A Day in the life of Rheumatoid Arthritis

Disclaimer: The views and opinions expressed in this publication are the views of the author and are not associated with publications created or developed by the International Foundation for Autoimmune Arthritis.

by Neen Monty



2am. I am awake because there is pain all over my body. My ankles and knees are aching. I want to throw off the sheet because it feels too heavy. But it is cold, so I keep it over me. My electric blanket is on, in the hope that the heat will help ease the pain. It does. Some.

My hands hurt too. And they have pins and needles. Not the kind that tickles…the uncomfortable kind. They are going numb. And yet they still hurt…how does that work?

My elbows ache, my shoulders, my shoulder blades….there is no way for me to lie without putting pressure on a flaring joint. I can’t roll over…my lower spine (SI joint) feels like someone has stabbed me with a screwdriver. Each time I breathe in and out my ribs feel like I am being stabbed with hundreds of knives. My rheumy tells me that’s costochondritis. Always nice to have a name for things…not that it helps at 2am.

Should I take pain killers? From long experience I know I would need strong narcotic pain killers, like oxycodone, to have any effect at all. I have tried everything from panadol right up to oxycodone. I have a range of pain killers of varying strengths.

If I take the heavy duty painkillers I will have a drug ‘hangover’ tomorrow. I’ll feel sleepy and dopey and won’t be able to function anyway. I already took oxycodone at 7pm. That wore off long before midnight. Now the pain has gotten so bad that I am awake again. If I am hungover tomorrow I won’t be able to work. But if I’ve been awake all night, same deal. I decide to tough it out. I’d rather be lucid.

My Achilles tendons are aching – I don’t want to stand on my feet because it feels like they will rupture. My feet feel like they are broken, anyway. Someone mentioned plantar fasciitis once or twice. My rheumy? My GP? Who can remember at 2am?

I stand up and the pain shoots through my Achilles tendons. Achilles tendonitis? My rheumatologist has explained all about enthesitis. The inflammation of the insertion point where the tendons connect to the bone. Very common in the Achilles tendons and people with inflammatory arthritis are prone to it. I also have a lot of trouble with the tendons in my hips.

Enthesitis. Just another word for ‘pain’ as far as I’m concerned.

It feels like I’m walking on glass as I hobble to the kitchen to heat up some wheat bags. Ten minutes later I am back in bed, on my back, with a heat pack across my hips, one across my knees and one across my ankles. I have wrapped one around my jaw as well, because lately it has been aching. My temporomandibular joint (TMJ) is inflamed also. I have been playing my own personal game of ‘Will it Blend’ at every mealtime for weeks now.

I hold the last heat pack in my hands. My aching hands. And I lie there and try to sleep.

3am. Still lying here.

4am. Still awake. The pain has not subsided. I am starting to drift though…at some point sheer exhaustion takes over.

6am. I am awake again. I must have fallen asleep sometime around 4am. I don’t feel rested, although the pain is not as bad now as it was. My heat packs are cold and heavy, so I push them out of the bed. My body feels heavy because I am so tired. I will try to go back to sleep for another hour. I don’t have to get the kids up until 7am.

6:30am. I am getting up. The pain is getting increasing again, and lying here is only making it worse. If I get up and start to move I’ll feel better than lying here. Oh and coffee. Coffee will help.

My eyes feel gritty and dry. Like they are full of sand. It stings. The light seems to make them sting more, but I can’t go around with my eyes closed all day. Is this iritis? Sjogren’s Syndrome? My rheumy has mentioned both. I have to put eye drops – fake tears – in my eyes several times a day. To lubricate my eyes, to prevent the discomfort. It’s just one more little thing.

Standing up again. Pain shoots from my feet through my knees and on to my hips. Looking in the bathroom mirror, my eyes are bloodshot and so swollen it looks like an allergic reaction. But its not. It’s inflammation. Attacking my eyes. Another of the joys of RA – it can attack anywhere. So much more than just sore hands and feet!
I can only penguin shuffle off to the kitchen to make coffee. There is no point in limping – RA is symmetrical. Which side would I limp on?

Thank the gods for those little rubber mini sized mat things that I use to open jars. They allow me to grip the coffee jar, and get it open. Things would be substantially uglier if I couldn’t get my morning coffee…

While the coffee is on the stove, I heat up my heatpacks again. I strap one to my lower back and hang another over my shoulder. I can’t raise my arm above half way this morning. The heat should help loosen it up soon.

I wish I could strap a heat pack to my jaw. I have a constant dull ache in my jaw, which gets worse if I move it. Even to talk. If I try to chew something the pain is sharp and intense. Lucky you don’t have to chew coffee.

7am. I am nearly finished my coffee and I am feeling more human. I am still stiff all over, and as I go through my gentle stretches to try and ease some of the stiffness and relieve some of the pain. I envy all the people who can jump out of bed and tackle the day. Emphasis on the ‘jump’. Without pain.

But these are pointless thoughts, and I push them away. For 36 years I was one of those people. I never appreciated the sheer joy of free movement, of not being in pain. I also know that many people get RA much younger than me. I remind myself that I am still luckier than many people.

Time to wake the kids and get them breakfast. Get them to school. Have a shower.

Ahhhh shower.

I take a long shower every morning. It is the single most important part of my morning. It washes away the last of the stiffness, and eases much of the pain. But not all. And when the shower stops, so does the relief.

I have tried many morning routines and this one works the best. It takes a full two hours for me to feel human. And to look human. My eyes are much less inflamed now. I still look like the elephant man to me, but I must admit to others I would just look a bit puffy eyed. They would probably think I drank too much last night and am hungover, I suppose. Whatever.

9am. Kids are at school. Yay! My most important task for the day is complete. Now I need to try and work. I am a web developer and I work from home. I’m very lucky to have this arrangement. I am only capable of working about 15 hours per week. About 3 hours per day. Usually broken up into two lots, with a break in between. So essentially it takes me most of the day to get 3 productive hours in that I can bill for. But as I said, I am lucky. Part time work is very hard to find. Understanding employers, even harder.

Again I strap some heat packs to me, and sit down at the computer. The pain has gone down to background noise, and I focus on my work to take my mind off it. Because I am not actually in a ‘flare’ right now – all of this is just ‘normal’ for me – the pain has become mild. Annoying. But it doesn’ t stop me working.

10:30 am. I need to take a break. Walk around. I do some dishes. Dunking my hands in the warm water feels amazingly good.

11am. Back to work for a bit.

12:30pm. Lunch break! I should be able to do another hour of work after that. Or some housework. I will have to choose one, the other will have to wait.

2pm. I will have to pick up the kids soon. Head for the shops, figure out something for dinner. I’m still feeling pretty good. When I go outside in the cold my hands start to turn yellow and bloodless. Then they turn purple. It hurts! This is Raynauds Disease…another sign of Rheumatoid Arthritis and other autoimmune diseases. My hands are numb and its hard to grab the steering wheel. I need to warm them up – why didn’t I put my gloves on??? Oh yeah, because its not actually that cold and I keep forgetting.

3pm. Pick up the kids. They are happy and excited, and telling me about their day. We have afternoon tea and do some homework, and again I realise I am way luckier than a lot of people.

