"'Hope' is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -"
I have been feeling really good lately. Like, really good...about as good as I felt before I was diagnosed with RA, before Emily came along, before I took up running in 2008 and noticed some suspect swelling in my hands when I ran on particularly warm days. My joints have felt great, the bursitis in my left hip has been practically non-existent, and since I got trigger point injections, I've had hardly any muscle spasms in my neck and shoulders. If it weren't for the migraines, I wouldn't even feel like a sick person.
“Be faithful in small things because it is in them that your strength lies.”
I woke up on Sunday feeling like I had been hit by a truck. My body ached, literally, from my head to my toes. My quads were so weak and on fire that any time I wanted to get up, or even change positions, I had to use my arms to move my legs. I couldn't get out of bed without JW's assistance, and the range of motion in my left hip sucked so much that I limped around all day.
It was probably naive of me, but I wasn't really concerned about any of this. It made sense: I went running on Friday, for the first time in seven months, worked a busy shift at the restaurant, and then played on a team in a charity softball tournament the next day. Maybe the soreness was a bit excessive, but I figured I'd feel a lot better on Monday. Even my worst pulls and spasms are always better on Day 3.
“Life's under no obligation to give us what we expect.”
Monday was still a little rough. I was walking pretty slowly and feeling pretty blah in general. On Tuesday my thighs burned as I walked down a couple flights of stairs in a parking garage.
I knew something was wrong when "that muscle" in my neck - the one that was tamed with trigger point injections - started to get an ache that I can only describe as being "yucky." (When one of my muscles or tendons gets particularly inflamed, I feel this gross, unsettling pain. It's almost like the pain you get when you have a cut that's become infected. I can't think of a better way to put it.) It traveled down my upper back in the space that runs between my left shoulder blade and spine, and settled in. Since my hip was still hurting, and laying on my back wasn't comfortable either, I ended up sleeping on my right side.
On Wednesday, I woke up with my right arm tucked up under my pillow. And I felt it.
Pain.
Not myofascitis pain, or pain from bulging discs, or whatever the hell has been torturing me for the better part of a year. It was the type of pain that made me wince - not because it was particularly bad pain, but because there would be a split second where it got so much worse before it got better.
Today, my hip is screaming. My elbows and shoulders ache. My knuckles are puffy, their wrinkles ironed out at the first interphalangeal joints.
My first RA flare in months.
“She wasn't bitter. She was sad, though. But it was a hopeful kind of sad. The kind of sad that just takes time. ”
I would be lying if I said I was caught by surprise. I knew it was coming. In the back of my mind, I knew. But I'm still sad, still disappointed. Who wouldn't be, honestly? For the first time in years, I didn't feel like someone who had RA. For weeks. If you're chronically ill, or have been, you can surely understand what it feels like to be ever-conscious of it. To have that go away, even for a day, is huge.
"We must accept finite disappointment, but never lose infinite hope."
I could feel defeated, and I did feel defeated; at least at first I did. I went without any significant RA symptoms for a prolonged period, and they came back. No matter how many times they go away, they will always come back, because I have a disease that has no cure. It's hard not to feel defeated once you start thinking about it...and then I thought about it more.
I went without any significant RA symptoms. For a prolonged period.
Without DMARDs. Without biologics. I didn't even need pain medication.
I think it's obvious what the silver lining is here.
Showing posts with label symptoms. Show all posts
Showing posts with label symptoms. Show all posts
Tuesday, May 21, 2013
Sunday, April 28, 2013
you may have an amazing doctor if...
...you can speak and not only are you heard, you are listened to.
...you are spoken to and treated like an equally capable, competent, and crucial component of your medical care.
...you feel like a crazy person when you express your anxiety, and you receive reassurance that confirms you are a little crazy, but in a perfectly normal way.
...when you mention that you haven't taken your meds in two months, the response doesn't make you feel like you are being judged...
...but in that same response, the purpose and importance of these medications is reiterated, without it turning into a lecture.
...your concern over the recurrence of side effects is met with understanding, and a promise that your overall well-being is tantamount to any conventional loyalty to a particular drug or pharmaceutical company.
...you can see that every patient is treated like a priority.
...you leave the appointment feeling optimistic, regardless of whatever news you've received.
...you are spoken to and treated like an equally capable, competent, and crucial component of your medical care.
...you feel like a crazy person when you express your anxiety, and you receive reassurance that confirms you are a little crazy, but in a perfectly normal way.
...when you mention that you haven't taken your meds in two months, the response doesn't make you feel like you are being judged...
...but in that same response, the purpose and importance of these medications is reiterated, without it turning into a lecture.
...your concern over the recurrence of side effects is met with understanding, and a promise that your overall well-being is tantamount to any conventional loyalty to a particular drug or pharmaceutical company.
...you can see that every patient is treated like a priority.
...you leave the appointment feeling optimistic, regardless of whatever news you've received.
