The Sickness Paradox

A very interesting thing happens when you are sick, or really in a hard situation.  If you choose to allow people into your situation you begin to experience the immense care individuals are able to have for our fellow human beings.  I have noticed this in my own life and in my cousins.  Recently my cousin was diagnosed with leukemia.  Both of us have been amazed by the amount of people who reach out to us when disaster strikes.  The paradox is that in the worst time of our lives we get to experience some of the best things.  

We tend to keep to ourselves most of the time.  Sure we seem friendly but our enthusiastic "hi how are you"s are really just formalities.  The honest truth is most of the time we don't actually want to know how you are.  We are usually too busy with our own lives to take the time to care.  We are constantly dropping the "let's hang out sometimes", but these are thrown about with little care as to whether we really have the intentions of planning a time to actually get together.  This is the sad truth of our society.  We have become so busy and wrapped up in our own lives we have lost a sense of true community.  

When you a sick however, it all changes.  Suddenly people are calling actually wanting to know how you are.  People come out of the wood work taking the time to let us know they are thinking and/or praying for us.  Friends show up out of the blue to spend time with us or help us out.  Our neighbors or coworkers who we rarely communicate with are suddenly offering to make us food or help us take care of daily life tasks.  

It is a truly wonderful experience to feel so loved and connected to so many.  It is a shame however, that such an amazing way to live only tends to happen when disaster strikes.  It is time we stop having to face hard times to simply feel the love from fellow humans.  We were made to love each other.  Let's put an end to the isolation our culture has created.  

Next time you are about to ask a person how they are, ask yourself if you really want to know, if you do then proceed with the questions.  You may get a simple fine, try to follow up if this is the case. (What's happening in your life?, Fine good or fine just okay?,  How come?, Etc.). If you answer this question be honest share how you really are.  The next time you made too much food for dinner rather than simply freezing it see if a neighbor want some or better yet invite them over.  Ditch the "we need to hang out" saying and instead be more specific, " want to get coffee on Tuesday?"  

 

It will be tough at first but I believe that slowly we can change our lives to be more connected with others.  Who knows it could even end up changing our world!  (Yes I know that's kind of Cheesie but if we each focus on doing our part it may just happen!) Plus sharing life with others, even if it is just a few people, is an amazing feeling! You might just get addicted!

A Message from Bubble Girl

Dear Fellow Humans!

  The weather is starting to turn cold, the trees are bursting with color and pumpkin everything fills shop shelves and bakery counters.  It is fall once again and with this lovely time of year comes the not so lovely flu.  Unfortunately for my fellow immunocompromised peeps and me, this time of year often becomes the time we retreat back into our safe cocoons of sick-free-ness.  This year lets change that!

We can all do our part to not only help to keep immunocompromised people safe but to also help reduce the spread of flu to everyone.  (not to mention all the stuff about Ebola in the news)  It is time to make a few simple changes to our habits to help make everyone healthier.

All it takes are three easy steps!

1.  Get your flu shot. 

    Yes I know there is all sorts of controversy about vaccines but the thing is we are healthier now    then before them and many disease have been almost eliminated because of vaccines.  So go get your flu shot to help protect yourself and people you may come in contact with that can't get a flu shot.  (people like me with such a low immune system)  Some people claim (my old self included) that the flu shot gives them the flu.  This is not actually true, what happens is if your body is fighting something when you get the shot, that bacteria that is alive is able to grow slightly out of control while your body fights off the dead flu virus.  To prevent this get your shot when you are totally healthy and not fighting anything off.

2. Wash you hands!

   This is the number one way to prevent the spread of disease.  Every time you go to the bathroom be sure to wash those hands!  (It seems like I shouldn't need to say this but go check out a public restroom its amazing how many people don't wash their hands!)  Also wash those digits anytime you cough or sneeze or blow your nose.  And please throw that used tissue away, it is nothing but a germ fest and a box of tissues is much cheeper than a hospital stay, there is no need to save it.  

3. Stay home when you are sick!

   This is probably the hardest to follow.  In our society you are expected to go go go, well lets work together and change this.  Not only will staying home and resting help you get better faster it will also help prevent you from giving your sick to someone else.  If you are a boss, don't make it so hard for employees to take a sick day.  A teacher?  Help your students to catch up when they get back rather than making them feel like they can't miss a day.  We really need some serious overhaul in this department!  If you must go out when you are sick be sure to follow rule number 2 (wash your hands a lot) and wear a mask if you are coughing or sneezing.  