4pm. I am feeling OK. Starting to stiffen up, but there is a pilates based class on at the gym. I will go. It will do me good. I head down there and warm up on the recumbent bike. My knees crack and grind as I force the pedals around. My ankles are giving me trouble too – they don’t want to bend. The first five minutes of exercise always hurts. But once I start to warm up, I have learned that the pain decreases. So it’s worth pushing through. There is a reward. A reduction in pain, albeit temporary. There are all the other benefits of exercise as well – increased muscle strength, improved cardiovascular health…exercise is good for everyone.

It is especially good for people with Rheumatoid arthritis.

Of course there are some days when exercise is completely impossible. When standing up is hard work, exercise is off the agenda. That’s when I am in a true flare. Not just everyday pain. And there are some people with severe rheumatoid arthritis who never feel good enough to even attempt exercise. So again, I realise I am luckier than some.

The first half of my pilates class is strength based, using my own body weight to build muscle. The second half is composed of lots of stretching, which is so good for arthritic joints. Other days I life light weights, or do a light workout on the cardio machines. The recumbent bike is good for people with lower back pain. The elliptical trainer is low impact cardio. On my best days, or really determined days, I run on the treadmill. Or jog, really. I do whatever I can do on the day.

I leave the gym feeling much better than when I arrived.

6pm. The pain has returned with a vengeance. My ankles, knees, hips, shoulders, elbows, ribs, jaw are all taking turns at feeling the worst. I have to get dinner prepared, then I can painkiller up.

6:15pm. Endone (oxycodone). Ahhhh.

6:45pm. Narcotic pain relief has kicked in to a point. A glass of red will hurry it along. The dishes will have to wait. The kids and I will watch TV until bedtime now.

9pm. Exhausted. Everything hurts again, the endone has worn off. If I take another, I’ll probably be hungover tomorrow. If I don’t, I probably won’t sleep tonight.

I take another. I don’t want another night like last night.

10pm. Drifting off to sleep.

2am. I am awake because there is pain all over my body.

This piece was originally posted at Arthritic Chick and was cross-posted with permission.

Trying To Survive in a RA/Lupus/Autoimmune Illness World

Disclaimer: The views and opinions expressed in this publication are the views of the author and are not associated with publications created or developed by the International Foundation for Autoimmune Arthritis.

by Rhia Steele

When Words Just Don’t “tell” the Tale of an Autoimmune Arthritic Riddled Life…

Here is a more “detailed” look into a Lupus/RA/Autoimmune patients life. You never know from one moment to the next what might happen. Some things are just life and they happen. But, as you read below, you will know why I feel a steam roller; rolled back and forth over me at times…

