Tag Archives: pain

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.

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The Event.

2 Oct

In my last post about my challenge in getting my rheumatoid arthritis under control, I announced that I was stopping methotrexate and continuing on with the Plaquenil…

Well, that lasted around four weeks.

Four weeks off the methotrexate and BAM!  Labs went zooming back up, way past my previous levels of inflammation… The pain got much worse, my eyes got all blurry and irritated again.  So I went in for my RA visit and the doc asked how I was doing.  I reminded him that I had stopped the methotrexate and he said “You mean that you stopped the Plaquenil, right?”  and I corrected him…  As it turns out, my labs turned up something interesting.  Ok, interesting really isn’t the right word.  As it turns out, my labs were the first step in what would become a monumental event.  Perhaps you have seen commercials for it on NBC.  It’s called “The Event”.

Yes. I am joking about the NBC thing.

My monumental event, or rather series of monumental events, are bigger than that show (though I must confess, I am enjoying NBC’s “The Event”) and the impact of the discovery that was made through that one little blood test has changed my life, and my family’s life, forever.

The little blood test was for a G6PD level and my rheumatologist tacked it onto my usual blood work as he had recently started me on Plaquenil.   When I had the test, and when he informed me that I had to stop the Plaquenil immediately because I have G6PD deficiency, I will admit that I knew next to nothing about G6PD deficiency.  All I knew was to stop the Plaquenil.  He wanted to start me on Cimzia immediately so that I would hopefully see some relief from my RA symptoms (which were totally kicking my butt as far as fatigue and pain go).  I mentioned that I have a swollen lymph node and he called off the Cimzia and told me to see my primary or a surgeon to have it biopsied in case it is a lymphoma.

A lymphoma?  No panic. RA puts me at a higher risk for developing lymphoma.  So I called my primary doc when I got home and they saw me within the hour… I gave them copies of my labs, pointed out the G6PD stuff, and left with a course of antibiotics to see if the swollen bit was an infection or if we had to go cutting me up.

A few days in and I felt like crap…Shortness of breath, more fatigue… I read up and that is when I started to learn the truth about G6PD deficiency and how much of my life it had already impacted and how to prevent further near-death, permanent damage causing experiences.

I learned, in that first week, that I would have to educate my primary care doctor, as in that very first day he prescribed an antibiotic that is contraindicated in people with G6PD deficiency.  They did prescribe a new antibiotic, and the swelling did decrease and nobody seems concerned about it anymore.  I should be starting Cimzia as soon as the insurance approves it for self-injection (they did approve it for injection by a nurse, but they would only allow it if I went to a cancer center 45 minutes from here… HA!)

Little did I know, in that first week, that this one little enzyme wasn’t just a key player in the functioning of the human body, and why mine had malfunctioned so many times along the way, but my sudden, new awareness of it would save a life, potentially save other lives, and bring a confusing and abrupt end to an important relationship, that has brought me clarity, as painful and perplexing as it is to accept that.

So we have been having more drama than any TV program… And in the next few entries I will share the mystery, the miracle, the pain, and the triumph.

For now though, I must sleep.

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

No Returns Without Receipt.

14 Apr

I promise things will be more upbeat and accidental thong-esque shortly.
Really.
Promise.

Here’s some good news: baldguy started training for his census job yesterday! The first work he has had in 20 months! So proud of him! I became an Auntie this week when my baby brother and his wonderful wife welcomed their gorgeous baby girl! I hope to get out to OH later this year (pending me being patched up) to meet everyone in person!

Ok, now back to the serious-ish stuff.

So here are my questions for you today.
1. Have you ever had a headache so intense that you lost the ability to comprehend language? I swear I almost said “NARM!” (Six Feet Under) today because I couldn’t find words or understand them. Alex was sweet and hung out with me on my bed until I regained the gift of gab. He really is a wonder, a gift, a miracle. Best kid ever.

2. (and this one is from our local news station) Should adoptive parents be able to return their adopted children? Vote below!

(sorry. this picture was just too perfect.)

No Returns Without Receipt

I’m a little scared to ask my adoptive parents how they would vote. Mostly because my head is just a ball of intense pain and standing in line at Adoptions R’US while the clerk tries to find the 34 year old receipt in the system and my mom makes my dad handle the return while she browses for a sportier model just sounds like torture.

I kid. Well, there’s always a wee bit o’ truth and honey in there for you.

I’m planning a longer bit on adoption, as it has been coming up so frequently lately- news, blogs, twitter, etc… I just kind of want to put my perspective (as an adult adoptee with multiple disabilities) on these issues… But for now…What are your thoughts?

Is returning an adopted child screaming of equality? The next thing you know, natural born are going to be demanding to be returned as well. And frankly, there are some rather sizeable physical limitations to that scenario.

Anyway,
I will call the doc in the morning. I just can’t get comfortable. I am reading quite a bit though, as the Kindle is light enough that I can lock up my elby-bones and read while resting flat. As of this evening though even pancaking myself on the bed isn’t easing the pain. So I’m up. For now. Until meds kick in. They don’t even take a nip out of the pain, but they make me sleepy and take the edge off the raw pain*-adrenaline cocktail that is ruling my life lately.

xo
B

*and really I’m not a big baby. I have been through some crazy shidoobi in my day, especially with medical stuff. I have a hugely high pain tolerance and between that and my Asperger’s I think I’m not really making how bad the pain really is clear enough to the docs. I’m kind of a goofy girl, but I get really quiet and mellow and calm with pain. I think I calculate everything more precisely, so as to not trigger more pain or damage.

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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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