Getting by after a month on Methotrexate for my RA

Friday, May 24, 2013

Happy-ish Friday! Have been offline, working hard, getting by, never enough sleep. Now I want to crawl into the memory foam and go unconscious to rest the bones. And it's only 7:15 PM. Sad. But that's life when all energy has to go into just being able to be effective at work for those few hours -- and then you're spent.

Dose #5 of methotrexate for my RA this weekend; seems it makes me sick for 2.5 days, and the rest of the week is better, joint-pain wise, but it's definitely no magic bullet yet. At least there is some improvement even after a month; doc said 6-8 weeks to get a good view of its effectiveness. Nausea and GI issues are getting a bit better as well. Will see the rheumatologist next week to find out if my liver is doing well enough to continue this therapy, or I have to chuck it and try another biologic.

At least I don't have to deal with that damn herniated disc now! Back is doing well. Walking is fine, though I'm slow and still limp at times because of the RA f'ing up my left hip and knees faster than I'd hoped. Still looking forward to the Brooklyn Bridge walk in July. It will be slow going, but I know I can do it.

Still avoiding lifting more than 10 lbs through the 9 month recovery from the L5-S1 bilateral discectomy in January. Otherwise no problems bending or twisting. The surgery was sanity-saving/life-altering, Laurel. I had no idea how much the back pain was affecting my ability to cope (from any perspective). I could easily see how people might be afraid of spinal surgery, but for me, there was no alternative. I couldn't cope with sciatica pain plus the RA. I was starting to lose it re: pain tolerance. Mine's pretty high, but I hit the wall on this one.

Back surgery gone wrong is a nightmare -- my particular surgery has a high "success" rate (~95%), but the definition of success is quite specific -- relief of the acute pain. There's no guarantee that nerve damage that causes numbness will go away, but that's livable. Some people have full recovery from that as well, but that's months down the road before you can know. I already had unrelated permanent nerve damage/neuropathy in my feet, so my expectations in that area were realistic -- as in no chance that was going away. So from my POV the surgery did what was accomplished with no serious complications.

As I mentioned, the remaining issues affecting walking (speed, mostly), for instance, are related to RA, and that's progressive/degenerative. Just have to do my best to slow it down.

Methotrexate:

Methotrexate is used to treat severe psoriasis (a skin disease in which red, scaly patches form on some areas of the body) that cannot be controlled by other treatments. Methotrexate is also used along with rest, physical therapy and sometimes other medications to treat severe active rheumatoid arthritis (RA; a condition in which the body attacks its own joints, causing pain, swelling, and loss of function) that cannot be controlled by certain other medications. Methotrexate is also used to treat certain types of cancer including cancers that begin in the tissues that form around a fertilized egg in the uterus, breast cancer, lung cancer, certain cancers of the head and neck, certain types of lymphoma, and leukemia (cancer that begins in the white blood cells). Methotrexate is in a class of medications called antimetabolites. Methotrexate treats cancer by slowing the growth of cancer cells. Methotrexate treats psoriasis by slowing the growth of skin cells to stop scales from forming. Methotrexate may treat rheumatoid arthritis by decreasing the activity of the immune system.

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Good news from surgeon -- on my own now

Tuesday, March 19, 2013

Today was the final follow-up visit to my surgeon, who performed the L5-S1 bilateral discectomy on January 18. So at the two-month mark, since I am not experiencing any acute pain in my back or left leg, he released me -- no follow-ups unless I somehow get into trouble doing too much.

He said that because my herniation was so bad -- once he got in there part of it was calcified and he had to chisel it out. The more recent herniation he was able to slice away. But it was bilateral and today he said again that it was one of the most challenging ops he's had in a long while.

I am walking up to 2.25 miles a day and doing my stretching, so he said to keep that up. I still have 1) occasional odd shooting zaps down my leg (normal), 2) some numbness down my left calf (normal), and 3) numbness on the bottoms of my feet (possibly normal, but I had existing neuropathy from diabetes), and 4) on top of the left foot (unclear the cause, possibly neuropathy).

