I am so dang happy it’s Friday! What a long week this has been. Sorry I haven’t written but frankly, I just didn’t have anything to share with you. Since today is Friday I thought I better put something out there…
Random Thoughts:
*Tricia @ Confessions of a CF Husband just got a new set of lungs and is recovering in the ICU. She has been up walking around and seems to be doing fine. Please send your prayers to her, she will need them help her fight, well, for her life, frankly.
*I can’t even imagine the concept of needing “new lungs”. I mean, I get it, but it’s so far from my reality that I have a hard time wrapping my brain around it.
*WWH called me at 9:30 today and asked me to find out if my mom could make the exact same reservations (at the same restaurant) for dinner as we had last week. I did, and she did, and so we are going to the same place as last week. Fine by me. We both took advantage of some super good and pricey meals last week. This week, we will try the fish fry. Can’t wait!
*Today at 3:30pm it is Joke Time. I haven’t a clue as to how this all started but we reserved that time (because the boss is leaving early today) for each of us to tell a joke. Mine first one was a story-type joke and I got it off the net and told it to a co-worker in a different department for practice. It was not the big hit I thought it was going to be. Here it is:
A young man takes his date to the county fair and the first thing they do is ride the Ferris wheel. After the ride, the young man asks the girl what she would like to do next. She answers, “I would like to get weighed”. The young man thinks it’s kind of odd but takes her to the Midway and her weight is guessed at 112. Right on the button, she wins a prize. They then go get some popcorn, cotton candy and ride the roller coaster. When they are finished, he asks her again, “What would you like to do now?”. She looks at him and says, “I would like to get weighed!”. Now, he is sure something is wrong with this woman, “Why is she so into her weight?”, he thinks to himself. He doesn’t like the vanity he sees in her and decides the date is over. He drops her off at her house and her mother is surprised to see her and says, “You are home early tonight, how was your date?”. The young woman says, “Wousy”.
HA! I thought it was cute. Yes, you could see the punch line comin’ a mile a way but hey, I thought it was cute. But as I said, it was not deemed good enough. So we went online and found another joke which was deemed better, but I’m not so sure:
What is the difference between a Harley and a Hoover?
The location of the dirt bag!
HA! Funny, and of course fitting being we are in Milwaukee, WI and so near the Harley Davidson headquarters. But I don’t know…..I think I may offend the Harley riders out there. I mean, it’s just a joke but still….dirt bags? Do I dare spit on the hallowed ground that is Harleyland? All the Harley people I know are upstanding, shower-taking, good-job having, family-types. You really can’t be much of dirt-bag and still afford a Harley anymore. Oh, sure, they’re out there but still…You know what I’m sayin’ right?
Aw….fuck ‘em if they can’t take a joke! I’m not going to worry about upsetting the HD riders or the slutty lispers. I’m tellin’ ‘em both!
Have a great weekend!
Friday, April 4, 2008
Monday, March 31, 2008
Rainy Days and Nothing Much New
Not much going on today. This weekend was pretty normal (read: boring) as well. We ate dinner with my mom and step-dad on Friday night and then on Saturday afternoon we ate ham and rolls with WWH’s family to celebrate his dad’s 76th birthday. It all worked out fine. Some of the family played bingo, some did not. We were the did nots. We went to our friends house and tried to build a jigsaw puzzle that was a picture of Jerry Garcia. The only problem with that is that it was in black and white and each puzzle piece was a picture of Jerry or the band or whatever. It was a mosiac puzzle , so there are no distinct colors or lines in the puzzle to build it. I was cursed at quite a bit for the hour we worked on it, because I was the one who bought it for birthday gift. Then the four of us put the puzzle away and we played some cards for last bit of the evening. Sunday was boring household chores and just some lazing around.
Tonight we are watching part 4 of “John Adams”, an HBO mini-series. Like I said, nothing exciting at all.
Please send out your prayers for “Confessions of a CF Husband”. They thought they were getting a new pair of lungs this past weekend, but they did not work out. Check it out HERE.
Tonight we are watching part 4 of “John Adams”, an HBO mini-series. Like I said, nothing exciting at all.