Monday, April 22, 2013
this much concentration may make my head explode
I had a post all planned out (well, loosely outlined in my head) about my rheumatology visit today and I was really looking forward to it. I was going to gush about how Dr. Awesome is pretty damn near being my favorite health care professional of all time, next to the labor & delivery nurse who got her other patient covered to ensure that I got the drug-free birth I wanted. I don't even remember her name, but I'll never forget how she spent the last hour - which was the majority of Emily's labor - coaching me through it. (I still can't decide if it would be classified as precipitous labor since I had not only contracted uselessly for weeks beforehand, but also had the occasional painless contraction once my water broke in the wee hours of the morning...since labor didn't
start until six hours after that, and then lasted about an hour and forty-five minutes, I think I can claim it. For the record, it was pure insanity. IN-SAN-I-TY.) Without her I think I would have completely fallen apart...for real.
Then the migraine that's been torturing me like a schoolyard bully became worse again. It keeps teasing me, backing off and lingering right around the corner before jumping up and punching me in the face.
So not only is it exacerbated by the eye strain that comes with sitting in front of a screen and scanning back and forth as I read, but I'm also in a perco-fog after finally yielding to its half-hearted promises of respite from the pain. It took an entire episode of The West Wing to muddle my way through that first paragraph.
(For the record, I'm not writing this in an attempt to garner sympathy; we all have our issues to deal with, whether they're physically painful, mentally taxing, emotionally draining...or not that affecting at all. To put it simply, if I don't get mine out and try to at least lighten them up a little, I won't be able to focus on anything else.)
I was sadly excited to write all about why Dr. Awesome is so awesome, but it'll have to wait another day.
I've been laying pretty low on my alcohol consumption and drinking a literal gallon of water every day in the hopes of discouraging the migraine from beating the hell out of my brain, but since, as one of my chronically awesome friends put it...
...I'm just going to indulge anyway. Can't let them take away everything that I look forward to.
Then the migraine that's been torturing me like a schoolyard bully became worse again. It keeps teasing me, backing off and lingering right around the corner before jumping up and punching me in the face.
So not only is it exacerbated by the eye strain that comes with sitting in front of a screen and scanning back and forth as I read, but I'm also in a perco-fog after finally yielding to its half-hearted promises of respite from the pain. It took an entire episode of The West Wing to muddle my way through that first paragraph.
(For the record, I'm not writing this in an attempt to garner sympathy; we all have our issues to deal with, whether they're physically painful, mentally taxing, emotionally draining...or not that affecting at all. To put it simply, if I don't get mine out and try to at least lighten them up a little, I won't be able to focus on anything else.)
I was sadly excited to write all about why Dr. Awesome is so awesome, but it'll have to wait another day.
I've been laying pretty low on my alcohol consumption and drinking a literal gallon of water every day in the hopes of discouraging the migraine from beating the hell out of my brain, but since, as one of my chronically awesome friends put it...
@cakeumms Because migraines are assholes. *hugs*
— Jenny (@jenrobinegan) April 22, 2013
...I'm just going to indulge anyway. Can't let them take away everything that I look forward to.
Sunday, April 7, 2013
why I (unceremoniously) fired Dr. Rheumy
This is a long post, but it's also a long story, so I'm going to tell it in its entirety. I've got painsomnia/medsomnia tonight, so I might as well be thorough if I'm going to be laying here awake regardless!
Back in the spring of 2012, my feet started falling asleep. The numbness began at the metatarsal region and sent pins and needles through my toes. This had been happening for years during exercise, when I would go running in shoes that weren't quite right (too small for my size 11's, too narrow for my twisted toes, not built for over-pronation, etc.), which was annoying enough. I became concerned when it started happening for no discernible reason and with no obvious pattern. I had also begun to have some mild burning and muscle weakness in my right ring and pinky fingers. I've read articles from some pretty reputable sources - Hopkins Arthritis, for starters - that people with RA can experience peripheral neuropathy, so I brought it up to Dr. Rheumy.
He immediately dismissed it as something that isn't related to RA and had no interest in trying to get to the bottom of it. If I recall correctly, I think I brought it up on three separate visits, and got the same reaction each time. It was Dr. Primary who referred me to a neurologist, who ran a nerve conduction study and attributed it to - you guessed it - my RA.
Around that same time I woke up one morning, sat up in bed, and immediately went back down, in searing pain. Some muscle, somewhere in my neck or shoulder, had seized up and left me in a perma-shrug. It was so bad that I had to call my husband, who had just left for work, and ask him to turn around and come home. Dr. Primary's office didn't open until the afternoon that day and so I went to an urgent care office instead. The doctor there said I had a muscle sprain and prescribed Flexeril, a muscle relaxer. I went to Dr. Primary the next day because the Flexeril had turned me into a zombie, so he prescribed Skelaxin instead, which is milder and doesn't leave me stuck in an all-day nap.
I had also been having neck pain and was concerned about the possibility of cervical spine disease activity, so on my next visit to Dr. Rheumy, I brought it up to him. Once again, he dismissed my concerns and told me that RA doesn't affect the spine, even though it's another well-documented extra-articular manifestation of the disease.