It's likely that 3 and 4 may never resolve; he thinks over the next 6 months #2 will resolve.

I still have to avoid lifting more than 10 lbs, and definitely not sit without a break longer than 30 minutes at a time. I can tell because we were at Target the other day and they had some hand weights on sale. I picked up the 10 lb. weight and I immediately felt it in my back -- not like acute pain, but it told me "put that down."

The walking is great for the back; I am usually pretty stiff before and after, but during the walk I am comfortable. Well, except for the feet. Today the neuropathy was so bad that I had to wear two pairs of socks because they were hypersensitive and were burning and tingling. Yes, folks this is normal, and it sucks, but I have to push past pain that I know I'll have to live with -- meds haven't seemed to quash this; at most Lyrica takes the edge off of it, along with Calan. Cymbalta was horrible, got off of that quickly. Amiltriptyline was equally annoying and didn't do crap.

So I'm resigned to dealing with that and the RA -- compared to the acute herniation pain, staying at a 4 out of 10 on a pain scale beats 8 any day. It was only a couple of months ago that I was being shuttled around in a wheelchair to see the doctor.


I hope to stay out of one for a long while, and certainly not because I did too much too soon and  re-herniated. I spoke to one colleague at work who had the same operation and he said that he didn't do the PT walking, ignored the stretches, and yes -- he re-herniated and ended up with operation #2.

And he followed post-op instructions that time around and is doing well now, but he reiterated to me that I was doing the right thing by taking it slow and steady.

Casualties of this whole mess:
1) I have a lot of bills to pay (thankfully the insurance covered $32K of a $34,328.82 hospital bill!), but I did (and still do) have to lay out quite a bit of cash. It's sad that even with health insurance, people can be bankrupted by medical bills. I'm lucky this time around.

2) Lost wages: I was off for 6 weeks, most of it unpaid leave. What paid time off I had is long gone. So no vacations for me...that means no Netroots Nation in 2013. I won't have built up enough time off by then to go to San Jose. I have to save what I do earn to go to NYC for my birthday.

I'm trying not to take on any blog-related engagements these days; it's enough to keep my health on track, though tempting it may be. I know there are opportunities to get myself overworked and physically spent, so activism has to take a back seat. If I cannot even churn out regular blog posts, I have no business traveling around and putting miles on my body either, lol.

But I have some of my health back.

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Being OK with getting lapped around the lake

Saturday, March 16, 2013


Physical therapy walk today - 2.25 miles! I passed this mallard duck at the lake that let me get pretty close to take a pic.



Since it's Saturday and in the 60s (F), there were a number of fast walkers and joggers on the walking trail. It's kind of demoralizing to be lapped around the lake by these fit folks. I have to keep reminding myself that I'm doing the best that I can and to be thankful I can walk this far at all given where I was two months ago.

Like I would be able to run laps around anyone aside from the sedentary at this point.

In the past I really would have been down on myself about it, pushed myself too hard, and ended up injured or worse -- in this case back on the operating table, back cut open and the surgeon chiseling another disc herniation out or fusing my spine. But I don't want to get sliced and diced again (with the awful, long recovery), so I have to clamp down my drive to do too much too fast.

There are always a mix of ages and physical abilities on the trails during the week; today there just seemed to be more well-trained fitness runners who didn't look like they were breaking a sweat. They make most people look bad, lol. It is an annoying reminder (to me) that I'll never be one of those people -- I've got too many pre-existing degenerative conditions. Maybe the next life. I have to be happy with what's left of this body and maximizing what it can do. Acceptance is difficult, but not out of reach.

After all, here I am, still walking 2+ miles, with my feet numb and hurting from permanent neuropathy AND a swollen left ankle, the edema straining against my shoe. I think I can, I think I can...

One of the fun things that occurred on the walk today was running into a fellow Woodlake resident, Jon Parker, who recognized me from PHB/Facebook/Twitter (not sure which), and said he saw my prior photos of the lake. He said to look up his recent video of his own photos. We have a wonderful active neighborhood full of good walking resources that makes my PT so pleasant on days like today. Thanks Jon!