I am not sure where to begin. I know some people were already aware of all the stressful medical circumstances that had gone on with me at the beginning of 2013. I had been in almost intractable pain, in Mid-January, then AGAIN a 2nd time in April 2013. To this moment, the doctors have not yet found out what is or was wrong. One thought it was the RA/Lupus. (I was in a MAJOR FLARE at the time). The other doctor thought it was the joints in my hips; along with X-rays showing my toes and thumbs are extremely degenerated causing the pain. I had both hips injected in early February 2013, just “in case” that was the issue. Another ONE of my several physicians thought it is was combination of recently finding out I was and still stay very low on B-12 due to having (pernicious anemia). By the way, that is also an autoimmune disease, for those who may not know. There is a certain “factor” that the stomach makes called the “intrinsic factor” and it helps to make B-12 in our bodies absorb it. Those of us without that factor must supplement ourselves with B-12 injections and pills so we can have enough. I just began taking the monthly injections and sublingual daily pills… and will have to forever. Then the real kicker, is due to the osteoporosis, my pain specialist, along with myself honestly, think I may have had and still could possibly have a compression fracture(s) in my lower lumbar spine. Much of the severest part of the pain goes from my hips, down my legs, straight down into my heels when”this” whatever it is comes on. The are several other things that probably at that time and could still (more like when) this “event” happens contributing, such as the myoglobin being high. Serum myoglobin shows up when “muscle” damage occurs. That one factor in itself is known to cause horrible muscle pain (thus muscle itself begins to die, it those cells go into the blood stream, and can “hang”, almost like a blood clot of sorts), but they can “hang” in the kidney rather than elsewhere in the body, so you can have kidney failure if the myoglobin is in your blood. this can happen from “larger skeletal muscles or the heart muscle also causes this to appear when a heart attack happens.) We basically unless there is a medical reason, such as a huge trauma to muscles, some medications, and so on, are known to cause myoglobin to be in the blood. The severe pain in my legs, could very well be due to the “muscle destruction”, thus he felt that could have been a factor. The fact that I was on a muscle relaxer than sometimes can cause this, along with a statin I was being given to “protect” my heart from a possible further heart attack, both could cause an abnormal myoglobin factor to show up.
If that were not enough to send anyone running for the guys with the “white jackets” and the “locked wagon”; I began to have teeth just practically falling out of my mouth. I had already had at that time went in to my dentist (that by the way has osteoarthritis so badly, many procedures he cannot do because of the severity of the OA in his hands) but he was able to do some what he called “patching up” on my upper front teeth, and now one of those, plus yet another top front tooth that had a small chunk out of it. Then, about that same time, I had TWO, upper molars, both the same tooth on opposite sides, that within a week, both had an entire half of the tooth each disappear (I figure I swallowed them)! So, neither of those could be salvaged, thus they had to be extracted. Before I could even get those two removed, I found another cavity that at least could be “saved” (actually temporarily because it was too deep for a permanent metal filling) in a bottom molar just a week after the other two were pulled. To top this off, my husband had to have a tooth pulled, and neither of us has dental insurance. The dental bills were adding up quickly. If that was not enough to send me screaming into the hills and valleys; I had to have the pain pump refilled very early, due to the hospitals screw up! I had to PAY 2 co-pays within 3 weeks of each other! The hospital “lacked” enough medication that goes into my pump. thus I got about 3 weeks worth, and I should have been good for about 3 MONTHS before it needing a refill. Even though it was the hospital’s issue, guess who had to pay the “co-pay” again; when I had just paid one 3 weeks before. At the same time, I was facing lumbar steroidal injections, within the same week. We BOTH just had to have new glasses. Of course mine had to have “prisms” in them due to the “double vision” they have yet to figure out and my husband is “legally” blind without his glasses on, thus both pair were expensive even though we ordered them online. My husband has to pay cash very other month to continue to get his medications, which was bad enough. Then the visit he went to about the time all of this was going on suddenly the doctor decided to do some kind of “new” blood work. The told him it would be $100.00 for him to pay. Well ONLY $100.00 that is LOTS of money to us. The guilt for me at that time was piling up.I had not been able to get out of the house much at all. The heat made it all of my symptoms worse, and it being the middle of August, was of course the hottest part of the Summer! (about now you are thinking gosh that has to be the end of the “tragedy”)… Oh, no! Then to top things off about a week later, I woke up very hoarse. My throat really was not sore or bothering me, yet I just almost had laryngitis. Well, that rocked along for a day or two, and it seemed to be getting worse, and certainly not showing signs of cleaning up on its own. That Sunday evening or early Monday, the real fun began. My throat got SO SORE, including every part of my tongue, under and on it… the roof of my mouth was totally covered and looked like it is going to bleed, and in the back of my throat, I got this white gunk, and was unable to utter a word. I can BARELY get a whisper out. IN all of this, I was using the “arsenal” of everything I had. First, I took antibiotics that I was given about 4 weeks. They had me on them, then said to get back off them when they found the B-12 anemia. Thus, I had 4 days of them left. So, I started popping them as directed, gargling with warm salt water as much as I could stand, putting peroxide in my mouth, and even dug out a bottle of “magic mouth wash” that is a script you use for thrush, a sore mouth, ulcers in the mouth and throat etc.. It has a couple of things in it to help heal and also numb the areas. So, I began using it, plus called for refills on it. I had refills but they had expired of of course. Well, I had known something was still very wrong. The mess in my mouth seemed worse. It dawned on me after all of the antibiotics lately I probably have thrush. I have had it on several occasions and it needs of course Nystatin rinse, then my doctor gives me a straight oral lidocaine that is MUCH stronger than anything else. So, I call (and get my husband to talk for me) to tell our doctors office EITHER I need a “sick visit”), which would have been Thursday or Friday, OR if my doctor wanted to; since I felt too lousy to come in could be so kind to just call in the medications he always uses for this. Well, they tell my husband that he has no appointments available. But the woman on the phone was NOT getting the fact that I would see one of the PA’s. I did not have to see the main doctor, I just needed medication. I also told her to please ask him to call in some Nystatin rinse, but I forgot to mention the Diflucan and the lidocaine rinse. Well, heck of course they “missed” the boat on that one. He KNEW I probably had thrush. He also knew my immune system is SO messed up right then, me coming in to an office full of other sick people was probably not the best idea. Plus, I already have 2 of the dental appointments set up. The first one, coming up a couple of days from then. At that time we thought I might be having the lumbar injections, and another dentist appointment on the in another week. Then I had my appointment to see my Rheumatologist finally within the next few days. So, I needed to get my mouth and throat well. The dentist I know would NOT touch me until my mouth was better. So, I Call my Primary Care Doctor in desperation that Friday, to let him know EXACTLY what the “usual” meds (all of them) are, spelling them to her( the nurse) etc… They close at NOON on Fridays, SO I desperately needed to know if I was going to be asked to make a trip there or not.. Probably not, I thought. For one they must have had everyone in Ennis sick or something. It was almost like they did not even have any of their “sick” appointments they keep daily for someone such as I that need to be seen but the that the PA’s usually do; taking care of me for the most part. Well, I did NOT hear back from them BEFORE NOON! Now I knew on Fridays they were in the office, but they did not take in patients on Friday afternoons. So, it could be that he was going to call all of the stuff in after he was settled after seeing patients. Yet by now, I was in tears and told my husband, that if my PCP did not call something in, even though how much I am totally DO NOT to go to the ER, the possibility was we MUST go to the ER! I CANNOT physically afford to be very ill with an infection, thrush, and whatever see was going on with me. I could get extremely ill quickly. So, LUCKILY, we had out contention plan ready. Supposedly we have a new clinic here in my home town that takes walk ins and they were supposed to be open on weekends… you don’t need an appointment etc… if they were not available and I was NO better, then we would do the dirty deed of ER. I NEEDED those meds. Well, finally about 3:30 my docs offices calls. The woman says “okay, he said he sent in both scripts to your pharmacy. I was so thrilled, other than I knew we had been having huge issues with the PCP emailing/sending scripts electronically to our pharmacies especially mine. So I hurriedly called the pharmacy, to find out if those scripts did arrive for filling. Well, that part was at least not a huge ordeal. But, my throat STILL felt like I swallowed razor blades. It was not any better as far as my voice. In fact earlier it was worse. I couldn’t utter a word. But, I did get the Diflucan script, along with the Nystatin and the lidocaine to numb it. Now, this is late September of so of 2013, and I and already been back to the dentist to have several more teeth “patched”. I also find out that just about every tooth in my mouth is suddenly full of “cavities”. I don’t even like to speak about it, but due to the very LONG time it took to diagnose me with the Sjögren’s;, along with the other autoimmune arthritis illnesses, now my teeth were already “shot”. I will be eating or drinking something, and either “feel” a piece of tooth in my mouth or feel a spot where a piece is suddenly missing. Basically my teeth are just crumbling, breaking off suddenly, and I “may” have one on the left side get a “gap” in it, and within days the EXACT same tooth on the other side will do the same thing. Just like RA where it effects “joints” often times on both sides, the Sjögren’s effects my teeth much the same way. I have also found out, that everything I’ve tried to do to “protect” the teeth I have, were all the right things to do. But, too little, and honestly too late. Not one doctor, other than my PCP, who actually treats the ulcers, thrush and so forth, has ever spoken to me about my teeth, and how we might preserve them. I was actually the one that brought up taking on the the two medications that have to help with the lack of saliva. I am currently on Pilocarpine, as well as chew gun with Xylitol in it, but there is little that can be done due to them already being not treated years ago. Yet, without at least sipping on something constantly, or having a piece of gum in my mouth, it gets so extremely dry that I cannot even talk, swallow, or do a thing that involves taking a pill for sure.
I did speak to the dentist that did my extractions, because he seemed to know more about Sjögren’s. He told me I was doing all of the right things, it was just way too late in diagnosing me so I would have gotten on medication much sooner I may not have my teeth literally deteriorating more day by day.
Of course there is also the situation as to why suddenly I am “plagued” with “double vision”. That started about 4 months or so after all of the “severe” muscle pain. By the way, they NEVER did figure out WHY in mid January 2013, I began having such severe pain; more what I would refer to as “intractable” pain. There is nothing I could do to relieve it. I waited weeks before going into my pain specialist, just do to all of the things like the “myoglobin” making my muscles begin to deteriorate. Then they sent me to several neurologists, that did EMG’s, Nerve Conduction Studies, I had a CT scan of my lumbar spine. It went on and on. I finally walked into my Pain doctor’s office and told him I would sit in his floor and scream, because it seemed I could not get any RELIEF! He was the one that wanted to do the lumbar injections, but my insurance of course decided since several years before I had them done and they did not help. Thus, we were almost ready to have me put under and they were going to do an “exploratory” surgery around my spine, around where the tubing from my pain pump ran into my spinal fluid, check out my vertebra, to see if maybe I did have compression fractures, that they would not see on a CT Scan. And due to my pain pump, I cannot have any type of MRI whatsoever. At that time, I went on a higher dose of a different “oral” pain medication (incidentally I really DID NOT want to do), but he had to get the pain under control some how. With the “added” medication it seemed to disappear as suddenly is it came on. But, that still was not an answer to “why” it happened in the first place!

Then the next time I was to have the pump filled in about mid-April, I had a 2nd “attack” of the exact same thing. I woke up one morning, with so much excruciating pain, I did not think I could even try to live through the day. One Neurologist said it was “peripheral neuropathy”, one said I may have Myasthenia Gravis (another autoimmune disease), another said it could be Multiple Sclerosis. Others said it was the RA attacking the bottoms of my feet. But, that did not explain, the horrible acute pain from my waistline down both legs, that not one doctor out of the at least 7 or more I saw ever made sense of it. The best answer I got, was, you know, we are just not sure. Well about 6 or 7 weeks later, after again a small upping of my oral pain medication dosage it left, as quickly as it had came. It did that both times. Even now, though it has been about 5 months since it happened the last time, a piece of me wakes up in fear every morning. Since it came, no one could find a good explanation, and then it left, and still no “real” legitimate reason, other than “Lupus and RA” can cause ALL types of strange symptoms. How well do I know that. As in the double vision. Like my teeth suddenly just falling to pieces, or several years back, when one Sunday morning, I began to “move”, I mean “physically” move, and I was not doing it. I still to this day, if I get where there is a ceiling fan, or the noise from something like a fan outside for an air conditioning unit, or any type of sound that makes the same sound over and over again, I will literally catch myself “moving”…. if I am sitting down, I will literally “gyrate” sitting down, just like I was trying to move to the music. But, I am not doing it. The first time it happened, it frightened me and my husband so badly, we drove like mad people to the ER. We thought I had possibly had a stroke or something.
Again, no explanation as to why. But, as long as I take my Meclizine and Diazepam, it stays for the most part under control. If I get very upset or nervous it will try to happen.

