Psst. Hey, Miss Perky. You are really in denial.

Lately as I’ve spent time on different forums related to different autoimmune conditions, I have noticed a lot of people in denial.  Normally I don’t spend much time on forums so that is probably why I am surrounded by more of them than usual.  Honestly, they irritate me.  I feel like Meredeth and Cristina on Grey’s Anatomy and these super perky deniers are the Aprils of the world.  It doesn’t matter if someone is venting, sharing a life threatening symptom or a good day they are having; whatever it is will get the same perky response.  The message is always be positive and happy.  The responder is in denial and trying to deny their misery over being diagnosed with a chronic disease so their answer is to be overly positive and perky.  And drag the rest of the world into their little charade.  Fine, be in denial.  Fine, be super perky and like April.  Don’t expect the rest of the world to want to be like you.  It’s like you can say, “I am dying,” and they will give you something to be thankful for or say, “Thanks be to god.”  Um, I am not a christian, but I would think christians would be offended when you, uh, misuse his name.  I always picture overly perky people as laughing like Dolores Umbridge in the Harry Potter and the Order of the Phoenix movie.  (It’s at the end of the clip).  

I think part of this “let’s never leave denial” point of view is encouraged by our society here in the US.  Americans like to be independent.  Accepting they are sick means admitting they need help.  They can feel ashamed to need aids or financial assistance.  Not to mention there is this ideal we are all supposed to meet and if you are old, sick, fat you don’t meet this youthful, healthful view that we are pushed to meet.

“It’s not denial.  I’m just selective about the reality I accept.” ~Bill Watterson

Acceptance means the “act of believing”.  Denial is a “refusal to accept or believe something”.

It is not easier to live in denial, but it would be easier to be healthy so it appears easier to just deny beng sick.  There is nothing wrong with being positive or having gratitude.  There is something wrong with living in denial and encouraging others to live there with you.  I just wish there was a way to get the perky deniers to see they are harming them selves.  I wish they would look in the mirror and say, “It is what it is.  I am sick.  This is my new reality.  I don’t have to like it, but I can’t keep denying it.”  They would be healthier for it.

If you want to know more on accepting your disease, I think this is a very helpful post.

The good, the bad. . .the family

I got a call the other day from my grandma.  I remembered to call her back today.  She wanted to tell me that she went to a talk on neuropathy and the lady talked about lyme disease (which I have had).  ”It can come back you know.”  True, but not usually for someone who started antibiotics a couple days after the bite.  Yada, yada.  And then. . .it went something like “I think you will find an answer.  You wil find out what is making you sick and get better.”

Long, drawn out sigh. . . .  Yeah, about that.  I have had doctors say many things.  But they all said that I was really sick and I wasn’t getting better.  Acceptance is a good thing.  I have accepted that I am not getting better.  That is how you move on and after years, you have to do that!  I love my grandmother, but this is just one more time she has put strain on our relationship.  I have been told I should follow this doctor over here and read his books and eat this diet.  Why can’t you eat that food?  What is IBS?  I explain it to her to then have to listen to why I should still eat that food even though I told her the truth.  It makes me sick.  And then it always ends with when are you going to come see me?  She has stairs to her house.  I get tired walking up stairs.  She talked me into it for Xmas.  Her bf drives them way further than my house to visit people or go on cruises or go to appointments with the VA in other states.  I sometimes cannot drive.  I am always sick.  And she has stairs.  And now I get it–she won’t give up on me visiting her because I should be well enough too.  She can’t accept I am sick.

(There goes my left hand again, one handed typing).  If you are the family member doing this to someone else, please stop.  I know, you don’t think you were doing anything but being positive and helpful.  Well you’re not.  When I am at my sickest, I choose to spend the little time I can spare with those who make me feel better.  I seriously doubt I am the only one to do that.  I don’t want to talk about being sick all the time.  In fact, I’d rather share the quick facts and move on.  But if someone can’t accept that I am sick, then I cannot share the truth with them.  I am too sick to deal with someone else’s grief which will just make me sicker.

If that person is you, what you can do instead is literally walk the walk (most organizations have walks, runs, bikes) and donate to find a cure.  And give those you care hugs.  Those are always needed.