Related:
The small things that count...being able to do housework again.
A reminder when PT is hard...be good to yourself
* Back to work...butthurt begins in the chair
* Cleared to go back to work!
* Working my way back to trek across the Brooklyn Bridge for my big 5-0
* Milestone: tanking up...and a good day for PT walking (finally)
* RA rears up and says "don't forget about me."
* Can put on jeans again!
* Not so fast, young lady...your back is still f'd up
* Post-surgery update: tail end of flu; may need another MRI
Week 3 post-spine surgery, week 2 of the flu
Week 2 post-L5-S1 slice and dice: good news, not so good news
News on life after the L5-S1 slice and dice

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Happy birthday, mom...we miss you.

Monday, March 11, 2013

Today is my mom's birthday. She passed away in 1998, and we miss her. A little tribute...


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The small things that count...being able to do housework again.

Today's mundane milestone - back to housecleaning chores. Major dusting high and low scrubbing surfaces. Had extension poles and the like to avoid rough bending. Result? Good deep clean on that front since surgery, and quite a lot of pain. Don't think I re-injured anything (no lifting anything heavy); just hurt enough from all the repeated stretching to pass out for a few hours. The chores replaced my walk. I was too worn and sore. Back on that path tomorrow...

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A reminder when PT is hard...be good to yourself

Sunday, March 10, 2013


Clocks spring forward...that means looking forward to another good day, right?

PT still going well -- walked another 1.5 miles on Sat; the weather here was beautiful, in the mid 50s, sunny, low humidity. More hilly path + more around the lake yesterday. Will see if my back can get in gear to do it again today.

Uphill routes are really challenging -- not so much aerobically -- it's that my post-surgery back muscles are really tight and it slows me down. Even with PT stretches before and after, argh...like taut rubber bands. Everything takes time.

Reaching 1.5 miles means I've been able to reach my distance goal to cross the Brooklyn Bridge (1.13428 miles=5,989 ft) for my 50th birthday (July 8). That probably doesn't include length of on/off ramps. I now just have to be able to do it in a decent strolling time. I'm pretty slow now. But before surgery, I couldn't walk one block, let alone a mile. I am thankful, I'll take slow + dealing with my normal chronic pain from my RA and fibromyalgia and being able to walk again.

But on these hills during my PT walks I just pump up the music, forge up the freaking hills (seemingly slow as a turtle!) and remind myself that only a few weeks ago, right after the discectomy, my goal was to just make it around the cul-de-sac...and that put me out for a four-hour nap...

"Be good to yourself when, nobody else will 
Oh be good to yourself 
You're walkin' a high wire, caught in a cross fire 
Oh be good to yourself ..."
--Journey, Raised on Radio (1986)

The original:



With Arnel Pineda:



Related:
* Back to work...butthurt begins in the chair
* Cleared to go back to work!
* Working my way back to trek across the Brooklyn Bridge for my big 5-0
* Milestone: tanking up...and a good day for PT walking (finally)
* RA rears up and says "don't forget about me."
* Can put on jeans again!
* Not so fast, young lady...your back is still f'd up
* Post-surgery update: tail end of flu; may need another MRI
Week 3 post-spine surgery, week 2 of the flu
Week 2 post-L5-S1 slice and dice: good news, not so good news
News on life after the L5-S1 slice and dice

Read more!

Back to work...butthurt begins in the chair

Thursday, March 7, 2013

I received this wonderful "welcome back to work" after my medical leave from my ace IT staff...thank you! Nice to be back. Trying to be mindful by taking breaks from sitting too long; I'm walking around the office for a few minutes to rest my spine every 30 min or so.



I think I might need either a device to raise my laptop so I can work while standing, or some sort of table, because sitting in a chair (albeit a nice adjustable desk chair) is just torture on my spine for more than a half hour. I'll have to ask about that with the powers that be. 


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