Friday, August 31, 2012

9/1/2012 Rheumatoid Arthritis Diary: the ER visit from hell + an update

So I spent 11 painful, fruitless hours at the Duke ER on 8/29-30, arriving at 5PM and leaving at 3AM. I'm just now sentient enough to write about it.
It began when I had to stay home on Thursday because on the day prior, I had an episode of pain that was sudden and shocking in its intensity.
While walking from my car in the afternoon to PT at the local children's hospital (it has a heated pool), it was like a switch was flipped in mid-step -- a lightning bolt of excruciating pain shot from my lower spine near the lumbar region of my back, completely 1) inflaming a different bursa in my left hip 2) almost paralyzing the muscles in my low back, 3) a sensation of excruciating muscular and nerve pain down both of my legs to the knee, involving my hamstrings and quadriceps, and 4) inflaming bursa in my right hip.
I had recently started a new drug for my RA, Humira, which has as possible side effects back pain and nervous system problems (including numbness, tingling, and weakness in your arms or legs similar to what was described above. They occur in around 6% of patients; I seem to be very sensitive to many medications and invariably fall into the categories with more rare reactions so I am always more alert for such things when I change or start a new med. One of the issues of concern with Humira is it's an injectible that is taken every 2 weeks, so if it was a temporary reaction to that, it would take another week and a half to clear my system.
I went home on Wed sore and hobbling and barely able to change my clothes. I took some pain meds and tried to sleep, which was nearly impossible Wed night because no position was comfortable, and most were excruciating, even with meds in my system.
Thursday morning I was able to hobble to the kitchen and write to my job saying I wouldn't be in. I was able to sit in a chair for a while, ate a bowl of soup and then stand up (since sitting started to hurt) write up my symptoms -- and actually blogged them as well). I called my rheumatologist and she called me back within the hour (!), and said I should go to urgent care. Kate had already left for work. I told her that I wasn't in distress, just very uncomfortable and said Kate would take me when she got home.
My morning meds kicked in and with the extra 800 mg of ibuprofen I was able to go to bed and get some sleep, albeit in odd positions, using pillows to intermittently bolster my left leg depending on how the pain was pulsing.
What ended up sending me to the ER
It was an attack of a similar nature to Wednesday's. I woke up at noon, and my pain medication based on time, had worn off. After merely getting up from bed, going to the bathroom and then walking about 15 feet to the kitchen. The pain almost made me fall down because of its suddeness - that lightning bolt feeling again going from my low spine and around down the sides of my rear end and thighs (the left side much worse than the right). The pain then increased dramatically, with the muscles in my left leg tensing uncontrollably.
I hobbled to the sofa and fell down onto it...and screamed. At the top of my lungs. The poor dogs were scared.
I could find no position to quell it as the pain ratcheted up the scale to what is now my new 10 out of 10 level (a kidney stone attack was my prior 10). I couldn't get to a phone, I would have been incoherent anyway. I tried to lower my pace of breathing and focus on trying to find any position that would stop the pain. I ended up hanging off of the sofa, upside down, with my left leg in the air. I stayed like that for about 10 minutes as the pain lowered, likely because I wasn't putting any body weight on the leg and gravity was working in the opposite direction. I kept chanting to myself that "this is not have to get a grip to get out of this."
I had to think -- what do I do? If I manage to get to a phone and call 911 there's no way they can 1) get in without breaking the door down because I can't get to it and 2) put me on a gurney. The thought of being put flat on my back was intolerable. So I rationally thought -- I need to get a pencil and pad so I can write down emergency contact info if I did call 911 and for Kate so she had it to convey if I was in too much pain to speak coherently.
To get that pad and pen meant I had to get up off of the couch and make it back to the kitchen. There was no guarantee that the pain wouldn't surge once back on my feet. Crawling wasn't an option either. That position would be equally excruciating.  So I steeled myself, and hobbled as fast as I could, grabbed a pen and pad and made it back to the sofa in screaming level pain. Went back upside down for 20 minutes and screamed for about 10. I couldn't even contemplate writing anything. When I did, the F*CKING PEN WAS OUT OF INK. Oh. my. god. no.
Plan B. I didn't think I could make another trip to the kitchen given the pain level cost it was to get there. I thought, I need to get to my sledgehammer pain meds. I figured if I could get a couple in me, it might numb the pain down to a level of control so I could get to the ER.