In my gut, in my heart, in my mind, and in my soul, I carry this “torch” daily. I’ve tried everyday and “everyday but Sunday”, as the saying goes to MAKE A DIFFERENCE! From signing petitions, to joining different groups, to writing letter after letter to my Senators, Congressional Leaders, even the President, I’ve been blogging for years, had my own groups, told my story I can’t tell you how many times, to just about anyone who will stand still long enough, or read long enough to get she I am coming from. I’ve went through doctor after doctor, specialists, from Orthopedic Surgeons, to Neuro-Ophthalmologists. Hematologists, ENT Doctors, Neurologists, and I can’t even remember the number of Rheumatologists that I just almost had to get up and walk out during “their” line of bull they tried to feed me. I’ve been through a number of specialists in the Methodist Hospital in Dallas, that honestly, they were gastroenterologists, that saved my life, literally. That is another story for another post. But, in 2010, after over 6 weeks in two hospitals, and my doctors NOT thinking I would never come out of that hospital alive. But, I am alive to write about it. I have had so many surgeries, I believe I’ve lost count honestly. Just the joint surgeries, and then joint replacements add up to at least 12 if I am remembering correctly. In 2007, we counted 8 surgeries in that one year alone. After that, it got to where some of it is just a haze. The brain fog in some ways is a blessing. That sounds terrible, but for me it is true. I think if I could remember all the details of everything that I’ve been through in the past 10 years, I honestly may just go off the “deep end” of the black darkness of the waters below, if I could truly recall it all.
As I close this for now, I want to say, I truly know I am certainly NOT the only one who trudges daily through this “life”, thinking I am the only person, who has ever been through all of this garbage. There are people are there, that have seen a great deal more suffering and been through a great deal that I have.
But, there are those out there that just find my story, as well as many of our stories just totally unbelievable.
That is what keeps me going. That is what drives me to get up each morning, and “work” through the pain. Knowing as long as I make every moment of my time I can being a “voice”, a Health Activist, giving of my time knowing that what I bring to the table makes us get heard by those that need to hear us. As I’ve said all my life, I was put here to “help”out through my writing, through all I can do to help lead us down a new path through the rough and rocky roads of Autoimmune Arthritis Diseases. It is a new dawn for us as patients! We can now speak our minds, and tell what is coming to be the time when Patients, Researchers, Doctors, Medical Professionals, & Global Alliances come together to bring a new “Tomorrow” to the Autoimmune Arthritis World! We shall be the winners.

Rhia Steele © 2/4/2014

Little Update

Note: For those of you who followed along with Danielle’s Blog Leader chat here is an update from her on her amazing family.

by Danielle James Tipton

I can’t believe how long it has been since I blogged! Since last I wrote, we have seen the ENT to discuss a plan for the next time she gets sick. The plan has been that we call ENT when she gets sick to get her in for a culture. I really wanted them to culture so we could figure out what antibiotic would actually work. While they are in there, they want to suck out the extra crap that seems to never leave her sinuses in her forehead. I’m so over trying different antibiotics and her still getting sick when we stop. Unfortunately, that time is now but it hasn’t all lined up. They sent the authorization to the wrong fax number, then when our rheumies got it, they only could make out half. Hopefully since we are at our rheumies now, that will get situated. She also recently saw endocrinology and had her growth stim test, which she failed miserably. We have an MRI scheduled for next week to rule out pituitary problems before we start growth hormone.

As of today, Emily has the go ahead from our rheumies to STOP PREDNISONE!!!!! That is HUGE!!! She has been on this steroid consistently since October 12, 2010. She has come a long way! She started on 42mgs. She was on the liquid, which is 15 mgs per 1 teaspoon (5mls). She was on 7mls twice a day, and currently she is on 0.2mls. I told the doc’s that I would prefer to taper, so it will be a week or so before she is fully off. I am sooooooo excited!!! So is she! At this point, the risk outweighs the benefit. I showed our rheumie the cortisol levels from the growth stim test, and she was floored at how low they still were, despite hydrocortisone twice a day. The down side is that we have to increase hydrocortisone temporarily, but it is only temporary. She is still on a plethora of other immune suppressors, but eliminating one is a good start! No other news today, but if anything else has changed we will know by tomorrow. Her MRI is set for next Friday, so hopefully we can coordinate ENT before that.

Zach had an appointment today, too. We have been fighting to get his Enbrel for over a month now. Thankfully I tend to hoard medicine a bit, so we had some extra. I’ve been spreading them out, giving it to him every six or seven days, instead of twice weekly like it’s supposed to be. Apparently it showed. Our rheumie and nurse practitioner both noted that he has more back pain and tenderness than he should. If his back is still that bad in 3 months at his next appointment he will have an MRI to see why. They also pointed out that he is hypermobile. That is one of those things that I don’t (yet!) know much about. All I know from my fellow JA mom’s is that it can be quite painful, and it can cause enthesitis, which is basically like inflammation of the tendons. Sounds like a good time, eh? Poor kiddo. Obviously, all of this shows that he is NOT ready to go off of Enbrel. In fact, we are also going from Methotrexate pills to the injection. I am really hopeful that once we get his Enbrel back on track, he will start to do better. Through the week it’s hard to remember that he has arthritis, too. These are always painful reminders.

I’m doing pretty good. I’m finally off of Medrol (like Prednisone). The only down side to that is the neuropathy coming back, along with the joint pain. While my rheumy feels that my Sjogren’s may turn into something else, his nurse practitioner is hopeful that it will not. I’m choosing to think she is right. :) In truth, aside from my right hand going numb every morning, and my one bum shoulder, the worst is the chronic fatigue. I am always sooooo tired. That aside, I am holding up well. I’m thankful that my symptoms are mild enough that they don’t prevent me from doing what I need to do.

And that is that. I will try to find the time to update after the MRI and other important appointments. Thanks for following! :)

This piece was originally posted at Emily’s Arthritis Fight and was cross-posted with permission.

How to be a Productivity Hedgehog

by Helen Vivienne Fletcher

How to be a Productivity Hedgehog

The other day I read an article entitled How to be a Productivity Unicorn. Just for kicks really, because there’s not much hope of me becoming a Productivity Unicorn any time soon. Don’t get me wrong, the advice in the article was sound, it just wasn’t aimed at people with health problems who need to count spoons and take naps a lot.

But, just because I’m not a Productivity Unicorn doesn’t mean I don’t get stuff done. I move pretty slowly, need to have periods of hibernation between productive times, and occasionally I get overwhelmed and have to stop what I’m doing to curl up in a ball for a while. I’m a Productivity Hedgehog.


Productivity Hedgehog – getting stuff done.

