Sunday, August 22, 2010


I have been SOOOOO good with vesting!  2 times a day every day for the past week and a half.  That my friends is a record for me.  I will do it at least once a day but to get it both morning and night has been great.  And I have been adding in a third treatment in the middle of the day, no vest.  Most of that is necessity though.  But still.  I am working on my diligence and so far so good.  I just have to stick with it.

Tuesday, August 17, 2010

Stormy Seas Part 2

I've lost myself.

I have no idea where to begin to look for myself, but I am hoping to find a way.

I know what needs to be done, in a way, I just don't know where to start.

This is the first time in my life I feel like I have lost who I am, completely.  Me, the person under all the CF garbage.  The person who loves life and lives it as best as she can.  That's right, I have lost her.

Many things in the life of a CFer can make them lose themselves; the need to stop working, the diminishing social life, the countless doctor's appointments.  All those things I expected, I faced and I dealt with in my own way.  What I was not prepared for was losing myself when I moved.


Yes I said it, when I moved.

Do not for a minute think that I regret the decision; I love where I am and who I am with.  However, I forgot one vital piece of it all.  I forgot to remember who I am.  I have done what so many women past and present have done.  They lose themselves in their relationship.  With guilt ridden fingers I can say this is not the first time I have done this, but it is the most abrupt, the most complete, the most alarming.  Few times before I succumbed to my boyfriend's life, becoming friends with his friends (many of which are still some of my closest), doing what he wanted, where he wanted, but always making time for my friends.  This is the first time that I really can't make time for my friends, because my friends are not here...they are 300 miles away.  No, not far at all, but not a day trip by any means.  And certainly not a house I can go to on the weekend, just to get away.

As I lay in the bed I share, with the man I love, I cried about this all.  I cried about how I have no friends in MA (T and S yes, but having one set of friends is never enough), no life I can call my own.  I am a prisoner of our house.  Stuck inside because I lack the funds to go exploring, lack the energy to deal with dragging a child along, lack the motivation to find fun free things to do.

I have no life.

Plain and simple as that.

An easy remedy I hear you say.  I respond with a smirk saying it is not as easy as one may think.

Where do you start when you don't know anyone?  Or those whom you do know are off limits because of cross contamination issues (many CF friends live fairly close to me, we see the same doctor's at clinic etc), and you can not make them into a permanent "friendship" relationship.  I have met a woman through someone P works with.  This is a start yes, and we are doing dinner this week.

Where do  you start when you lack the money to do things that could bring you friends?  I have found an art class on Saturday mornings, or Wednesday afternoons, at an Adult Education Center (not seniors because they offer specific senior classes and also adult and children's classes), which I really want to take.  It is 10 weeks long for 3 hours every Saturday morning (or Wednesday afternoon).  Just a basic drawing class.  Something to get me back into my art background...but it is expensive, for me and my disability income.  My budget is not happy about the price at all.  A.C.Moore does not have any good free classes and neither does Michaels, otherwise I would think about those.

These are the questions that I raised to myself Sunday.  These are the issues that have left my eyes still puffy more than 24 hours after crying.  These are the questions I fear I may never answer.

Slowly, I am trying to remind myself what I do have here.  A wonderful boyfriend who I would do anything for and who would do anything for me.  The freedom to have a garden and grow my own vegetables.  Support in the form of "family" who have dealt with CF and transplant already.  One would think these would lessen the burdens of my heart.  Alas, they do not.

I am not looking for a pity party, or anyone saying oh but you have a life blah blah blah.  Just saying.

Sunday, August 15, 2010

Rough as the stormy seas

I had a very rough day today.  Not CF at all, thankfully, but emotionally hard nonetheless.  I have so much I want to write down but I don't know where to start nor how much I want to tell.  I am sure in due time it will all come out.  But until then I am keeping it clamped up inside, where it normally lies.  One good thing coming from all the turmoil in my wee little head, is I am searching furtively for a new psychologist to see.  So despite the bad, good will come.

Friday, August 13, 2010

Scratch Scratch, Itch Itch, Oh what a Pain it is!

It has been almost 2 weeks that I have been off of the IV antibiotics and I am a mucusy mess again.  It is only noticeable after a treatment with the saline, thankfully.  That means I have time to keep it there and not let it get out of control.  Funny how soon all that gunk comes back when you turn the big boys off!  My fingers are crossed that I won't need to schedule an earlier appointment with my clinic before my October 5th appointment. If I do so be it, but I am aiming to not need to.

