2010 Comes to an End

What a year!

Looking back on the past 365 days really amazes me.  I do it every new year's, as do most people I am sure.  But I think this one has the most changes.  I'm now officially living in Boston with the love of my life, I have a new family, I'm a surrogate mom, I've made new friends up here, I've started the Grad school process, I've been approved for SSDI, I met so many new CFers, I managed to make 2 full holiday meals (for the first time! Christmas and Easter), I spent my first Christmas away from my family, and I am finally content in my life.

I think that is one heck of a year.

Many lessons were learned as well, both new and old.  Life is short, we need to live it to the fullest each day.  Friends and family are way more important than anything else.  And only you can make yourself truly happy.

This year has been an amazing one.  Filled with love, laughter, sadness and joy.  It definitely had its down, and we lost way too many friends along the way.  But overall it was great.

Everyone has resolutions, I usually do too, but this year I think I will pass.  Nothing like setting yourself up for disappointment from day one!  So instead I vow to make my 2011 as wonderful as I can, despite the hospitalizations, the sickness, the breathlessness and the worries.  I will make it a year to remember, as each year should be.  I hope you all will do the same!

Be safe and Happy New Year!!!

Merry Christmas!

Christmas has been one hectic holiday this year!  I offered up our home to host dinner and while it was an awesome meal and great having everyone here, it took its toll on me!

Sunday I started running a fever.  101.1 which is pretty high even for me and my night time fevers I get.  I didn't take anything so I could see if it would wear off over night.  While it didn't disappear, it at least came down to 99.1.  However, after being awake for almost an hour it rose to 99.5 so I took some Motrin.  That kept it down till early evening when it started creeping up again.  I took more and I have been fever free since.  The only time I felt bad was when I had the 101.1 fever.  I felt crappy for about 2 hours before the thermometer even showed it.  It kept reading between 98.0 and 98.5 and I kept swearing I had a temp.  See, I knew what was up!

Emily and I were supposed to leave for PA yesterday too.  At first I was very disappointed on Sunday when I heard there was a blizzard coming and the chances of leaving Monday morning were going to be zilch.  It ruined my morning and part of the early afternoon.  But looking back, maybe something/one knew about those fevers coming and decided the only thing keeping me home to rest would be an act of Mother Nature.  We all know, fevers don't keep me down!  I would have left and possibly made myself worse.  So this blizzard was a blessing.  Instead we are leaving in about an hour.  Our bags are packed and once I shower I can pack the van and we can be on our way.  I'm looking forward to spending a few days with my family and seeing everyone.  Plus I can't wait to give out gifts!  We will be home late Thursday night, just in time for New Year's Eve with my honey.

Here are some pictures to see of our hectic holiday:

Do you still love me?

I know I know!

I am a horrible blogger!!!

With the holidays approaching I have been super busy shopping, crocheting and preparing for my first family Christmas dinner at our house.

Nothing to report which can be a good thing.  I have started the admissions process for grad school!  I hope to start this upcoming summer.  If I can find my GRE scores all will be OK with the world.

Well I hope everyone has a very Merry Christmas and a Happy New Year.  And to those who don't celebrate, I hope you have a happy Holidays :)

Peace on earth...good will towards men...and be an organ donor!

Really Effin Frustrated

I had my clinic appointment again yesterday and I left feeling really frustrated and annoyed.  I felt like nothing was accomplished.  My PICC line was pulled and I got some information about a study I am going to do, but other than that, it was almost pointless.

There were a few good points and I should explain those first before I begin my tirade on everything else.  My lung function is back up almost to baseline.  I blew 1.31L, 45%.  My highest is still only 1.45L so I am not too far behind.  That was also a fluke in my opinion, as most of my numbers range from 1.30L - 1.35L.  So technically I am baseline.  Because of my numbers being back to normal, they pulled my PICC.  I am looking forward to my first PICC free shower in a little while!  I am also no longer culturing Steno Malt.  My last one was free of that, though I did culture Class B strep.  And the one before that I cultured Aspergillus (spelling??).  Both along with my normal PA.

Now for all the annoying, why I am so frustrated things.

First was the results of my sleep study.  I didn't de-sat below 89%.  This means that my insurance will most likely refuse to pay for my O2 concentrator.  She said that I could probably use 1L at night and it wouldn't hurt me, but the chances of insurance allowing me to keep it are slim.  Even though I qualify for O2 with exercise, needing 2L.  She also said that when I am feeling run down and sick I will definitely need O2 with sleep.  Great, thanks, this is why I didn't want to do the study while on IVs and HEALTHY!  Now I will have to fight my O2 company and insurance to have them pay for the concentrator.  Just another headache that could have been avoided.  I have been using O2 for over 2 years now and I sleep like shit when I don't use it.   My blood gasses are all normal so I don't see an issue of using it.

My second cause for annoyance is that I am STILL running night time fevers. Now I know a little higher temperature at night can be normal.  But I don't see how 99.6 and 99.8 are normal.  IT'S NOT NORMAL FOR ME!  I run low, always have.  Even at night I would be around 97-98 tops.  So to jump 2 degrees just isn't right.  Maybe I am over reacting I don't know, but I want an answer and she didn't seem to have one.  Her response - OK.

My third and final issue is this wretched pain I am having across my chest.  Sometimes it is centered directly on my sternum and shoots outward when I inhale.  Other times it will go deep into my chest until it feels like it is going to shoot out my back.  The pain was so bad on Monday night I was almost in tears when I went to bed.  Motrin is helping it thankfully.  When I asked about it she asked if I was doing any push-ups or heavy lifting.  I said definitely not with a PICC in.  I mentioned being out in the cold and walking a little bit and she replied, "hmmm maybe".  Gee thanks.