Please send out your prayers for “Confessions of a CF Husband”. They thought they were getting a new pair of lungs this past weekend, but they did not work out. Check it out HERE.
Friday, March 28, 2008
Weekend Plans - Keller Birthdays
On iTunes today: Nothing
Gas Prices: $3.35
Not much going on today. Tonight is what I’m waiting for. We are going out with my parents tonight for dinner at The Quilted Bear. It’s a nice place and they serve good steak and seafood. Surf & Turf ! My Fav!
It is also my FIL’s birthday today. The IL’s are famous for their last-minute “Let’s get everyone together for _______ !”. Usually we change our plans or are just so boring that we don’t have any plans so we usually attend these last-minute get-togethers. Unfortunately, not this time. WWH should know the birthdays of his mother and father. I know mine! So when I scheduled this dinner with my folks, it was almost 3 weeks ago and when I asked WWH if that date was okay, he should’ve known better - A light bulb should have gone off - right?
So all week, I’ve been waiting for someone from WWH’s family to call us and say “Hey, it’s dad’s birthday this Friday, we should all go out to dinner or something…”. And all week, I’ve been dreading the idea of telling them that we already had plans.
So, what happens? You guessed it. WWH’s brother calls last night and says, “Hey it’s dad’s birthday tomorrow, we should take a cake over to their house on Saturday before they go play bingo to celebrate. What do you think?” Of course, since we don’t have any plans (I told you, we’re boring) for Saturday we are forced to say okay. I breathe a sigh of relief knowing that we dodged a bullet there. We can do Saturday – whew!
So, all day long I’ve been dreaming of haystack onion rings, steak and lobster, and my mother’s buy-1-get-1 coupons (God Bless her coupons!). So, guess who emails me? Yep! It’s WWH’s sister the planner of all planners. She’s great about organizing get-togethers, splitting and collecting the money for a large check (when the Keller’s go out, we are a group of 10+), she’s the super organizer of all things Keller-related. Only one problem: These are her parents too! We were just together all of us for Easter, why wasn’t anything brought up then? I get an email from her at 2:15 (2:15 TODAY!) asking if we were stopping over at “dads” house tonight. I told her of our plans tonight and she emailed me back telling me that she totally forgot her dad’s birthday this year. I am shocked by that, especially from her! So she is trying to get everyone’s plans so we can all be there together. I suggested Hot Ham and Rolls (a Milwaukee staple) before they go play bingo. That will be nice. We could even pay for his bingo sheets as a present! I’m brilliant! I know!
Have a great and safe weekend!
Gas Prices: $3.35
Not much going on today. Tonight is what I’m waiting for. We are going out with my parents tonight for dinner at The Quilted Bear. It’s a nice place and they serve good steak and seafood. Surf & Turf ! My Fav!
It is also my FIL’s birthday today. The IL’s are famous for their last-minute “Let’s get everyone together for _______ !”. Usually we change our plans or are just so boring that we don’t have any plans so we usually attend these last-minute get-togethers. Unfortunately, not this time. WWH should know the birthdays of his mother and father. I know mine! So when I scheduled this dinner with my folks, it was almost 3 weeks ago and when I asked WWH if that date was okay, he should’ve known better - A light bulb should have gone off - right?
So all week, I’ve been waiting for someone from WWH’s family to call us and say “Hey, it’s dad’s birthday this Friday, we should all go out to dinner or something…”. And all week, I’ve been dreading the idea of telling them that we already had plans.
So, what happens? You guessed it. WWH’s brother calls last night and says, “Hey it’s dad’s birthday tomorrow, we should take a cake over to their house on Saturday before they go play bingo to celebrate. What do you think?” Of course, since we don’t have any plans (I told you, we’re boring) for Saturday we are forced to say okay. I breathe a sigh of relief knowing that we dodged a bullet there. We can do Saturday – whew!