What’s in a name?

This is starting out as a one handed post.  We’ll see how this goes.

Names.  They seem so important.  When you are sick with something autoimmune, you spend time in limbo land, waiting for a name.  Diseases like this usually show up in 2′s and so on.  Some lists are so long it is easier to just say autoimmune.  Sometimes we wait for a name to have it not taken seriously.  Or maybe we are striving for a name of a disease that prefers to remain hidden.  I may have such a disease.  If it walks like a duck, talks like a duck and quacks like one, well then it’s a duck.  But what if it morphs into a tiger?

In the last year, I started getting new symptoms.  No one knew what they were.  No doctor pointed me in a direction that may lead to an answer.  My xrays remain erosion free.  My bloodwork is essentially perfect.  I figured these symptoms are either RA symptoms (or general autoimmune ones) that the docs weren’t aware of or this is something else.  I did research.  I didn’t like what I found, so I decided maybe this is all in my head.  I found a new rheumie.  Researched even more new symptoms and they all point back to one thing.  And maybe the answer was there all along.

Raynauds as a child.  Got my official diagnosis at 18 (and a test that was off, probably ANA which is the only test to be off).  In my 20s I was concerned about red spots that were out of control on my arms.  I was told they were telangietasias and laser treatment was they only thing I could do.  Now they are on my hand.  An xray in February 2012 said I had calcinosis on my shin.  It wasn’t until that foot was xrayed again this year that I understood the long whatever calcification name is actually calcinosis.  I also have skin changes that patients have confirmed their hands looked like in the beginning of sclerodactyly.  Hopefully the dermatologist will know it if they see it.  CReST.  Or more exact, limited scleroderma is what my symptoms match.

Is it scleroderma?  Rheumatoid disease?  Both?  MCTD?  I can tell you what it is–it is taking it’s sweet time.  Biggest concern at the moment is breathing issues and other symptoms that could be concerning.  I did PFTs and they were great.  Echo coming up and stress test.

Still on enbrel.  I switched to two 25mg shots a week, which means no painful injection.  My pain level is up again.  It spiked once before on enbrel and then went back down.  I am hoping that happens again.

Yep. One handed post.  My left hand is angry right now.  I am done before the right hand joins in, so all is good.

 

The Mystery of Autoimmune Diseases

Autoimmune diseases are mysterious.  Getting a diagnosis is a challenge because they hold all the cards.  Although it is still just a theory some how it is accepted that the immune system is attacking the body.  Yet, being a theory, someday the medical profession may look back on that and laugh.  Cause? Unknown.  Is it genetic?  Seems like more of a maybe.  One doc says no, another says yes and still another says autoimmune disease runs in families, but you don’t necessarily inherit the same one.  It is said that sometimes a disease presents as one disease, but turns out to be another.  How do they know this?  I mean what if in the beginning it is just autoimmune disease and later it becomes just one?  Maybe it bounces around between symptoms not because it started out different, but it really hasn’t decided which one?  And if you have more than one, are they really sure that all individuals have two distinct diseases instead of one disease that is bouncing back and forth, encompassing a range of symptoms?  Especially in the case of RA and lupus where there are so many similarities.  If in MCTD it encompasses pieces of 5 different diseases then why do the doctors assume that everyone has just one disease?  Assuming they know “everything” there is to know doesn’t help patients who are sick, but undiagnosed or who are showing new and different symptoms.  These diseases do not care what perimeters you make for them.  I think the approach to autoimmune disease should be if you are clearly sick with one, but they don’t know which one, it is worth it to treat the patient with mtx.  Prednisone is short term.  Plaquenil is usually said to be more of a symptom controller than for disease control.  Mtx is pretty broad in the diseases they treat.  If the symptoms match a variety of diseases that are treated by mtx then starting treatment may result in a better outcome for the patient.  I also think that if someone’s symptoms are changing and yes maybe it will turn out they had that tricky disease that presents as something else, then it is safe to assume their meds aren’t working.  Try a different med.  Sure, you want to know which disease is needing to be treated, but wouldn’t it be better to prevent future damage then wait around until something irreversible happens?