I decided I was done with Dr. Rheumy when I needed to reschedule a routine visit with him that April. I had to bring Susannah to the dentist for an emergent visit and the next available appointment with the pedodontist was at the same time as my appointment with Dr. Rheumy. I called his office and was told that there were no available appointments until July - two months later! It had already been two months since my last visit, and waiting until July was out of the question, especially since I had been flaring. I researched rheumatologists on Vitals.com and Healthgrades.com and booked an appointment with a very positively-reviewed doctor in my area.
My first appointment Dr. Awesome happened to coincide with the next major episode of muscle spasm in my neck. I knew I liked him immediately when he didn't rush me in and out, even though the office was packed. He sat and spoke with me about my medical history, my symptoms, and my treatment plan for a half hour. (!!!) When I told him about the neck pain, I didn't even have to ask whether he thought it was related to my RA. He was right on top of things and sent me right over to their radiology tech for some x-rays. (I love that they have x-ray, labs, AND an infusion center on-site!) Those of you who have chronic conditions know how hard it can be to convince a doctor to order even simple diagnostic testing, especially on the initial visit. It was like I had walked into a spoonie's dream!
Dr. Awesome saw that my cervical spine was so tortured by muscle spasm that not only was it straight (it should curve toward the front of the neck), it was actually starting to curve in the wrong direction. He also saw what looked like potential rheumatological activity at the odontoid process. I left that appointment with a script for Skelaxin every 8 hours for one month, to relax my neck, and an order for an MRI.
Thankfully, especially considering atlanto-axial instability can cause serious neurological damage, and even death, the MRI showed no issues in that part of my cervical spine. The downside was that it did show two bulging discs impinging on the thecal sac, which is the membrane that surrounds the spinal cord. I was in a minor car accident back in college, and that's the only event I can think of that would have led to cervical disc disease.
Needless to say, it was a relief to find a rheumatologist who does not dismiss my concerns. Dr. Rheumy didn't even do regular joint examinations beyond taking a quick look at my fingers! I didn't realize that a full joint exam should be done at every rheumatology appointment until I started seeing Dr. Awesome and then read up on the subject on Google and some of my favorite blogs.
Even if I bring up an issue that is unlikely to be related to RA, Dr. Awesome does his best to get to the bottom of it by either running labs or recommending that I see another doctor in whatever sub-specialty is most relevant. A recent example was this past fall, when I had multiple episodes of sudden weakness in my thighs and upper arms without any exertion. I hadn't seen the neurologist in months and when I brought it up to Dr. Awesome - who seemed genuinely worried - he asked me to book an appointment as soon as I could get in. The neurologist wasn't all that helpful; his opinion was that it was, "either stress or an autoimmune neuromuscular disease," and he referred me to Dr. Irish, the neurologist who shares an office with him.
I still haven't found a resolution or definitive diagnosis for the neurological issues I've been having, but I have a working diagnosis of Myofascial Pain Syndrome for the muscular symptoms, and an order for an MRI of my lumbar spine to investigate some painful spasms I've been having in my feet. I've also had the joyful experience of going from a few random ocular headaches this past fall to what he's now calling chronic migraines...I'd go into more detail but this post is already long enough!
If I hadn't "fired" Dr. Rheumy, I probably would have just kept taking Skelaxin and hoping the pain would go away on its own. I wouldn't have gone back to the neurologist, wouldn't have found my way to Dr. Irish, I would be miserable with pain and I would still be convinced that I had something terrible like a brain tumor. (Seriously, I was near tears every time a migraine came on, convinced that I was dying.) I'm still in pain, but at least we're trying different things to relieve it, like trigger point injections and prophylactic migraine treatment. Dr. Irish has also recommended seeing a chiropractor and Dr. Awesome suggested acupuncture, and gave me a script for medical massage therapy.
I've been saying this since I struggled with recurrent miscarriage back before Susannah was born: if you are unhappy with a doctor, or just feel like they're not really listening to you, then do not be afraid to try someone else. You are paying your physician for a service, and if they aren't performing that service satisfactorily, it is your right as a patient to seek alternative care! Find recommendations from friends or family, look through websites like Healthgrades and Vitals, try Angie's List, or ask a trusted medical professional - your kids' pediatrician, your dentist, etc. - who they would recommend. There is no reason to waste your time and cause yourself unnecessary stress because you feel obligated to continue scheduling visits with the doctor you've been seeing. If you went to the salon and got a bad haircut, brought your car to a lousy mechanic, etc., you certainly wouldn't go again, right? Right.
Back in the spring of 2012, my feet started falling asleep. The numbness began at the metatarsal region and sent pins and needles through my toes. This had been happening for years during exercise, when I would go running in shoes that weren't quite right (too small for my size 11's, too narrow for my twisted toes, not built for over-pronation, etc.), which was annoying enough. I became concerned when it started happening for no discernible reason and with no obvious pattern. I had also begun to have some mild burning and muscle weakness in my right ring and pinky fingers. I've read articles from some pretty reputable sources - Hopkins Arthritis, for starters - that people with RA can experience peripheral neuropathy, so I brought it up to Dr. Rheumy.
