I have come to the conclusion that being sick is not only frustrating, but it really rather SUX! I am really tired of being tired and not being able to do things that I normally can do and having my life taken over by this disease. I know that I should be grateful that I have a "good" type of Leukemia and that in another 6 weeks or so, I should be feeling much better...but when you are in the middle of it and have been sick for 2 months already, you start to lose your perspective.
It was one thing when I had to go to the Dr's one afternoon a week for chemo, but then to be told "oh BTW you will have to come down for the next 3 days and get a Neupagen shot" it completely wrecks your schedule. Esp. since it takes me longer to make the drive then to actually have the shot done. Not to mention being in the hospital for 4 1/2 days (the weekend before Christmas!). I guess the upside is that I didn't have anything "nasty" just a reaction to the "bad cells exploding and flooding my system". Yes - I know there is a medical term for that, but I'll be damned if I can remember what it is. So the fever and chills continue - but alternating ibuprofin and tylonol seem to help (most of the time). I don't know wether to be grateful that my blood counts were too low to do chemo this week (platelets were 74k - supposed to be between 150k - 200k, and need to be at least 100k for chemo) or pissed because it adds one more week of treatment. Reminder to self - don't call the Dr. when running a fever, unless you want to be stuck in a small room for days on end.
On the up side - I owe a huge couple of thank you's to people. To BFF MB who went to the mall and shopped so I would have at least one present for The Man under the tree. To BFF D who has been wrangling Youngest Son from Kids Club. To Super In-Laws who took Youngest Son (and brought food for the family). Even Middle Son's Dad brought him up to visit me in the hospital. And of course, the BIGGEST thank you of all to my Wonderful Man who had to take care of a million little details & go shopping for presents while I was cooped up. For everyone who has offered food/help - warning: your time may be coming (sooner than you think)! LOL To everyone who has sent warm thoughts/prayers/good wishes - I am truly grateful for your friendship and concern. It keeps me going!
Telling the Oldest Boys was stressful - how do you explain that Mommy is sick (has cancer) and not scare the SH*T out of them? They seem to be handling it ok - I think both knew that it was something more serious than a "skin condition" anyway. DUH! - If nothing else the hospitalization kind of gave it away. LOL. In any case they are stepping up and helping more (not that there is a lot of choice for them - ha ha). I guess it's good that as sick as they has seen me over the past couple of months - that is as sick as I will be. Looking for that positive!
12.26.2009
11.26.2009
It's Turkey Day!
Not necessarily a "touchy, feely, happy" post.
I have somewhat of a confession - usually this is my FAVORITE holiday - but I'm struggling this year. I love going over to Daddy's house and grubbing and hanging out with family and then back to our place to hang out with friends and play games for the evening. I look forward to it, but sadly this year I am off my game and finding it hard to get motivated for the whole thing.
I am truly sick of being sick! I was back at the Dr's again last week - every time I wean off the steroids my whole system freaks out again and this time my face/neck took the brunt of it. My face was so swollen that my eyes were little slits and I couldn't drive - not to mention all the looks that I got out in public. Now I admit to being somewhat vain, but I think this episode may have cured me. (Not to mention gave me greater empathy for those who have permanent disfigurements - people can be VERY insensitive). Dr. started me out on 10mg of steroids and ibuprofin, after 3 days this was upped to 20mg, since the lower dose was not cutting it. At least then the flare ups stopped and the ibuprofin somewhat controls the pain.
Got the call on Monday that they found some abnormalities in my cells (from the last blood draw on Thurs) and now they are not sure what came first (chicken or the egg). Is my body producing abnormal cells and that's why I keep having these flare ups or are the flare ups warping the cells? Who the hell knows??? They know what it is and the "treatment", but while it may contain the symptoms - it does NOT cure them. So now it's time to go see a Hemotologist and have a Bone Marrow Biopsy. Whoo Hoo - not really looking forward to that at all. But maybe, just maybe, they can figure out what is causing all this crap and I might have a chance of living a normal life again!
Thank goodness for The Man - he has been so understanding and helpful, not to mention toleranct. He has decided though that this episode makes up for all of the times that he has been sick in the past 10 years. I know it's not easy on him being Mr. Mom for a few days - and now that we are into "weeks" it has been more than stressful. Esp. when I can't even go out in public due to the way I was looking.