The embarrassing post

I thought I would touch on the more embarrassing stuff that goes along with chronic illnesses.  You know, the stuff I won’t talk about with pretty much anyone, er, basically no one.  Then why on my blog?  In hopes that someone feeling alone, thinking it is just them, will feel less alone.  True, someone who I don’t want to tell about this stuff may find my blog, but no one in my real life circle has just happened upon my blog.  Chances are, minus anyone I share it with, no one will.

No one wants to admit for instance that they need help with eating and bathing.  I have  and do struggle with both.  I keep my hair shorter now although it’s longer than it was.  Taking advantage of the enbrel.  But yes, some days washing it myself is hard or impossible.  Until my shower chair broke, I had one.  Plan on getting another one.  Sometimes it’s needed, sometimes it’s not.  Sometimes I have had too much pain to hold a utensil when eating.  I use corelle ware dishes (lighter) and smaller, narrower cups that I can hold easier.  My newer problem is things happen like dropping a plate or full glass of whatever and I don’t know why it happened.  I drop food on myself constantly sometimes.  I don’t like the fact that sometimes a lot I need help eating, but I do.  So if you do too, you don’t have to like it.  And I definitely understand the embarrassment and disappointment.

Other things I have needed help with, and you may too, is things like getting gas in my car.  I have struggled with turning the gas cap.  One day I couldn’t get it tight enough so the car beeped at me when I drove it.  I have had days where I knew the pain in my legs would be too much for me to stand there while I filled up so I asked my bf to take care of it for me.  Getting dressed can be a struggle.  Name any article of clothing and depending on how I am doing it could be a struggle that day.  Of course I also make things harder on myself like trying to stand while putting on pants instead of just sitting on the bed.  (What??  Can’t someone in their thirties do that?)  Due to stiffness/lack of mobility I cannot see the back of the refrigerator or cupboards (or reach them).  So instead of simply finding whatever it is I need myself I have to ask for someone to see if there is a container the size I need or to put leftovers in the front of the refrigerator for me.  Getting up off the floor?  Sometimes.  Usually I must use a wall or something near by.  Sometimes even that doesn’t work.  Seriously embarrassing!  So why do I keep getting on the floor??  On the other hand, think of all those opportunities to use the “I have fallen and I can’t get up” line??

Getting pills out of my pill container.  Putting pills in there to begin with.  Carrying food to the table.  Somedays I cannot be trusted to even hold a glass of water.  And for those with sjogren’s:  think about the restasis drop containers or optive refresh (I use both).  Those are ridiculous hard to open sometimes.  And my doc has me reusing them so I have to put that tiny little lid back on the container??  And one for the ladies, shaving my legs.  And along those lines, it is also a struggle plucking my eye brows too.

Sometimes these illnesses are just plain embarrassing.  They can bring about fear as you need help with more things you used to do yourself.  They can also, at times, give you reason to laugh.  None of the feelings you experience are wrong.  So no matter if we are comforting each other or laughing together, just know you are not alone.

 

Love, hate relationship

With Valentine’s Day around the corner, I have to ask.  What kind of relationship do you have with your. . .med?  You know.  That RA one that you take.  Or whatever toxic med you are taking for your disease.  Do you love your meds or hate them?

Would it surprise anyone if I hate mine?  I actually say “I hate you, Enbrel!” during my shot each week.  Not everyone finds the injection to be painful, but I do.  It is supposedly the preservative and I could do two 25 mg shots a week instead of one 50 (assuming my doc would agree), but then doing 3 shots a week would not be easy for me either.  (Still do mtx too).

But does it work?  Yes and no.  It took awhile, but eventually it lowered my pain level significantly.  I still take salsalate too and I still have pain that exceeds that everyday, but I was never looking for zero pain.  I just wanted it to be tolerable and it is.  I still have swelling in my fingers and my ankles swell.  Sometimes my big toes.  Plenty of stiffness with the cold.  Fatigue.  Lots of other little nuisances (dizziness or whatever for the day).  But what more can we expect from a med?  I have those days when the pain is high, but not everyday.