I left totally annoyed, totally frustrated and wanting nothing more than to see Dr. H. again.  He knows me, he knows what is normal for me, he knows that this all would warrant some type of response other than "OK".  For this reason I am considering setting up an appointment while I am in Philly between Christmas and New Year's.  I'll have to pay out of pocket for it, but I don't mind.  I want to see him and get his opinion.

I know I need to be more assertive and demand answers but that has never been me.  I hate rocking the boat.    However, if I don't start I might not like what I have to deal with.

Clinic Appointment and Sleep Study

Last night I had my overnight Oximetry study done.  We want to make sure I am getting the right amount of O2 at night.  Of course we had to do it during the course of IVs so my lungs are at their best.  But the few times I woke up I was around 88-90% so I am sure I dipped lower while sleeping.  I woke up totally exhausted, but with no headache luckily.  That is also a "good" sign to me.  The funniest thing happened too, when Peter's alarm went off.  It startled me, just like it does every morning, and my HR jumped way up!  Kinda funny to see it actually happen while also feeling it.  Made me giggle.

Clinic was OK.  My numbers have pretty much stayed the same.  I was 1.11L two weeks ago and today I was 1.16L.  I went from 38% to 39%.  Most of this could be from having the tests at 1:30pm versus the mornings when I usually do.  Tuesday is my next appointment where my PICC will be pulled so I am sure I will be back in the low 40s.  And if not then, well, I don't know.

The NP also gave me the number for an ENT (Ear Nose and Throat doctor) so I can have my sinuses checked out. I might not think they are bad but the bugs that are up there can drip into my lungs and keep causing issues.  As much as I DO NOT want sinus surgery, I will get it if the doctor feels I need it and if it will make me eligible for transplant at some point.  Which was mentioned, that if/when I decide to be evaluated, I will have to have them checked and possibly worked on then.  Better to have it done now while I am still relatively healthy.

Once I get my sleep study results back I will post them, and also I need to remember to ask about my culture on Tuesday.  I forgot today.

The need to exercise

I posted on CF2Chat a couple days ago about my absolute distaste for exercising. And also asking what others tell their doctors about what they do for exercise, if they are like me.

I'm not a couch potato by any means. Yes some days I don't do much but sit on the sofa watching TV and crocheting, but really I'm making money while doing that lol. I clean at least once sometimes twice a week. Laundry is two days a week. Food shopping at least once a week. This is at least 3 days of exercise, if not in the traditional sense. Then of course there is sex. Might not be the full 25+ minutes of a high heart rate exercise that is recommended, but it certainly gets ya going!

As we were all bouncing stories and ideas around, a good point was made. I need to find something I LOVE to do that is exercise. But what? Well the only exercise based activity I love (besides sex) is horseback riding. However, I haven't done it since I was a junior in high school - 12+ years ago. I was a show jumper. I've got ribbons galore and riding gear that sits lonely in a tote (gave my trunk to a non-profit riding facility for the disabled - love Craigslist!). My lung functions are lower than they were then and so is my tolerance for just about everything. I'm talking 4 hours of sleep sustained me for a day easily back then.

So how to I get myself ready to tackle those jumps again?

First I need to accept (and this is the hardest by far) that I might not be able to get to that point nearly as quickly as I did when I was 16. That I might have to start out walking for the first 5 sessions to build up both my lungs and my leg muscles.

Second I need to start some basic training. I don't mean going to the gym for hours a day, but maybe just a walk around the complex. I walk to the mailbox a couple times a week so maybe I should start taking the long way.

And third I need to find a facility that offers lessons during the day and is fairly close by. And preferably decently priced.

Luckily we are approaching winter. For me, the cold is very harsh on my lungs and unless the facility has a heated indoor ring, I'm out till at least April. But that gives me 4 months to work on my muscle toning and stamina. Someone mentioned the YMCA as a good place to start. Usually programs are cheap and maybe they will even have some day time pool classes I can take.

I need to treat myself like a child...offer a reward for a job well done. Perhaps a new shirt for 2 weeks of exercising. Or a new book. Something that will give me a reason to get there besides just the possibility of riding again one day. Being able to get back on a horse is a post-transplant goal of mine. But why can't I make it a pre-transplant one instead?

Me in Culpepper VA when I was 15

Rocking my new CG tee shirt!

My bloggy friend CG came to visit me in the hospital (as I wrote about before) and brought me this awesome tee shirt!!!

Leave a comment here or on her blog and tell her what you think!!

I'm loving it and wearing it out tonight as I celebrate a friends 2 year post transplantiversary!!!

PICC Placement Fiasco

I don't know what to say about this even except that I have never been so scared in my life.  I thought I was going to die and I kept repeating over and over in my head that I didn't want to die this way.

Rapid Response had to be called during my PICC placement.

I don't remember too much after the initial excitement, and I only remember bits and pieces during.   What happened was this:

The PICC nurse was placing the line bedside, as I have always had done.  She had a little resistance at first but it finally went in.  As she got to the end, the walls started to close in, my stomach dropped to the floor and I thought I was going to pass out.  Then my throat closed.  This was in seconds.  I told her something was wrong and started yelling I couldn't breathe and to help me.  Next thing I know there are people everywhere, a nurse rubbing my head telling me everything will be OK and a doctor rubbing my feet shouting orders.  I heard them mention the code cart, rapid response team, Benadryl and O2.  A mask was placed on my face at full force O2.  Benadryl was injected into my IV line (not the PICC).

I remember seeing a ton of yellow....the gowns they were all wearing.  Looking back I am quite impressed everyone gowned up before coming in.