Work has been great too - my client's are very compassionate, which is probably a new expereince for some, but that's ok. In the time I have been there, so far I have only worked one full week (two if you can't this week) and they haven't fired me yet!!! So again, I am thankful, if not a little grumpy.
Oldest Son is currently in jail - after sneaking out of his dads, getting drunks, and breaking into the high school with his "friends". Just don't know what else to say about that. I guess I am thankful that at least we know where he is and what he is doing right now. Kinda kills the whole decorating the tree this weekend though.
Two Youngest Boys are doing well at the moment - being thankful for that as well. But there are times when Mom's patience is wearing thin with the teenage attitude! It's just a phase - right?
Well I guess that wraps up my thankfulness rant! I will work on having a more positive attitude as the day goes on - because I know that I will have a great time today seeing everyone.
I have somewhat of a confession - usually this is my FAVORITE holiday - but I'm struggling this year. I love going over to Daddy's house and grubbing and hanging out with family and then back to our place to hang out with friends and play games for the evening. I look forward to it, but sadly this year I am off my game and finding it hard to get motivated for the whole thing.
I am truly sick of being sick! I was back at the Dr's again last week - every time I wean off the steroids my whole system freaks out again and this time my face/neck took the brunt of it. My face was so swollen that my eyes were little slits and I couldn't drive - not to mention all the looks that I got out in public. Now I admit to being somewhat vain, but I think this episode may have cured me. (Not to mention gave me greater empathy for those who have permanent disfigurements - people can be VERY insensitive). Dr. started me out on 10mg of steroids and ibuprofin, after 3 days this was upped to 20mg, since the lower dose was not cutting it. At least then the flare ups stopped and the ibuprofin somewhat controls the pain.
Got the call on Monday that they found some abnormalities in my cells (from the last blood draw on Thurs) and now they are not sure what came first (chicken or the egg). Is my body producing abnormal cells and that's why I keep having these flare ups or are the flare ups warping the cells? Who the hell knows??? They know what it is and the "treatment", but while it may contain the symptoms - it does NOT cure them. So now it's time to go see a Hemotologist and have a Bone Marrow Biopsy. Whoo Hoo - not really looking forward to that at all. But maybe, just maybe, they can figure out what is causing all this crap and I might have a chance of living a normal life again!
Thank goodness for The Man - he has been so understanding and helpful, not to mention toleranct. He has decided though that this episode makes up for all of the times that he has been sick in the past 10 years. I know it's not easy on him being Mr. Mom for a few days - and now that we are into "weeks" it has been more than stressful. Esp. when I can't even go out in public due to the way I was looking.
Work has been great too - my client's are very compassionate, which is probably a new expereince for some, but that's ok. In the time I have been there, so far I have only worked one full week (two if you can't this week) and they haven't fired me yet!!! So again, I am thankful, if not a little grumpy.
Oldest Son is currently in jail - after sneaking out of his dads, getting drunks, and breaking into the high school with his "friends". Just don't know what else to say about that. I guess I am thankful that at least we know where he is and what he is doing right now. Kinda kills the whole decorating the tree this weekend though.
Two Youngest Boys are doing well at the moment - being thankful for that as well. But there are times when Mom's patience is wearing thin with the teenage attitude! It's just a phase - right?
Well I guess that wraps up my thankfulness rant! I will work on having a more positive attitude as the day goes on - because I know that I will have a great time today seeing everyone.
11.08.2009
Recovery....it's a process.
Seems like forever since I have been feeling well, but in reality it has only been 2 1/2 weeks. It all started out so normal and then went to hell.
On the 21st I got a flu shot - just like every year (esp. due to the locations I work in) So ok, no big deal. Well the next day my tooth started bothering me, after a trip to the dentist on the 23rd - an infection was discovered and anti-biotics were prescribed. Again not a big deal (or so I thought). Due to the anti-biotics by Monday (26th) I had developed yet another infection. Fun, fun! Then I started feeling run down/tired, fever/chills, chest congestion, shortness of breath..yada yada yade....yep you guessed it....welcome to the H1N1 virus. It became a struggle just to get through the day. By the time I got home for work (yes I was working, didn't know I had the piggy flu - just thought I had a cold) I could do little more than sit on the couch and struggle for breath. Couldn't even walk up the stairs without stopping and cooking/cleaning was pretty much out of the question. Usually in the am I would be okay, but the later in the day it got the more useless I became. Well by Sunday (1st) I started breaking out in this bizarre rash. It didn't itch at all - but looked something like a cross between eczema, chicken pox, and really bad acne. At first it was just on part of my legs and a few spots on my arms.