So here’s my guide on how to be a Productivity Hedgehog.
Continue reading

Chronic Illness and Acceptance

by Jane Waterman


One of the most difficult things I have encountered recently is not the challenges caused by life situations, or the challenges associated with health problems. The challenges that rock my world are more fundamental ones: ones that don’t require a chronic illness to understand, but ones that may be part of the fabric of chronic illness. The biggest challenge perhaps is acceptance: acceptance not only of the limitations that chronic illness brings to one’s life, but more importantly, the acceptance of self and one’s own fundamental self-worth.

Acceptance is tied up with so many things like contentment and improved quality of life. I’m sure that lack of self-compassion is the most fundamental barrier to acceptance.

Take for instance, my recovery from a recent operation to remove my gallbladder. The surgeon’s office gave me preparation and recovery information ahead of time. The recovery information said I would start to feel better within a few days, and within two weeks I would be playing golf and tennis again. Let’s just say my brain also filtered out the fact that I wasn’t able to do these activities before the surgery. Around day 4 of recovery, I sneezed, and felt an awful knifing pain deep inside. For two days, I felt like the pain was worsening rather than getting better. By the end of the second day of this, I couldn’t take a deep breath without pain. When I saw the surgeon the next day, she became worried about complications as apparently I shouldn’t be feeling that much pain. I was sent to the ER for tests. The ER was busy, and it was a drawn out, exhausting 7.5 hour process. It turned out that for whatever reason, the inflammation was greater than “typical” and I was just going to take longer to heal.

Why was this a struggle to accept? I think my mind adopted the belief that I should be better in two weeks’ time, which allowed me to give myself hell that I wasn’t getting better. This morning I realized it’s been just over two weeks since the surgery, not two months. I still have bruises on my stomach, so even my body is visually reminding me that things aren’t healed.

Another battle for acceptance recently arose from my part-time job as a technical writer/editor. Writing and editing are the joys of my life – the gifts I believe have been largely spared from the carnage of my autoimmune disease. And yet, I can only work part-time. Some weeks, I’m lucky and I can work 15-20 hours. Other weeks, it’s closer to nothing. In recent months, my main client has brought in a lot of new employees to help with a huge project that requires intense deadlines. There’s no way I can do the work myself, especially factoring in the surgery and recovery from recent events. I struggle with the thought that maybe one day I won’t be able to work at all. Instead of accepting this, I just accept that I am a failure.

Around the two-week mark of my recovery, I proceeded to do a bunch of household chores that would perhaps make a healthy person tired. I ended up in bed in intense pain, exhausted, and then the lack of acceptance reared its ugly head. From there, I progressed to the fundamental feeling of unworthiness that I’ve possessed since I was a child. I’m different. I’m not good enough. There’s something wrong with me. I can’t do what others do. I can’t do what I used to do. I’ve failed.

It occurred to me then that I was comparing myself to my self before I got ill, when I was 23 years old – half a lifetime ago. Recently, I had the opportunity to meet my new co-workers. I recall them in my mind’s eye. They are in their twenties. They likely don’t have immune diseases. They are starting out in their careers, where I was before Sjogren’s syndrome and depression intervened.

Mrs Blackbird reminded me that I am cruel in the standards I expect of myself. She reminded me that a healthy person would be tired by what I had done. Instead of hearing that, I was lost in that small self that worried about whether she had a place in the world, even if that place meant lying in a bed unable to do anything when my peers were running around living life.

Then I realized that the traits I possess are shared by so many of my chronically ill friends. We place the highest standards on ourselves, and have done so since our childhoods. We’ve had traumas and losses, and we’ve expected (and have been expected) to bounce back and keep giving of ourselves to families, friends, employers and the community. We do so naturally because it’s who we are. But there comes a time when we have to do self-care. That’s where we hit the proverbial wall. People who are accomplished in so many ways literally can’t figure out such a simple concept.

I believe self-care is anchored in acceptance of ‘what is’, and acceptance is anchored in self-compassion. We wouldn’t ask another to do some of the things we ask of ourselves when life and our illnesses have literally laid us out. Turning that natural compassion towards ourselves is difficult – something my chronically ill friends agree upon. Instead we measure ourselves against impossible standards – standards perhaps we couldn’t even achieve before we got ill, but through the rose-coloured glasses of our memories we fantasize that we did. In travelling to the past, or measuring ourselves against others and the things they achieve, we inflict the greatest suffering on someone who is as deserving of our love as anyone else – ourselves.

I used to think my healing would come from acceptance of my illness and an understanding of the limitations I live with. I’m convinced now that’s often a gateway to a frustration and a longing that’s so painful, we often feel it palpably in our bodies.

I’m starting to see that acceptance means something different for people with chronic illness. It means valuing ourselves, seeing ourselves as people worthy of love and compassion, and most especially, our own love and compassion. It means stopping the self-talk and litany of our perceived failures. It means seeing ourselves as precious as those who are most beloved and dear in our hearts.

What do you do to show compassion to yourself? Do you make self-compassion a daily practice? What changes do you think you could make that would add self-compassion to your life? I’d love to hear your practices and ideas.


P.S. I highly recommend the following two books, which expand on the importance of self-compassion and acceptance. How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and Radical Acceptance: Embracing Your Life With the Heart of a Buddha. You do not have to be Buddhist to benefit from these books – I promise.

This piece was originally posted at Blackbird at Night and was cross-posted with permission.

Making My Case for Rheumatoid Arthritis

by Betsy Brown

I am not a doctor. I’ve never done a fellowship, completed residency, or studied medicine. I do however consider myself to be a student of my body. Having lived in it now 30 years, I know when something is off. I respect doctors, especially rheumatologists, but considering that they treat more than 100 conditions and see patients who present these conditions in various ways, sometimes they need the help of us, the patients, to fully comprehend our state of health.

It is only because of my persistence that I finally got a diagnosis four months after the symptoms of my disease clearly set in. I may also owe my “early” diagnosis to new classification criteria by the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR) in 2010. The criteria was created with the aim of recognizing Rheumatoid Arthritis in the early disease stages. With the more aggressive and targeted treatments available today (mainly biologics), the authors of the criteria noted the possibility that fewer patients will reach the erosive disease state used in the previous criteria, written in 1987, if they are treated early enough in the course of their disease. (Ref. 1 pg 2587)

The criteria was not developed for diagnostic purposes but rather for selecting populations to complete clinical trials, though many doctors adopt the criteria as a tool to aid them in their diagnosis ( Ref. 1 pgs 2571, 2580). I use the criteria as an example of the many ways RA can present itself in its early forms and as a case for my diagnosis in 2011.

When I finally saw a Rheumatologist for the first time (read my blog for that story), she noted that I had more than 10 tender or swollen joints, synovial fluid (thumbs and pointer finger, both sides), and that my symptoms had lasted longer than six weeks. She did not care that my Rheumatoid Factor tested within normal ranges, or that my SED and CRP levels were not elevated. She saw I had visible disease activity, that I was in pain, and she did what she could to prevent damage by putting me on a DMARD immediately. I did have a high Antinuclear Antibody (ANA) titer, which may have factored into her diagnosis as well.