So, all day long I’ve been dreaming of haystack onion rings, steak and lobster, and my mother’s buy-1-get-1 coupons (God Bless her coupons!). So, guess who emails me? Yep! It’s WWH’s sister the planner of all planners. She’s great about organizing get-togethers, splitting and collecting the money for a large check (when the Keller’s go out, we are a group of 10+), she’s the super organizer of all things Keller-related. Only one problem: These are her parents too! We were just together all of us for Easter, why wasn’t anything brought up then? I get an email from her at 2:15 (2:15 TODAY!) asking if we were stopping over at “dads” house tonight. I told her of our plans tonight and she emailed me back telling me that she totally forgot her dad’s birthday this year. I am shocked by that, especially from her! So she is trying to get everyone’s plans so we can all be there together. I suggested Hot Ham and Rolls (a Milwaukee staple) before they go play bingo. That will be nice. We could even pay for his bingo sheets as a present! I’m brilliant! I know!
Have a great and safe weekend!
Thursday, March 27, 2008
Pontoons and Movie Review
On iTunes today: Paul McCartney
Gas Prices: $3.35
What I thought would be a very slow day at work, picked up and I was actually pretty busy all day. I love those days.
After I got into work this am, my mom sent me pictures that my brother forwarded. If you don’t already know this, my brother and I don’t talk anymore. Don’t feel bad for me, I chose this path and for right now, it’s the right path. But of course my mother sill keeps me informed of things that happen. She knows I love him but that I just don’t like him much right now. Anyway, back to the story.
So I have this picture in my inbox today at work and I almost spit out the soda I was drinking at the time.
I didn’t mean to laugh, but I couldn’t help it! I did hear about this earlier so I guess I already knew that no one was hurt and that although my brother is out one pontoon boat, and it really sucks, it really is kind of funny. I mean how did that guy land ON TOP of the pontoon?!? There are trees all over the place near the road I guess he just missed the trees by a few inches. Of course the guy was drunk! I can’t believe you even asked that question! He fled the scene, but the drunkard left the car behind. He was pretty easy to find I bet. How shitty is that? It just plain sucks.
On a lighter note, we did have date-night last night and we watched a movie so here’s the review:
Into The Wild:
This is a movie written by Sean Penn and Jon Krakauer. If you are not familiar with Jon Krakauer he was the guy who wrote “Into Thin Air” about his harrowing experiences climbing Mt. Everest. Into the Wild is a true story about a young man named Chris McCandless who graduates college and leaves his comfortable and semi-tortured family life behind and takes off first by car and then by foot. He burns his money, his credit cards, social security card, drivers license and doesn’t tell a soul where he is going or that he is leaving. After meeting some interesting characters (are they real or Hollywood?) along the way, he eventually makes it up to Alaska and lives in the wild for over 2 months before dying. He leaves behind a journal to recount his last days and most of the movie is guided along by what seems to be a recollection of his sister’s thoughts during the time he went missing. It’s a sad movie at the end but I liked it. All 180 minutes of it!
3.75 out of 5
Gas Prices: $3.35
What I thought would be a very slow day at work, picked up and I was actually pretty busy all day. I love those days.
After I got into work this am, my mom sent me pictures that my brother forwarded. If you don’t already know this, my brother and I don’t talk anymore. Don’t feel bad for me, I chose this path and for right now, it’s the right path. But of course my mother sill keeps me informed of things that happen. She knows I love him but that I just don’t like him much right now. Anyway, back to the story.
So I have this picture in my inbox today at work and I almost spit out the soda I was drinking at the time.
I didn’t mean to laugh, but I couldn’t help it! I did hear about this earlier so I guess I already knew that no one was hurt and that although my brother is out one pontoon boat, and it really sucks, it really is kind of funny. I mean how did that guy land ON TOP of the pontoon?!? There are trees all over the place near the road I guess he just missed the trees by a few inches. Of course the guy was drunk! I can’t believe you even asked that question! He fled the scene, but the drunkard left the car behind. He was pretty easy to find I bet. How shitty is that? It just plain sucks.