So after playing "stump the nurses" at work it was off to the doctors...with a list of 10+ symptoms and a record of all that had been going on --- the diagnosis...H1N1 and Erythema Nodosum (that's the skin condition). After asking for an English translation basically the doc said "my immune system freaked out" and started "attacking me rather than illnesses". Fortunately I didn't itch but was very very sore. He gave me some ibuprogin/steriod meds. It was too late to start on flu meds, since I was "mostly over it". I was cleared to return to work, since I didn't have anything catching, but was warned to stay away from sick people or I could end up hospitalized - my immune system wouldn't take much more. Well slowly I started feeling better but looking much much worse - the break-out continued to spread up my arms/legs, chest, face, neck and as warned also started turning to bruises. Thank goodness it's winter and I can cover up, not to mention I can't shave until my skin it cleared - well lets just say I'm not very pretty right now.
Then came Thursday (5th) and I had a relapse. Started just feeling horrible...the pain had spread into my muscles/joints and I was getting worse rather than better. After falling down Friday morning and a call to the doctors office I was told to come in asap. After another blood draw and exam, it was determined that some virus was still kicking my immune systems ass and winning big. The doc wanted to put me in the hospital but due to a lack of insurance (it's coming soon!) she offered me the option of getting steriods shot into the butt and a high but brief dose of prednasone, gave me strict orders to go home and go to bed and if I didn't see much improvement by Sat morning then it was off to the hospital - deal with it. So got shot up and went home to bed, after putting family members on alert. Well I woke up yesterday feeling improved. Not great mind you, but better. For the first time in a week I didn't feel like I was going to fall over everytime I stood up, no freezing/sweating incidents, and actually walked up the stairs without stopping (but still had to sit down afterwards). I still didn't do much, but was feeling ok. Today I am hanging in - a little itchy, still tired, still sore, but better than Friday.
The Boys have been tropers for the most part, esp. since I was sick for the Oldest ones birthdays, and Halloween. Although they did threaten to go on hunger strike if I forced them to eat anymore frozen microwave dinners or canned meals. So fast food has become a second food group in our home. Mom hasn't cooked for about 2 weeks now. The Man has been holding up pretty well in the Mr. Mom role, taking care of me and The Boys. He has really stepped it up and kept everything together. He has had to handle the shopping (since I can't walk that far) and other things that need to be taken care of. Special thanks also goes to my wonderful M-I-L who brought over some home cooked for for dinner and breakfast. The first that anyone has had in a while.
So the prognosis is guarded at the moment, but slowly I am on the mend and hope to be fully recovered by this time next weekend. In the mean time I will drink plenty of fluids, get plenty of rest, and try to actually work a full week next week.
On the 21st I got a flu shot - just like every year (esp. due to the locations I work in) So ok, no big deal. Well the next day my tooth started bothering me, after a trip to the dentist on the 23rd - an infection was discovered and anti-biotics were prescribed. Again not a big deal (or so I thought). Due to the anti-biotics by Monday (26th) I had developed yet another infection. Fun, fun! Then I started feeling run down/tired, fever/chills, chest congestion, shortness of breath..yada yada yade....yep you guessed it....welcome to the H1N1 virus. It became a struggle just to get through the day. By the time I got home for work (yes I was working, didn't know I had the piggy flu - just thought I had a cold) I could do little more than sit on the couch and struggle for breath. Couldn't even walk up the stairs without stopping and cooking/cleaning was pretty much out of the question. Usually in the am I would be okay, but the later in the day it got the more useless I became. Well by Sunday (1st) I started breaking out in this bizarre rash. It didn't itch at all - but looked something like a cross between eczema, chicken pox, and really bad acne. At first it was just on part of my legs and a few spots on my arms.
So after playing "stump the nurses" at work it was off to the doctors...with a list of 10+ symptoms and a record of all that had been going on --- the diagnosis...H1N1 and Erythema Nodosum (that's the skin condition). After asking for an English translation basically the doc said "my immune system freaked out" and started "attacking me rather than illnesses". Fortunately I didn't itch but was very very sore. He gave me some ibuprogin/steriod meds. It was too late to start on flu meds, since I was "mostly over it". I was cleared to return to work, since I didn't have anything catching, but was warned to stay away from sick people or I could end up hospitalized - my immune system wouldn't take much more. Well slowly I started feeling better but looking much much worse - the break-out continued to spread up my arms/legs, chest, face, neck and as warned also started turning to bruises. Thank goodness it's winter and I can cover up, not to mention I can't shave until my skin it cleared - well lets just say I'm not very pretty right now.