I made another screaming trip to the kitchen, took 2 pills and then got back to the couch and was at this point crying in pain. How long would it take for the med to kick in? Lying upside down again, Casey (my pit bull) came over to comfort me (or see wtf was going on). I petted her and tried to relax, legs in any position that wasn't excruciating. It took about 20 minutes for it to start working because I felt sleepy. Once the pain got down to about a 5 I was able to sit upright.
With the pain level down I couldn't feel my left leg. It was both numb and tingling, now all the way down to my foot. It was like swinging a dead appendage around. I could put weight on it (painfully, but tolerable compared to what it was 20 minutes earlier), and was able to write up notes, drink some fluids and prepare to go to the ER. Put on a dress because there was no way I could lift my legs to put pants on, put on clogs so I could get my feet in and out without bending. Waited for Kate to get home.
The ER
I figured it would be a long haul but not 11 hours. We arrived at Duke ER, and I was seen in triage within 20 minutes. They took my vitals and the first description of what I had experienced (I had to repeat this story 4 times to 3 different doctors/nurses). All of my medical records and medication history is in the Duke system (and online), so you'd think they could pull it up in Duke ER. You would be wrong. They only had access to stats from a past visit 5 years ago. Thank goodness I had printed out my long list of medications before leaving home.
But what if I had arrived without it, and in pain so great I couldn't concentrate to remember anything? I guess patients are screwed.
I was sent back out to the waiting room in a wheelchair. The room monitor said that wait times were extended because there was overcapacity in the hospital, backing up traffic in the ER as patients waiting to be admitted were being held in ER rooms. The wait time was supposed to be around 5 hours.
Kate and I sat in a room full of people in conditions you'd expect -- wrapped in blankets, lying on benches, coughing, sneezing. Kids crying. Some people with clearly minor trauma injuries -- one woman looked as if she had a bad cut on her hand and had it wrapped and in ice, many others there because they had some kind of respiratory condition/flu/cold.
All I could think about was what was going to happen when the pain meds I had taken before leaving wore off while sitting here waiting to see a doctor. I would be a screaming maniac if I had to stand up and bear weight on my legs.
A few hours went by; Kate wheeled me to the bathroom and back. She went to get a snack. I refused to eat because if the pain ratcheted up again, I knew I would throw up. I wasn't hungry anyway.
Time goes by slowly. Every two hours people were called up by the nurse to get their vitals checked (BP, temp, oxygen levels) and sent back to the waiting area. The TV had a football game on. Eventually the last evening of the Republican National Convention came on. I think ABC was on, and broke in when Clint Eastwood gave his speech.
[No sound was on, so you could only read the closed-captioning. Later the next day when I got home I realized that the captioning wasn't incoherent, it was Clint rambling on like your crazy elderly uncle.]
A few minutes later a gentleman rolled his girlfriend/wife next to me, facing me. She was in a lot of pain and distress, but it wasn't apparent what was wrong with her. I found out when she started hacking, wheezing -- she had no mask on, didn't cover her mouth and then proceeded to vomit. After the fact her husband goes and gets a mask and barf bucket.
People across the room were horrified, I was trapped there in the wheelchair. Kate got up and wheeled me away, but of course it was too late not to be exposed to whatever she had. The scary thing is that some of the RA drugs I take suppress my immune system. Even the common cold can land me in the hospital, so I've been told to avoid places like ERs, airplanes, large conferences if at all possible. Nice.
The "expertise" of the ER doctors - moving bodies out
Finally, at midnight, I get in to see a nurse, who preps me, puts an IV in and draws about 6 tubes of blood. The resident comes in and does the usual drill of asking me why I was there, what was believed source of the pain and where the pain was located. He does a cursory examination after I explain the locations of the pain.
He dismisses the possibility that Humira is involved, despite the drug's web site clear listing of side effects that included what I was experiencing. He thinks its some sort of issue with my spine involving my discs. He does this without doing any kind of diagnostic test, like an XRay. I asked him several questions about why my pain occurred suddenly, I had not had back problems before, and why he believed there wasn't a possibility of adverse reaction to Humira. His answers were, to say the least, poorly informed and he referenced some study about Humira that wasn't relevant to the particular problems I was experiencing. The main issue was that since he hadn't seen a reaction of the kind I was presenting that apparently I couldn't be in that 6% of people who do experience those side effects.
He suggests a muscle relaxer - Flexeril. I told him that in my chart I have contraindication for Tramadol, because it causes seratonin syndrome and that my rheumatologist had told me in the past that Flexeril could cause a similar reaction. He goes "oh yes, thank you for telling me that."