I remember thinking all I wanted was Peter and I know I mouthed it.  I was crying, hoping that I wouldn't die. If there was any doubt ever about how I felt about him (which there NEVER has been), this whole thing cleared it up.  All I wanted was him.

I was in and out of consciousness.  When I began to come to, I could hear more.  I saw the room empty when they brought the x-ray machine in.  Felt my body moved forward for the plate to go behind my back.  I remember my shirt being pulled up to allow the heart monitor stickies to be placed.  I remember people saying to hang in there.  At one point they asked me to open my mouth, I remember thinking that I didn't want to be vented.  Apparently I didn't open it wide enough because they kept repeating to open wider until finally I did.  I laid there expecting the tube to be put in at any second.  Luckily, I was spared.

Everything was blurry.  I was crying, though not hysterically, my mask was partially covering both eyes and I was groggy from the Benadryl.

I could feel the tightness on my arm from the PICC and remember thinking that I didn't want it and I would deal with peripherals until I could get a port on Monday.  I still have the PICC and it works great.  Looks great and doesn't hurt at all.  The PICC nurse came in later and mentioned I was yelling for it to be removed.  Opps, I don't remember that!

My doctor came in at some point.  I know I looked around for him but couldn't see him earlier.  He hadn't been there at first.  He was across town in a meeting but came as soon as he was paged.  He has been in a few times since then and has been a huge support in this.  He wants to make sure that this doesn't happen again while I am here.

I just finally came off of the heart monitor about an hour ago.  They were watching my O2 and blood pressure.  Both were low.  I am on constant O2 right now because when I remove it, I de-sat to below 90%. This is a side effect from the trauma of the morning.  Something that can and will improve over the next day or two.

I'm shaken up over all this and realize just how bad it can be and how something so "trivial" can cause something so major.

I am glad to be awake, vent free and alive.

(P.S. this happened Friday, Nov 19 and was written that night)

A few days have passed now since this happened and I am learning more and more.  They are thinking what caused this is the nurse pushed the PICC in too far to my heart.  This happens very RARELY but when it does it causes all sorts of troubles.  With me, the troubles were multiplied because of my already horrible functioning lungs.

As I meet more people I am also hearing more and more.  My nursing assistant today was there on Friday and she was telling me some things.  Like how people were outside of my room praying I would make it.  How everyone was pulling for me because I am so young and too young to die.  I won't lie, this made me cry.  I know that part of it is because know one knew what was happening, but also that I was in a pretty serious state for a short amount of time (though to the people working on me and to me I am sure it felt like an eternity!).

I wasn't going to post this originally, but you can see I changed my mind.  I've told everyone that needed to know what happened, so now the rest can hear about it.

I am fine now, no adverse effects from the fiasco.  However, I will be using IR from now on for PICCs unless I decide to take the plunge and get a port.

Special Visitor

Many of you may remember my visit with CG back in March while she was inpatient?  If not, here is the post.

Well, yesterday afternoon she came to visit me!  It was nice to have company after my little ordeal yesterday (a blog may follow in a few days explaining, I have written it but not sure if I will post it) and chat about it with another CFer.  

She was kind enough to bring me some goodies!  I got one of her new tee-shirts (which I LOVE and can't wait to wear when I get out of here), a book - Sick Girl Speaks by a friend of ours that had 2 double lung transplants, and some fun snacks.  

It was great seeing her and her post transplant adorable self!  She's so bubbly and full of life, I can't imagine not being excited to see her!

Insurance debacle

This post is going to be very confusing because the whole thing is still confusing to me.

As much as I love being able to get insurance through the state, I am finding that it is truly a nightmare.

We can all remember my issues with getting coverage in the first place (if not check out the posts labeled insurance) and how glad I was that I was finally approved.  Well it turns out there was a huge snafu somewhere along the line and I have the wrong coverage...twice.

In April I was approved for Health Safety Net.  This being basic hospital coverage in case something happened I would be covered at a hospital and all all community health clinics (i.e. those places you see on TV where anyone with out insurance can go to, a breeding ground for germs, ewww).

In May I submitted forms to show my disability to get covered under that insurance.  I was still not covered for anything else and paying out of pocket for my meds.

In June, a decision was made (though I have no paperwork on this, I found out by calling on Tuesday), though what I still don't know.

In July I was officially granted insurance with MassHealth Standard, Neighborhood Health Plan.  Cheap co-pays on meds, no premiums, no co-pays on doctors.  Perfect.

Fast forward to November when I receive the letter stating my MH Standard is being dropped because I make too much money.  And that I am being switched to CommonWealth Care.  Have to pay a premium, which is still cheap and co-pays on everything, including doctor visits.  No biggie.

Then comes this Tuesday when I hear from the Social Worker at clinic so we can figure out my impending hospitalization.  Apparently I am not supposed to be on CommonWealth, but I am supposed to be on CommonHealth.  Yes really one letter difference.  CommonHealth is for those disabled and premiums are based on a sliding scale of income.  I was supposed to be informed of this, through MassHealth, but never was (letter lost in the mail perhaps?).  There is a qualifying clause in order to start the coverage.  Either meet the $5688 deductible or have a letter written saying you work for at least 40 hours a month.  THANKFULLY I just started that consulting work and can get a letter from them.  This coverage will be backdated to October 25th, so my appointment yesterday will be covered.  However, I am still unsure about the hospitalization (which starts today at some point).

So that is my insurance dilemma in a nutshell.  I have insurance, just don't know how active it is.  I paid my first months premium on the insurance I am not supposed to have, so I don't know what will happen with that money.  And I have no idea how long my IV stay will be.

But hey, on the bright side....I will still get my meds in there and be covered by SOMETHING!