Then came Thursday (5th) and I had a relapse. Started just feeling horrible...the pain had spread into my muscles/joints and I was getting worse rather than better. After falling down Friday morning and a call to the doctors office I was told to come in asap. After another blood draw and exam, it was determined that some virus was still kicking my immune systems ass and winning big. The doc wanted to put me in the hospital but due to a lack of insurance (it's coming soon!) she offered me the option of getting steriods shot into the butt and a high but brief dose of prednasone, gave me strict orders to go home and go to bed and if I didn't see much improvement by Sat morning then it was off to the hospital - deal with it. So got shot up and went home to bed, after putting family members on alert. Well I woke up yesterday feeling improved. Not great mind you, but better. For the first time in a week I didn't feel like I was going to fall over everytime I stood up, no freezing/sweating incidents, and actually walked up the stairs without stopping (but still had to sit down afterwards). I still didn't do much, but was feeling ok. Today I am hanging in - a little itchy, still tired, still sore, but better than Friday.
The Boys have been tropers for the most part, esp. since I was sick for the Oldest ones birthdays, and Halloween. Although they did threaten to go on hunger strike if I forced them to eat anymore frozen microwave dinners or canned meals. So fast food has become a second food group in our home. Mom hasn't cooked for about 2 weeks now. The Man has been holding up pretty well in the Mr. Mom role, taking care of me and The Boys. He has really stepped it up and kept everything together. He has had to handle the shopping (since I can't walk that far) and other things that need to be taken care of. Special thanks also goes to my wonderful M-I-L who brought over some home cooked for for dinner and breakfast. The first that anyone has had in a while.
So the prognosis is guarded at the moment, but slowly I am on the mend and hope to be fully recovered by this time next weekend. In the mean time I will drink plenty of fluids, get plenty of rest, and try to actually work a full week next week.
11.03.2009
Wow - it's been how long?
Guess I better do a little update before daddy starts to nag (jk). Well managed to survive all of ,
The Boy's Birthday - 17, 13, 7 - oh and 32! My how time flies - all are doing fairly well at the moment.
The Boy's Birthday - 17, 13, 7 - oh and 32! My how time flies - all are doing fairly well at the moment.
The Man & I have both changed jobs...I am now at Campus for Hope on the long-term dual diagnosis unit and he is now with PayFlex. Both of us are pretty happy with where we have landed.
Middle Son as a Possessed Kitty...boy's in the group went as cats and the girl's as bunnies. Not easy to find a cat custume that doesn't come with a skirt!
Youngest Son - brought home mommy lots and lots of candy, lucky for him I can't eat most of it, due to some ongoing dental problems. 9.02.2009
Sleep Deprivation or...how do you like my bags?
Sleep dep...what the heck? So it has been at least a week since I have last slept through the night. Those of you who know me well, know that I do NOT do well when I don't get my sleep...well consider yourself warned! At most I am getting 3-4 hours of unbroken sleep and then wake up every 15 minutes to 1 hour after that. Lately have basically been "up" since sometime between 4 and 5am. I even gave up one of my weekend naps to see if that would help - uh, NOPE. Not really sure what is going on, but it's not good. I am REALLY tempted to go and get some Tylenol PM/Sominex nighty-nighty stuff and just take my chances. Yes, I know that since I have sleep apnea I am not suposed to take it - but I'm getting to the point where I just don't care, I just want to sleep (for about 10 hours - but would settle for 7).
In other news - after an extended period of unemployment The Man has finally had a job offer (YAY) but will not start until the 14th (BOO). In the meantime, he has been working when he can with the elevator gig. Thankfully this has translated into a day or two per week, so at least that's something.
Youngest Son has started soccer and seems to be adjusting back into the school routine. We are doing a ride share for school with a neighbor - since big brother is no longer available to walk him to school. Alternating weeks for driving - so it's not too bad.
Middle Son is adjusting to Jr. High - has started Cross Country, but decided not to go out for Show Choir this year. Aparently cuts into the time he has to "hang out" which would be "THE END OF THE WORLD". Or something like that. He is on the same school team (they divide up the kids into clusters for classes) as his big brother was, so at least the teachers are prepared.
