Voltaren update

My husband went and got my Voltaren prescription filled this afternoon.  I always love sending him to the pharmacy.  The people there never talk to me outside of asking my name and telling me to sign here or there.  He goes in and they get all effusive and full of facts about the drugs I’m taking and how to take them most effectively.  I don’t know how he gets them to talk.  He thinks it’s just because he’s picking it up for me and is not me and they’re trying to be careful.  *shakes head*

 

Anyhow, 4 things: 1) This “really expensive” tube of medicine only costs as much as one session of PT, which I find to be really cheap since the PT session is only one of like 20 that need to be paid for and this tube will last as long as all 20 of those sessions for the low price of just one and 2) Voltaren did wonders for my unhappy thumb.  (My back, well, we’ll see.  I did a bunch of stuff while waiting for it to dry and I think I made my back pain worse than it was.  Will try on another joint tomorrow and see if it helps like my thumb.)  3. It does not burn.  That is so delightful!  4) It smells like old-school lysol, which makes me all nostalgic and hasn’t annoyed me.  So for now we’re cautiously optimistic.

Rheumatologist appointment

After I spent yesterday perusing the blog carnival about pain scales, I came to the conclusion that a) my pain level, regardless of scale, is usually only about 2 or 3 in a few joints, with occasional forays into 4s and 5s when I’m in a flare.  So when I had my 6 month check-in with the rheumatologist today, I decided that instead of asking for the next big gun treatment, I was going to ask for another stop-gap measure, something I’d read about on other people’s blogs that had never been offered to me: a pain relieving, anti-inflammatory gel.

 

I didn’t start off with that, of course.  I told him about my last few months, about how I only flare when I’ve got big things going on (of the stressful variety. ie. Thanksgiving or Christmas) or I do something exceptionally stupid (moving furniture, driving long distances, trying to do all the Christmas crafting in one week, etc.).  I told him about my prednisone tapers and how they’d helped.  I told him about my in-between days when I’m feeling all right and the days that I can barely move my fingers and I’m not fine.  He told me my next option was the IV drugs and physical therapy.  I said “No, thank you” and then mentioned the gel.  He said the only reason they hadn’t offered it was that it doesn’t always work and that it was kind of expensive.  “More expensive than IV drugs and physical therapy?”  No, not at all.

 

And so that’s what I’m doing.  More prednisone when I’m flaring (with a phone call in to the office to let them know), anti-inflammatory gel for the in between pain, working on my PT at home from my PT Folder o’ Goodness, and follow up in 6 months.

I know, I know….

….you’d nearly forgotten I blogged here.  I had as well.  I keep meaning to blog more, but mostly kept coming up with the same non-answers and/or depressing news, so I stopped blogging entirely.

I have been having the bad days again, though.  I put myself on a 10 day steroid taper, as per the doctors instructions for Times of Necessity.  The steroids made me glad to be alive again (and hungry as all get out.  I ate and ate and ate.  One day I got sick.  It was so not a good day, but it reminded me to be more careful.  Learning is always good, right?).

School started for the kids back in mid-August, which meant I did lots of shopping and resting and shopping some more.  Then PTA stuff started back up.  I’m homeroom parent coordinator, so I’ve spent lots of time making a database of which parent is willing to help with which activity for which grade (as well as all the contact info, which flummoxes me a bit because the school already has most of that info in a database somewhere; why must I copy it?).  I started volunteering a couple hours a week in the school library helping check in and out while the librarian teaches classes.  I also help out with shelving (I bring in my own kneeling pad & am allowed to scoot around in the wheeled chair when my knees are bad) and in the computer lab.  It’s more fun and life-affirming than you can imagine.  My husband thought it might wear me out, but it actually has been energizing me because it gives me a couple hours out of my own head.  Plus I get to talk to kids about books!  What could be better?!