Shameless Blog Plug

Have you checked out my creative blog?

If not you should do so :)

http://amysartattack.blogspot.com/

Bad day turned into a week

That day I wrote about on Monday...hasn't ended yet.  In all honesty, it has gotten worse.

Blah.

I think it is time for IVs.

Blah.

I don't have health insurance right now, only hospital insurance so for me to get IVs I have to spend a minimum of 14 days inpatient.

Blah.

I've started an email to my doctor to send to her on Tuesday so we can decide what to do.  I could try a round of oral Cipro but I think I am too far past that.  I cough constantly, and not just my normal cough, a nice hacking mucus filled cough.  My energy is crap and don't even get me started on SOB.  OK get me started, its so bad an 8 year old commented on it today!!!  Her words "why are you so out of breath?"  This was said after walking maybe 50 feet to my Jeep to get in.

It's bad.  My peak flow numbers are horrific; 190-200 pre-albuterol, 250 post.  I usually hover between 300-350 depending on the day.

I was HOPING to wait till after December 1st when my insurance is scheduled to start again so I can be in for 5 days then finish the 14 days at home.  But Peter doesn't think I should wait, and if I think about it I don't think I should either.  All it is going to do is cause more damage to my already shitty lungs.

And then of course there is Thanksgiving which I would have to miss and my last two art classes.  And Peter and I's 1 year anniversary.  I'd be getting screwed in all directions!

So the plan is to email Dr. D.on Tuesday and she what she thinks.  I can almost guarantee she will admit me.  But fingers crossed she will want to wait (though I have to really think if I want to wait) and allow me to spend my first "real" holiday in MA, away from my family, with my new family, instead of in the hospital.

All my spoons are spent

Days like today I get scared.  Days like today I get a glimpse into what my future holds.  Days like today I think CF wins a bit

It is 2:30pm.  I woke up at 11:30am after 11 hours of sleep.  I was still tired, still wanted to sleep, but I knew I had things to do.  Like clean and laundry. At 2:30 I am 2 loads into 4 loads of laundry and done cleaning.  Not the good tear-the-house-apart-scrubbing-everything kind of cleaning.  Just your basic dust the tables, wipe down counters and vacuum cleaning.  Then I showered.  Now I sit panting, gasping for breath, with a high (122) heart rate but decent O2 (94).  Pain in my lungs and back.  A desire to lay down and sleep the rest of the day.  And a low grade fever (99.1).

All my spoons have been spent.

I have about 2 days like this a week.  Sometimes more, sometimes less, but on average 2.  Admittedly that is fairly good for a 30 year old with CF.  Especially one on SSDI and +/-40% lung function.

I dread the day when those 2 days become 4, then 6, then everyday.  This feeling is no fun.  It's horrible and I don't know how people do it.

I think my body might hate me?

But at least it hates me in a common way.

Yesterday I had my ultrasound on my ovaries to check to make sure that the Lynch Syndrome was not following me to other organs.  All was well until she found a cyst on my left ovary.  She made sure to tell me they are common, but because of my family's history and the LS, the doctor will definitely want me to be checked in a couple of months.  And that she will be calling me Monday or Tuesday to go over it all.  She needs to examine it and make sure it is just filled with fluids, and not abnormally large.

It was kind of interesting to watch it all on the screen.  I felt like a soon to be new mother laying on the table, trying to make everything out in the black and white areas.  Only difference is we were hoping to not see anything, and I didn't get a fun little print out.

She the link below for information:
Ovarian Cysts

I am not worried about this.  I know a few friends who have had cysts and they were gone in a few months on their own.  I just worry because I know one of my aunt's had cancer around the reproductive organs and I can't remember which organ, or which aunt.  I will have to make a few phone calls to find out.  It is just another inconvenience of my body, growing things in places things should not be growing.  Like the pre-cancerous polyps found in my colon last year (which I have a referral from my PCP to see the GI doctor at Brigham's once my insurance is back December 1st).  Or the polyps growing in my nose.  Or the extra mucus in my lungs.  Just annoying when all added up together.

Saying Goodbye to a Friend

I am absolutely heart broken right now.  A friend of mine is slowly taking his last breaths.  His wife has made the choice to remove him from the life sustaining vent and let him be at peace.  I can't imagine how difficult that choice had to be.

Please say prayers, send good vibes and thoughts to Seattle WA, as they transition through this.

Here is her blog.

The TIPS procedure did not go so well.  He was vented afterwards, removed and sent home within a few days. Then the next day was placed back on the vent and has been on it since.  He was waiting to be listed for a liver and double lung transplant.  Unfortunately, he never got the chance.

Today...

...I am

Pissed off
Angry
Frustrated
Annoyed

And all at CF.

Right now I am miserable.  I can only blame it on CF because I am uncomfortable.  I am bloated.  I am SOB.  I am hurting.

My gut is filled to the brim.  I have taken Miralax and am slowly waiting for it to work.  Until then I am sporting the 5 month pregnancy look, and feeling dam near close to that as well.

I am SOB because of the bloating.  It is pushing on my diaphragm and making it difficult to get comfortable and breathe.  I've done my second treatment of the day and still no relief.  The albuterol isn't even doing anything for me.  Well a little bit, I can inhale a bit deeper, but overall I feel no difference.  I want to be able to feel the difference.  Like years ago, when I would do a treatment I could tell.  I could get back up and go again.  Now, unless my first treatment makes me feel that way, I am done for the day.  I will truck on of course, because that is my nature, but the day will just result in me grumpy and miserable.  How fun.