He immediately dismissed it as something that isn't related to RA and had no interest in trying to get to the bottom of it. If I recall correctly, I think I brought it up on three separate visits, and got the same reaction each time. It was Dr. Primary who referred me to a neurologist, who ran a nerve conduction study and attributed it to - you guessed it - my RA.
Around that same time I woke up one morning, sat up in bed, and immediately went back down, in searing pain. Some muscle, somewhere in my neck or shoulder, had seized up and left me in a perma-shrug. It was so bad that I had to call my husband, who had just left for work, and ask him to turn around and come home. Dr. Primary's office didn't open until the afternoon that day and so I went to an urgent care office instead. The doctor there said I had a muscle sprain and prescribed Flexeril, a muscle relaxer. I went to Dr. Primary the next day because the Flexeril had turned me into a zombie, so he prescribed Skelaxin instead, which is milder and doesn't leave me stuck in an all-day nap.
I had also been having neck pain and was concerned about the possibility of cervical spine disease activity, so on my next visit to Dr. Rheumy, I brought it up to him. Once again, he dismissed my concerns and told me that RA doesn't affect the spine, even though it's another well-documented extra-articular manifestation of the disease.
I decided I was done with Dr. Rheumy when I needed to reschedule a routine visit with him that April. I had to bring Susannah to the dentist for an emergent visit and the next available appointment with the pedodontist was at the same time as my appointment with Dr. Rheumy. I called his office and was told that there were no available appointments until July - two months later! It had already been two months since my last visit, and waiting until July was out of the question, especially since I had been flaring. I researched rheumatologists on Vitals.com and Healthgrades.com and booked an appointment with a very positively-reviewed doctor in my area.
My first appointment Dr. Awesome happened to coincide with the next major episode of muscle spasm in my neck. I knew I liked him immediately when he didn't rush me in and out, even though the office was packed. He sat and spoke with me about my medical history, my symptoms, and my treatment plan for a half hour. (!!!) When I told him about the neck pain, I didn't even have to ask whether he thought it was related to my RA. He was right on top of things and sent me right over to their radiology tech for some x-rays. (I love that they have x-ray, labs, AND an infusion center on-site!) Those of you who have chronic conditions know how hard it can be to convince a doctor to order even simple diagnostic testing, especially on the initial visit. It was like I had walked into a spoonie's dream!
Dr. Awesome saw that my cervical spine was so tortured by muscle spasm that not only was it straight (it should curve toward the front of the neck), it was actually starting to curve in the wrong direction. He also saw what looked like potential rheumatological activity at the odontoid process. I left that appointment with a script for Skelaxin every 8 hours for one month, to relax my neck, and an order for an MRI.
Thankfully, especially considering atlanto-axial instability can cause serious neurological damage, and even death, the MRI showed no issues in that part of my cervical spine. The downside was that it did show two bulging discs impinging on the thecal sac, which is the membrane that surrounds the spinal cord. I was in a minor car accident back in college, and that's the only event I can think of that would have led to cervical disc disease.
Needless to say, it was a relief to find a rheumatologist who does not dismiss my concerns. Dr. Rheumy didn't even do regular joint examinations beyond taking a quick look at my fingers! I didn't realize that a full joint exam should be done at every rheumatology appointment until I started seeing Dr. Awesome and then read up on the subject on Google and some of my favorite blogs.
Even if I bring up an issue that is unlikely to be related to RA, Dr. Awesome does his best to get to the bottom of it by either running labs or recommending that I see another doctor in whatever sub-specialty is most relevant. A recent example was this past fall, when I had multiple episodes of sudden weakness in my thighs and upper arms without any exertion. I hadn't seen the neurologist in months and when I brought it up to Dr. Awesome - who seemed genuinely worried - he asked me to book an appointment as soon as I could get in. The neurologist wasn't all that helpful; his opinion was that it was, "either stress or an autoimmune neuromuscular disease," and he referred me to Dr. Irish, the neurologist who shares an office with him.
I still haven't found a resolution or definitive diagnosis for the neurological issues I've been having, but I have a working diagnosis of Myofascial Pain Syndrome for the muscular symptoms, and an order for an MRI of my lumbar spine to investigate some painful spasms I've been having in my feet. I've also had the joyful experience of going from a few random ocular headaches this past fall to what he's now calling chronic migraines...I'd go into more detail but this post is already long enough!
If I hadn't "fired" Dr. Rheumy, I probably would have just kept taking Skelaxin and hoping the pain would go away on its own. I wouldn't have gone back to the neurologist, wouldn't have found my way to Dr. Irish, I would be miserable with pain and I would still be convinced that I had something terrible like a brain tumor. (Seriously, I was near tears every time a migraine came on, convinced that I was dying.) I'm still in pain, but at least we're trying different things to relieve it, like trigger point injections and prophylactic migraine treatment. Dr. Irish has also recommended seeing a chiropractor and Dr. Awesome suggested acupuncture, and gave me a script for medical massage therapy.