Other things: I seem to be done with the sinus infections for now, despite living in the Land O’ Big Fires (seriously, if you looked at a map of Texas there’s a ring of fire around my town) and woah-allergies.  I do have a staph infection (probably mrsi, pending lab tests, according to Dr. H.) of a wound that I thought was just a blemish.  I got it the first day I used the machines at a new gym.  (They now have bleach wipes available)  More antibiotics, yay.  Just what every girl wants, right?  The good news is that the antibiotics will also save me from the pneumonia that the doctor thought it likely I might get due to the stress of the lungs from all the fires (apparently I was on The List of the Immune-deficient.  Also so much yay.)  Bad news: more yogurt eating.  I used to LOVE yogurt.  Now it’s like a more flavorful medicine.  I hate that “they’ve” made something as yummy as yogurt seem bad.  *sigh*

Other things: my insurance/pharmacy plan seems not to love my blood pressure medicine, so I’ve spent a vast amount of time on the website/and/or/phone trying to figure that out.  If I jump through all the right hoops in all the right order I can get it practically free (<4/month), but no one wants to tell you that up front.  You have to spend gobs of money and time on the phone (we don’t have a landline any more so any time on the phone=money spent) to find out anything and ususally half that time is spent on a call system that says “I’m sorry, I didn’t quite catch that.  What did you mean to say?”  which I find infuriating.  If they’d just use a person instead of a computer, they’d understand that I wanted to talk to a person in ther first place.

More other things: the temperature has finally dropped from a daily high of 105 to something more like 95. Oh what a difference 10 degrees makes in a day.  In the mornings I feel so much like a regular person.  The van is easy to drive.  My shoulders are down.  My body is stiff, but not achy.  It is such a goodness.  In the afternoon I no longer feel like deadness personified, but merely hot & sweaty.  I can make the kids a snack myself, rather than telll them what to get out.  Love, love, love it!  I cannot even express how much better it feels.  Just a thousand, million times better on the good days.

Not the update I thought I’d make

“No one is so brave that he is not disturbed by something unexpected.”
–Julius Caesar

I meant to make an update right after my last appointment with the rheumatologist, but it was mostly uneventful, so I kept forgetting to.  The long and short of it was that a) the enbrel + mtx hadn’t kicked in yet and b) I was having huge (6×8 inches) injection site reactions that lasted all week long.  The PA told me to take a double dose of my allergy meds before my next shot, as I might be developing an allergy,  and to call in & let him know if that worked for me.  And also to watch out for any numbness, tingling, fevers, infections, or coughs in the meantime.

I was all set to do just that a couple days later, but I started having cold symptoms, so I rested up for a day or so and postponed my meds, as per usual.  By Friday afternoon I was back to normal, but decided to wait one more day so as to get that double dose of allergy meds in for a full day before the enbrel.

Saturday I woke up feeling all right and planned to take my shot after lunch.  I went over to my parents house and hung out with them, listening to stories about their recent trip to Germany, looking at photos, etc.  As we were packing up to go back home, I started feeling a bit strange, just a bit dizzy.  I thought maybe I wasn’t over my cold after all.  We got home and I took a shower (we attend church on Saturday afternoon, so I needed to get ready).  The shower just made everything worse.  I started to feel discombobulated.  My brain was sluggish, words were slow to come, and my whole left side started tingling like it was falling asleep from a pinched nerve (fingers, toes, calf, arm, face).  I couldn’t tell if my hair dryer was blowing hot air.  I was having trouble looking to my left, though I experimented with closing my eyes one at a time and figured out that I could see in that direction, just not with both eyes open.  I definitely couldn’t make sense of the gear shifts on the car I was supposed to drive to church.  (The others had left before me because I was taking so long getting ready.)  I ended up calling my m-i-l to explain that I wasn’t coming and tried to get hold of my parents for help, but they were in the middle of something they couldn’t get out of.  So I stayed home, in my comfiest chair, and just tried to stay calm.  I dozed off and on.  My parents showed up and fed me toast.  My in-laws brought my kids home to me while my husband attended a meeting.  My parents fed the kids pizza & turned on a movie for them.

The next day I was more coherent.  I called my doctors offices and left messages for them on their services.  I stayed at home and let the kids play while I sat in my chair and pretended to read.  My husband had to work all day, but came back at meal times and fed people.

