage. I am actually updating my blog with a brand spankin’ new entry.

So, how has everyone been?

We are coming up on the end of the summer, or at least the end of summer vacation for those of us with kids.  In our little nook of Florida, school actually started today for some counties, and starts for ours next Monday.

My last blog entry involved trying to raise funds to send Alex to a special Aspie camp in Ohio.  An extra huge Thank You to those generous folks who contributed!   Unfortunately, we had made plans based on my first few weeks of methotrexate therapy, when I was feeling alive and awake for the first time in years.  I swear, I though the one or two days of fatigue would be manageable.

But things changed as we upped my dosage.

And the fatigue started to spread as some of the joint pain started to dissipate.

And it spread over me like molasses, gripping my feet then slowly weighing the rest of me down.

I started to imagine the methotrexate pills as Liliputian military lashing Gulliver to the ground.

And at first the ties on my body and brain would loosen after a few days.  I’d have 2 days of exhaustion, sleeping around the clock.  I have not slept so deep since before I carried Alex in my belly, and certainly not in the 7 years since. I am his guardian, his advocate.  I am hypersensitive to sound and smell.  I am always alert, just in case. Because I know it would take nothing short of a car alarm blaring an inch from our bed to wake the baldman up.  So I am in bed, muscles tense, dreams shut out, senses alert.

But methotrexate sinks me into this strange isolation tank as I start to nod off and for two out of seven days the world carries on as I dream vividly, and soak my clothes and the bed sheets with pouring sweat, and wake only in the evening, to recharge with pedialyte and whatever I think I may be able to keep down before resuming this odd sleep, and the handful of medications that keep me alive.

Then I was having a couple of days of fatigue, but not sleep-coma fatigue- more like sleeping away the morning, waking up around noon, and then actually functioning for a couple of hours.

Then we upped the dosage, twice, and each additional little pill sucked more life from me, even though the labs showed that it was also cooling the inflammation in my body and my markers dropped to within normal ranges.  I have a good doctor though, who sees his patients fully, and his thought was that as I wasn’t feeling better then we must continue looking for answers and testing treatments, as numbers mean nothing when you feel like crap.

I slept 3 days of every 7, then 3.5 of every 7, until finally, today, I realized that I had slept 5 out of seven days, and felt like I could sleep the next 24-48 and still be exhausted.  My body started hurting from lack of use instead of swollen and misshapen joints.   My muscles hurt as though I was running a marathon everyday, as my meds made me contract every one and hold the tension, even while sleeping.  Everything felt so pulled that just taking a single step, or sitting up at the edge of the bed, threatened to break me.

I weighed the pros, and the cons, and realized that I had traded an existence that had been modified to fit around the pain and fatigue of rheumatoid arthritis for one that was built around the pain and fatigue of the treatments for rheumatoid arthritis.

I had panic rising up in my chest last night, that I don’t want it anymore.  The idea of Thursday coming up fast and the idea of taking those pills again filled me with dread, I am feeling so cornered, so trapped.

So I called the doctor.

And I am stopping methotrexate now. I will not take my dose this week for the first time since the beginning of May.  I will continue to take the Plaquenil and the tiny doses of Prednisone.  In the beginning of September I will have my next labs and appointment with my Rheumatologist and we will work from there.

For me, this treatment was worse than the pain and stiffness, and the fevers inched higher on the meds than they did off of them.  It didn’t matter anymore that my joints felt better than back in May, because I can’t use them if I am sleeping this much…  This experience for me has been like getting the flu every week- I’m either coming down with it, in the thick of it, or getting over it.  The getting over it and coming down with it parts keep getting smaller, so that I feel like I have a five minute stopover and my next flight is from another concourse.  And Alex needs me.  And not just during those little glimpses of OK.

So I am done.  Another medication that I had a crap reaction to.   I’m allergic to most of the meds they use to treat inflammation, at least the ones with a mellow side effect profile. I’m giving my body one week to sleep the rest of the toxic soup away and then I’m going to do some hard planning. Time for balance.

Oh broken body, please accept something without protest.

But it can’t do that, as what kind of battle strategy would that be.  Auto-immune disease is a bitch.  It feels strange accepting and caring for a busted up body that keeps trying to derail all progress.

I must be stealthy and ninja like. I must be ruthless, ferocious.

Game on, body. GAME ON.

Xo

Bek

There is a Methotrexate to My Madness.

7 May

I have Rheumatoid Arthritis.  I had wondered about this for some time, but received confirmation on Wednesday when I went to the Rheumatologist.   Nobody will ever know how long I have had RA, but my guess is that it started before my parathyroid drama a few years ago.  Over the years since then (4 years) I assumed the aches were from my osteoarthritis (which is “wear and tear” arthritis) or from my bones healing from the extensive osteoporosis from having a parathyroid tumor the size of half a large banana making all body functions worthy of specialists visits and over 20 prescriptions.

When my left hip joint showed up fairly damaged, with bone cysts, and effusion the ortho doc was stumped. How could I have this degree of damage out of nowhere.  I stayed in bed (though even being flat or sitting supported hurt like hell, the pain tired me out, so I figured I’d be more efficient about falling apart and camp out in comfort), I used a cane, I did as many physical therapy visits as my insurance would allow me.  I was desperately trying to avoid a hip replacement, as to me, this out of nowhere pain and stiffness was probably something not as cut and dry as wear and tear.  All of us were stumped when the right hip pulled the same crap.

My hands would claw up and spasm.  I wondered if the boys should wear protective eyewear and hard hats while I made what jewelry I could at the kitchen table when I could get out of bed without so many meds that I was rendered goofy.   I bought a good office chair (a Mirra), started having more symptoms.

In October the rest of my joints jumped in.  Hands stiff and hurting.  Elbows hurt even just being still.

I tried taking my pain pills but nothing helped. They did make me so silly that I just didn’t care about the pain so much. Which sometimes, is the only way to go.  But nothing really helped, because the problem is inflammation (my body seems to be bombing itself), and I can’t take NSAIDS due to allergy.

So here I am.  Finally I have something other than pain and sadness (not self-pity but rather a desperate sadness that I felt that I could not help Alex as much as he needed me to) at my core, and that is hope.  My bones, my joints, my heart, my brain, my soul are beaming with hope.  I cannot be sad about this newest diagnosis, because it is an answer to a heavily looming question, it’s a major release of worry, it’s the removal of the blinders so I am allowed to look toward the future beyond just the next few minutes.

I have been through diagnosis of major illness/conditions/injury before, and I am familiar with the emotional and cognitive process I go through (I guess I am a creature of habit), but this time the one that stands out is anger.  Not at my body, not at the disease, not at medication, and not even at my lack of health insurance.  My anger is that in my time of need, when I spoke up and said “no” to demands of other people, due to my health issues, I have never been given the respect I  (and any human) deserve. I have been hated on for saying no and offering alternatives to people when I couldn’t come forward and offer a place to stay, or drive, but still they festered.  They knew of the health issues, they knew that they were debilitating as far back as my pregnancy with Alex, but they chose ignorance for their own needs. I was reading Chronic Babe yesterday and there was a great article on this sort of thing, and I think I just need to purge the negativity of others, even family, completely from my mind and body.  Some days I wish I had that mind-erase gadget from Men in Black, other days that island in the middle of nowhere (with UPS delivery and wifi to handle my med orders and amazon.com deliveries) seems grand.

Anyway, I just took my first dose of Methotrexate.  Cheers!  Here’s to the future!

xo

Bek

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