On a lighter note, we did have date-night last night and we watched a movie so here’s the review:
Into The Wild:
This is a movie written by Sean Penn and Jon Krakauer. If you are not familiar with Jon Krakauer he was the guy who wrote “Into Thin Air” about his harrowing experiences climbing Mt. Everest. Into the Wild is a true story about a young man named Chris McCandless who graduates college and leaves his comfortable and semi-tortured family life behind and takes off first by car and then by foot. He burns his money, his credit cards, social security card, drivers license and doesn’t tell a soul where he is going or that he is leaving. After meeting some interesting characters (are they real or Hollywood?) along the way, he eventually makes it up to Alaska and lives in the wild for over 2 months before dying. He leaves behind a journal to recount his last days and most of the movie is guided along by what seems to be a recollection of his sister’s thoughts during the time he went missing. It’s a sad movie at the end but I liked it. All 180 minutes of it!
3.75 out of 5
Wednesday, March 26, 2008
Movie Reviews
We did watch a few movies last weekend. Here are my reviews:
Love in the Time of Cholera:
Bleh. I didn’t like this movie at all. Let me explain further. I’m not a big fan of period films, especially if they are romance movies. But this one was available “now” on Netflix so it was shipped. It stars only two people (Benjamin Bratt and Javier Bardem) I’ve even heard of but I liked the acting all the way around. I just didn’t like the story or maybe it’s said better as I didn’t think the story deserved 2+ hours to be told. It’s about a man (Bardem), who meets a beautiful young girl (Givanna Mezzogiomo). She rejects him and ends up married to another man (Bratt). It goes on from there showing how they each lived their lives separately. Blah, super boring for me. Sorry to the romance fans out there. This just didn’t do it for me.
1 out of 5
Across The Universe:
I didn’t think I was going to like this movie. I thought, “A Musical? I won’t like this.” But I really did like it! After listening to the American Idol contestants rape and brutalize the Beatles songs, it was nice to herar some great renditions of these classics. I recognized a few names, Evan Rachel Woods for one. I was like, “That girl from ‘Thirteen’ can sing?” But YES, yes, she can! It’s about a boy from Liverpool who comes to America during the 60’s and meets this girl (Woods) and they sing their way through Draft Notices, Anti-War protests, first loves, etc. The songs are sung very well by some very talented people.
3 out of 5
Love in the Time of Cholera:
Bleh. I didn’t like this movie at all. Let me explain further. I’m not a big fan of period films, especially if they are romance movies. But this one was available “now” on Netflix so it was shipped. It stars only two people (Benjamin Bratt and Javier Bardem) I’ve even heard of but I liked the acting all the way around. I just didn’t like the story or maybe it’s said better as I didn’t think the story deserved 2+ hours to be told. It’s about a man (Bardem), who meets a beautiful young girl (Givanna Mezzogiomo). She rejects him and ends up married to another man (Bratt). It goes on from there showing how they each lived their lives separately. Blah, super boring for me. Sorry to the romance fans out there. This just didn’t do it for me.
1 out of 5
Across The Universe:
I didn’t think I was going to like this movie. I thought, “A Musical? I won’t like this.” But I really did like it! After listening to the American Idol contestants rape and brutalize the Beatles songs, it was nice to herar some great renditions of these classics. I recognized a few names, Evan Rachel Woods for one. I was like, “That girl from ‘Thirteen’ can sing?” But YES, yes, she can! It’s about a boy from Liverpool who comes to America during the 60’s and meets this girl (Woods) and they sing their way through Draft Notices, Anti-War protests, first loves, etc. The songs are sung very well by some very talented people.
3 out of 5
Tuesday, March 25, 2008
Random Thoughts
On iTunes today: Nothing, not in the mood for anything I have on my computer.
Gas Prices: I bought gas in Mayville, WI on Easter Sunday and it was $3.39/gal. Here in Milwaukee, it’s hovering around $3.23/gal
18.5 inches! That is the final snow total for the city I live in on Good Friday. We were the highest in the Metro Milwaukee area – yippee! NOT!
Winter Storm Watch – All day Thursday – up to 6 more inches! You’ve GOT to be kidding!
Easter recap: We drove an hour to a bar/restaurant, we ate for about a ½ hour (food was very good, it surprised us all) and then we drove an hour home. End of story.
