Happy Halloween!

Well Halloween for Milwaukee has come and gone. The culture shock still resides for me though. Yes, I have had Halloween and Trick or Treating but Milwaukee is just... er... messed up! (laugh) You see, in New York, Trick or Treating was always on Halloween (Oct. 31st) but in Milwaukee, it is the Sunday before Oct. 31st. Today was a treat for these kids because it happened to fall on a Sunday but still... come on... having Halloween a week or so before Oct. 31st is just plain wrong. (laugh) And to top it off, the kids have certain hours (1pm-4pm) that they are allowed to go Trick or Treating in the area. What??? It isn't even dark out yet! How scarey is that???I am curious though - how many variations are there our there on Halloween? I am just not used to this. After 6 years of being in this state, you think I would - but at 4pm, I sadly shut off my porch light (even though it was not even dark out yet - signal for the kids) and put the rest of the candy away. As I gazed out of my front window, into the sun-lit sky, I could not help but think about all the cool Halloween Trick or Treating that is still going on in New York... I hope the kids in my family enjoy the next 5 hours they have left to Trick or Treat and realize how lucky they are - for the kids in Milwaukee truly don't know the meaning of Halloween.For those in New York - live it up! :)

Pain in the arm

It comes only once a year for us but this time of year is a pain in the arm. That is - flu shot season. Oh! The blasted flu shot that it seems almost impossible to get was not a problem for us. Being Greg's primary care giver, I brought a note in from both his CF and Transplant clinics saying that I had to get the shot and Greg was able to get his directly from his CF clinic.In order to get this shot, I had to line up at my clinic with what seemed to be an endless line of older individuals. After about 5 minutes, it seems that I became part of the staff. Some people had problems hearing their numbers called out so, being the person I am, I would call out their number in the waiting room and point them in the direction of the cubicle they were called to. What was the end result? Well, about 7 people adopted me as their new granddaughter, several old men wanted to take me home (don't ask *laugh*), and the nurses thanked me with what they called a square needle. (laugh) Well, when I said "ouch" to the needle, the nurse replied "We saved the square needle for you". Maybe the old guys told her to do that because I rejected their offers to go home with them . . . (laugh)

The bouncing rabbit

Do you know what it is like to have a bouncing rabbit in your home? I am not talking about a cute little furry bunny but a 5'9", 30-year-old, grown man. Why is he "bouncing"? Because the doctors have put him on a small dose of steroids in order to get rid of a wheeze that he has developed.Yes, the wheeze is almost gone yet again but in its place is a man that cannot sit still. Normally Greg is in his oversized "home" clothes and rarely has shoes on in the house. Now, he keeps his shoes on and is racing around the house (and outside) looking for something to do. Yesterday his mind began to race about a possible new business venture, paying bills, sorting through stuff, etc. - without a rest.Should I be concerned? Not at all - this is his "normal" while on steroids. What concerns me is if he only has 18% lung function and is like this on a very small dose of steroids, I cannot even imagine when he gets his new lungs (85% lung function or better) and has all that oxygen running through his body AND on a very high dose of steroids.Umm.. yeah... doc... can we get a prescription for a sedative too before you release Greg with his new lungs? I fear I may staple him to the house wall so he will stay in on place for more than 30 seconds? (laugh)

Updating the Blog

Okay, some have asked how often there will be a new entry in our blog so that they don't have to come back day in and day out just to see if there is something new. Well, I couldn't honestly tell you. It all depends on what is happening in our lives. Unfortunately, not a lot happens in our lives at this moment besides the roller coaster ride called CF.I tried to figure out if the blog should have a theme - should it only be Greg health updates? Should we only use it during the transplant? Should we use it so that Shan can go on like a raving lunatic about Philosophy? Well, none of the above. :)I can tell you though that is not because our life is boring or that we don't have any good moments in our lives. Quite the opposite. Greg and I are very happy, joke around often, pick on each other often, and live every moment to its fullest. It is just that some things you don't want to share - some are too private while others may not be understood. Just know that there is a ton for us to write and write we will. Just give us a chance to unwind and get used to this whole blogging thing. :) Oh! And feel free to leave comments when you want - just be nice. :)