As is typical me, on the opposite side of the spectrum I am ready to cry and just lay in bed all day.  I want to be alone.  I want to curl into a ball and escape.  Because that is my escape route.  To hide under the covers and pretend that nothing exists.  I have sleeping pills, I could take them and sleep all day and through the night.  But will I?  No.  I will go about the day in a blur, feeling bloated and annoyed and hope that 11pm comes quickly so I can fall asleep and wake up, hopefully, feeling refreshed.

I have disabled comments on this post because I just wanted to vent.

Female Doctor Appointment

Today I had my first gyno appointment up here in MA.  I LOVE the woman I chose.  She is awesome and the office is great.

Why am I chatting about something so seemingly un-CF related?  Well it has nothing to do with CF but all about my LS (Lynch Syndrome).

I was lucky enough that when I mentioned it she knew what it was.  So she asked about what screenings I have had done.  Just the colonoscopy and endoscopy as of right now, and I am actually a few months late on that and need to get one (but I digress).  She checked me all out, laughed when I gave her my medication list and gave me a clean bill of female health.  Then she came back in and told me she wants me to get an ultrasound done on my ovaries, just to make sure all is well there.  She said she didn't feel anything so not to worry.  So I won't.  But I am sure I still will think about it.

I always forget about what exactly LS affects.  Quite a lot!  But its also nice that there is plenty of screenings out there to help me stay cancer free!

I found it also funny that the depression survey I took at the beginning came back as mildly depressed.  LOL, hence the anti-depressants!

Otherwise all is well.  I will be starting my new birth control with the next period and my CF doctor will be happy!

Dilemma Solved!

It has taken me a while to write but I wanted to make sure I had everything done and lined up before I made an announcement.

I am officially a consultant!

I decided to do it.  I spoke with a friend of mine, who is also a CFer and she gave me some good info.  Apparently with SSDI you have the option to work for 9 months in a 60 month period and earn any amount of money.   How can you go wrong with that?!?!  So I let the guy know at the company and today he sent me all the paperwork to fill out.  And next step is them mailing me a workstation to do the work from home!  I was ecstatic when he told me they can mail it.  Saves me a trip to PA, which has been difficult doing because of the lack of funds.

Once I get my first assignment, I will let my long term disability company know.  I am still waiting to send them the refund for over paying me since June.  I was aware I would have to send all my SSDI money to them when I was approved and I am in the process of that right now.  That is a long story that involves a very annoying old bank account and a great new one and trying to get everything organized.

My crochet business has also been very fruitful.  I have gotten a few orders from friends on facebook and I have been crocheting up a storm.  It's s nice being busy again!  But the busy is at home, at my pace and not a must do busy.  Its stress free.

Hit a Dilemma

What to do, what to do...

Wednesday as I was chatting on the phone with my BFF, I mentioned how I miss working.  I do.  I miss being relied on for help on the professional level.  There is something about actually working that makes me feel good, makes me feel important, makes me feel useful.  

Then Thursday I received an email that could again make me feel useful.  

An old colleague from a previous, though not most recent, job emailed me.  The company I used to work for is looking for outside consultants for some construction drawings.  They are overwhelmed with work, hopefully for the next year, and looking to hire some previous employees to help with the workload.  It is all done at home and they set you up with a computer system so you have access to all the company architectural files to complete the work.  You can complete as many or as little sets as you want and you are paid based on what you do.  So if if takes 4 hours or 30 hours to do the set you get the same amount of money.   

Is it just me or does this sound totally perfect?

But here is the dilemma....

Based on their payment fees, if I were to stop receiving long term disability and only receive SSDI, I could only work on one set a month.  Hardly seems worth it to me.  But if I were to stop LTD and SSDI I could double my current income.  

But is this something I want to do?

I think about the passed 10 months and what all I went through to get approved for SSDI and MassHealth.  It was not easy.  Would I be able to get right back on SSDI if I were to stop right now?  Would I be able to keep my health insurance?  Would I be able to maintain my health, my clean home, and the duties of my "new" stay at home girlfriend job?

What to do, what to do...

The BIG 3-0

Yesterday was my 30th birthday.  Today is my first full day as a 30 year old CFer!

I think as you get older birthdays truly do become just another day.  Peter and I went to dinner and a movie Saturday night and it was great to get out with him.  We rarely ever have time to ourselves.  But yesterday was just another day.  Well another day that included ice cream cake!  Mmmmmm...... No really my birthday was great and I do not feel any older lol.  This was my first birthday away from my family, but my new family made it good for me.

Now to the CF part of the day.  By the end of the day my tonsels were swollen and my throat hurt.  And when I woke up this morning it was the same thing.  Added on is a less mucusy, but rougher cough and some soreness in my lungs.  I'll see how I feel by Friday when I have a full 18 days of Cayston in me, and if I am not any better I'll call the doctor.  Sheesh wasn't I JUST there!

Stenotrophomonas Maltophilia

This is my new friend.  Steno Malt.  Apparently I cultured it when I went in for my cold.  She said that it is sensitive to a lot of medicines, so the Cayston should work on it.  She didn't seem too concerned about it so I am trying not to be as well.

However, it is very hard to keep that mindset when I read up on it.  Steno seems to be classified as gram-negative and found in aquatic environments.  It's similar to B. cepacia in its ability to resist antibiotics.  Again, luckily mine seems to be sensitive to most antibiotics.  Read here to find out more.  Originally it was thought to not have a negative impact on lung function, however, it may not be the case now.  Patients with Steno Malt might actually see a decrease in lung function from it.

So while the articles are not exactly positive, I have hopes that I can get rid of it.

Follow Up Clinic

Today's clinic was much better than 2 weeks ago.  The Cipro and Cayston are doing their thing it seems.  I am still junky and somewhat SOB, but at least I can feel it getting better.  My numbers have all increased, except my weight which is down slightly but no biggie.