I've been saying this since I struggled with recurrent miscarriage back before Susannah was born: if you are unhappy with a doctor, or just feel like they're not really listening to you, then do not be afraid to try someone else. You are paying your physician for a service, and if they aren't performing that service satisfactorily, it is your right as a patient to seek alternative care! Find recommendations from friends or family, look through websites like Healthgrades and Vitals, try Angie's List, or ask a trusted medical professional - your kids' pediatrician, your dentist, etc. - who they would recommend. There is no reason to waste your time and cause yourself unnecessary stress because you feel obligated to continue scheduling visits with the doctor you've been seeing. If you went to the salon and got a bad haircut, brought your car to a lousy mechanic, etc., you certainly wouldn't go again, right? Right.
Wednesday, October 19, 2011
all we need is just a little patience
This seems to be the underlying theme to my life right now. I thought it would best be summed up in bullets, to avoid rambling, but I ended up with big blocks of painful-to-get-through text. (Kind of a shame, cause I like making lists, shocking as that may be to those who know me well. I may be disorganized, but it's an orderly sort of chaos. Or something like that.)
In no particular order, here are all the things that I'm white-knuckled over - for the immediate future, at least.
I submitted an application to a nursing school; more specifically, a one-year program for people who have a bachelor's degree in another field. The deadline was October 17th (I submitted it on the 11th, go me!) but I don't expect to hear back until around Christmas or so. Some days I think that I have a good shot at getting in, others I think there's no way they'll take me. Mostly, I obsess about it regardless of how good or bad my feelings are regarding my chances of being accepted.
I've been having excruciating pain in my shins and calves after I run. As soon as I start, I can feel some pain, and then it just gets more and more intense until I feel like I'm plodding along while someone wails on my legs with a crowbar or seven. Post-run stretches are like torture sessions. I am still trying to get to that 5K distance (my team was bumped from the triathlon, much to my relief) and I'm going about it in a smart way, by trying to increase my distance by 10% per week. I can't get past 2.15 miles or so because I keep having to take breaks over multiple days in order to let my legs feel better. On top of that, life is too busy for me to be able to even get out there to give it a try.
I started Enbrel injections three weeks ago today. Dr. Rheumy told me that it can take a few weeks to see results, but he seems optimistic that it will help (as per our conversation mentioned in this post, where he advised me to go off MTX) so I have been trying to remain optimistic. So far, no difference whatsoever. I have not discontinued MTX because everything I've read says that biologics work better when paired with it.
After reading many stories from other Enbrel patients, it sounds like there's no rhyme or reason to who responds to it, who doesn't, and how long it takes. Some people feel a difference in their symptoms within a day or two, some feel a significant difference by the three month mark, and it is not "clinically effective" for about a third of RA patients who take it.
I don't know how long Dr. Rheumy wants me to be on it before we decide if it's working, and what criteria he will use to make that decision. Will it be a reduction in my RF and/or anti-CCP levels, relief from the symptoms I have, or both? I want to know as soon as I can if it would be better to move on to another biologic and see if it works better for me, but, again, this isn't something I will have an answer to until around Christmas.
I had to skip this week's Enbrel dose because I'm coming down with some sort of cold or upper respiratory virus. (I stupidly told myself it was a "chest cold," which of course guaranteed that I would feel like my head is filled with cotton by this evening.) I called Dr. Rheumy's office today to ask if I could take it this week, and he wants me to skip it until I feel better. So that's one more week of waiting to see if it actually works for me; one more week before I can try something else. I know a week doesn't sound like a long time, but I want to be able to sleep without being woken up by hip pain, I want to sit in any position I feel like without having painful stiffening of my ankles and knees, I want to be able to do things like type on a computer and knit without my knuckles feeling like they're on fire!
I want, I want, I want, and I want it now!!! (I would stomp my feet, but I'll be feeling it in my ankles all night if I do that.
Susannah's 5th birthday party is in a week and a half, and so far I've only heard from 4 out of 24 parents of kids who were invited. Only one of those is a yes. Trivial, maybe, but I need a head count by Tuesday and I want her to have a decent turnout. Ten kids (the minimum that I need to pay for) would be ideal - less money for me to spend - but what if we only get 3 in the end? So we wait for those phone calls.
I am trying to get Emily out of diapers and onto the potty. Enough said.
So...see why Axl Rose's voice is running through my head tonight?
In no particular order, here are all the things that I'm white-knuckled over - for the immediate future, at least.
I submitted an application to a nursing school; more specifically, a one-year program for people who have a bachelor's degree in another field. The deadline was October 17th (I submitted it on the 11th, go me!) but I don't expect to hear back until around Christmas or so. Some days I think that I have a good shot at getting in, others I think there's no way they'll take me. Mostly, I obsess about it regardless of how good or bad my feelings are regarding my chances of being accepted.