Family & Advice

Greg and I have been very fortunate to be surrounded by such a loving and caring family during the last few years. I love my family deeply but do not understand most of them one bit. The easiest way to say it is that my family is a cross between "Everybody Love Raymond" (yes, Marie is my grandmother!) and the movie "Home for the Holidays". Throw in some major problems and you have my family.Now, this is not to belittle them - just that I dont understand their way of life. Maybe it is because I watch someone fighting for his life every day that I think life is more precious than most in my family. My questions are: Why smoke if you know what the end result is? Why eat such poor foods when you know that you have heart disease in your family? Why sacrifice the body you already have, make it worse, and then complain about your body and your life?Okay - I am not on a soap box here - just that I have tried to figure it out and I can't. My aunt and I often joke that we are not part of the family that we know and were dropped here by aliens. There is always a person in the family that is the oddball - well, in mine, there are two - me and my aunt. The problem is that my logical sense has me try to figure out why people do the things they do. I have tried to give advice (when asked) but yet no one heeds it. I have told people how I have gone from 208lbs. to 126lbs. (at 5'5" tall), and it is easy, but no one is willing to do it. (laugh)So, if people know they have problems and dont take the advice, why bother asking for the advice in the first place? I suppose that is yet another question that my logical self needs to leave behind. Damn those 4 years of college Philosophy! (laugh)

A strange question . . .

In a normal world, a person asking "how are you?" is not abnormal. For me (Shan), that is another thing . . .One of the VPs in my company (and my mentor) was visiting our site today. She stopped at my desk with some work and began asking me how Greg was holding up with his 3+ year wait for new lungs. Well, that topic is easy for me, since that is usually the question I am used to hearing. But, then, she turned to me and said "And how are YOU holding up?" For a second, I knew what Greg felt like - the breath was stolen from me. Me? Me? As I heard the question in my mind again, I could not help but feel lost. With everything surrounding our lives, family stresses, family members dying (3 uncles and 1 grandfather in the last year between us both), 5 dry runs for new lungs, full time graduate classes, full time work, helping Greg with certain medical "things", taking care of the house, and all the chores, I never thought to ask myself that question. Exactly how WAS I holding up??I told her that I take things one day at a time and that people have told me I can leave the relationship since I am "healthy" but I can't. You see, I am devoted to my husband: the husband behind the CF shell, the man I fell in love with, and the man I plan to spend eternity with. Sure, all my energy is spent on all those things listed above, but if that keeps Greg alive and "well" (all things considered), then I will continue to do so.But again, how am I holding up? I can honestly say that it must be by the grace of God because without Him, I could have never got this far. Just when I think I cannot handle one more ER visit or performing (stomach turning) nurse-type actions for Greg, the strength and energy will show up - out of no where. So, I could only repeat my grandmother's timeless premise: "There but for the grace of God go I".

Why us?

When struck with a terminal illness, most people tend to ask "why us?". Yes, I have asked the same question too but when I asked Greg about this, he said that he has never asked "why me?" throughout his whole life. Heck, that would have been one of the first questions I would have asked myself if given such a disease. Well, had I been the "old me", I would have.Since meeting Greg, our lives have been nothing but a rollercoaster ride. Either something is happening in my family (long story) or his health is up and down. With around 18% lung function left today, even a slight tilt in the downward angle is bad. Unfortunately, every day brings its good and bad times. Lately, Greg has been short of breath once again and his energy peaks and not much long after, he needs to take a nap. At this time, there is nothing we can do but sit, wait, pray for his miracle transplant, and keep him as healthy as we can.Why us? Well, why not us? I often tell people that only the strongest people get such horrible diseases because they are the only ones that can them. This doesn't mean that we should all turn weak - it just means that there is a strength and determination in people with Cystic Fibrosis (CF) or any other "terminal" disease that us "healthy" people cannot comprehend. In turn, we need to look at life for the gift it is. Had Greg been born in the 1950's or 1960's rather than the 1970's, he may have not lived past 2 months old. But today, he is a strong willed and determined man who never asks "why me?".

Website Updated

We finally decided that it was time to update the website (http://home.wi.rr.com/thesteffens). Of course, I, Shan, am the web developer and therefore got stuck with the task. Actually, "stuck" isn't a good word since I love web design and have a great deal of fun creating new images and sites. :)

On the home front, we are still enjoying our new home greatly. Over the last week, we have had some instances where life wasn't as perfect in the home (mailbox falling off the wall, garage door not closing, medicine cabinet shelf falling off). The fix-it items though have been a great deal of fun - installing a new outdoor light, window well covers, etc. It feels good to be doing these things for ourselves and since Greg's health has been stable, we are taking advantage of it.

Speaking of health - Greg has been off IVs for some time now and doing well. We are both going for our flu shots (mandatory to get the transplant) and luckily we are on the high priority list for the shots since there aren't many out there. Greg has his moments where he is short of breath but his zeal for life is stronger than ever.

Starting a Blog & Us

We have searched high and low for a free blog to post our thoughts and finally found one. Why a blog? Well, between the normal "routines" of being a married couple, we have a lot of information to share about Cystic Fibrosis, Organ Donation, and just our soap opera lives. This information may be useful for others who feel that they are alone. And, when Greg finally gets his double lung transplant (after waiting over 3 years), we can use the blog to document the experience.

Enjoy!