Damn. What if I didn't tell him? He clearly didn't read the Tramadol contraindication in my records.
He then said he would speak to the consulting doctor in the ER.
Well, I laid there in pain for a while, then doctor #2 comes in. She's a bit more on the ball; she doesn't dismiss possible involvement of Humira, but suggests a different reason for my pain than dr. #1 - sciatica. OK. So does this present so suddenly? Does it go away and resolve on its own?
She really doesn't offer any satisfactory answers, but does a better job than doctor #1 of CYA. What made no sense again was that she doesn't suggest getting an x-ray or MRI to help eliminate other possible spinal matters. Because I was persistent in seeking answers about what the source and origin of this sudden acute pain could be, she was clearly frustrated. She said did I want an x-ray. I said yes, I'd rather eliminate disc involvement if that can detect somethign obvious. She said OK.
Since Flexeril was off the table, she then said the nurse would give me Valium via IV.
I've never taken Valium, but my casual understanding was that it's a drug for anxiety, not pain, but what do I know. The nurse administers it and I feel the room moving, I'm dizzy. Since I have not been on my feet for 6.5 hours, the pain is not as acute because no weight bearing has been on them. I get wheeled to x-ray. I only have to slide from the gurney onto the table. They do a couple of views and I'm back on the gurney and wheeled back to the room.
I fall asleep from the Valium. Kate gets a blanket and sleeps in the chair next to me. About 90 minutes later, the doctor comes in and says she wants to see how I walk on the legs in prep to send me home. I walk with a nurse following me up and down the hall and to the bathroom. I am shaky and disoriented from the drug, but able to bear weight with some low level pain (~3). We go back to the room.
The doctor says the x-rays show no spine damage and that  I'll be given medication scripts told to make an appointment with my rheumatologist next week (after Labor Day, so that's 5 days later) and discharged. I was given a sheet with prescriptions for Valium (take 3x a day for pain), and 8 pills of oxycodone to take every 6 hours for pain. Now my math isn't very good at that hour and in that state, but there's no way 8 pills every six hours will last 5 days for acute pain that I was experiencing.
I realized at that moment what this whole rigaramole was -- the ER is probably full of prescription drug seekers and these doctors are so jaded that they have become immune to actually performing good medicine or even good cover your ass medicine. They think many patients coming in with pain want narcotics -- and they would probably be right -- but this display of dismissiveness and lack of desire for diagnostic tests that may be helpful go out the window when there are so many bodies to process in this busy ER.
The poor ER care was worse than I thought - and seeing my rheumatologist for follow up
So I get home and about an hour later, whatever "painkilling" properties exist for Valium had worn off. I was limping and barely able to make it up the stairs from the garage. I quickly get online to look it up. Valium (diazepam):
Diazepam is used to relieve anxiety, muscle spasms, and seizures and to control agitation caused by alcohol withdrawal
Nothing about acute pain treatment, it's a sedative. And, by the way, it didn't help with the muscle spasms either at 5mg. I emailed my rheumatologist at 3:30 AM and told her about the ER experience. Around 8 AM she called me (!) and said she wanted to see me and slotted me in for her last clinic appointment around 11:30 AM. Kate drove me in, and I was placed in a wheelchair since I was too weak for the long clinic walk.
The rheumatologist was able to access the official ER records from the visit, and told me:
  • They took the blood vials then ran no tests on it of any kind
  • The x-rays taken were not even done on the correct part of my back
  • Dismissing the possibility of Humira didn't make sense
  • Valium was mis-prescribed for the need
  • The 8 pills of oxycodone, which would actually address the acute pain, was a ludicrous amount given it was supposed to last for 5 days.
The rheumatologist performed some basic neurological and strength tests during the short visit that were revelatory in ways the ER doctors' assessment fell far short. My left leg, which was still numb and dead-feeling, failed not only a strength test (I couldn't pull hard enough against her hand to stop her from moving it) but she couldn't get a reflex from it when she tapped my knee.
Something neurological is definitely going on, now the mystery is what is it -- Humira or something going on in the spine? The only way to eliminate spinal involvement is an MRI.
Kate then wheeled me went to have blood panels drawn, then down to x-ray for a correct one of my spine. I'm going for the MRI on Tuesday at the Cancer Center. If it's OK, then it's most likely a rare reaction to Humira and I'll have to halt taking it just to be safe, let it clear my system and see if the symptoms abate. If there is spinal involvement, then I'll be referred to another clinic.
Now to recap...