I've been having excruciating pain in my shins and calves after I run. As soon as I start, I can feel some pain, and then it just gets more and more intense until I feel like I'm plodding along while someone wails on my legs with a crowbar or seven. Post-run stretches are like torture sessions. I am still trying to get to that 5K distance (my team was bumped from the triathlon, much to my relief) and I'm going about it in a smart way, by trying to increase my distance by 10% per week. I can't get past 2.15 miles or so because I keep having to take breaks over multiple days in order to let my legs feel better. On top of that, life is too busy for me to be able to even get out there to give it a try.
I started Enbrel injections three weeks ago today. Dr. Rheumy told me that it can take a few weeks to see results, but he seems optimistic that it will help (as per our conversation mentioned in this post, where he advised me to go off MTX) so I have been trying to remain optimistic. So far, no difference whatsoever. I have not discontinued MTX because everything I've read says that biologics work better when paired with it.
After reading many stories from other Enbrel patients, it sounds like there's no rhyme or reason to who responds to it, who doesn't, and how long it takes. Some people feel a difference in their symptoms within a day or two, some feel a significant difference by the three month mark, and it is not "clinically effective" for about a third of RA patients who take it.
I don't know how long Dr. Rheumy wants me to be on it before we decide if it's working, and what criteria he will use to make that decision. Will it be a reduction in my RF and/or anti-CCP levels, relief from the symptoms I have, or both? I want to know as soon as I can if it would be better to move on to another biologic and see if it works better for me, but, again, this isn't something I will have an answer to until around Christmas.
I had to skip this week's Enbrel dose because I'm coming down with some sort of cold or upper respiratory virus. (I stupidly told myself it was a "chest cold," which of course guaranteed that I would feel like my head is filled with cotton by this evening.) I called Dr. Rheumy's office today to ask if I could take it this week, and he wants me to skip it until I feel better. So that's one more week of waiting to see if it actually works for me; one more week before I can try something else. I know a week doesn't sound like a long time, but I want to be able to sleep without being woken up by hip pain, I want to sit in any position I feel like without having painful stiffening of my ankles and knees, I want to be able to do things like type on a computer and knit without my knuckles feeling like they're on fire!
I want, I want, I want, and I want it now!!! (I would stomp my feet, but I'll be feeling it in my ankles all night if I do that.
Susannah's 5th birthday party is in a week and a half, and so far I've only heard from 4 out of 24 parents of kids who were invited. Only one of those is a yes. Trivial, maybe, but I need a head count by Tuesday and I want her to have a decent turnout. Ten kids (the minimum that I need to pay for) would be ideal - less money for me to spend - but what if we only get 3 in the end? So we wait for those phone calls.
I am trying to get Emily out of diapers and onto the potty. Enough said.
So...see why Axl Rose's voice is running through my head tonight?
Tuesday, September 13, 2011
the good, the bad, the ugly, and the uncertain
The good: I decided to take up running again, and it went really well at the start. Within a few runs, I was able to run 2 miles without stopping, and was averaging over a mile of running each time. My short-term goal is a little over 5K distance, and my long-term goal for a year from now is The Great Cow Harbor 10K. I'm supposed to be running 5.3K (3.3mi) in a relay team for the Town of Huntington Sprint Triathlon, and that was looking really promising this time last month.
The bad: Between TS Irene, shin splints, and Susannah starting kindergarten, I haven't run in almost 3 weeks. The triathlon is 12 days away. I was proud of myself for going 2 miles without stopping, but on the flip side, I've hardly run 2 miles without stopping...that was before the hiatus! I'm afraid I've really set myself back now.
The ugly: My left knee decided to revolt last night, and unlike my typical RA joint pain that tends to be better by the morning (or, should I say, after my joints loosen up), it is still swollen. I've iced it, rested it, elevated it and had it in a compression sleeve all day. Still puffy, still sore. So I'm thinking that I've actually hurt it and that it's not just RA pain.
The uncertain: I thought for sure at first that I would be able to throw up my swollen middle fingers at RA and say, "Fuck you, my lower body is strong enough that I'm going to run 15 miles a week, and it's gonna be awesome!!!" Now I'm thinking that I'll have to very humbly apologize to my body for being so reckless.
Oh, and just for an added bonus, my inner upper gumline, my hard palate, and the back of my lower gums are like a big minefield of sores. You would think that this would at least help me lose a little weight since eating is so painful, but no luck there - I've got eating more than covered! I've been stuffing my face with soft things like bread and pasta since I feel like I'm going to vom if I don't. Yeah!!!
Dr. Rheumy told me at my appointment two weeks ago that I could quit the MTX, since I've officially "failed" the treatment (I'm not noticing a difference in my symptoms this time around) and should be starting Enbrel soon anyway. I'm too scared to discontinue for good. Now I'm not so sure why...surely untreated RA isn't as bad as unresponsive RA coupled with unrelenting nausea and what seems strangely akin to leprosy in my mouth. (Sorry to anyone out there suffering from leprosy - though at least there is a cure for it that the WHO will provide free of cost. I wish there were a free, readily available cure for autoimmune disease!)
