And now, the feet!

Ok, so it has been a LONG time since I posted here.  I have had so much more bad news that I basically forgot this blog and kind of gave up.  If anyone is actually reading this that has chronic pain, you understand those times where you just want someone to make it all better and yet you despair because you know they cannot.

So, the news.  I now have arthritis in my feet.  Which doesn't sound so bad except that my feet are used for walking, but here's the really great part...drumroll please...I have tarsal tunnel syndrome!  This is just like carpal tunnel, except in your feet.  YAY!  So, I already had nerve damage that causes the left side of both of my feet to go numb.  I went to the neurologist for yet another nerve test, which I do not recommend if you can avoid it, and after stabbing me with a bunch of needles he told me what I already knew:  there is no signal whatsoever in my left foot from my ankle to my pinkie toe and a very small signal in my right foot in the same place.  Yet again, there was no explanation given.  He just looked at me and sighed.  

The surprising part was that he did a different kind of test where he inserted needles into my muscles (ouch) and listened for electrical activity, and there was no sound at all in the arch of my foot.  This is where the tarsal tunnel diagnosis came in.   Fun, fun, fun.

All I have left for exercise is walking, but then my left foot really started to hurt when I walked.  Since I have no feeling in that part of my foot, I was worried.  I went to my orthopedic surgeon and found out I have a stress fracture in my left foot.  Since I can't feel anything, I have no idea what I did.  And, of course, there's nothing to be done.  I just have to live with it.

Everything that is wrong with me, and I'm up to TEN diagnoses now, has no cure and must simply be tolerated.  It's extraordinarily frustrating and, frankly, makes me want to scream.  Basically, once my hands started to feel better after upping the Humira, my feet started to go.  As ridiculous as it sounds, I feel like there is a little god of pain somewhere who is focusing on just me.

ARGH!!!

The latest and greatest

For anyone who actually follows this, I apologize that it has been awhile. Things stopped working very well and I wasn't sleeping. No sleep sets off the fibromyalgia which sets off the chronic fatigue and BPD and that makes my arthritis flare up. So it was back to the Rheumatologist who ordered more tests and more medication.

No here's where the "Sam the medical wonder girl" stuff enters into the equation. When all of the inflammatory/immune stuff started, they checked for both the rheumatoid factor and the level you check for lupus. I tested positive for both. That's why they couldn't decide if I had RA or Lupus. Well, I recently entered a study for UCLA on RA and they checked my blood, and I tested negative for Rheumatoid Factor. So I went back to my doctor and she checked it, still negative. A couple weeks later she ran it again and BAM, they're both positive again. Go figure. These are supposed to remain positive or negative folks, not come and go.

Fortunately, my Neurologist is a rock star and so she is determined to make my hands functional. I don't mean what all the rest of them mean: there will be some limitation due to the disease but there will be some return of function on this medication. Oh, no. She means, my hands will work and she won't stop until they do! So, she took me off of the Enbrel and put me on Humira, which is also a biologic, but it's formulated differently and seems to help people with joint swelling more than other meds. I don't have much joint swelling, but what the hell, I'm game, and this one is only taken once every two weeks! Well, it worked better, but not enough to really return function. I still couldn't cook or if I could, I couldn't pick up the pans to wash them, I still couldn't hold a coffee cup and I still couldn't open jars. So, she upped it to once a week and increased my Lyrica which is the Fibro medication.

Here I am, two weeks later, have cooked THREE TIMES this week, dressing my daughter, doing my laundry, grocery shopping, and typing my blog!!!! Hallelujiah and praise all the little gods. :-) I'm due for my shot tomorrow, so I hurt and I can't sleep, but it has been a great week.

I'll type more tomorrow after my shot.

as the pain continues...

Well, it has been awhile since my last post and yet, the pain continues. I have to go get a shot, a facet block, in my back next week since the sciatic nerve is pinched yet again.

This is one of the problems with spinal stenosis...your legs go numb if you stand or sit for too long and if you're not careful, the nerves get pinched too.

The facet blocks really help but for a limited time. However, getting the nerve unpinched is worth it.

I have started weekly massages to help with the fibromyalgia but it seems to be setting it off more rather than helping it, so I'm not sure if I will continue with those. Having a three year old doesn't help my back or my hands, but what are you going to do? Should I stop picking her up? Should I stop playing with her? I probably should for my own health but I just can't do that to her.