I'm to stay off my feet as much as possible, ice the bursa, stretch as best I can, and take pain meds and not drive for several days until the pain and inflammation is under control and the MRI is analyzed.

  1. 11 hours in the ER = $250 co-pay = zero effective testing and treatment
  2. 90 minutes in Duke Clinic with my rheumatologist = $45 co-pay = effective testing and treatment and follow up.
I am grateful to have health insurance; but this incident should show you the waste and poor care we see because ERs are not the place for basic health care, yet they are full of people who are getting it through the ER instead of primary care physicians, clogging these waiting rooms for acute care that probably can be avoided. The doctors are overworked and stressed and in at least this case, seemingly focused on moving bodies in and out, trying to dodge drug seekers, and ultimately not providing the best assessment or care they can. And that also means a lot of people less fortunate -- without a caring specialist or doctor for follow up -- will end up right back in that ER waiting hours on end without ever receiving the care they need to heal.

Thursday, August 30, 2012

8/30/2012 Rheumatoid Arthritis Diary: horrible side effect while on Humira

I thought I was hitting the jackpot with Humira, a biologic drug that is effective for many people with rheumatoid arthritis. I had been on Enbrel for about 4 months and while the weekly injection did help with the debilitating joint pain, it made me sick (fever, chills) for about 2-3 days after taking the needle. That meant my weekends were shot -- I took it on Saturday -- so that I could be functional during the week at work. Not optimal quality of life-wise.
So I asked my rheumatologist if I could try Humira, which is taken every other week. It's in the same class of drugs as Enbrel, but works slightly differently, which meant a chance of less (or more) side effects, but it was worth the try to see if I could get more lasting relief without as much impact on my body.
Dose #1 went really well; other than feeling a little weak and tired the day following the shot, I had joint pain relief and no other side effects to speak of. So I was cautiously optimistic, knowing that sometimes side effects can show up with accumulated doses as your body adjusts to being hit by these sledgehammer drugs that can actually slow or halt joint damage caused by RA. I was able to go to my usual physical therapy for the bursitis in my left hip and recover quickly without joint pain.
And Dose #2 started off uneventfully as well this past Saturday through Monday. On Tuesday I was feeling a bit more dull muscle pain in my lower back and right hip (which is unaffected by bursitis), which was odd. And then yesterday I was pretty much fine -- at my usual 4 out of 10 on the pain scale.
The switch flips
However, while walking from my car in the afternoon to PT at the local children's hospital (it has a heated pool), it was like a switch was flipped in mid-step -- a lightning bolt of excruciating pain shot from my lower spine near the lumbar region of my back, completely 1) inflaming  a different bursa in my left hip 2) almost paralyzing the muscles in my low back, 3) a sensation of excruciating muscular and nerve pain down both of my legs to the knee, involving my hamstrings and quadriceps, and 4) inflaming bursa in my right hip. I went ahead and dressed for PT. I could barely get my swimsuit on.
Needless to say, I couldn't do many of the exercises or stretches in the pool that I was able to do easily just a couple of days before. I had to get out early. I showered and dressed -- which took a very long time since I had a hard time dressing. Lifting my legs required sitting down to put things on.
When I got home, I could barely unfold myself from the car.  I took 800 mg of ibuprofen, which took a while to work, and it barely cut the pain. I spent the rest of the night standing up and pacing. Sitting was excruciating. Standing was excruciating. Lying down was worse. Almost every position hurt.