Why am I torturing myself again? I can at least answer that question: because of that pesky little thing called hope. Deep down, under my pragmatic cover, I am a hopeless dreamer. Maybe - just maybe - the MTX will suddenly start to do something. I've only been back on it for 8 weeks...maybe it is just taking my body a little longer than usual to respond to it.
The bad: Between TS Irene, shin splints, and Susannah starting kindergarten, I haven't run in almost 3 weeks. The triathlon is 12 days away. I was proud of myself for going 2 miles without stopping, but on the flip side, I've hardly run 2 miles without stopping...that was before the hiatus! I'm afraid I've really set myself back now.
The ugly: My left knee decided to revolt last night, and unlike my typical RA joint pain that tends to be better by the morning (or, should I say, after my joints loosen up), it is still swollen. I've iced it, rested it, elevated it and had it in a compression sleeve all day. Still puffy, still sore. So I'm thinking that I've actually hurt it and that it's not just RA pain.
The uncertain: I thought for sure at first that I would be able to throw up my swollen middle fingers at RA and say, "Fuck you, my lower body is strong enough that I'm going to run 15 miles a week, and it's gonna be awesome!!!" Now I'm thinking that I'll have to very humbly apologize to my body for being so reckless.
Oh, and just for an added bonus, my inner upper gumline, my hard palate, and the back of my lower gums are like a big minefield of sores. You would think that this would at least help me lose a little weight since eating is so painful, but no luck there - I've got eating more than covered! I've been stuffing my face with soft things like bread and pasta since I feel like I'm going to vom if I don't. Yeah!!!
Dr. Rheumy told me at my appointment two weeks ago that I could quit the MTX, since I've officially "failed" the treatment (I'm not noticing a difference in my symptoms this time around) and should be starting Enbrel soon anyway. I'm too scared to discontinue for good. Now I'm not so sure why...surely untreated RA isn't as bad as unresponsive RA coupled with unrelenting nausea and what seems strangely akin to leprosy in my mouth. (Sorry to anyone out there suffering from leprosy - though at least there is a cure for it that the WHO will provide free of cost. I wish there were a free, readily available cure for autoimmune disease!)
Why am I torturing myself again? I can at least answer that question: because of that pesky little thing called hope. Deep down, under my pragmatic cover, I am a hopeless dreamer. Maybe - just maybe - the MTX will suddenly start to do something. I've only been back on it for 8 weeks...maybe it is just taking my body a little longer than usual to respond to it.
Tuesday, July 26, 2011
take me back
I spent about 10 minutes laying on my left side, with my arm under my head, and my legs curled up. My left hip is on fire and my shoulder is so weak and stiff that I can hardly stand to bring my arm up from my side. It is starting to radiate pain down my arm through to my elbow, and spread across the left side of my upper back.
I tried to grab the roll of toilet paper in the bathroom, and it was too hard to use my left arm, so I had to keep it lamely at my side while I reached with my right arm. I came back to the living room and told J.W. what had happened.
After that, I cried. Just for a minute. Quietly, so he didn't hear, even though he was sitting right next to me. I think if I tried to talk about it to him I wouldn't have been able to stop.
I don't remember what it's like to be able to just get up and move around without stiffness. To bend down and pick up something off the floor without having to grab something for support on the way back up. To lay down on the couch any which way I want without having to think it through beforehand.
I tried to grab the roll of toilet paper in the bathroom, and it was too hard to use my left arm, so I had to keep it lamely at my side while I reached with my right arm. I came back to the living room and told J.W. what had happened.
After that, I cried. Just for a minute. Quietly, so he didn't hear, even though he was sitting right next to me. I think if I tried to talk about it to him I wouldn't have been able to stop.
I don't remember what it's like to be able to just get up and move around without stiffness. To bend down and pick up something off the floor without having to grab something for support on the way back up. To lay down on the couch any which way I want without having to think it through beforehand.
Thursday, July 7, 2011
murphy's law
The kids and I have been pretty active since Susannah finished up preschool and the summer officially began. Lots of trips to the beach, even if just for an hour or two, some time spent at the playground, a trip to the mini zoo and a little swimming in the pool at my mom's. My body has been behaving while we're out and about, even though I've had quite a few painful flares pop up in the evenings. Overall, I haven't had too many complaints.
We have been taking it easy the past couple of days, which was supposed to give me some quality knitting time. I actually finished up my first project in a couple of months last week, a Posy tank for Emily using Knit One Crochet Too 2nd Time Cotton in Avocado. I decided to frog (that's unravel, for you non-knitters) a sweater I had started last year for my mom, since it was shaping up to be more fitting for me, and start over in a smaller size. I figured I would at least be back to where I joined the neckline by the busy work weekend, which starts tonight, since I had all this free time on my hands and no plans to do anything more than take the girls to swimming this morning.
Of course, my right hand decided to swell every night this week. Normally that wouldn't stop me, but I was actually getting a little clumsy with my needles, so I didn't want to compromise the finished product. My left hand and both wrists are acting up too, something that doesn't happen nearly as often as the swelling in my right hand.