One thing I have noticed this past week, which I don't remember ever being this bad before, is the itchy lung syndrome.  I posted about it on face book and not too many people had a clue what I was talking about.  It just feels like my lungs are itchy on the inside.  Especially after I cough, I can REALLY feel the itch.  Like the mucus is tickling the airways in there.  I am hoping this will go away soon because, while it may not be painful, it is certainly annoying.

My joints are also still a bit achy.  Fortunately it is only my knees and knuckles on my hands.  They aren't so bad I need to take Motrin but my knees make it difficult to bend and sit on the floor, then get back up.  So that is being added to my list for Dr D in October.

This fall is going to be chocked full of doctor's appointments.  I managed to finally pick a primary care physician, a gynecologist, eye doctor and dentist.  I have appointments with the gyno and pcp the first week of November.  I am excited about the gyno because I want to talk to her about the Lynch Syndrome and possible removal of my uterus.  And if she is not for that, then we will just do birth control again.  I hate BC because after a year I have to stop it and wait a few months to get my system back on track before I can start again.  Frustrating!!!!!!

That is all I have for updates with me.  In other news, please keep praying for our dear girl Cystic Gal as she is still retaining fluids and is having surgery after surgery to stop the problem.

Wednesday, August 11, 2010

Letter from a Doctor

A friend of mine posted this on CF2chat a few days ago.  It is a great letter and really lets you see into the doctor's perspective of "dealing" with us chronically ill patients.

A Letter to Patients With Chronic Disease

Dear Patients: You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
  1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
  2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
  3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
  4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
  5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
  6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
  7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit. Sincerely,
Dr. Rob 
Post Script: This post has generated a huge amount of conversation and interest (as witnessed by the large number of comments!).  I very much appreciate the dialogue it has spawned both here and across the web.  I’ve subsequently written follow-up posts explaining my thoughts in more detail – largely in response to the comments here.  One of them discusses in more detail my 
own experiences as a doctor and the second talks of the importance of  knowing and being known.  Reading these will give you a better picture of my thought process and perspective on this.

Dr. Rob

Tuesday, August 10, 2010

Please Tell Your Rep to Vote YES for this Act

The Senate passed the Clinical Trials Act which allows patients to participate in clinical trials without losing their SSI benefits.  Some patients, who are eligible to participate in trials desperately needed to find cures (not just CF), refused to participate because the money they would receive from the trial would put them over their alloted allowed income to receive SSI.  This Act will allow them to go ahead and participate and not worry about losing benefits.  

Below is a link to the CF Foundation's pre-written letter that you can send to your state's Representative.  The Senate passed it, now the House has to.
CF Foundation Letter

Wednesday, August 4, 2010


My tune up is over!  They pulled my PICC line at clinic yesterday.  I was so excited.  Best shower I had in 2 weeks!

Nothing else much to report.  My FEV1 went up slightly to 1.44L, 46% (49 for CHOB standards), which is good news.  My weight was back to where I was in March, however, I hadn't pooped in 2 days so I was a bit full.  Miralax is must for the next few days to empty me out.

The joint pain I am experiencing has her a bit baffled.  Usually patients get it before the exacerbation starts and it goes away after meds.  Mine, however, started a week after I started the meds.  We are going to wait and see if it goes away in a week, and if it doesn't, we will go from there.  Luckily, I don't have to go back until October 5th, unless I have any issues before that.

She told me what I cultured last time and some of it is a first.  Psuedo as usual, a strand of staph (that she said should go away with my IVs I was on) and something else she mentioned, which I can't remember right now, of course.  But the PA is normal for me, and the rest should be destroyed with the meds.

Other than that no new news.  Life is moving forward, I am on the hunt for a primary care physician, a gynecologist, dentist, eye doctor, GI doctor and therapist (mental).  The PCP, dentist and eye doctor I think I have I just have to call to make appointments and see if I like them.  The GI and therapist I have recruited the social worker to help me with.  The gyno, well I am going to have to pick one and go to.  I'm weird about the girlie region, and hope I find one that is familiar with cancers of the reproduction organs and will have an opinion and whether or not I should dispose of my uterus :)