Familiar side effect pain.
The minute the shooting pain that afternoon I recognized it.  The last time I had it was several years ago - a bad reaction to an oral medication (statins) that took several days to get to the same excruciating point. It was the infamous "muscle pain and weakness" warning they now give patients and you hear in the commercials, but it wasn't well known at the time. I was told to try different doses and kinds of statins, however, each gave me the same excruciating result after several days. And each time the low back pain and weakness would go away after stopping the statin.
Needless to say, I don't take statins any more.
So one of the things I did when I got home was look up Humira side effects again. And lo and behold:
Musculoskeletal side effects have included back pain in 6% of patients; and arthritis, bone disorder, nonspontaneous bone fracture, bone necrosis, joint disorder, muscle cramps, myasthenia, pyogenic arthritis, synovitis, and tendon disorder in less than 5% of patients. A case of severe myalgia has also been reported.
Nervous system problems. Signs and symptoms include numbness or tingling, problems with your vision, weakness in your arms or legs, and dizziness.
Back pain; headache; mild pain, redness, or swelling at the injection site; mild stomach pain; nausea; runny or stuff nose.
So I spoke to my rheumatologist this AM about the symptoms, so she suggested going to urgent care to be examined, and possibly putting me on steroids (don't want that; it will mess with my blood sugar control). Kate's going to have to drive me. I can't possibly handle it even though urgent care is less than a mile from home. I had to stand up and lean on a counter to even type this diary entry.

Monday, August 27, 2012

Calm down, peeps: Mittens didn’t pay Journey to play at the Republican National Convention

This post is clearly not for everyone—those of you who think Journey sucks can just move on to the next blog entry. Also, for the “No Perry, No Journey” crowd – let it go. This is not the place to stir up that argument.

My music and politics rarely intersect. Most regular Blenders know I have a long-time, unlikely obsession with the band Journey (and get enough grief about it to last a lifetime) so it was no surprise when my Facebook wall and email were populated with hysteria-laden messages about a story that Mitt Romney had paid the band $500K to play at the Republican National Convention.

If there was ever an apolitical band, it would be Journey, but I guess people felt I needed to address or respond to this “news” originally reported by TMZ. I already happened to know through my grapevine of GOP friends (yes, I do have them) some time ago about the gig, and that what was put out there wasn’t accurate. The band was hired, like many acts, for private events occurring in Tampa during the convention.
The facts: Journey was booked to play a private Creative Coalition party in Tampa on 8/30 that is going on concurrently w/the RNC. It’s actually a benefit for Citizens Helping Heroes, a “non-political, non-profit 501(c)(3) organization based in Washington, DC and dedicated to supporting those who selflessly defend our collective freedoms, primarily through their military service to our country.” The Creative Coalition has booked bands for private functions during the RNC and the DNC (the B-52s, btw, were booked by CC to play a private bash during the DNC). It’s a lucrative payday for the bands.

BTW, I have no idea about the politics of any of the band members (guitarist and founder Neal Schon, lead singer Arnel Pineda, keyboardist Jonathan Cain, bassist Ross Valory, and drummer Deen Castronovo); bands play private gigs we never know about all the time — and for classic or legacy bands, touring and private gigs are the big meal tickets. Of course for Journey, with Don’t Stop Believing as as the most popular single of the 20th century and a boatload of hits you all know well, Schon, Cain and former lead singer Steve Perry probably can financially coast on royalties/licensing alone.