I have some sort of flu bug and it aint the cold kind of flu! I’ll leave it at that.
Tonight it’s groceries and home, if I can make through the grocery store without pooping in my pants – okay, okay, I said no more and I promised I wouldn’t – so sue me!
Work is pretty slow today and I’ve asked everyone around me if they need help and it seems they are all in the same boat as me.
We got our State Refund back today. I am going to Home Depot to pick out some paint for our living room. We need to paint – there is a country blue on the walls and I don’t like it. I want something more contemporary. This will get us one step closer to our hardwood floors!
Sometimes I daydream about being my cat. He certainly has the life. Except the licking his pooper part.
I have a $50.00 gift certificate to Crate and Barrel that we got for our wedding (almost 11 months ago) and I can’t decide what to do with it! Every time I look at the website, I change my mind.
We are going out to eat with my mom and her husband (step-pops to me) on Friday night.
I hope you have a better day than me!
Gas Prices: I bought gas in Mayville, WI on Easter Sunday and it was $3.39/gal. Here in Milwaukee, it’s hovering around $3.23/gal
18.5 inches! That is the final snow total for the city I live in on Good Friday. We were the highest in the Metro Milwaukee area – yippee! NOT!
Winter Storm Watch – All day Thursday – up to 6 more inches! You’ve GOT to be kidding!
Easter recap: We drove an hour to a bar/restaurant, we ate for about a ½ hour (food was very good, it surprised us all) and then we drove an hour home. End of story.
I have some sort of flu bug and it aint the cold kind of flu! I’ll leave it at that.
Tonight it’s groceries and home, if I can make through the grocery store without pooping in my pants – okay, okay, I said no more and I promised I wouldn’t – so sue me!
Work is pretty slow today and I’ve asked everyone around me if they need help and it seems they are all in the same boat as me.
We got our State Refund back today. I am going to Home Depot to pick out some paint for our living room. We need to paint – there is a country blue on the walls and I don’t like it. I want something more contemporary. This will get us one step closer to our hardwood floors!
Sometimes I daydream about being my cat. He certainly has the life. Except the licking his pooper part.
I have a $50.00 gift certificate to Crate and Barrel that we got for our wedding (almost 11 months ago) and I can’t decide what to do with it! Every time I look at the website, I change my mind.
We are going out to eat with my mom and her husband (step-pops to me) on Friday night.
I hope you have a better day than me!
Monday, March 24, 2008
My Cousin and her need of help
If you can help, thank you!
A letter from my cousin:
I am once again doing the Great Strides walk to help raise funds for a cure for Cystic Fibrosis. I am asking each of you if you would be willing to donate even $5 for this cause. Every little bit helps. Also, if you can forward this on to your friends, family, co-workers, etc. that would help us get even further. You may also be able to ask your employers if they provide matching gifts. Please go to the website if you'd like to donate or join my team to walk (please leave a comment and I will forward you the address.) I truly have a stake in this as I've had this disease my entire life. I always was pretty mild and able to do anything I've ever wanted to do. As my life progressed, so did the disease. My lungs are getting worse, I'm less capable of doing things that used to come easy to me and I'm finding it really hard to stay strong enough to fight this fight I call life. Of course the love and support of family and friends helps me stay strong and helps me fight, but the research itself is also a vital part of living. This is not "Just a Fundraiser" to me, it's my life. So, please, consider donating any amount that you can to help us find a cure for this miserable disease and help CF stand for CURE FOUND.
Just a little bit to help you see what someone with this disease has to go through on a daily basis to help you understand. This last week and a half I was in the hospital with pneumonia and a "flare up." Being in the hospital consists of IV drug treatments, a high calorie diet, respiratory therapy, lots of lab work, breathing tests, procedures, stress, no sleep, etc. To give you an idea, this is what my "typical day" consists of:
Wake up at about 4:30am to start IV therapy. That first "round" goes until about 8 or 9 am. I either then try to go back to sleep or do some of my other treatments. I have to do my vest treatment which shakes my chest to loosen up the mucus in my lungs to help prevent further infection. This takes about 30 minutes and should be done twice, if not more, each day. I then need to take my other pills that aren't administered via IV. This consists of about ten other medications and inhalers. I also have nebulizer treatments that I have to do in addition to the rest of this which can take anywhere from 15-30 minutes. I have IV meds again from about noon to either 3 or 4 and then I have a break again for another eight hours.