Lets all do our part this winter to make this winter the best one yet!  Until things start to change I'll be in my bubble, avoiding crowds and groups of notoriously sick people (kids, college students etc.)

Thanks,

Anna

A letter to the Show Biz Peeps

Dear creators of Red Band Society,
   I watched the show and I was kept entertained.  It has a fun group of characters and is interesting to watch.  I also agree with the message that you can still have fun and be happy despite having an illness.  However it is completely unrealistic and that is a huge problem.      
     Please make your show realistic or please take it off the air.  As a Cystic Fibrosis and Cancer patient, who has also been kept in a coma after my lung transplant, and who as a child stayed on the same floor as (and even sometimes shared a bathroom with) the eating disorder patients I beg you to make a change.  You are doing a huge disservice to the medical community especial that of Cystic Fibrosis(CF).
    Cystic fibrosis is a disease that does not get a lot of air time.  The CF community has been very excited about what this show could mean for us.  Unfortunately I do not think anyone thought it would be bad, but it is.  Before CF was brought into the main stream when I told people I had cf they would be curious and ask what it was.  I then would have an opportunity to educate them on  this horrible childhood disease.  However, since the show people have heard of CF and think they know what it is.  Well thanks to the poor portrayal people will now assume it's not really a big deal, I mean Dash seems fine and he's at his worst since he's in a hospital, right?   Wrong so very very wrong.
     Having CF is horrible, you can't breath, you can hardly eat and you certainly aren't running around a hospital stealing cars and throwing helicopter pad parties.  If you are one of the "lucky" cfers to not have bad symptoms, you aren't in a hospital.  A real cfer in the hospital is weak, very thin, tired, struggling to breath and has a productive cough pretty much all the time.  Most are also on oxygen and all are on iv medications around the clock.  We have what is called a PICC line inserted in our arms for medication or a port if our hospital stays are long enough.  Hospitalized cfers also do neublizer treatments, which was shown slightly, and vest treatments several times a day, 4 in my case,  these treatments can last an hour or more and are given by respiratory therapists.  Many of us also have feeding tubes and are fed a special formula by a pump at night to help us gain weight (like I said we are super skinny).  In most cases hospitals have strict infection control rules for CF patients we are often not aloud to leave our room and in the cases where patients can leave they definitely must be wearing a mask.  This goes for cancer patients as well.  Both of these diseases allow a person to catch illnesses easily, cancer from the chemo and CF from all the mucous in the lungs, and hospital are basically one giant petri dish.
     I understand what this world (hospital life) is like and I know it would not make very good tv.  That being said it is still possible to have an entertaining show while portraying some realistic aspects of the disease.  First of all the patients need to dress down a little bit, this is not high school, it's a hospital.  We don't do our hair or wear make-up and nice clothes.  More like hospital gowns, pajamas and sweats and a messy pony tail (if we have hair, I now where hats!).  Yes we hospital kids often decorate our rooms but not as excessively as the one on the show.  Coma kids are definitely in a hospital gown and hooked up to a few more monitors.  Also hospital patients are there for a reason, meaning they get treatment, ivs, oral medications, monitoring vitals etc.  And last but not least (and probably not really the last problem either)  Sick kids wear masks, kids who can get sick easily also wear masks.
   So please help all of the children who actually live in hospitals by portraying their life a little more accurately.  Without some changes kids will be jealous of those of us who "get" to go to the hospital.  Having a chronic illness is nothing to be jealous of.    
                     Thank you Very Much,
                         Anna the lemon
       Cystic Fibrosis, Lung Transplant, Diabetes and Lymphoma
P.S. Leo's eyebrows are pretty much the bushiest eyebrows I've ever seen.  If he is that bald on his head you bet his eyebrows are at least somewhat thinned.

Round 4 review

:o I may have fallen off the blogwagen a bit, but it is only Monday so I still could do two posts this week and then I'd be on track.  I finished my 4th round of chemo last week.  It was definitely the hardest.  Not so much physically but mentally.  I was so hoping to be done after 3 and sitting in the hospital hooked up to IVs 24/7 with 4 days of that in front of me really set in the reality that I still have cancer.  I spent all of my first day and most of my second laying into bed depressed and just wanting to go home.  I eventually snapped my self out of it realizing that being miserable the whole time would only make it worse than it actually was.  Plus my mom got some pretty flowers and stickers and we decorated my room.  Nothing like some bright colors to help you feel a little more cheery!  Also I had a nice visit with one of my mom's friends from high school and she also brought flowers! Two of my favorite things visitors and pretty flowers!