Since there was no other explanation for my symptoms (Lupus for the most part had been ruled out), the criteria used by my Rheumatologist in 2011 matches the standards of the 2010 Classification Criteria which would have given me a score of 6 points at the time. The article on the criteria states:

“To classify a patient as having or not having definite RA,
a history of symptom duration, a thorough joint evaluation,
and at least 1 serologic test (RF or ACPA) and 1
acute-phase response measure (erythrocyte sedimentation
rate [ESR] or C-reactive protein [CRP]) must be
obtained. It is acknowledged that an individual patient
may meet the definition of RA without requiring that all
tests be performed. For example, patients with a sufficient
number of joints involved and longer duration of
symptoms will achieve 6 points regardless of their serologic
or acute-phase response status. However, for the
purposes of clinical research and trial enrollment, documentation
of each domain will be necessary for phenotyping. (Ref. 1 pg 2575)

For someone who continually looks for confirmation of my disease in lab reports, this text is like music to my ears. Don’t get me wrong, I would rather not have the disease altogether, but to have a medical publication confirm that what I feel and observe from my body is real, that’s reassuring.

Another important aspect of the 2010 criteria is it eliminates the need for joint damage to be present in order to classify someone as having RA. (Ref. 1 pg 2571) When applying the criteria to diagnostics, this (in my opinion) is an oh-duh! The aim should be to treat people in the early stages of their disease, with the goal of preventing irreversible joint damage.

The authors of the criteria really do leave the diagnosis of RA to the interpretation of Rheumatologists by writing that a diagnosis could be reached even if a patient doesn’t score a 6 or higher on the classification criteria.

However, much like other classification criteria,
clinicians may be able to diagnose an individual who has

not met the classification criteria definition or who has
features that are not a component of the classification
criteria. Diseases often present a much wider spectrum
in clinical medicine that can be expected to be captured
by classification criteria, the purpose of which is simply
to provide a uniform set of standards by which an
individual can be classified as having a clinical entity or
not.” (Ref. 1 pg 2579)

Unfortunately this freedom to interpret a patient’s presentation of a disease does mean that (similar to other Autoimmune Arthritis diseases) there is no definite marker for RA. Frustratingly I’ve found in my own experience that some Rheumatologists will doubt the diagnosis of other Rheumatologists. I have to travel by plane to see a Rheumatologist so I have not had the luxury of returning to the same doctor, or of seeing specialists as often as I should.

The 2010 classification criteria is the subject of many lectures on RA and some doctors are critical of it. I’ve attended one lecture, where a doctor said the criteria “results in too many false-positives.” Foolishly, I went to this Rheumatologist when I needed follow-up care and he doubted my diagnosis even though other doctors have agreed with it.

As a patient I trust the diagnosis of my first Rheumatologist, because I also know my body. Everyday I endure joint stiffness, tender joints, and the dreaded RA fatigue. When my disease flares I deal with a loss of mobility, puffy hands and feet, and pain that keeps me awake. Three years in, I am sure this is not a “false-positive” diagnosis.

So whether you’re a new patient seeking answers, or someone with established disease looking for treatment, stay persistent. Know you symptoms, know your disease, and know when you need to find a new doctor.

1. 2010 Rheumatoid Arthritis Classification Criteria
Vol. 62, No. 9, September 2010, pp 2569–2581
DOI 10.1002/art.27584
© 2010, American College of Rheumatology

This piece was created for Systemically Connected and is cross posted at Rheum 4 Living

A Walk down “Blood Clot” lane

by Joyce Lameire


Last post I talked about having been diagnosed with a pulmonary embolism, otherwise known as a blood clot in the lung. At first the docs felt that it was from my taking hormone replacement medication as that can cause blood clots. But something just wasn’t sitting right with me on this whole matter. I’ve had had enough medical problems that when someone tells me it was “caused from this…” something in me clicks on the analytic portion of my brain which then tells me “Um I don’t think so!” I started looking at past research on the subject of blood clots and the information I found made me wonder “How many people with Ankylosing Spondylitis (AS) KNOW they are at risk for blood clots?”

I studied what a blood clot is and the agents in our bodies responsible for keeping the blood from clotting. On Web MD I found that four agents or processes are responsible for the blood to clot. This is a narrowed down version so if you want to know more click on Web MD site. In order for our blood to be effective it has to run smoothly through our bodies for its entire life cycle but when you cut your finger, bruise your arm the brain sends these platelets in your blood to the site of injury and they begin to clot. Then a chemical is released in the blood which sends even more powerful clotting mechanism to the injury. At the same time another agent starts to work to keep the clots from growing and spreading and begins the neutralizing process. Eventually when the tissue has healed the blood clot breaks down and gets absorbed back into the body. Amazing what our bodies can do. But what if these processes don’t work? Then a clot can break off and travel through the body and end up in the heart, lungs or brain causing a considerable amount of damage.

How many times, if you even knew, did you think about how this process works? I know I don’t, even working in healthcare I never knew the implications of having a blood clot. So why is knowing information like this useful? Here are some statistics… Science Daily reported in 2011 that 100,000-180,000 Americans die as a result of a pulmonary embolism. On average, one person dies every 5 minutes due to a blood clot. Kind of makes you wonder?

Now that you have been somewhat educated on blood clots, I’ll explain why this is a concern for those of us with AS.

Back in 2011 the Arthritis Foundation put out an article called “Arthritis Patients Face Increased Risk of Blood Clots” and I can honestly say I didn’t read much of it because it mainly discussed risks with patients in the hospital. There is a lot of research out there that covers RA and risk of blood clots but this article was the first to actually mention AS. If I had looked closer I would have read that persons with AS were 1.9 times more likely to get a blood clot compared to the general population. I know 1.9 times isn’t much in the whole scheme of things, but it is more than what an average person would encounter. The study and pretty much all the other studies having to do with RA, Lupus etc., all mention the propensity of patients with Autoimmune Diseases (AI) getting blood clots. The researchers are thinking that increased inflammation is the reason for increased risk.

Looking back on my recent experience it finally made sense. My blood clot wasn’t caused by my hormone medication or any of the other typical ways a blood clot forms. It was caused from my having AS period! I am 1.9 times more likely to get a blood clot over my sister who is healthy as a horse, but the difference between my sister and I is that my pain tolerance threshold is probably 50 times greater than hers. More on that later.

People with AS are at greater risk for blood clots one because we have an AI and two we hurt too damn much to do anything. We lead sedentary lives. Yes there are those that are “superstars” but not most of us. The other thing you have to think about is our chronic pain. I don’t know about you but mine goes everywhere I go, there are no days off! So put all this information together…. We have an AI disease, we don’t get out much and we are always in pain… yep I think pretty high on that risk scale!

So back to my pain tolerance threshold being greater than my sisters; People say you will “know” when you have a blood clot. Your leg will ache, hurt, have a burning feeling or if it’s in your lungs you will feel the pain in your chest and usually it’s’ gradual. I have to disagree. I didn’t know maybe because I’m in such constant pain that maybe I just thought “Damn it’s another flare”. NO I didn’t know because those of us, whether you believe it or not, have such high pain tolerance thresholds that if something’s wrong it better cause some serious and I mean serious pain. I’m talking pain that would make a 500 lb. gorilla cry; pain that would make the “Rock” Dwayne Johnson crawl into a fetal position, you know that pain don’t you?

So just to summarize this, I got sick and couldn’t go to work. I lay around the house because I can’t do anything without having major pain. I’m already at risk for a blood clot because I have an AI disease and now that I’m lying around my risk just moved up a few notches. Every day I’m in pain, wait tonight my shoulder hurts, wow now my side hurts when I lay down, oh it’s nothing just a little flare. Now I’m having problem breathing that’s a little different, I’m not sure if that is really painful enough but better get it checked out. Drive myself to the ER, “Yes I’m having problems breathing and my side kind of hurts”. “I have a what?” By the time the pain really hit me I had gotten myself to the hospital, I was lucky I should have been dead, end of story.