A new thing I came home with this time is steroid induced or Cystic Fibrosis Related Diabetes. What this means for me is testing my blood sugars multiple times a day and giving myself insulin if need be. Not to mention making sure my blood sugar is also not too low where I have to get something in my system ASAP. This has been a real adjustment as I've never had to worry about this before. Let me tell you, it's not fun to have to poke yourself with needles multiple times a day and have to give yourself shots. Along with this, I am supposed to be eating as much as I possibly can because I'm supposed to be working on gaining 20 pounds. I had dropped a lot of weight this year and was told that if I couldn't gain the weight on my own that I would need to get a feeding tube. I was told it would help me get the necessary calories I would need to help get my weight up and keep me feeling strong. Being a female in this day and age and being told to gain weight is not easy. I'm having a really difficult time with this and am really trying to work with everyone, but I'm struggling. Because I was that sick and I wasn't gaining the weight, I got a feeding tube while I was in this last time. It was rather scary for me because I didn't want something else to help make this disease "real." I try to live my life as normally as possible and this was just something else that helped prove that my life is far from "normal." Not to mention because my lungs were so compromised from being sick, they were a bit concerned about having to put me under anesthesia and me not waking up well from it. They decided to go ahead with the procedure and I did almost end up being intubated and ending up in ICU for the night. However, they decided to use something called a "Bipap" machine to help apply positive pressure to my breathing and that seemed to help. I'm not completely understanding of what this machine does quite yet, but it's another new development that I've come home with. If you ever want to see what a medical supply warehouse looks like, just stop by sometime. :) Anyway, I now have the feeding tube and am supposed to give myself feedings while I sleep to help me gain the weight. Now, in true Nicki fashion, my tube is not working the way it's supposed to be, so I need to stop in and have it checked. So... eating as much during the day is still a priority, but I can now give myself supplemental feedings through the tube if need be. Although... you can also drink beer through that thing, so I guess there are some positives. :) J/k of course!
After my last IV drug treatments, I shake one more time, do my nebulizer for the night and take my other night time meds. I check my insulin one or more times and have a late night snack if need be or if wanted. Then I have to give myself a "feeding" through my tube, apply my bipap machine and try to get some sleep. My last drug is administered at either 10 or 11pm so that doesn't leave me much time to sleep between my night and morning doses.
So...that's a day in the life of Nicki at the moment. It's a bit of a job in itself and is quite overwhelming and stressful. I am trying to cope with it the best that I can, but I can certainly say that I've been awfully scared, humble and just plain exhausted these last few weeks. I absolutely appreciate all of the thoughts, prayers, flowers, gifts, visits and phone calls. That helps more then anyone can know. I am truly blessed with great family and friends in my life and I can honestly say that I don't think I would've made it this far with out all of you. I try to keep a smile on my face as much as I possibly can, but it's certainly getting harder with the disease progression and the new adjustments. Please consider donating to my team and help us find a cure. You can also join our team to walk as we can always use more team members.
A letter from my cousin:
I am once again doing the Great Strides walk to help raise funds for a cure for Cystic Fibrosis. I am asking each of you if you would be willing to donate even $5 for this cause. Every little bit helps. Also, if you can forward this on to your friends, family, co-workers, etc. that would help us get even further. You may also be able to ask your employers if they provide matching gifts. Please go to the website if you'd like to donate or join my team to walk (please leave a comment and I will forward you the address.) I truly have a stake in this as I've had this disease my entire life. I always was pretty mild and able to do anything I've ever wanted to do. As my life progressed, so did the disease. My lungs are getting worse, I'm less capable of doing things that used to come easy to me and I'm finding it really hard to stay strong enough to fight this fight I call life. Of course the love and support of family and friends helps me stay strong and helps me fight, but the research itself is also a vital part of living. This is not "Just a Fundraiser" to me, it's my life. So, please, consider donating any amount that you can to help us find a cure for this miserable disease and help CF stand for CURE FOUND.