When you come from where I was to where I am now, it feels weird.  The pain was literally out of control.  And to think everyone around me had expectations of how I was supposed to behave in spite of that much pain!  Really??  It is not humanly possible to live like that and I thought daily about how being dead instead of in severe pain isn’t the worse thing.  But no, we are supposed to be super humans.  Never get angry or emotional even though the pain makes our minds come unhinged.  Actually, where do other humans get off demanding we function like that??  Function the way they think they would.  It’s more pain than they can freakin imagine, but they are awesome so certainly they would behave differently than us.  (All patients roll their eyes here).

So yes, I hate Enbrel.  But, I hate the pain more.  For over a year I have hated my mtx shots and for almost 6 months I have hated Enbrel.  What I hated the most was the thought that I could go through the painful injections and never get any relief from them.  All of that for nothing.  For non patients, it is important to understand that there is no guarantee for how long a med will work.  I will not be on Enbrel forever.  One day, the severe pain will return.  These meds don’t work forever.  We have pain that patients describe as always hitting a new 10.  Every time you think it got the worst it possibly can, it proves you wrong.  I do wonder though that if others know we have something that causes destruction to the body (this goes for more than one disease), why would they not think it would be complete, torturous pain?  Until it is you, there is no way for you to know how extreme it is or understand the fear we live with.  Fear that are meds will go from being a love, hate relationship to a hate, hate because they just stop working.

Happy Valentine’s Day.  Here’s your shot….

Rheumatoid Awareness Day

Rheumatoid Patient Foundation has declared February 2nd as rheumatoid awareness day.  Read their press release here.  Due to the fact there are so many different diseases connected to arthritis RPF wants rheumatoid to have it’s own day (as well as it’s own name).  There is more to rheumatoid than just arthritis.

If you to would like to promote this important day, here are some ideas you can follow that would help RPF and people with rheumatoid everywhere.

Helpful tips

I thought I would share with you some things that have helped me.  I did a little experiment and wanted to post the results here, but thought I would add one or two more things that may help someone.

The experiment came about by accident.  Weekends are my sick time.  I may be able to post a short blog post today, but before my discovery chances are I would be in bed.  Granted I really have spent most of the day in bed, but my sickness isn’t as nearly as bad now.

As many of you have probably guessed, I am referring to the days after my injections.  It used to be I was completely useless 2-3 days after the injections most weekends.  Now if there is a 3rd day I am much less sick and although I still need to sleep off the effects of the meds, I don’t feel as sick.

One Saturday, I grabbed a g2 (gatorade) when I was thirsty instead of water.  Just wanted something with flavor.  Anyways, I felt better later that day.  After that any time I didn’t feel well I would grab a g2.  Then I wondered since coconut water has electrolytes if it would work the same.  My guy brought home samples of coconut water from his work not knowing I was thinking of buying some.  The samples were of coco libre and amy’s and brian’s coconut juice.  They worked!  In fact better than the g2.  Unfortunately the samples he brought home weren’t being sold at his warehouse so after research I decided to order a case of c2o coconut water.  Many reviews online said it is the closest canned water they have tasted to the real thing.  And just for those concerned about it, it comes from Thailand that has very stringent regulations on cat food so I figured chances are it extends to people food too.  ;)  On a side note, since drinking the coconut water (almost everyday now) I noticed it does make a difference in your skin.  I’ve been in to coconut water since before it was a big thing and I am glad it is because the price has come down.  But, now that I am older I can see the claim on it being good for skin isn’t a myth.  Works great on making my crows feet less noticeable (no joke).  It was the only thing I changed.  Using the same eye cream which hasn’t been doing enough for awhile (just using it up) and now I don’t think I need to buy another one!

The other thing I wanted to share is for those of you who struggle with IBS.  If you aren’t already drinking peppermint tea, maybe you should.  Ever eat something and find that it wasn’t fine for you to eat and you get cramps?  This stuff seriously calms things down and fast.  I also read on the www that it helps with D.  Don’t know if that is true, but something to keep in mind.