Monday I got up and felt like a regular person again, thank God.  I was able to feed the kids, drive them to school, and clean up the kitchen.  I talked to the nurse at the rheumatologists office a couple times and the doctor there said that none of this sounded like RA or side effects from my meds.  The nurse at my primary care physicians office said I needed to a) come in immediately and conversely b) the first available appointment was Tuesday at 2pm.  So I made arrangements for my kids to be picked up & watched by my f-i-l and made my way over to the doctors office on Tuesday.  I told my PCP the symptoms I’d had and he made the out loud wish that I’d gone to the ER on Saturday.  I explained my insurance situation: I just now paid off last years ER visit this week, most of it out of pocket because while our local ER is in network, none of its doctors are in network and the hospital where the doctors are mostly in network, none of the lab testing is in network.  It’s terrible. And also: I could NOT drive and I was home alone and the neighbors were all off at birthday parties and barbeques and work.  Ahem.

Anyway, the PCP told me that basically my symptoms lead him in two directions: a) stroke and b) multiple sclerosis.  We had already discussed my family history of stroke and had started me on beta blockers to keep that at bay, but did I happen to have a family history of MS?  Well, yes, of course.  My birthmom had 15 siblings and my birthdad only had 1, but between to the two families we have histories of: breast cancer, lung cancer, MS, rheumatoid arthritis, stroke, heart disease, high blood pressure, high cholesterol, mental retardation, undisclosed mental health issues, ADHD…the list goes on and on. So the PCP starts a few sentences like this: “When dealing with an MS diagnosis…” To which I reply “Are we dealing with an MS diagnosis?” and he states “We still have to do testing, but it’s the best fit for the symptoms you have had and are continuing to have.  We’ll draw blood today to rule out any other issues and do another brain MRI and send you to another neurologist.”  And then he left the room, leaving me to my tears.  Not that he’s a bad doctor in any way, but at this point he could see I just needed to be alone and so he went out to talk to another doctor about me (either I have really good hearing or all doctors offices have really thin walls — also, the other doctor, she agreed with the MS conclusion & further testing “just in case”).  I moved on down the hallway for another blood draw, my second this week.

The MRI people called & said that my insurance required 7 days for paperwork and that I could have the scan on the 26th.  The neurologists office called & left me a message (it went straight to voicemail without ringing, which was weird) that the earliest available new patient appointment was June 16th, which was also weird, as I’m already a patient at their office (though with one of the other doctors – who sees me for my now-nearly-extinct classic migraines).

Here’s the thing: I’ve been through all this already.  Seven years ago I started seeing the doctor for numbness & tingling.  I’d been having it off and on for a while without any other symptoms that I could tell that came with it.  It came and went at random.  I had nerve conduction studies, a brain MRI, cervical scan, blood tests, the works.  I saw a neurologist & she said I had migraines, which I totally agreed with, as I’d been having them for years – the painful kind that tryptins took care of quite nicely.  I went on a beta blocker for a while, but while it worked, it sent my blood pressure so low that I blacked out a lot, so I was told to quit that.  Eventually, through trial and error, we discovered that it was my birth control causing my migraines, and so after my 3rd child was born, my husband got a vasectomy and I went off birth control.  I’ve had a grand total of 3 migraines in the 4.5 years that have followed (and those only after extreme heat exposure), which is nothing compared to the 10 I got per month before that.  But the neurologist never found anything else wrong with me.  She said that my brain scans looked good, with only a couple little spots from the migraines (she was quick to point out back then that migraines produce similar bright spots on MRI’s to MS and that in my case, these teeny tiny spots were migraine related).  My blood tests, though, those had some weird numbers.  The PCP sent me on to the rheumatologist for a second opinion, but the PCP thought my numbers looked like rheumatoid arthritis.  Well, you know where that lead…

So fast forward seven years.  I’ve still had the numbness and tingling off and on.  Sometimes it’s better and sometimes it’s worse.  At its best it runs in and out and off and on and isn’t terribly noticeable.  At its worst I’ve feared driving and cutting vegetables and have been very careful when holding my kids hands and giving hugs because I just can’t tell what I’m doing or how hard I’m pressing.  I’ve had a few other weird things go on that I haven’t talked a lot about with anyone, let alone a doctor, because despite all this blogging, I’m actually quite a private person, and can’t bring myself to mention some of the more embarrassing details even to someone who loves me unconditionally.