These are my numbers from 2 weeks ago:


PRE: (Penn)

FVC - 1.92L 56%
FEV1 - 1.06L 36% (33%)
FEV1/FVC - 55%
FEF25-75 - .43L 12%

POST: (Penn)

FVC - 2.16L 63%

FEV1 - 1.20L 41% (37%)

FEV1/FVC - 56%

FEF25-75 - .51L 15%

And todays:

FVC - 2.23L 65%
FEV1 - 1.31L 44% (41%)
FEV1/FVC - 59%
FEF25-75 - .59L 17%

I still have 3 weeks left of the Cayston so I expect my numbers to go even higher.  Though I am not scheduled to go back until December 7th.

I was also lucky enough to have an exercise study done while there.  I wish I had known about it prior to the appointment since I came in my imitation Ugh(?) boots and a sweater.  However, I "passed" the test and do require O2 with exercise.  We started off slow on the treadmill and I worked my way.  Around 5 minutes she put the O2 on me since I was down to 90%.  She started me off on 1L and worked up based on how my numbers and breathing was.  I ended around 3L and she said that should be good for me but if I am feeling really SOB I can always check and increase it.  I like having it documented now though so that if my insurance were to ever put up a fight they can see proof I need O2.  Now I just need to get that sleep study they keep telling me about...

That is pretty much it for the CF front right now.

Letting Go - an article to read

Letting Go

This is a response I wrote on a thread on CF2Chat.  Please read the article and respond.

"The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end."

Is my favorite quote from the article.  And I can not agree more with it.  You may be deemed a hero for standing up and battling till the last breath, but what is it for?  Especially if deep down inside you knew you would be battling till the death.  Wouldn't you want to enjoy those last deaths?

I have 2 examples I am going to draw from.  One is my step-mom who passed away in July and the other is my pop-pop who passed away 4 years ago next month.  They are opposite stories with Cancer as the leading player.

My Step mom was diagnosed with breast cancer 6 years ago.  They treated it for a year and it went into remission.  A year or two later it returned.  Again they treated it and it went into remission.  Two years ago she was again diagnosed with breast cancer but also in her lymph nodes.  She decided to treat it aggressively again and hoped it would go into remission.  It didn't.  It spread to her bone marrow.  She was on hardcore chemo, trying the IVs, testing the chemo pills.  Anything she could to stop it.  She was still working and exhausted.  When she got home from work she fell asleep and slept till morning. She had stopped living.  But she still went on.  Eventually she decided to stop work and concentrate on beating the cancer.  She continued chemo and radiation, whatever would "help", only to have it spread to her brain this past summer.  At that point it was obvious to most of us that she would not beat the cancer.  For it to spread while getting racked with major treatments, meant it was a doozy of a disease.  But still she fought on with the chemo.  The middle of June she was admitted to the hospital after calling 911 because she couldn't stand up to get out of her car and she was alone.  She never left the hospital.  3 weeks later, as she was laying there totally unconscious, my dad made the choice to stop treatments and let her die peacefully.  I still remember the phone call.  He was devastated but could not watch her suffer anymore.  The following day she passed.

Her last year was horrible.  She slept almost 20 hours a day and had no energy.  She was not the same woman he had married.  She had died already, but her body was still alive, being kept that way with the chemo and drugs.  I do not blame her for her choice to fight.  Personally I would not have tried for so long, but then again I have been facing my mortality from age 5.  She wanted to see her grand children grow up and to live longer, she was only 65.  But at some point don't you have to ask yourself quality over quantity?

Then there is my pop-pop.  My mom-mom had died about 1.5 years before he was diagnosed with lung cancer.  Now this was a man who had a stroke at 35, a massive one, recovered and was NEVER sick another day until he got cancer.  We were upset, especially when he told us he was denying treatment, much like my mom-mom had (she lived 5 days after finding out she had brain, lung, liver, kidney, and bone? cancer).  But we respected his choice.  It was his life.  What we were not prepared for was learning how bad the cancer was.  He had told us it was OK, it wasn't bad.  But as he progressed he made my mom and aunt legally allowed to talk to the doctor.  He told them it was stage 5 and he wouldn't not live much longer.  So we went from thinking he had months and months and months to live, to maybe having only one month.  He had kept it from us so we wouldn't try to pressure him to get chemo etc.  We found out in March about the cancer, and in July or August how bad it really was.  The beginning of October he got really sick and my mom and aunt could not take care of him.  They had moved in and taken leave of absences from work to take care of him full time.  We had him put in a nursing home for a few days so they could fight the infection that had taken over.  I remember visiting him on my way to my birthday dinner.  I told him I loved him.  It was the last time I would see him awake.  He came home a few days later and hospice was sent out.  They were wonderful.  He had stopped eating and drinking and we knew it was a matter of days.  October 20th I went to the movies for the release of the movie Flicka with a friend of mine.  I was planning on getting up early the next morning to go see him again.  But an hour after I got home my mom called and told me he had passed away.  I rushed over to see him and say goodbye.

My pop-pop lived 6 months with no treatment.  Though he may not have been in excellent health (duh) and declined rapidly towards the end, he was able to spend time with his new great grandson, his kids and his grandkids.  My nephew remembers him, through pictures, as a fun happy peaceful man.  Not a sick man.  I still remember my pop-pop sitting in the chair in the driveway on mother's day while my nephew ran around him and slapped him high-five every time he got to him.  I've never seen my pop-pop so happy.  I know moments like that went through his head in his last few hours.  The point is he enjoyed his last moments on earth and did not try to fight them.  He knew cancer would kill him and he had accepted it.  And once we knew his decision we accepted it as well.