I may have missed Kelly’s blog carnival due to being sick and I haven’t read all the posts so I am sure someone said this already, but the very obvious answer for pain: icy hot.  We do have an arnica gel by hyland’s too, but when I am really bad it works for a second or two and wears right off.  So if you haven’t read this post on Kelly’s blog and want more info on ways to non medically help with your pain, be sure to check it out.  (I will be working my way through it looking for a good electric can opener idea.)

Edited to add:  Here is a link to another blog post where fellow patient discusses how gatorade g2 helps them with mtx hangover.

How much to share?

We have bad days and good days.  Some of us only have bad.  No news is bad news with rheumatoid.  If we aren’t feeling well or had a test result that wasn’t good, you may not hear from us.  Does this keeping to ourselves give the wrong impression to some?  I think it may as many view no news as good news.  Sure, if your doctor doesn’t call to discuss a test that is generally a good sign.  But, if someone is too sick to be in contact with others than no news clearly doesn’t mean all is well.

There is story after story of people, those not sick, the healthy friends and family members, misunderstanding what it means when they do see us and hear from us.  What they don’t see is how many days you rested before visiting them.  How many days you are in bed “paying” for your visit afterwards. (It is very common for those with RD to say “I am paying for the visit” or “paying for my walk” and so forth.  It means we are in great pain, have increased stiffness, can’t even get out of bed.  The symptoms may be different for each patient, but the idea here is the same).  To them, you look great.  They know that a person can look great on the outside, but be in pain on the inside.  This does happen to everyone, but when you have a disease with no to little awareness, people can’t seem to take what they know and apply it to the chronically ill.  They saw you laughing at their jokes or smiling during the visit.  Perhaps you got around well that day which of course leads us back to paying for the visit later.  They don’t see what the visit does to you.  So they assume.  Assume all is well and how it appears.  They also don’t know how much pain you are hiding during the visit with them.  Very few bother to ask.  And when they do, do we hedge our bets and tell them or do we just say “fine”.   You are limping along.  ”Well, how are you today?” they say.  ”Oh, fine.”  ”Oh!  Glad to hear it.”  If you said it, it must be true.  Once again they themselves do that.  People may say fine at anytime to keep the other from worrying or because they do not know them well.  Maybe they lost their job, but say “fine”.  Their loved one is sick and in the hospital.  They have a funeral to attend, but they are still “fine”.  It’s human nature to do this.  Why then when someone is chronically ill do humans who understand that we all just say “fine” think that it must be true?

A friendly stranger wants to chat with you.  Let me tell you, when you use walking aids there is no shortage of people who ask why.  The interested stranger will show you more sympathy than the not interested family member or friend.  The stranger who asks has their own secrets.  Their own struggles.  It is as if they are drawn to you.  You must be safe to talk to because clearly there is something wrong with you too.  I find my exact wording doesn’t matter so much with these kind souls.  If I say RA and they have bad OA they are usually aware there is a difference.  They generally discuss their joints and any replacements they have had because although different, both lead to the same thing.  They also talk about their loved one who they have watched suffer with RA.  They tell the story with pain in their voice.  Yes, there are other kinds of strangers.  Those who can care less and you are just in their way.  Well, you clearly know who they are.  The ones who sit in a chair when there  are people standing around them that are older or using aids or clearly having a hard time standing.  They look at you with a strange look as you shift your weight or lean on something and then they go back to their phone.  There are those who see you somewhere a few times before saying anything.  Usually you are in for an earful when that happens.  To them OA and RA are the same.  I tell them I have an autoimmune disease and keep my answers short.  They tend to be the ones who want to tell you what helped their OA and should help you too.  All the cures you can try.  They have an answer to everything, so I go out of my way to make sure I do not present a problem for them to “fix”.

