WANTED

by Chris Dean

systemically-connected-wanted

If you’ve been a patient for any length of time, chances are you’ve switched Doctors, fantasized about it, are currently considering it, or all of the above.
The thing about Doc hopping is, unless you have a Psychic with a mainline to the medical profession, it’s impossible to know if the new Doc will be any better a fit than the old one without an appointment, a nice three-month-wait, and a serious chunk of our hard earned change.
But what if we could hold New Doctor interviews? Wouldn’t it be a dream come true if we could take a more traditional approach and simply place a Want Ad? What if the Doctors could read over our list of requirements for them, before that first expensive, New Patient appointment…

WANTED
Doctor. Must be up for a challenge, love puzzles, and comfortable when dealing with no-win scenarios.
A working knowledge of anatomy and a love of research is a must. Bedside manner is optional, as long as you don’t mind patient with equal lack of people skills.
An ability to work as part of a team and a willingness to frequently reevaluate your current course of treatment is non-negotiable.
If you like thinking outside the box and can work closely with someone you understand you CANNOT cure, only help them discover ways of slowing the progression of a chronic illness, assisting them in managing symptoms and finding ways to lead the most productive life they possibly can, then you’re the right person for the job!
All applicants should submit a video response explaining how you would deal with a weird, apparently unrelated set of symptoms. Also include how open you are to a patient who has all the time in the world to do their own research and usually shows up to each appointment with a set of pertinent questions and information they have found since last appointment.
Foul language and eye-rolling are perfectly acceptable responses, as are occasional deep sighs, as long as patient’s questions are taken seriously and given enough credence for further discussion of any topic that relates to patient’s illness.

Bonus Question: (Not required, but would help in determining suitability for position.) If you were given this position and arrived at a point in time where you felt you could no longer fulfill your duties as this patient’s Primary Care Physician and Coordinator for their Medical Team, how would you go about ending your professional relationship?

If you place an ad for the ideal Doctor, what would your list of requirements be?

WANTED appeared in its original form on pixie.c.d. and is reprinted here with permission.

Serenity

by Kerry Wong

Grant me the serenity
to accept the things I cannot change,
the courage to
change the things I can,
and the wisdom to know the difference.

We’ve all seen & heard this before. It’s the foundation for any 12-step program, and in some form or another, it’s really at the core of any self-improvement plan. Unfortunately, it’s not always as easy as it sounds.

I usually focus on that second part: changing the things I can. Whether it’s actually doing something different or simply finding a different way to approach things, I feel like I’m doing something constructive. At a minimum, I can always change the way I think about the situation. I emphasize the positives – what’s still good in my life when things seem to be going bad, what I still have when I’m grieving over a loss, and what still makes me smile when I am ready to cry.

It’s that first part that I’m struggling with right now: accepting the things I cannot change. Whether it’s denial, wishful thinking, or just plain stubbornness, I’m having a really hard time accepting my new reality. Honestly, it’s hard enough to just say it. I find euphemisms, or don’t even say it at all.

“ … what I’ve got going on … ”
“ … all my issues … ”
“ … my situation … ”
“ … all this health crap … “
I can say that I’m in pain, but that’s only a symptom. I can say that everything hurts, but people just think I’m exaggerating. I’ve even gotten to the point where I can say the names: I have Rheumatoid Arthritis and Fibromyalgia (and a handful of other health issues) … but most people don’t really understand what either of those terms mean, so in a way, that doesn’t count. What I have a much harder time saying is …

I am sick.

It’s not like a cold or the flu, which I’d recover from in a few days. I’m in pain, but it’s not from an injury that will heal. My body is attacking me from the inside, but there’s nothing the doctors can cut out to make it stop. I have an autoimmune disease and a complex chronic illness – neither of which are fully understood by doctors, and neither of which has a cure. To put it bluntly, this is some serious $h*t. It leads to degeneration, deformity, and disability.

Disability.

That’s another word I’m having a tough time saying, let alone accepting. I don’t want to be disabled (not that anyone does). I’ve spent such a long time fighting it, “working through the pain,” going further, longer, faster, doing more than what a normal/healthy person could do (can we say overcompensating?), and then really paying for it afterwards. If someone asked “can you do this?” I didn’t know how to say “no, I can’t.” I did whatever was asked of me and more: the adrenaline helped me get through the moment, but as soon as it was over, I crashed … hard. After the last few big events (about a year ago), I was completely incapacitated for days at a time.

Things have only gotten worse since then, and now it’s not just a matter of the consequences after overexertion. All too often it hurts too much to get up and go for no reason at all. I continually discover things I’m no longer able to do, from little things like opening a jar to life-altering things like working full time. I do the best I can to focus on the positive, but this is a reality that I must face … and accept.

A quick Google search gives this simple, straightforward definition:
dis·a·bil·i·ty
/ˌdisəˈbilitē/
noun
noun: disability; plural noun: disabilities
a physical or mental condition that limits a person’s movements, senses, or activities.
synonyms: handicap, disablement, incapacity, impairment, infirmity, defect, abnormality; condition, disorder, affliction
“my disability makes getting into bed a slow process”
· a disadvantage or handicap, especially one imposed or recognized by the law.
“he had to quit his job and go on disability”

It should be as simple as that. I do have “a physical … condition that limits [my] movements, senses, or activities.” But it’s not simple. In fact, this is possibly the hardest thing I’ve ever had to say. I’m realizing that no matter how much I want to, this is something I cannot change … so it’s something I have to try to accept.

At least I know the difference.

This piece was originally posted at Float Like a Buttahfly and was cross-posted with permission.

World Autoimmune Arthritis Day

Originally posted on Pollyanna Penguin's RA Blog:

waad

World Autoimmune Arthritis Day, a 47 hour ONLINE Virtual Convention that starts at 6am ET/USA (11am UK) May 19th and ends at 5am ET/USA (10am UK) May 21st.

Anyone interested in finding out more about autoimmune arthritises can join in, but you MUST register. If you want to attend the live events it’s $5 before May 19th or $7 ‘on the door’ (it’s all virtual of course!).HOWEVER you can also register for free if you just want access to the library of info and all the free resources, which will be downloadable until May 31st.

For info on all the great live events taking place, go to the registration page here.

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How Did I Get in This Lineup?

Originally posted on Rheum 4 Living:

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World Autoimmune Arthritis Day is coming up (May 20.)  The annual event brings patients, supports, researchers, doctors, and other healthcare stakeholders under one virtual roof to raise awareness and provide resources on autoimmune arthritis diseases. This is year three of WAAD, organized by the International Foundation for Autoimmune Arthritis.

Powerful patient advocates take part in the event each year, providing important perspectives on the impact autoimmune arthritis diseases have on ones life while also giving effective coping strategies.

This year I have the honor of being one of these event guests. I’ll be leading a chat on juggling a career and autoimmune arthritis. I’m looking forward to sharing my strategies to success in the workplace while coping with a chronic illness. Though I am a bit starstruck when I look at the other chat guests.

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See that?  That’s a screen shot from the registration page… showing four of seven chat…

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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

whatdoesaflarefeellike-300x220

©http://www.anesthesia.org/images/pain3.jpg

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.

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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

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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.

Blessings,
Jane

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.

References:
1. 2010 Rheumatoid Arthritis Classification Criteria
ARTHRITIS & RHEUMATISM
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