I’m writing this because so many of us with AI diseases and AS have plenty to deal with already and most of us have learned how to live with our pains that adding something new will be the proverbial straw that breaks the camel’s back. I don’t want to be a fear monger but had I known that this “blood clot” was possible because I had AS I wouldn’t have been so lackadaisical about my health. I wouldn’t have said “Yea I can get a blood clot lying around doing nothing, think I’m just going to lay here all day cause it just hurts too damn much to get up!” No I would have said “Get your ass up and move girlfriend that pain isn’t going to keep you from moving, not today!”

So what can we do? If you have AS or any other AI disease you need to be more proactive; you need to make sure your doctors know that YOU know you are at risk for blood clots. Insist on getting proper blood test that measure your bloods viscosity/thickness levels, and by no means let them shoo you off and tell you “Oh your blood is fine”. We all know doctors don’t know it all so having a simple D-dimer blood test done will help them and you decrease the blood clot risk. We need to make this one of the preventative protocols for our disease whether they think it’s applicable or not.

The other thing you have to do is MOVE. Believe me I don’t like exercise, it’s like a dirty word that should be spoken in back rooms. But we have to in order to keep our blood from settling and forming clots. No matter how much I hurt I get up and walk every hour for 5 minutes, you CAN find something that works for you.

Finally, not trying to scare everyone into the doctor’s office but you really don’t want to go through having a blood clot if you don’t have to. Making sure you get your blood tested and keep moving no matter what is going to prevent lifelong changes from occurring that haven’t already because of our AS. Blood clots are serious and I don’t want any of my friends or fellow ASers to be a statistic. Get it checked out!

This piece was originally posted at Anky..Spon…What? and was cross-posted with permission.

Not to be Running on Empty

by Rhia Steele

Trying to find ways to not be “Running On Empty”…

Very early this morning the lyrics to a song I loved back in the late 70’s titled “Running on Empty”, filled my thoughts and my emotions. I “want” to do so much, yet there is only “so much” strength you can muster up to do the things you want to do. All of us, as I shall mention below face the dilemma of not enough time, not enough hours in the day, and so forth; well or ill. Being ill, chronically ill, takes so much more of those precious hours, days, weeks, and even months away from you. Time already seems to go by too fast. I will find myself doing some thing, and within what seems like the blink of an eye, or within a breath’s space, time has flown by, I am yet not really through with one thing, till it’s time to do something else. This morning was a great example.. I am waiting, waiting, for it to get light enough to water my plants outside and walk. I have gotten used to being out there at 5:30am. Now the days are “shorter” so it does not get light now until after 6:30am, So I feel as if I am “running behind”. I am out there in a rush to do the watering and my walking, then I know I need to be in the house, either feeding dogs, cleaning up their paper, making the bed, or like this morning, laundering the sheets because I ran out of energy and time yesterday. After doing one huge load of laundry, and a smaller load of my own hand washables, then making my monthly dash for the big bill of groceries at the market, I am exhausted. I still needed to do those sheets, hang up the dry clothes, I have like 20 house plants outside that need to be repotted before time to bring them in. And they are huge, or some of them are. So, it will take a while to get all of them cleaned up and potted into a new larger pot. Just handling those after 2 or 3 with the soil being heavy,and cleaning them up, is a chore. Now that most of them are not “small” anymore they have turned into a major ordeal in themselves. But, before they come in, many of them really need to be in larger pots, or have new soil… or at the very least be cleaned up and ready for the winter inside. Then of all things, life is so incredibly busy, and time is so short, I almost forgot my husbands birthday! If it were not for my own calendar and reminders, I may have forgotten it all together.. There I go again, I have to have notes, for my notes, and a calendar, for the calendar, that goes along with the reminders. One must laugh about it, or I would find myself crying over it all the time. Crying never solved one thing. Yet,these last couple of months, I would love to cry, I just do not even have the time or energy for tears either. I can’t even find time, if I wanted to, to write. I just knew I would really be pumped up by this time of the year, thinking about how quickly my “personal deadline” to have the book finished is coming up. Yet,honestly, I don’t have a clue even how I really want to behind it. I have written, the first chapter no telling how many times. I begin, it sounds good, then all of a sudden I don’t like it at all, and I quit. Let’s just say at the rate I am going, I’ll be lucky to have it completed by the first of 2015… if that. I know if I could just “find that first chapter, those first words, the first paragraph, something that will truly get me started I would probably get it written quickly. I have yet to find those words that I need in order for my “voice” to
kick in. Just a few short weeks ago, I had almost decided NOT to write anymore. I think that is still the issue. I am “just not” there… I can’t find the very essence of what I want to say. I maybe able to post in FB, or on my blog, as I am now. I just don’t have the capacity, or my brain feels like it’ has turned to “mush”. It seems I have “lost” the ability to find enough to say that all matches for an “entire book”… I have various “chapters” in my life, that can be FULL for sure. Yet, for me to have “enough” of a pattern, the “road” for the book, something that puts all of the chapters together, to hold them and have them make sense, I’m not sure of.

Lately, my pattern of writing has changed so much. I don’t write as I used to. That is not necessarily a bad thing. I am sure many of us “writers” find a different flow of words as our lives change. We never remain the same, as a river winding. Lives flow one way, and then they wind around a bend, only to almost flow in the opposite direction. With chronic illnesses, autoimmune or not, you must be ready for a huge change at any moment. You maybe as well as can be. Within hours you could be as ill, as you ever been. Or you may spend years on one medication, for it to completely stop working, and you must get used to something different. Even different doctors, more tests, everything can change. I realize “life” in general is that way. We all face change over time. But, with autoimmune illnesses the pattern of life can often be a conflict that is very hard to understand. I feel that is why we often lose out in relationships, friends, family, jobs, even our own selves. Those huge changes, that often come without notice, can alter what we know is “life” forever. I continue to “hunt” for the right diagnosis.