Oldest Son is doing well at school. Couldn't get into the math class (Trig) that he wanted because aparently they have to pay to take advanced math out in the boonies. He would get college credit for it - so will try for a scholarship next year. Due to on-going legal issues he has been kicked off the Cross Country team, so that was a bit of a bummer. Actually what he got was a suspension for most of the season, which would disqualify him from districts and therefore from state as well. Went to court here in Sarpy and they kicked it back to Madison County - so still don't know what will happen. Figure at this rate he will be on probation until he's 19.
Really want to go back to bed now, but need to go to work. If the weather holds maybe a bike ride tonight - will try to exhaust myself even more and see if that helps.
In other news - after an extended period of unemployment The Man has finally had a job offer (YAY) but will not start until the 14th (BOO). In the meantime, he has been working when he can with the elevator gig. Thankfully this has translated into a day or two per week, so at least that's something.
Youngest Son has started soccer and seems to be adjusting back into the school routine. We are doing a ride share for school with a neighbor - since big brother is no longer available to walk him to school. Alternating weeks for driving - so it's not too bad.
Middle Son is adjusting to Jr. High - has started Cross Country, but decided not to go out for Show Choir this year. Aparently cuts into the time he has to "hang out" which would be "THE END OF THE WORLD". Or something like that. He is on the same school team (they divide up the kids into clusters for classes) as his big brother was, so at least the teachers are prepared.
Oldest Son is doing well at school. Couldn't get into the math class (Trig) that he wanted because aparently they have to pay to take advanced math out in the boonies. He would get college credit for it - so will try for a scholarship next year. Due to on-going legal issues he has been kicked off the Cross Country team, so that was a bit of a bummer. Actually what he got was a suspension for most of the season, which would disqualify him from districts and therefore from state as well. Went to court here in Sarpy and they kicked it back to Madison County - so still don't know what will happen. Figure at this rate he will be on probation until he's 19.
Really want to go back to bed now, but need to go to work. If the weather holds maybe a bike ride tonight - will try to exhaust myself even more and see if that helps.
8.12.2009
Anything to avoid exercise
So for my birthday I wanted a bicycle...so The Man and I went shopping. I got a pretty purple one and he got a blue one. Figured this was a good way to get some exercise and do something healthy with the kids. Well we decided to get a bike rack for the vehicles (fits both the van and the car) since the boys bikes can go inside the van - but 4 bikes might be pushing it. We also picked up a bike rack for inside the garage to help keep the new bikes out of the way. And here is were the "avoidance" takes place....
The Man (instead of listening to me) decides to balance one foot on the wet bumper of the van and brace one foot on the back wall of the garage to install the bike rack. Despite my offers that I could back the van up and bring over the ladder - I was told to bugger off. Anyway...long story short...guess who slipped? Well we have a table out in the garage that nicely connected with his knee cap and tried to force it up into the middle of his thigh. OUCH! Let's just say that the air was very blue for a while.
Next day it's off to the Dr's....nothing broken (thankfully) but very swollen and likely to be that way for several weeks. Got some med's to help with the pain/swelling and no spending quality time with an ice bag. Guess it will be a while before our first ride.
The Man (instead of listening to me) decides to balance one foot on the wet bumper of the van and brace one foot on the back wall of the garage to install the bike rack. Despite my offers that I could back the van up and bring over the ladder - I was told to bugger off. Anyway...long story short...guess who slipped? Well we have a table out in the garage that nicely connected with his knee cap and tried to force it up into the middle of his thigh. OUCH! Let's just say that the air was very blue for a while.
Next day it's off to the Dr's....nothing broken (thankfully) but very swollen and likely to be that way for several weeks. Got some med's to help with the pain/swelling and no spending quality time with an ice bag. Guess it will be a while before our first ride.
7.17.2009
When beating your child is not an option
So what do you do when you are completely stressed out and need to "do" something? Time to break out with a little home re-do.
Strip down 2 levels of border and move the furniture..nope still pissed off, need to do more.
Time to start painting...and no - mom did NOT pick out this color!
Almost done and temper is getting back under control. Citrus Burst? No kidding.
The final product....tired and calm (mostly)...note the outlet covers are now black.
Middle Son is very pleased with the new digs...need to get some new bedding stuff (in black), but not today. Oldest Son is unlikely to be as happy....but really, who cares?
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