I think that any disease can be fought, but, like General Lee, you need to know when to surrender.  You need to know when you are tired of trying and want to just live in anyway you can.  Even if it means stopping treatments, especially if it means you stop treatments.

Playing the Learning Game

We all go through this....learning our limits with CF.

Whether or not we ever pay attention to those limits is another story.  Me, I seem to pay attention on occasion.  However, there are nights like tonight when I bypass all reason and pretend I am a normal, healthy 29 year old woman.

What did I do you ask?  Well....I rearranged the kitchen cabinets....all of them.  At 6pm at night, 8 hours after my last treatment.

It all started when the UPS guy delivered my Altera cleaning kit from CFServices Pharmacy.  It includes a NUK baby bottle sterilizer and some Tupperware.  The sterilizer machine is not exactly small so I needed to find room on our already cluttered, too small kitchen counters for it.  This lead to cleaning out the pots and pans cabinet, which lead to the "pantry closet", which lead to the pasta cabinet, which lead to the canned goods cabinet, which lead to the bread and baking cabinet, which lead to the spices cabinet, which lead to the cabinet above the fridge.  We only have one more cabinet, the dishes and glasses one which I left alone.  I spent over an hour doing this, amidst my boyfriend telling me to slow down and shaking his head.  And no, there is no way he could help me because I would get frustrated and annoyed so its better for me to do it alone, which he knows.

While I might be feeling better from the Cipro, I am far from back to baseline.  To prove just how far away, my lungs decided to play fun games back with me.  Each time I coughed, my sight went narrow and I almost blacked out.  What makes it even more fun is standing on a stool when it happens.  Again, it only took me an hour to do all this so I was able to relax afterwards.  But the repercussions will last all night and most likely into tomorrow as well.  My back hurts ridiculously, my lungs are still throbbing and I am coughing up streaky mucus.  I will be a smart CF woman and go to bed early, and sleep late again tomorrow.

Inviting your CF doctor to your wedding....weird?

Is it weird to want to invite my old CF doctor to my wedding?  A topic came up on CF2chat and my answer included inviting Dr H to my wedding when I get married.  But then it made me wonder if that is strange.  And if he would really come.  And if I would have to invite the NP and one really awesome secretary that was there.

I would love to invite him since I had been seeing him since age 5.  He really is like a second father to me.  But I am unsure of the protocol for things like this ya know.

What do you all think?

And BTW, no I am not engaged or anything, like I said, the topic came up and I wanted to expand on it :)

Clinic Appointment - impressive

I am so glad I ended up going to clinic today.  Originally when I made the appointment I was told I could cancel if I felt better by yesterday.  I felt better but not great so I decided to just go anyway and get my prescription for Cipro.  Well, thankfully I did!  I ended up being much sicker than I thought and if this round of Cipro doesn't do the trick it is back in the hospital for IVs for me.

They did a pre and post pft on me.  Pre was crappy (must interject here and remind everyone that the numbers my new clinic uses are different than my old clinic uses.  So while my numbers might look "ok" here, in my old clinic they are 3-4% worse).  I will post what they would be for both so you know what I mean and can see what I base things on.  Since I am used to my old clinic and how the numbers there correlated with how I felt I use those mainly.

PRE: (Penn)

FVC - 1.92L 56%
FEV1 - 1.06L 36% (33%)
FEV1/FVC - 55%
FEF25-75 - .43L 12%

POST: (Penn)

FVC - 2.16L 63%

FEV1 - 1.20L 41% (37%)

FEV1/FVC - 56%

FEF25-75 - .51L 15%

Aug 3rd (Penn)

FVC - 2.39L 70%

FEV1 - 1.45L 49% (46%)

FEV1/FVC - 56%

FEF25-75 - .69L 20%

My weight was also down slightly.  In August I was 120lbs and today I was 118lbs.

As you can see this cold has beat my lungs up quite a bit.  To combat this, I picked up my prescription for 750mgs of Cipro, twice a day, and also started the paperwork to get Cayston!  Yay I am super excited!  I have been wanting to try this new antibiotic and we are finally going to try it.  Hopefully I will be able to tolerate it, unlike Colistin and TOBI.  My culture shows I am sensitive to it, so all that is left is to test it out.  She said to make sure I do my albuterol and symbicort before taking the Cayston.  Fine by me.  I need an inhaled antibiotic.  Ever since I had to stop TOBI, and not being able to take Colistin, I have felt very vulnerable to infections.  Only having orals and IVs to fight off lung infections is no fun.  

One final note, I got my flu shot today so now I am protected for the winter.  Let's just hope the strand of the flu that runs rampant is the strand in the shot I got.

I'll be sure to update again after my appointment on October 5th.   

What would you do....

for a Klondike bar....lol

No, that's not really where I was going with that but it popped in my head when I wrote it so I had to go there.

What I was really going for was,what would you do with new lungs?  What prompted this was a post by fellow blogging Cyster Piper.  It got my wheels a turning and I just had to go with it.  She talks about her amazing life with new lungs.  I will quote one piece of it since it sounded like me in a few years when I am transplanted and breathing again like I should be.  "My friends are sick of me already because I guess they didn't realize that new lungs mean bigger lung capacity (i.e., the ability to talk for hours) and more energy to run around like a madwoman. My dog pretty much refuses to walk with me anymore since I rarely have the patience to stop as often as he would like. Everyone complains that I'm too fast for them to keep up with on the street -- and I revel in every second of it."

Me...I don't even know where to start.