I chose to be a single parent knowing that my health/body was deteriorating, but I wouldn't choose differently, even if I could.

That's my update for anyone who is interested!

A lesson about pain

Before I continue describing the various and sundry symptoms of all my diagnoses, there's something everyone should know about pain. I'm going to steal shamelessly from an author named Jim Butcher who writes:

...growing up is all about getting hurt. And then getting over it. You hurt. You recover. You move on. Odds are pretty good you're just going to get hurt again. But each time, you learn something.

Each time, you come out of it a little stronger, and at some point you realize that there are more flavors of pain than coffee. There's the little empty pain of leaving something behind - graduating, taking the next step forward, walking out of something familiar and safe into the unknown. There's the big, whirling pain of life upending all of your plans and expectations. There's the sharp little pains of failure, and the more obscure aches of successes that didn't give you what you thought they would. There are the vicious, stabbing pains of hopes being torn up. The sweet little pains of finding others, giving them your love, and taking joy in their life as they grow and learn. There's the steady pain of empathy that you shrug off so you can stand beside a wounded friend and help them bear their burdens.

And if you're very very lucky, there are a very few blazing hot little pains you feel when you realize that you are standing in a moment of utter perfection, an instant of triumph, or happiness, or mirth which at the same time cannot possibly last - and yet will remain with you for life.

Everyone is down on pain, because they forget something important about it: pain is for the living. Only the dead don't feel it.

Pain is a part of life. Sometimes it's a big part, and sometimes it isn't, but either way, it's part of the big puzzle, the deep music, the great game. Pain does two things: it teaches you, tells you that you are alive. Then it passes away and leaves you changed. It leaves you wiser, sometimes. Sometimes, it leaves you stronger. Either way, pain leaves its mark, and everything important that will ever happen to you in life is going to involve it to one degree or another.

Thank you, Jim Butcher.

Now, please understand that I try to be as philosophical about all of this as I can. I'm sure you have all heard, "That which does not kill me..." and sometimes I can manage to appreciate the lessons chronic pain teaches. It teaches empathy and forbearance. It teaches you to hear yourself as you complain to those around you. It teaches you that sometimes people can't "shrug off" the pain of empathy to stand beside you and help you with this burden - it teaches you that sometimes the pain of empathy is so strong in those you love that they simply cannot help you one more time. It teaches understanding of self and others. I have learned much in my years of constant pain.

However, I still weep and rail at the universe and my own body for this burden. I know these lessons and I accept that I need to learn them well, but sometimes that child in me cries out, "it's not fair!" before I can get a grip on it all and breathe again.

I just wanted anyone who reads this to try to remember that all humans have pain. It's part of the condition. It's not wrong to lean on people and it's not unusual to rant and rave. But sometimes, if you can focus on the lessons it teaches, your pain can at least be useful to you and not the senseless monster it can seem.

Rheumatiod Arthritis

Today I'm going to deal with RA as it is what hurts me today.  For anyone who does not know, RA is a chronic, inflammatory, autoimmune disorder that causes the immune system to attack the joints.  It is disabling and painful and can lead to substantial loss of mobility due to pain and joint destruction.  This is not to be confused with osteoarthritis which is wear and tear of the joints, or degenerative osteoarthritis which wears down the very bone but does not affect the other organs of the body.

RA is a systemic disease which often affects tissues throughout the body including the skin, blood vessels, heart, lungs and muscles.  It affects many joints but is most known for the damage to the hands.  In it's later stages, nodules form over the bony prominences in the hands and will curve the fingers (most often) towards the pinkies.  However, medications now available profess to not only halt the disease but to repair damage as well.  I'll keep you posted on that last.

So, basically, it hurts to write, type, do up my buttons, tie my shoes, zip my pants, cook anything that requires that I lift the pan or clean the pan, open a jar, reach above my head to bring something down, blow dry my hair, and drive.  We use our hands for SO many things that we do not think about how vulnerable we become when our hands fail us.  So now I prebutton my shirts, wear slip on shoes, buy take-out more often than I can really afford and have someone come in to clean.  Jars and my hair...well...I'm on my own.  All of my medications lack a child-proof cap because I cannot open them when my hands hurt.  I can, however, open a cap with my teeth if I must, so at least I can get to the meds.