Thursday I had this very coincidental God-moment.  I’ve had this acquaintance, this person who used to teach one of my sons, who I taught alongside for a month once, who has a child in my youngest childs classroom right now, who I’ve known for about 7 years.  We’re not really friends, but we chat in the hallway when we see each other and we’re friends on FB.  We both like Russian literature and anything British, so we’ve been chitchatting about the royal wedding.  I’d gotten an email about some printables for a Kate-&-William party that I was going to send on to her, even though neither of us really has time to do that, it was cute.  And even though I’m great with computers, I still can’t send a private message through FB without messing up and hitting the profile of the person rather than just the send message bit.  So I ended up on her profile, staring at her links she’s posted and one of them is “What is MS?” and her comment is: “I won’t let this get me down!”  So I email her instead “Hey, not to be nosy, but what do you know about MS, because I’m going through testing again and to be honest, I’m worried.”  She called me right away and we chatted away for an hour and a half without stopping until I had to go because my husband was at the door for lunch.  She was diagnosed last fall, after a bunch of random weirdness that led to her collapsing one day and being hospitalized for four days.  I told her all of my symptoms, even the ones that I didn’t know were symptoms, those little half-forgotten things that I thought were just my own person weirdnesses, and she said yes, yes, yes, and oh-my-God-I’m-so-sorry.  She told me about the local support group (meeting that night) and how my story sounds so similar to ones she’s heard there.

Anyway, I didn’t go to the support group.  I’ve been through this once and nothing came of it (but the RA).  I can’t just go to a support group for a disease that I don’t know that I have yet.  I know that this is one of those tricky ones, something diagnosed by exclusion, but to be honest, I haven’t quite gotten up the courage to look at the symptom list, to go ahead and research this, because I’m afraid of what I’ll find.  I don’t want another disease, even if it’s one I already have that I don’t know about yet.  I like this current state of willful ignorance.  In another week I’ll have the brain scan and if it looks wrong, then they’ll push me through to the neurologist sooner.  If not, then I have until June 16th to wait on answers and I’m not sure I want to sit around waiting, knowing yes, I fit all these symptoms, but don’t have the right test results.  I’d almost rather just not know, which is, to be honest, kind of a first for me, because as much as I hate the regular news on TV and such, usually I’m the first person to say “Hey, let’s look that up!” when a question comes up.  I guess I just haven’t been this scared in a long time.

The depth of winter

“In the depth of winter, I finally learned that there was in me an invincible summer.”

–Albert Camus

After spending a couple days checking and re-checking my blood pressure and looking up many scary things online, I got to see my primary care physician.  I brought with me my chart of blood pressure readings (scary bad the first day, great the day I had no kids home, up and down a lot today), my chart of medications I’ve just stopped taking and the ones I’m about to start, and my biological-family-medical-history chart.  The doctor took a look at the numbers on my chart, the ones in his computer going back the 7 years I’ve been visiting him, the results from two echocardiograms (one more recent, one ancient).  He told me that while yes, my numbers are slowly rising, he’s not especially worried about it.

I thought I was home free as he typed a bit on the computer, stopped for a moment, and looked at me.  “Wait, what’s your family history again?”  I knew this was coming, so I was prepared: my biological mom has high blood pressure and some sort of heart issue, as do three of my four half-siblings (the ones older than me by 5-15 years)the fourth is younger than me by five years).  One of my siblings has had two heart surgeries, another has had three strokes in the last three years.  Two of my biological aunts have died of heart attacks, but both were 50 years old or older.

The doctor visibly gulped.  “Well, that changes everything.  With such a strong family history of cardiac problems, we’re going to have to take steps to make sure you don’t have the same problems your siblings have had.”  He went on to explain what kind of medicine we’d be looking at, as well as lifestyle changes I’d need to make, and when & how often to take my blood pressure for the next three weeks. I, of course, asked if all this was necessary because as scary as my family history sounds, I still thought that since my numbers seemed okay over the years that we shouldn’t have to take a big step like this.  He said “You want to live, right?”  That’s what sold me.