It was ridiculous last night — I had to go on a mild Twitter fest with a fan who was apoplectic about the inaccurate news and was taking it out on Arnel Pineda, who 1) isn’t a managing member of the band, and 2) has steadfastly been about the preserving the legacy of the band’s popular sound, peace, equality, and definitely not politics. It reminded me how quickly folks get heated and personal on social media with only a tenuous grasp of the facts. It was just weird reacting to something outside of my normal sphere of political discussion. BTW, Arnel’s fans are known as Plokkers and hang out at his pad to chat with the singer from time to time.
Below the fold, some of my photos from the last Journey gig I attended (Raleigh, August 2011). I’ve got tix to see the band in Greensboro later this year; hopefully my health will hold out…

Blogmistress heaven: five new songs from ‘Eclipse’ debut in throw-down set by Journey in Vegas

* Music overload: my Journey immersion weekend

* The blogmistress trip to NY to see Journey on The Today Show

* Your blogmistress meets some of her Journey rock stars!

Here are some pix from my album
Deeno sitting in to play skins for Night Ranger during Sister Christian:
Jon doing a hot jam:
Neal rocking the house:
Arnel was working hard in some serious humidity. We were all soaked.
It was a thrill to meet Jonathan Cain — the man responsible for penning many of the hits most of you know, including Don’t Stop Believing. He was mellow, kind and thoughtful.
And yes, Arnel Pineda, the current lead singer, is as wonderful as can be. I brought him a Durham Bulls baseball shirt. The Bulls and my town were featured in the movie Bull Durham, and wanted for him to have something local to remember us by:

Friday, August 10, 2012

Romneybot 2012 major malfunction: Obama campaign, please don't talk about my business record anymore!

Please, someone break out the tiny violin and a fainting couch for the delicate Romney campaign. Apparently his Darth Vader approach to business at Bain -- leaving Jedi Knight carnage on the economic landscape by driving businesses into the ground -- is now off limits, according to Mittens. In an incredible interview with NBC's Chuck Todd, the all-but-nominated GOP presidential candidate is beside himself that the Obama campaign unearthed his Bain record. Now Romney deems his business history -- and with it his record of "acumen" he's been selling to the American people -- is now "personal" and wants Team Obama to leave it alone.
“[O]ur campaign would be-- helped immensely if we had an agreement between both campaigns that we were only going to talk about issues and that attacks based upon-- business or family or taxes or things of that nature."

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“[W]e only talk about issues. And we can talk about the differences between our positions and our opponent's position.” Romney said of his own campaign: “[O]ur ads haven't gone after the president personally. … [W]e haven't dredged up the old stuff that people talked about last time around. We haven't gone after the personal things.”
Bwahahahahaha....Uh, no. Huff Po:
To date, Romney has insisted that the attacks are personal, but the interview with MSNBC would be the first time the former Massachusetts governor has requested the Obama campaign to stop talking about his business record -- as he appears to imply in the quote.
But Romney himself has touted that same record throughout his candidacy, frequently making the case that his private enterprise background would enable him to serve as a better commander-in-chief than President Barack Obama.
Mittens, it's time for that Veep accouncement because this hilarious political meltdown is going to be all over the TV and interwebs all weekend.

Wednesday, August 8, 2012

People -- I can't speak, but that doesn't mean I can't hear or think...

The good news is that my vocal cords and cricoarytenoid joints near my larynx are not affected by my rheumatoid arthritis. That was my major concern last week -- about a month ago my voice started deteriorating for no apparent reason, and the muscles around my neck were inflamed. The trip to the ENT left me with a diagnosis of "muscle tension dysphonia":
Muscle tension dysphonia (MTD) occurs when the muscles around the larynx (voice box) are too tight during speaking, such that the voice box does not work efficiently. A person may use excess tension when speaking, and the voice may feel quite strained. Some patients complain that the throat feels tight or even feel a muscle ache due to MTD. The voice may sound strained or tight.
Why did this happen? I didn't put it together at first, but my guess on timing is that one of the meds I increased in the last month (Lyrica) to address the neuropathy in my feet may be the culprit. Its side effects have increased, including 1) increasing dry mouth and 2) edema or swelling in feet/ankles. Basically most of my fluid intake was going to my legs and feet each day, depriving my vocal cords of moisture; my muscles started tensing up because it hurt to talk. At night when my legs are elevated, the edema drains and I have to go the bathroom a couple of few a night. Then in the AM my feet and legs are back to normal size, and that cycle starts again. I was definitely not drinking enough either. Not a great incentive to do so when you're up at night peeing out all that excess fluid.