I know I would go dancing.  I would ride a horse.  I would spend a day at the park running around.  I would chase after puppies.  I would laugh until I was blue in the face...and not from lack of O2 like now.  I would climb to the top of Bunker Hill.  I would do a walking tour of all my favorite cities.  I would play volleyball.  I would laugh all day long.  I would sing, even though it would be out of key.  I would go camping in the woods with NO electricity.  I would laugh for hours.  I would run.  I would travel.  I would laugh.

Notice a theme?  Laughing!  Yes that's right.  I can't wait to laugh and laugh and laugh and not turn blue and red from coughing afterwards.

What would YOU do with new lungs?

Cold Season

Yep, that time of year is here again.  Where coughing, sniffling, sneezing and wheezing are part of the daily routine...and I don't mean for me!  School is back in session and so are the germs.  I was "fortunate" enough to catch something.  And now, I have the raspy voice, raw throat, sniffling nose and achy lungs.  Grrrrreat.

I am pretty sure it is not just from school starting up.  Between the weekend down in PA with so many kids and parties and lack of sleep, I think my body just hit its limit.

I have been taking it easy since yesterday, just doing what I need to do and that's it.  Tomorrow I plan on sleeping or at least laying in bed all day.  Friday I really want to go to the Jumper's Classic in NH.  But that will depend on how I feel.

I started back on my saline rinses but as of right now nothing is getting through.  So maybe in a few days my nose will clear out some and the saline can get through it.  I also bought Vitamin C drops and some throat drops to try to help.  Along with sucking on lemon wedges (a friend told me about this) and restarting the Keflex that my doctor had taken me off of.  I'll give it till next Tuesday then call in and ask for some Cipro.  This is not the way I wanted to start the fall season!

Come October 5th when I have my next appointment, I hope to get my flu shot.

SURPRISE!!!!!!!!!!!!!!!!!

I don't know where to start!

This weekend was amazing!

We were supposed to be heading down to PA for my god-daughter's first birthday party, but it ended up being so much more!!!  I walked into my mom's house Friday night to over 60 people yelling SURPRISE to me!  They threw me a surprise 30th birthday party...30 days early lol.

I was floored and still in shock and had no idea what exactly everyone was doing there.  Took me a few minutes to realize that it was a birthday party!  I thought everyone was there to say hi haha!  Funniest part is that my brother was"at my mom's with the kids" and text me around 7:30 to see when I would be there because Kayla was getting fussy.  I said about an hour and go home if she is too bad.  Then my mom text me like 20 minutes later asking the same thing.  I told her the same thing I told him.  So then I kept her updated when we crossed the bridge into PA etc.  Well here, Peter was texting her too!  When we drove on the street there were a bunch of cars parked and I commented that someone must be having a party!  HA!  Little did I know it was MY party!  Peter said he laughed on the inside at that!

It was so awesome to see all my friends and my family, including those on my dad's side who I don't see all that often, there.  I had been saying to Peter just that day, that we needed to have a party so everyone could meet him at once!  Bastard knew ;)

I really enjoyed seeing everyone and the cake and presents and everything.  It was a green themed party!  Me and my save the world self.  Here are some pictures to see what I mean:

this is made from ivy (took it the next day so you could see it)

And we played Pin the Tail on Premiere!  My old show buddy, such a fabulous horse!

I definitely felt the love that night!!!  My mom made a video picture montage of me up until now and I want to post it SO bad but the way it is on the DVD makes it impossible :(  Look for a future post with a few select pictures of what was on it though.  And my dad had brought my mom down a folder of all the things my brother and I had made him as kids.  It was so funny seeing stuff from kindergarten and preschool and letters to Santa, from Santa, cards I made him.  It was so sweet!  And boy did I LOVE to color haha!!!  And thanks to my dad's early birthday gift, I was able to register for my art class last night!  It was the second best birthday present I got (first being the party)!!!

Saturday however, I got even better news!  I was approved for SSDI and had my first deposit in the bank.  Hoping to get a letter this week with all my info.  Unfortunately, all that money I got goes right to my LTD company, but that's OK because at least now I am officially disabled!

33 days till my 30th birthday!

My title really has nothing to do with my post I just wanted to say it LOL
I must apologize to my bloggie friends for not posting recently!  I have been busy with minor things and visiting family etc.  School starts back tomorrow and I will be back on the blogging bandwagon again.

This past weekend (which was Labor Day here in the States) Peter and I went away to a friends cabin up in NH.  We had so much fun!!!  You have to get to their cabin by boat which just rules!  No cars, no traffic, no telephone poles!  Just pure nature.  We had a fire going for most of the weekend since it was chilly.  The fire was great, inhaling the smoke not so much.  I am paying for it now with some bad SOB and lots of coughing.  A few days of hardcore vesting and neb treatments will hopefully set me straight.

Saturday and Sunday the lake was too choppy to do much boating.  We went out for a bit but we all ended up drenched by the time we got back in.  Monday however, the lake was calm and the sun was shinning.  We spent 2 hours riding around and it was awesome.  I love the wind and sun in my face!  We saw para-sailors and other boaters out.  I took a picture of a bridge I want to sketch too.  All in all a fabulous day.

As I stated earlier, tomorrow school starts again and I can get back to a routine.  This time I will have the full 9.5 months to get into one before next summer starts.  This week will be hectic since we are going back down to PA this weekend for my god-daughter's first birthday party.  So next Monday all hell will break lose here in MA!  I am still vesting, now I need to exercise.  I plan on starting at 3 days a week and working my way up.  M-W-F will be my Jillian Michaels days.  T-Th maybe I can take walks around the lake here.  I will need to bring my O2 though, as I know I will be walking a lot if I go.  My tolerance needs to be built up, both in my muscles and in my lungs.

Vesting

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.

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.

***GASP***

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.

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

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.

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.

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