I left the office with a prescription for the lowest dose of the least little blood pressure medicine you can get.  I was told that the major side effect is fatigue, but that should be gone in about 4 weeks.  Fatigue.  Ha.  I laugh at fatigue.  (Or as my best friend said: “Maybe you’ll get over your insomnia and get some sleep finally.”)

I spent the next couple days explaining things to my family, not just about my blood pressure, my stress levels, and my new medicines, but also to my parents about the RA, its effects on my life, the things they see and can’t see.  It was a good, but surreal set of conversations, but in the end the thing that most struck them  came down to this one thing that I had to say: I am determined to be cheerful, no matter what is thrown at me.  I can’t change any of that, but I can always choose to have a good attitude.  In the depth of my medical winter, I can have an invincible summer in my soul.

Appointments, & Moms, & Hypertension, oh my!

“A newspaper is a circulating library with high blood pressure.”

— Arthur Baer quotes

I went in to see the rheumatologist yesterday and two things were different.

One, my mom came with me.  She doesn’t normally.  While she has a house in my town (around the corner from mine), she technically lives in another town, so she’s never been to the rheumatologist with me (and also I’m 34, so I really think I ought to be able to go to the doctor on my own, yes?).  Lately, though, she’s been wondering about this RA thing I talk about.  When I was first diagnosed with RA, I found it  was a bit of a relief, after years of random symptoms that no one knew what to do with.  I got all my paperwork, did lots of research on the subject, shared brochures with my parents, etc.  But apparently they either a) didn’t read any of those or b) had forgotten it entirely — I’m going with “a” since my parents forget nothing. Anyway, they’ve been in my town a lot this semester – my dad’s on sabbatical – and have been able to see a day-to-day version of their daughter that they didn’t expect to see.  They got to see first hand how the disease is treating me and it was scaring them.  So, despite my saying she didn’t need to come, she came with me to my appointment.  She was surprising quiet during the time the doctor was in the room and looked through all the papers I brought with me for the doctor.

Two: my big surprise of the morning turned out to come from the nurse.  She took my blood pressure not once, but twice, each time getting an abnormally high reading from me.  After the doctor and I talked about the next drug I’m going to try (Enbrel again, this time with mtx, as I am continuing my quest to try things untried before going for the IV medication), he mentioned that my blood pressure had been steadily rising appointment to appointment over the last several months.  He suggested that I go see my PCP for an evaluation of my hypertension.  Now I’ve seen the word hypertension before, knew it had something to do with the heart, but I’ve never really read those heart-related articles before (they don’t relate to me, right?).  So I asked what this all meant, he explained, and I was horrified. I had a few extra little blood tests run on top of my normal ones

After the appointment, I called my PCP’s office and made an appointment for Thursday afternoon, their only available for the rest of the week (they are having a rough time over there since one of their doctors left to do Doctors Without Borders).  My parents loaned me their spare blood pressure machine, as they haven’t been checking their blood pressure regularly since they started taking medicine for it (although they say that their blood pressure is way worse than mine even on a good day – but they don’t eat right or exercise either – also, I’m adopted, so their blood pressure woes are not related to mine).  Anyway, I looked up hypertension and the DASH diet, which we actually surprisingly already follow, and am now prepared for my next appointment with the PCP.

I talked to my mom about my appointment, which she agreed went well and seemed as though I was doing all the right things for my health – she was apparently concerned that I wasn’t trying hard enough to be well, which of course left me boggling.  I explained to her my system of medication, my daily physical therapy that I do at home, and all the helpful accoutrements of a living-with-RA lifestyle (oxo brand kitchen gadgets, the tricky laundry dance Nick does with turning big bottles of detergent into little ones for me, etc).  She was a little dazed by all of this.  I guess I make living with RA look easy from the outside.  Go me!

(ok, so the quote doesn’t exactly go, but I’ve had that one in my stack of favorites for a long time and nowhere to use it.)

Arava update #2

Well it’s been a month since I started the Arava so I thought I’d do a little update here about it.  To be honest, I’ve been having quite a flare, which I hadn’t had at all during my time away from meds, so I’ve been feeling awful.  The Arava is doing little-to-nothing for me and the Naprelen is only taking the barest edge of the pain off me.  I’ve been adding extra Tylenol & Ibuprofen in round the clock and still am spending several to many hours a day in a chair with my heating pad.  It is painful and frustrating and I hate it.