So, the "cure" is 1) voice rest, 2) PT, 3) drinking at least 64 oz a day (argh) to balance the impact of the Lyrica and get my muscles relaxed and my vocal cords adequate moisture. The ENT's sending me to voice therapy and PT for my neck and shoulder pain on Friday and Monday, but the big fun is my voice rest mandate for the week. No talking, save a few whispers will help reduce the muscle tension and strain. 
How's that voice rest working out at work?
This is amusing and frustrating to experience. When I'm at work I wear a clever button from the Duke Voice Center that says "I'm resting my voice" to remind me to shut up and to let people know I'm not being rude by not speaking to them. Even so, people come to my door, or see me in the hall and inadvertently do everything in their power to try to make me speak. Like asking how I am or why I'm wearing it is nonsensical, but it has repeatedly occurred.  Now I do know a bit of American Sign Language alphabet, but that's unhelpful if the other person doesn't know it.
This inability to communicate vocally is hard for people to wrap their minds around.  I've had work colleagues:
1) whisper at me;
2) speak louder than normal to me as if I cannot hear;
3) think my lack of voice means my brain isn't functioning ("I'll leave you alone," or "I'll come back later")
4) talk to me and still expect me to speak, as I mentioned above.
I've had to cancel meetings that I usually moderate and ask colleagues to email me with questions about reports that we would have gone over in the meeting. In one meeting that I attended but did not moderate, there's also a lot of awkward impatience involved (for me and them) with waiting for me to write out comments or observations to add to the discussion.
But this temporary situation shows just how ill-prepared the average person is to deal with a disability of this nature. Our ability to speak allows us to convey a lot of information in very few words. Body language (thumbs up, down, OK gesture), is pretty limited when you need to communicate detailed thoughts or nuances.
Those who can communicate vocally assert their privilege/ability to try to force the mute to communicate on their level even when logically they know the other person cannot speak. You can see the frustration on their faces; they'd rather avoid me rather than try to compensate for the communication delay. Well, of course -- a pad and pen is a poor substitute.  I've also had to whisper from time to time because of my frustration in moving conversations along so I can get back to work. They don't want me to break my vocal rest, mind you, they just don't know what to do, so they avoid. Oh, well, it gives me more precious time to do desk work.
I haven't tried this yet, but I suppose real-time chat, projected on a screen in a meeting would help things along, since I type faster than I write longhand.
Many singers and people who professionally use their voices a lot usually have to partake in voice rest from time to time to preserve their pipes. My experience with voice rest this week makes me wonder how they manage with the intense social pressure to speak when they shouldn't.

Saturday, August 4, 2012

When a trip to the grocery store is like running a marathon

Because of the larynx problems (vocal cords are shot), my rheumatologist said to hold off on the Enbrel shot this AM, until I can see the ear, nose and throat specialist on Monday to ensure I don't have any infection. Since Enbrel and all biologic drugs suppress the immune system, any minor infection can turn into a big problem and land you in the hospital.

Usually on Fridays the weekly Cinderella effect of Enbrel (my joint pain goes down to like a 2 out of 10) that lasts from Tuesday to Thursday winds down. So the bad news is that today my  rheumatoid arthritis joint pain and fatigue have returned with a vengeance; the good news is that the side effects of Enbrel (fever and chills) won't happen this weekend.