As to that - there are a few medications out there for RA.  The first one all insurance companies will make you try is methotrexate.   Methotrexate is what is known as a DMARD or a Disease Modifying Antirheumatic Drug.  DMARDs halt disease progression and have been known to produce durable remissions.  However, this particular medication gave me migraines, so I did not take it for long.  Taking DMARDs early helps prevent structural joint damage, and it is the first thing you will receive from any rheumatologist.  The next step, which, as I said, I reached rather quickly, is a drug called Enbrel.  Enbrel is a biologic agent known as a tumor necrosis factor alpha blocker.  In fact, Humira, Enbrel and Remicade are all TNF blockers but they have different bases.  Enbrel has a manufactured base, Humira has a human base, and Remicade (I believe) is both mouse and human based.  I took Enbrel for the last year and it worked well enough.  The problem is that it costs $400 IF YOU HAVE INSURANCE!  It costs $1200 without insurance.  The only factor that mitigates this highway robbery is the fact that the manufacturers have a program called "co-pay assist" and they'll help you out with most of it.  My co-pay for the last year has been $75 a month while injecting Enbrel once a week.

My Rheumatologist has decided it is not as effective as she would like, so I was switched to Humira, which comes in an injection pen (as opposed to a syringe like Enbrel).  Little did I know how much this was going to hurt!  Not a fun experience.  I will say that, for me, it is more effective than Enbrel.  I think I'm actually going to sleep tonight.

In terms of dealing with the pain, the first rule is to stay warm.  Really.  Stay REALLY warm.  It helps keep the inflammation down in the joints and, consequently, helps with the pain.  My truest friend knitted a pair of Fagen gloves for me so I could drive my daughter to school every day and it really helped.  If you are in dire straits, take a bath as hot as you can stand it and stay in for 20 minutes.  This might seem counter-intuitive since swelling calls for ice in most instances, but trust me, you NEVER want to put ice on RA pain and a bath will help.  Do not waste your money on arthritis creams...they're for the osteo and will not do you a bit of good.  You can, however, get heat wraps for your hands at most drug stores, and they last up to twelve hours.  Sleeping will be a problem because by the end of the day it all hurts worse - hands, elbows, shoulders, neck, back, hips...all of it.  I have not yet found a way to make this better other than sheer exhaustion.  Opioids don't really help and anti-inflammatories help only a little.  The best thing you can do is learn to meditate and try to find a happy place.

So, that's it for tonight...my hands are starting to hurt!  :-)

living with chronic pain

So, I have been told by all and sundry that I should start sharing the volumes of information I have gathered on chronic pain as I suffer from (or have been cursed by, or challenged by or even gifted with) six separate diagnoses which cause pain in some form or another.  I am also one of those who must research all I can about each condition and talk it to death with the few friends who will still listen to me, so possibly this is their attempt to stop the endless phone calls.

I have (in no particular order) bipolar disorder, chronic fatigue syndrome, degenerative osteoarthritis, rheumatoid arthritis, fibromyalgia and spinal stenosis.  I take as well as inject medicines and supplements for these but they only nominally work.  I would like to share what I know about dealing with chronic pain and doctors and medication and insurance companies, but I'm not sure where to start.  I guess the best place to begin is with tricks that may help.

First, let me define chronic pain for anyone who is interested.  Chronic pain was originally defined as pain that lasted six months or longer.  It has been redefined recently as pain that persists longer than the temporal course of natural healing associated with a particular injury or disease process.  Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage.  And yes, I know I should have sourced those but I don't remember from whence I pulled them.

Pain is subjective in nature and defined by the person experiencing it, and the medical community is just beginning to understand that chronic pain now includes the part the mind plays in processing and interpreting pain signals.  This last is probably the most important thing you must know if you are in chronic pain facing your doctors or if you know someone who is in chronic pain.  It would feel very different if it were your pain and my doctor is sure he/she would feel it far less.

There are things you can do depending on the location, severity and duration of the pain.  Anyone who has to endure hours of truly debilitating pain would benefit from labor and birthing techniques (and yes, they work for men as well), whereas anyone who has to live through hours of the same pain over and over, whether it is dull or severe must either learn to create an "off" switch or learn to become one with the pain.  I know this sounds like something from "Kung Fu" but it is, alas, true and besides, it works if you can master it.  There are other things you can do as well, but I want to know who's listening before I start to rattle of my vast encyclopedia of knowledge.  So I think this will do it for my first post.