 

Next Tuesday I go in to see my rheumatologist again to see how I’m doing.  In the meantime I’m going back on the prednisone so I can function again.

Better late than never

“So what do we do? Anything. Something. So long as we just don’t sit there. If we screw it up, start over. Try something else. If we wait until we’ve satisfied all the uncertainties, it may be too late. “
Lee Iacocca

 

 

A couple months ago my rheumatologist pulled me off all my meds and told me to wait out my current cycle of sinus infection, sinus infection, sinus infection.  I decided that if I was going off the good stuff, I may as well go off everythingeverything, supplements included until this all panned out.  So I did.  I went off everything.  Thanksgiving (all five of them) came and went.  My husband traveled a whole bunch.  We got ready for and had Christmas and all the school & friendly events that that entailed.  I smashed my head into the kids bunk beds one night and then the trunk lid fell on my head not once but twice in a week’s time and I ended up with a concussion and have been suffering from some post concussion symptoms.  But that’s not what you want to hear about.  You want to hear about how my RA went without the drugs, right?

 

Here’s the surprise: being without drugs was very similar to being on the drugs, but with the added bonus of not having any of the nasty side effects of the drugs.  I wasn’t nauseated (until I hit my head, that is) and I wasn’t exhausted and my mind wasn’t cloudy (again, until the head injury).  I was actually quite well.  Sure, my knees were inflamed and my hands and my hips and oh, the back pain.  Actually, the back pain was really all that was awful.  Everything else was just more of the same, but maybe a little bit worse than usual day to day with the drugs.

 

So by the time I went back to see the rheumatologist again I’d decided something: I wanted to go back to the beginning.  No, not to the drugs that I already knew didn’t work, but I wanted to go back to just a DMARD and an NSAID.  I wanted to try something I hadn’t tried yet and I wanted to start small and really give a new drug a chance to work before being taken off of it after a couple months.  So I went in and we checked his handy dandy chart of what was available and what I hadn’t tried and we settled on Arava (leflunomide) and Naprelen (naproxen sodium).  I’m taking the lowest dose possible for the next 6 weeks and then we’ll see where I’m at (and do those all important blood tests that we’d been lax about lately).

 

The only problem?  I got a phone call from the doctor’s office later that day saying that the pharmacy didn’t have my drug in stock in the right dose and that I’d have to cut them in half for a while.  No problem, I thought.  Then I got a call the next day from the pharmacy saying it still wasn’t in.  Friday (three days later) it finally was, but had to send my husband out for it, as I was busy with my parents.  He talked to the pharmacist who had tons of instructions (usually they say little-to-nothing to me when I’m in there), and the pills were little triangles, so I had to go back in on Sunday.  When I talked to the pharmacist he told me that a) I shouldn’t touch the pills unless absolutely necessary, b) I shouldn’t cut them until the day I use them, c) I need to take them precisely 12 hours apart (set an alarm!), and d) these pills are very hard to come by, so expect delays in getting them or differing dosage of pills or having to come in a couple to a few times a month to pick them up.

AIE.  At this point I really wondered if it was worth it, but it’s the only DMARD I haven’t tried and as the pharmacist pointed out: “What’s better: to find out that this inconvenient drug is the best thing I’ve tried or not to try at all and miss out on something that might do wonders for you?”

 

So I’m on to day 2 of the Arava/Naprelen combo.  Yesterday I was very easily flushed (I have super sensitive skin) and a bit nauseated when dinner ran late.  Today I’ve been fine.  No side effects yet.  *crossing my fingers*

Good Parts Version

The true genius shudders at incompleteness – and usually prefers silence to saying something which is not everything it should be.