So now I am home, and have been for almost a week.  I'm doing fairly alright though I've been having pain the past few days. Hopefully this will improve so I can enjoy my time in the free world until I am locked up again, the day after my birthday :(, how suckie is that?  I guess at least it's not my birthday!   Until next time (Wednesday?) 

Tootle loo!

Seeing the shadow

The time has come to learn my fate for the next 9 weeks and unfortunately they will include three more hospital stays. Yes this cancer groundhog saw it's shadow. The good news is that my cancer is responding to my chemo, just not as much as I had hoped.  Its a bit frustrating because people (especially my mother) sees this as good news.  And it is, especially for them, I'm getting better.  It is not good news in my eyes.  I know I should be happy that I am getting better because it could just as easily be the other way around, but I am mostly disappointed because this whole 5 days in the hospital every 2 weeks has gotten old.  I guess my challenge for the next 9 weeks is to remain positive even though things aren't going my way, they could always be worse.  At least I am improving  and I feel pretty good.  Plus I get to do my chemo in CO so I can actually be at home between treatments.  That's all for now folks!  

Not Going Anywhere

Well today marks one year since mom and I left for Durham and as the title suggests I'm not going anywhere.  This fall is looking like a whole lot of Colorado for me.  Now don't get me wrong I love Colorado, but I do wish it was looking a little more Phoenixie for me.  Today has been especially hard knowing that if it wasn't for the stinky cancer I would be packing my things preparing to leave on yet another adventure, though this time with a little more fun and much less pain.  Instead I am home... unpacking.  At least I am home, that is one thing I can be thankful for!  I could be stuck in Durham still, or moving there again to treat this cancer.  It is times like this when it is sooooo important to remind myself of what I do have and to be thankful for it and enjoy it while it is there.  So for now I will sit in my house, with my family near by and be thankful that I at least have that much!

Pumpie, and Dex

It has finally happened!!!
I have my insulin pump and my continuous glucose monitor (CGM) hooked up and working!  I love them.  The CGM is great since I don't notice when my blood sugar is low until it is REALLY low (we're talking in the 30s or lower here :O )  For those lucky readers who know nothing about diabetes, your blood sugar is supposed to be from about 70 or 80 to about 140.  You may have experienced what I like to call hungry feeling.  If you experience this you often get hot, unable to think hard or focus, shaky, and of course super hungry, usually for sugary foods.  This feeling means your body is experiencing a low blood sugar.  Your body can usually correct this and most healthy people would not pass out or die from this, however a person with diabetes takes insulin to bring blood sugar down, which when too much is taken can result in an extreme low causing the person to pass out and even die.  In fact we (diabetics) have to carry a special syringe with us incase we pass out from a low, kind of like an EPI pen only ours gives our body the quick burst of energy it needs.  I have never passed out (knock on wood!) though I have been as low as 27 :O (yikes!)   Like I mentioned above I don't notice my lows until I am really low, this feels awful and isn't good either.  Enter Dex, my continuous glucose meter.  This handy little invention goes under my skin and sends a blood sugar reading to a hand held device every 5 minutes.  It shows me trends which are helpful in adjusting my insulin doses as well as to know when I must eat.  Twice my CGM has alerted me of an impending low before the symptoms hit, allowing me to eat some quick carbs and fix the problem before I started to feel like crap!

Dex

My next new "toy" is pumpie, my lovely insulin pump.  The pump has a little tube that goes into me and stays there, hooked up to a little device that has insulin in it and can give me insulin throughout the day without any pokes!  I also have the ability to enter my carbs that I eat to get insulin for my food.  Before my pump I used to have to give myself a shot every time I ate, this tended to drive me away from food.  For instance with dinner say we are having pasta, I would have to decide at the beginning how much I would eat and then give myself the insulin needed.  inevitably I would wind up still hungry and want another serving or "surprise" there is super yummie chocolate cake for desert.  When this would happen I would either have to deny myself the delicious food (not a great idea when you are trying to gain weight) or give myself yet another shot. (not a whole lot of fun)   With the pump all of that is gone, I can now eat and eat and eat without a single shot, just a few pushes of buttons on pumpie and boom more insulin is sent right into me!

Chocolate cake you say?  Bring it on!!!!

My lovely pump

How my pump hooks into me