Now I am about to get ready for the start of a 6-shift weekend at work. I work in a restaurant, so there's plenty of walking around to be had, and quite a bit of standing still, which is much worse for my hips and knees than the walking. Aside from a flare last Wednesday night where my right knee painfully puffed up, the joints in my lower body have been feeling pretty normal recently. Another "of course" - my left hip and knee have been on fire on and off today and I've been getting some lovely nerve pain all the way down to my ankle.
Murphy's Law is just plain evil.
We have been taking it easy the past couple of days, which was supposed to give me some quality knitting time. I actually finished up my first project in a couple of months last week, a Posy tank for Emily using Knit One Crochet Too 2nd Time Cotton in Avocado. I decided to frog (that's unravel, for you non-knitters) a sweater I had started last year for my mom, since it was shaping up to be more fitting for me, and start over in a smaller size. I figured I would at least be back to where I joined the neckline by the busy work weekend, which starts tonight, since I had all this free time on my hands and no plans to do anything more than take the girls to swimming this morning.
Of course, my right hand decided to swell every night this week. Normally that wouldn't stop me, but I was actually getting a little clumsy with my needles, so I didn't want to compromise the finished product. My left hand and both wrists are acting up too, something that doesn't happen nearly as often as the swelling in my right hand.
Now I am about to get ready for the start of a 6-shift weekend at work. I work in a restaurant, so there's plenty of walking around to be had, and quite a bit of standing still, which is much worse for my hips and knees than the walking. Aside from a flare last Wednesday night where my right knee painfully puffed up, the joints in my lower body have been feeling pretty normal recently. Another "of course" - my left hip and knee have been on fire on and off today and I've been getting some lovely nerve pain all the way down to my ankle.
Murphy's Law is just plain evil.
Wednesday, June 15, 2011
mack trucks and mortality
I have not been well this past week. You can probably guess that by the first half of this post's title.
I was naively lulled into a false sense of security by my methotrexate, thinking that maybe I am really not doing that badly with the RA. This line of reasoning came from the fact that I was only having a "minor" flare when I went back on the MTX after the 4-month hiatus. It was just my hips screaming and my hands swelling to the point that they were barely recognizable as my own; nothing systemic going on. I figured things were going pretty well if that was all I was complaining about after months of not being on any treatments.
I have not taken MTX in 3 weeks now. Probably a stupid decision, but the week I was supposed to refill the script was a tough week to pay out-of-pocket. Our new insurance was finally straightened out the following week, but after being off it for two weeks, I was starting to tell myself that maybe I should just wait till I get all my ducks in a row, have a referral to my rheumy, and get my labs done before I resume treatment. After all, I was feeling pretty good, minus the frequent flares in my hands - particularly the thumb and fingers of my right hand - so I figured I could wait a little longer.
My current state - feeling like I've been hit by a truck - started on Thursday as a nagging fatigue and has progressed from there into loopiness, episodes of palpitations and mild chest pain (something that tends to happen when I am stressed), a headache that won't go away, and pain involving my left eye. Along with the eye pain has come blurred vision and strabismus (wandering) in that eye.
Not having chosen a PCP yet, and not wanting to go back to my old PCP - the wait times crept from 20 minutes to nearly 2 hours over the 3 years I had been seeing him - I went to an urgent care center. That doctor noticed the strabismus, which I had not seen myself, and was concerned about that and the headache, so I got to go for a CT scan this morning. Fun! That came back normal, and I assume the EKG he did in the office was fine as well since I haven't heard otherwise. I am just waiting for blood work results now, to rule out Lyme Disease since I was bitten by a couple of ticks on our trip to Virginia in early May. The doctor thinks Lyme is unlikely since it is not nearly as prevalent there as it is here on Long Island.
Tonight I am aching all over, muscles and joints alike, the headache is not yet gone, and my eye is weak and in pain. I woke up the last few days barely able to straighten my right arm at the elbow, and my left shoulder was screaming while I tried to prop myself up on my left arm for a few minutes last night.
I don't think I have Lyme Disease. I think I am having one hell of a flare.
Feeling relatively good for a few months must not mean as much in terms of disease activity as I was secretly hoping it did. How stupid and naive of me to assume that I'd be okay going off MTX for a little while again!
On a separate, but somewhat related topic, I have been thinking of my own mortality since yesterday. A blogger in the RA community, RA Superbitch, passed away last week. There hasn't been an announcement on her blog or Facebook page concerning the details, but she had been dealt a really shitty hand with her RA and it seems to me, along with many others, that her RA is what caused her death. I did not "know" her well outside of reading a blog post here and there, but I know she was a cherished part of the RA blogosphere and will be sorely missed. She was in her 30s, with a husband and young son, so it really hits close to home for me. And makes me think that much more about how serious this disease really is.
Now that all of this has been said, I am going to buckle down and choose a PCP. It's time to really focus on treating my RA.
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