Sunday early morning… seems as if time is continuing to fly by, and I feel as if I’ve missed doing so many things I want or need to do. I just finished writing something on a group I belong to about a “subject’ I actually describe in some of my writing. It came from a famous song, (back in the 70′s I think), titled “Running On Empty”, by Jackson Browne. I am not sure they were exactly “famous”. I believe they were more like one of those “one hit” wonders. Their one album with that song on it was great. But, I am not sure I remember anything after it. The title, as well as the lyrics of that song remind me of life for many of us. Especially those with a chronic autoimmune arthritic illnesses and/or chronic pain issues. Life is already busy continually as it is. Nothing anymore is simple; all seems complicated. Then when you add chronically being ill with something you know you must live with the rest of your life, things tend to seem even more “draining” than those that do not have to deal with sickness. When you are chronically ill, it is like the “spoon theory”, that many of us know about. You only have so many “spoons” daily to give. You could call it anything, filled glasses of energy etc. And trying to muster up “more” glasses of energy, takes a great deal of stamina when you are well; yet you usually can. But, when you are “ill”; you deal with it already “completely empty glass” in itself… you know those times that you are so totally drained. Your body and mind revolts to tell you, “I can’t take another step”, or “give another drop”, or even speak another word… that place of total “black hole” drained bone dry emptiness. Unless you can some where,somehow, some way to ”fill it up” there is no way you will get through the next moment, much less the next day. So, you must find ways to not allow life to “drain” you to the place of empty. Just like a car, you have to have “fuel” to survive or you are just stuck in one spot, until that fuel is put back in. Plus you must learn to “budget” your life’s “fuel, whether it be physically, emotionally, or mentally, everything can be draining to the soul, and to your “aura”. Whether it is a conversation with someone who seems to take all of your “energy”, or being somewhere that burns up your emotional state, or making the mistake of doing too much at one time physically, all of it is a drain on the body and the mind and the soul. The part that is so bad, it how do we “budget” our time, or “ration” our fuel? How do we find a thrifty way to space out our emotional and mental state? That is the huge one. We maybe able to say okay I am or I am NOT doing, this, that or the other physically in a day, etc. When it comes to your emotional space and your mental place, you never know when that “drain” will come. You maybe in a spot where you are finally feeling “filled” to capacity and your glass maybe almost running over the brim for one moment, then something or someone comes along; and within a moment in time, or the blink of an eye, all has been totally depleted from you. How do we “allocate” ourselves in all realms when we know there is only a certain amount of “our strength” left? We must make a decision at to what is most important. It is that draining conversation with someone, or baking a cake for the weekend? It is being online, and writing here, or emailing friends etc… or doing house work, or going out to the market? When can you find “time” for you? To me that is the “key” to it all. That key is not so easy to come by, and when you find it, it does not always fit in the door of your life so you can turn to either open or shut the depletion from your own self. Whether we turn the “hose” on of life full blast and use up ourselves quickly, like a weekend trip that takes days to recover from, or use a small trickle of ourselves through some simple housework, and a small bill of groceries from the local market. What empty’s your glass? What consumes you? What makes you feel full again? All such great questions. Not always so easy to answer. So, rather than look for those answers, we find ourselves, “Running on Empty” all too often.

Rhia Steele © 2014


by Marcy Dyer

Methotrexate is used for a variety of disorders. While it is used to treat some types of cancer, in lower doses, it is used to treat autoimmune diseases.

For autoimmune diseases, methotrexate may be taken orally or as an intramuscular injection. The normal dose for rheumatoid arthritis is 7.5mg per week. It may be given in one dose or in divided doses.

Some patients have side effects to oral methotrexate that can be decreased by switching to the injectable form.

Before you start methotrexate, your physician will do routine lab tests to check blood counts and to ensure your liver is healthy enough for the medication. Tell your physician if you are an alcoholic, have liver or kidney disease, stomach ulcers, or an infection.

It’s very important that you provide your physician with a list of all the medications, even over the counter medicines, that you are taking. Your doctor also needs to know about any other types of treatments you may be taking – like radiation therapy.

Methotrexate can cause birth defects in a baby when taken by the mother or father. Don’t use it if you (or your wife) are pregnant or planning to become pregnant. Notify your physician as soon as you suspect that you might be pregnant if you are on therapy.

Side effects can include serious, life threatening side effects.
Call 9-1-1 if you experience the following:

  • Swelling of the mouth, throat, tongue or other signs of severe allergic reaction

If you experience any of the following, call your physician right away:

  • Very dark urine or blood in your urine
  • Vomiting coffee ground or bloody emesis
  • Bloody, black, or tarry stools
  • Diarrhea
  • Changes in vision
  • Confusion
  • Seizures
  • Coughing
  • Swelling of legs or feet
  • Red dots on the skin
  • Shortness of breath
  • Any unexpected bleeding or bruising
  • Sores in mouth and lips – can lead to dehydration if it interferes with drinking
  • Back pain
  • Signs of infection – fever, cough, chills
  • Dizziness
  • Drowsiness
  • Headache
  • Painful or difficult urination
  • Unusual tiredness or weakness
  • Yellow discoloration of the skin or eyes

Common side effects:

  • Loss of appetite
  • Nausea and vomiting
  • Acne
  • Boils
  • Skin Rash or Itching
  • Hair loss

It is important to avoid alcohol while taking methotrexate due to the increased risk of liver damage. Also, be sure to keep your follow-up appointments with your physician, including those for lab work only.

Routine labs are needed to monitor liver function and to ensure your blood counts are adequate to continue the medicine.

For more information on rheumatology, visit the International Foundation for Autoimmune Arthritis. 

This piece was originally posted at RA Gimp and was cross-posted with permission.

  1. Drugs .com
  2. Harrison’s Rheumatology 2nd Edition – Anthony S. Fauci, MD – Editor

One of the Dragon-Slayers

by Wren

There are some weapons in the battle against RA that I consider “dragon-slayers.” Unfortunately, I was unable to tolerate the one I’ll be telling you about, but from everything I’ve learned over the years, it’s one of the best.

Illustration by Howard David Johnson

It’s a Disease Modifying Anti-Rheumatic Drug (DMARD) that’s considered the “gold standard” in rheumatoid arthritis treatment. At some point, most rheumatologists prescribe it to their patients who have moderate to severe RA. In many of them, this drug causes their disease symptoms to greatly improve—or even disappear entirely. RA is incurable, but this rheuma-dragon slayer can send it yelping off with its tail between its legs.

What is this miracle drug?

It’s methotrexate—MTX for short—a powerful chemotherapy drug developed in 1950 to treat a variety of different cancers, including acute lymphoblastic leukemia in children. It works by keeping the body’s cells from metabolizing folic acid, a substance that is integral to cell growth and reproduction. Without adequate folic acid, cells die—in particular, fast-multiplying cancer cells. With methotrexate, many people who suffer from cancer may have a much better chance of surviving.

Methotrexate was quickly discovered to have a beneficial effect against several autoimmune diseases, including psoriasis, psoriatic arthritis, lupus, Crohn’s disease and many form of vasculitis. It was first used to treat rheumatoid arthritis in 1951. Generally safe, well-tolerated and effective in lower doses, methotrexate was approved by the FDA for use in treating RA in 1988.

As it does in treating cancers, MTX inhibits cells from metabolizing some of the folic acid found in the foods we eat, so most rheumatologists have their RA patients take a folic acid supplement along with their methotrexate. Doing so helps to relieve some of this powerful drug’s more common side effects (which occur in a small percentage of patients) such as nausea, headaches, fatigue and hair loss.

While it doesn’t work for everyone, methotrexate has been effective enough that it’s become the first line of treatment for rheumatoid arthritis. When it does work, it reduces the number of swollen, painful and tender joints patients report and, often, slows or even stops the progress of the disease altogether.

Methotrexate can be hard on the liver, so patients taking it must undergo frequent blood tests, monitored by their rheumatologists. In addition, because of the potential danger of liver damage, those who take it are asked to avoid alcoholic beverages. Women who wish to have a baby must stop taking the drug before becoming pregnant; men who are taking the drug should continue using birth control for three months after they stop taking MTX. Otherwise, the drug may cause harm or death to the fetus.

Sometimes, methotrexate alone isn’t enough to affect RA, so it’s given along with one or two other DMARDs. Usually, it’s taken in tablet form: several tablets just once a week. For those who cannot tolerate the oral form because of nausea, methotrexate can also be given by self-injection.

For more information about this “dragon slaying” drug, visit www.healthline.com/health-slideshow/rheumatoid-arthritis-methotrexate .

This piece was originally posted at RheumaBlog and was cross-posted with permission.