Trip to Harris Teeter schools me on my limit

Kate and I went to the grocery store to get supplies to prepare meals for the next several days. I started out feeling OK, a bit sore. I managed to limp around the aisles to get what we needed, occasionally leaning on the cart to stave off the searing bursitis pain in my left hip that the rheumatoid arthritis has "gifted" me over the last few months.  

God, we were only there perhaps 30-45 minutes but it seemed like an eternity. I told Kate that I was DONE. We got the packages home; Kate had to carry the heavy bags and I feebly got up the stairs with a couple of light ones. I am EXHAUSTED and in searing pain, just unreal and an unnatural fatigue. I'm typing up this post and then going to lie down. As I recall when these episodes happen (and it could be the fibromyalgia flaring up causing the fatigue). It is an unpleasant reminder of just how bad the chronic pain was before Enbrel. If all goes well at the ENT on Monday (no infection going on), then the Dr. will have me start Humira, another biologic that is taken by injection every other week.

One frightening thought -- this means I have to make it through the work week until next Saturday to take that Humira. Since I don't know how bad the side effects will be, I don't administer these meds on a weekday, so as not to lose time on the job. I just don't know how I'll endure this blowback flare pain for a week.

Thursday, August 2, 2012

Update on the mystery of the disappearing voice

Bonus points for the emergency situation while waiting in the doctor's office today.

Today I went to the rheumatologist because of the deterioration of my voice. There are a few possibilities - 1) rheumatoid arthritis attacking the cricoarytenoid joints of my larynx; 2) the biologic drug Enbrel causing some weird side effect, like nodules developing on my vocal cords; 3) an infection of some sort. Anyway, I had to miss more work to go to this appointment (already been out sick once this week; I had been doing well over the last couple of months on the Enbrel before flares started kicking up).

First fun event -- someone in one of the rooms where you wait for the physician either had a stroke or some sort of emergency, so my doctor and the EMS crew had to get her stabilized and I guess rolled over to the hospital from the clinic. The chaos included the EMS coming into my waiting room and thinking I was the patient in question and started to ask me questions. Hmmm. I was sitting there checking Facebook on my phone, so I hardly looked like I was having a stroke, lol. I directed him to the room across the hall...eventually the got the patient on a gurney and off to be checked.

Anyway, I have been extremely hoarse; after about 10 minutes of speaking it starts to hurt, and it feels like something is in my throat all the time. Surrounding areas near my throat and lymph nodes are inflamed. I've also been running a low grade fever for over a week (99.6-100). My thinking is I could have an infection of some sort. It's not uncommon on Enbrel, which suppresses your immune system, to leave you vulnerable to odd infections most people can fight off.

The rheum was concerned enough to refer me to the ear/nose/throat department for a Monday slot instead of the August 21 appointment they originally gave me. Since X-rays cannot detect what damage is in the soft tissues and small joints affecting the larynx/vocal cords, the ENT is going to have to put a scope down my throat to take a peek. Fun.

To be safe, the rheum told me not to take this Saturday's Enbrel shot until we conclude there is no infection present. If it isn't then she wants to switch me to another biologic drug, Humira. That is injected every other week. She's hoping this will reduce the amount of time and level of severity I am sick from the medication. At the present time my weekends are mostly filled with fever and chills and fatigue from the Enbrel. We'll have to see what Humira does.

And now that the RA has left me with bursitis in my left hip that is not helped by Enbrel, I've been re-upped for physical therapy at the heated pool at a local children's hospital for 8 visits. About all they can do for me is strengthen the muscles around the bursa to help some. I cannot have another steroid shot in my hip for a few months (too bad it only helped for about a week!).

Meanwhile, re: the disappearing voice, there's not much I can do except voice rest.  Fortunately don't have a lot of meetings that require that I speak a lot. Re: pain relief, I cannot take NSAIDS for pain because of my liver disease, and I cannot take muscle relaxers for the tightness that is giving me headaches since I have bad reactions to similar drugs. So I'm loaded up on the Icy Hot patches and lotion tonight to try to get some sleep.

Should be an interesting week getting along without Enbrel. My joint pain may return with a vengeance. Fingers crossed it's not completely debilitating.