Just a little bit to help you see what someone with this disease has to go through on a daily basis to help you understand. This last week and a half I was in the hospital with pneumonia and a "flare up." Being in the hospital consists of IV drug treatments, a high calorie diet, respiratory therapy, lots of lab work, breathing tests, procedures, stress, no sleep, etc. To give you an idea, this is what my "typical day" consists of:
Wake up at about 4:30am to start IV therapy. That first "round" goes until about 8 or 9 am. I either then try to go back to sleep or do some of my other treatments. I have to do my vest treatment which shakes my chest to loosen up the mucus in my lungs to help prevent further infection. This takes about 30 minutes and should be done twice, if not more, each day. I then need to take my other pills that aren't administered via IV. This consists of about ten other medications and inhalers. I also have nebulizer treatments that I have to do in addition to the rest of this which can take anywhere from 15-30 minutes. I have IV meds again from about noon to either 3 or 4 and then I have a break again for another eight hours.
A new thing I came home with this time is steroid induced or Cystic Fibrosis Related Diabetes. What this means for me is testing my blood sugars multiple times a day and giving myself insulin if need be. Not to mention making sure my blood sugar is also not too low where I have to get something in my system ASAP. This has been a real adjustment as I've never had to worry about this before. Let me tell you, it's not fun to have to poke yourself with needles multiple times a day and have to give yourself shots. Along with this, I am supposed to be eating as much as I possibly can because I'm supposed to be working on gaining 20 pounds. I had dropped a lot of weight this year and was told that if I couldn't gain the weight on my own that I would need to get a feeding tube. I was told it would help me get the necessary calories I would need to help get my weight up and keep me feeling strong. Being a female in this day and age and being told to gain weight is not easy. I'm having a really difficult time with this and am really trying to work with everyone, but I'm struggling. Because I was that sick and I wasn't gaining the weight, I got a feeding tube while I was in this last time. It was rather scary for me because I didn't want something else to help make this disease "real." I try to live my life as normally as possible and this was just something else that helped prove that my life is far from "normal." Not to mention because my lungs were so compromised from being sick, they were a bit concerned about having to put me under anesthesia and me not waking up well from it. They decided to go ahead with the procedure and I did almost end up being intubated and ending up in ICU for the night. However, they decided to use something called a "Bipap" machine to help apply positive pressure to my breathing and that seemed to help. I'm not completely understanding of what this machine does quite yet, but it's another new development that I've come home with. If you ever want to see what a medical supply warehouse looks like, just stop by sometime. :) Anyway, I now have the feeding tube and am supposed to give myself feedings while I sleep to help me gain the weight. Now, in true Nicki fashion, my tube is not working the way it's supposed to be, so I need to stop in and have it checked. So... eating as much during the day is still a priority, but I can now give myself supplemental feedings through the tube if need be. Although... you can also drink beer through that thing, so I guess there are some positives. :) J/k of course!
After my last IV drug treatments, I shake one more time, do my nebulizer for the night and take my other night time meds. I check my insulin one or more times and have a late night snack if need be or if wanted. Then I have to give myself a "feeding" through my tube, apply my bipap machine and try to get some sleep. My last drug is administered at either 10 or 11pm so that doesn't leave me much time to sleep between my night and morning doses.
So...that's a day in the life of Nicki at the moment. It's a bit of a job in itself and is quite overwhelming and stressful. I am trying to cope with it the best that I can, but I can certainly say that I've been awfully scared, humble and just plain exhausted these last few weeks. I absolutely appreciate all of the thoughts, prayers, flowers, gifts, visits and phone calls. That helps more then anyone can know. I am truly blessed with great family and friends in my life and I can honestly say that I don't think I would've made it this far with out all of you. I try to keep a smile on my face as much as I possibly can, but it's certainly getting harder with the disease progression and the new adjustments. Please consider donating to my team and help us find a cure. You can also join our team to walk as we can always use more team members.
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