~Edgar Allan Poe

 

I’ve had so much trouble posting anything lately, be it on this blog or some other. I haven’t been able to write an email or speak to a friend or make a decision at all about anything. I’ve been wallowing in my silence, loving my hermitude, staying quiet so as not to say the true, hurtful, sad things that are in my heart lately. I started a whole lot of posts without posting them (which is why there are so many in your feeds this morning: I finally just pushed “Publish” on all of them).  One I posted, but decided it was far too personal, so I’ve friendslocked it.  I actually feel better about strangers reading it than friends, so if you’re interested in reading it, let me know in the comments and I’ll work on emailing you a password.  I know that seems crazy, but crazy is what my brain is all about lately.  I cannot remember a thing for more than 10 minutes and usually not even then.*sigh* Consider this post the Good Parts Version of that post. 😉

 

Back to the updating: I’ve had brochiolitis the last few weeks. My regular doctor was, of course, not available the day I went in so I saw the new doctor in the practice (the old on-call guy went off to do a stint with Doctors Without Borders, which I had up-til-then thought was just some TV gimmick). The new guy was appalled that I didn’t know all my latest lab results either by heart or by reference (I don’t receive them at all). He kept reiterating that I had a serious medical condition and that I needed to take care of myself better, not let myself get into this condition that he found me in, to make sure I knew my test results and was following all my instructions to the letter. “Well,” said I, “the rheumatologist doesn’t send me my scores, and hasn’t given me any instructions other than ‘here, take this.’” This new doctor and I had a weird moment wherein I asked him to tell me what he’d tell his wife, were she in my condition, to do (he having pointed out that our children were at the same pre-school previously). He actually stopped and thought at that and told me that I must keep on as best I could and I assured him that that was precisely what I was doing.

 

So about a week later I found myself back at the rheumatologists office seeing the PA once again. This time I asked for my lab results, was instructed several different directions by several different people about how to get those (I’ll be calling later today to re-request them, which was one of the instructions). Then I got to talk to the PA, explain to him that since I”d last been in I’d had one sinus infection, one tooth abscess, and one ongoing case of brochiolitis and that no, I hadn’t been taking my Humira regularly, as it says to stop taking it if you had an infection, and I pretty much always have one. So he went out in the hallway to consult with the rheumatologist, who quite calmly stated “I don’t know what to do for her.” Really guys? I can hear your through the walls. The PA came back in and said “Why don’t we try this: stay off your RA meds until after the holidays. Get healthy again. Avoid the flu and the colds and all that. Then come back in January and we’ll start over.” I’m sure you can tell how pleased I was at that statement.

I’m trying to look at the bright side: no drugs means no side effects, right?  No drugs means I can have all the alcohol my heart desires (within reason, naturally, as I don’t want my liver to give up).  No drugs means no needles.

 

Humira update

I had another appointment with the PA at the rheumatologists office last week.  I walked in, waited just long enough to pull out my book, then got called back immediately.  The PA saw me just a few minutes later.  It was back to what I was used to, appointment-time-wise.  (School is back in session, I could go in during the early morning.  Whee!)  🙂

Anyway, I talked to the PA about how the Humira isn’t working yet, but it’s only been about 4 weeks, so I’m being patient.  I had been feeling pretty decent up to that point, just the regular amount of pain & swelling, but nothing flare-leveled, so being patient was not that hard.  He was concerned (although I still don’t see why: he told me himself that it could take up to 6 months for it to function properly) and talked to me about adding methotrexate back in, since Humira works best in conjunction with it.  I was hesitant about that, since I haven’t had another sinus infection since I stopped it a couple months ago, but agreed to start it once again if the Humira didn’t kick in by the next shot.  So that’s what I’ll do.  I follow up with him in a couple months.

About two days after my appointment I started flaring.  I didn’t recognize it at first.  I thought maybe it was the chair I was sitting in that was making my shoulder hurt.  And maybe that I was standing up too much and that was why my knees were hurting so bad.  That I was using the computer more, which was causing the finger and wrist pain.  A couple of days later my husband pointed out that I don’t use that chair unless my knees are already hurting, that I was using the computer less because I wasn’t checking email as often, & that I was, in fact, flaring.  Oh, and also you are experiencing that brain fog that leaves you unable to recognize the whole pattern.  Yay RA!

So now the flare is gone again, I’m back to having another head cold, crossing my fingers that this one doesn’t have a sinus infection attached, and postponing my Humira shot & methotrexate until after the cold goes away.