There are many different kinds of strangers, but the first ones I mentioned, the kind ones, want to know the truth.  Not the “fine” answers.  They actually want to know why you are in the waiting room with them waiting for an xray.  They want to connect as all humans do.  As I stated they may have severe OA, know someone with RA or they may have any sort of chronic illness or have a loved one with one.  They may be poor, disabled, but whatever it is, they are different.  Different for a reason.  Humans can sense that in others.  I found that I also tend to seek out the person with the hardest life in the room.  I have observed for years that they are the easiest to talk too.  And now, sometimes they are the only one who will talk to me.  I do not mind.  I belong to this group which is also fine with me.  We all just want human connection.  It is sad that many humans are just too busy with their own lives to care about others.  I think in America especially this is the case.  I have always fell out of contact with those who I felt were to busy looking forward to notice the flowers at their feet.  I have always felt you live each day to the fullest because you could die tomorrow.  Being ill has taught me it is actually moment to moment you must live.  I would much rather hear someone’s story of adventure or about their current hardships than sit around talking about the future of the world.  Humans cannot control the future.

And there it is.  The answer to the question.  ”How much do we share with others?”  The answer lies in the fact: Humans cannot control the future.  I think some of you already get what I am saying here.  But, we also must remember that many have wondered if the first question, “How much to share?” has any connection with awareness.  Look, we can tell everyone we meet every fact about this disease.  We can tell them everything about the patient version of RA, not the text book version.  But…until we have that name change, it won’t make any difference.  Consider a conversation I had with my grandparents.  My grandmother is very aware of how bad psoriatic arthritis can be.  My 2nd cousin died going on 2 years ago from it.  All medicines had failed.  It was a very severe case.  It didn’t take much for her to take the sadness of what happened to her niece and what she suffered through and understand what I was up against.  She is the only family member on that side of my family who gets it.  My grandma and I were discussing RD/RA and the name change.  My grandpa hears the word arthritis and interrupts and says to me, “Oh, it’s just arthritis like I have in my hands.”  My grandma says to him, “No, L—-, it is rheumatism.  Remember rheumatism?”  ”Well, oh,” he says and walks outside.  The irony….

“How much do we share?”  With a realization that the first thing is a name change to get the awareness we want (and the 2nd is to get doctors on board with the patient version, the real version of RD) then we can move on to considering the first question.  I honestly think the answer depends on the audience.  There will be moments for “fine” and moments for detailed answers.  There will continue to be relationships that fall apart because someone just doesn’t want to understand your reality.  Why? Humans cannot control the future.  If your audience is still trying to control their future, they are not ready to hear what you have to say.  If they think they can be a good person, eat well, exercise, get enough sleep and just follow a check list of what they view as the way to a good life, they will not understand your reality.  It destroys their view of the world.  They think they can avoid illness.  They will then blame you for yours.  After all, there is a checklist….

There is no fairness about this answer.  You share too much with the wrong person and they will hurt you.  But if you share with those who want to connect, you will meet new people.  I suggest you really consider who you are talking to.  If they never get it, then realize they can’t.  That may hurt especially if it is someone that you really thought would be support for you, but don’t keep beating yourself up.  Move on.  Open your mind and your horizons.  Maybe the person who does get it is someone who in the past you would not have talked to.  Doesn’t matter.  You are here now.  They are here now.  Reach out to those who are interested.  Hear their stories.  Sure, use caution, use your best judgement, but be open to the possibilities.

Oh, and take time to smell the flowers….

No more analogies

“A good analogy is better than gold, yea than much fine gold”                 Paraphrase of Proverbs

I think it is time to take a step back and examine what we are really saying when we say things like, “I am a fighter.”  ”She is fighting her disease.”  ”He lost his battle to x.”  ”I won’t give up fighting.”  Which leads to: “Oh, if you try x you may get better.”  ”I am sorry your spouse lost their battle to x.”  Or essentially just keep trying harder.  And then there is the belief all diseases can be prevented by just eating healthy and exercising.  Use natural medicine.  Essentially it is your own fault you are sick.

Sorry, but fuck it!  I have spent way too much time feeling depressed because if I am fighting this disease than I am essentially losing battles everyday.  Nothing anyone does will stop them from getting a chronic illness or disease.  Nothing will make an incurable disease go away.  And one patient is not better than the other because they think their choice of treatment is superior.

CSH associates says: “The author, Carly Weeks, makes the point that equating illness with a war, battle or fight with an enemy diminishes our understanding of the challenges and complexities of living with a serious illness. By talking about “a battle against cancer” (or ALS or MS, or whatever), there’s the subtle inference that people who “lose” didn’t fight “hard enough.” People are artificially divided into “winners” – “survivors” being a common lexicon – or “losers.”

