Tag Archives: methotrexate

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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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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