I have resented this way of talk since my grandfather died from cancer.  The facts are it was inoperable and found late.  If it was found earlier it was still inoperable.  He did not lose.  He didn’t not try.  And in all honesty since he died a month after it was found he probably should have skipped the chemo and radiation.  So if he had skipped it, it still wouldn’t be he didn’t try.  There was nothing to be done.  And cancer did not win.  It is simply a disease.

I have used the “fight” analogy not knowing what else to use.  After all, it is all around me.  Many fellow patients say they are fighting their disease.  But analogies can be harmful.  Consider these:  ”Although metaphors help patients understand their disease, battlefield analogies can be upsetting, say the researchers, who have published a study on doctor-patient communication in the Journal of Clinical Oncology. Case in point: Cyclist and six-time Tour de France winner Lance Armstrong switched oncologists after the first doctor he saw told him he would hit him so hard with chemotherapy he would virtually kill him.”

“I first realized the power of metaphors a few years ago when my Aunt Fran complained about an orthopedic surgeon she visited for her arthritic knee,” said Reisfield, who specializes in palliative care and pain management. “He compared my aunt to an old car and her knee to a part that had to be replaced. She was incensed by this comparison and refused to go back to him.”

“I once saw a videotape of a doctor giving bad news to a breast cancer patient,” Rubin said. “He said he could liken breast cancer to dogs. Some cancers are poodles and some are Rottweilers. He needed to figure out which kind she had. I watched the patient cringe and felt myself cringe, too.”

The article is dead on when it says: “Yet thinking of cancer in terms of war strikes some as masculine, power-based, paternalistic and violent, Reisfield said. And it suggests winning the war — or defeating the cancer — is only a matter of fighting hard enough, he added. It also forces patients to keep fighting so they don’t lose the battle, when opting out of treatment may be a better choice if little or no medical benefit is evident.”

Using the fight analogy is a disservice to patients and especially when patients use it themselves.  You are not a failure or a loser for, let’s say, wanting to take a break from treatment.  Yes, the reality is the only thing that works (if it works at all) are harsh prescription drugs.  But there are plenty of reasons why a patient may need a break from treatment.  It is certainly not our place to judge other patients.  In fact that is part of the problem.  Why are we judging others?  I read RA Guy’s blog from time to time and he writes about how people disapprove of his treatment plan.  Who are we to judge?  I have noticed patients afraid that other patients will view them as whining.  Or some patients go on the defensive immediately which leads me to believe they have been attacked for their words before.  Why are we so harsh on our own??

So what then if no more fighting analogies?  I guess the truth.  We want to feel like we have a say in our outcome when we do not.  We really are just sick with a disease that will do what it wants with us.  We have no control over if the meds will help us or not.  If we will end up needing surgery or not.  If we will end up with other organs affected or not.  It’s just a part of life, our life, and we must live it.

As patients we are supposed to support one another.  We also need to be careful to not put someone else down for a different experience than us.  Or reprimand someone who is tired and or doesn’t feel all that positive.  Not a single one of us asked for this.  We aren’t being punished.  It is what it is.  In the end it is all a matter of hope.  I know some of you get that hope from your faith.  Not all of us do.  I don’t see God’s hand at work.  It is perfectly ok that you do and I don’t.  Where am I going with this?  A challenge to our community: 1) I encourage our community to think outside the winner/loser box.  We are not fighting an opponent, but are living with a disease.  2) To be open to the fact that we do not all get our hope from the same source.  No need to imply that your source is the only source where hope can be found.  Hope can be found in many ways.

Hugs to all!

We are all in the gutter, but some of us are looking at the stars. ~Oscar Wilde

Hope is the dream of a soul awake. ~French Proverb

When things are bad, we take comfort in the thought that they could always be worse.  And when they are, we find hope in the thought that things are so bad they have to get better. ~Malcolm Forbes

Hope is not the conviction that something will turn out well but the certainty that something makes sense, regardless of how it turns out. ~Vaclav Havel