Current mood: impervious
Howdy folks... just a quickie today... Just wanted to say Hi to everyone. My recovery is still moving right along... Protein spillage counts are still dropping. I am almost off the prednisone, which has kinda sucked to wean from... All sorts of fun aches and pains come along with depriving your body of steroids after it has become used to them. I feel like I'm 80 years old with bad arthritis some days! But this too shall pass so, its all good! My face is starting to look a tiny bit like ME again, and the swelling in my feet and ankles is going down too.... I am completely off all the mood altering shit they had me on... Dealing with some necessary attitude adjustments from that, but again... taking it one day at a time! I went to see a Lawyer today... he seemed like a decent fellow, but not the ball of fire that I was hoping for... If anyone out there knows a real hotshot kinda lawyer who does personal injury cases please let me know!
hmmmmm what else has happened since last post.... Halloweenie.... um Lemon and I dressed as Gorgons... me as Medusa and him as my adorable little spawn ;) I made both our costumes...needle felted 30 or so snakes to twist in amongst my dreads and made him a hat with needle felted snakes all over it. We both dresses in all green and green makeup and such...
The afternoon and evening were one of those times where NOTHING goes as planned and thus I didn't get any pictures, but have no fear (lol) I still have our awesome costumes and I shall be putting us back in them at some point soon to take some photos, which I will then post promptly for your viewing pleasure.... In other news I am trying to get a storefront up online with all of my random creations for sale... I'll post a link and all that good stuff once it is done.... I'm hoping to start going back to a pool every day again next week after about a month hiatus... it seemed like it was helping alot and if nothing else was giving me an hour or two everyday to collect my thoughts and gain a bit of my vanishing sanity! So hopefully that will happen.... I guess thats about it... on to that most dreaded of subjects..... POLITICS
So yeah, YES I voted for Nader/Gonzalez... Why? Because it was the ONLY choice I could feel okay about... well not the only, it was a toss up between him and Cynthia Mckinney the Green Party's candidate... Sorry but I think the two party system is a bunch of bullshit and I think voting for the lesser of two evil bastards is ridiculous... If I am going to bother participating in the game of "election day" than I am going to vote for someone who truely speaks of a "CHANGE" I can believe in... not some bullshit flashy rhetoric and catch phrases.... and just cause someone can raise his voice in a psuedo passionate way in all the right places in his speeches does not make him my saviour, or the next MLK, or any of the other foolish things I've heard Rabid Obama fans spouting... Yeah McCain may have been slightly more evil... but Obama's voting record speaks for itself... he is just as easily bought as all the rest! The "changes" he mentions when he is actually getting specific (which is rarely) are hardly the radical ideas that are needed to truely change this country... I don't care how much he uses the word "change"...I'll believe it when I SEE IT. Believe me, I hope that I'll have to eat those words some day... but I'm not gonna hold my breath on it.... Yah know what would be a good first step he could take to prove he is so much different than all the other snakes in washington? If his first official act as President was to indict those scum sucking POS's (Bush, Cheney, Rumsfeld, Rice, Petreus...ETC... etc... etc) on all of the crimes against America and against ALL OF HUMANITY that they've been commiting for the past 8 years.... but I'm pretty sure that won't happen....I'm pretty sure his first act will be to join in which ever of those currently active crimes is the most profitable for him and his..... Am I cynical? no.... just realistic, outspoken, and informed... Its a shame more Americans aren't... maybe if they were there'd be something behind all the "FREEDOM" speak.....
Currently watching:
Zeitgeist, The Movie
observations, thoughts, poems, and perspectives... from within my fishbowl and without...
Showing posts with label HUS. Show all posts
Showing posts with label HUS. Show all posts
Thursday, November 6, 2008
Thursday, October 2, 2008
Biopsy Results and such
Current mood:doing the "NO MORE PREDNISONE" jig!
Hello Hello,
I went to my Kidney Doc yesterday afternoon to get the results of my biopsy.... GOOD NEWS :) There is no apparent permanent damage to the filters of my kidneys... which was a concern since kidney filters are necessary and are unable to repair themselves once damaged... SO THAT IS AWESOME! In fact, as far as they can see there should be noo permanent damage at all! The tiny little capillaries (blood vessels) were damaged by the HUS/TTP and that is likely why I am still spilling so much protein, but my doc says he fully expects them to heal over time... The other good news, HE IS TAKING ME OFF THE PREDNISONE!!! YAY!!!!!!!!!!!!!!!!!!!!!!!!!!! I nearly had to jump up and do a jig when he said that.... Granted I will be on it for another 5 or 6 weeks as it gets tapered off but at least there is a light at the end of the tunnel, plus I should start seeing less side effects since the dosage will be HALF what I was on within a week (he cut it by quarter at present so 30mg instead of 40mg) Next week I will go to 20mg.... I can't wait for the effects of this shit to stop!! WOOHOO! No more fat face and a half, no more wierd hair growth, no more violent mood swings and hard to control temper... plus I can stop worrying about bone loss and all the less obvious effects this junk has.... ANYWHO.... My problems are far from over... protein leakage is still quite high, but he doesn't think the prednisone is going to do anymore than it has already done.. at this point he said its just a waiting game... he expects that at some point my body will "flip a switch" and my kidneys will take back over and do what they should be doing with all that protein. He did add on one medication but it is a pretty minor one... no bad side effects and stuff, he thinks it might help with the protien a little bit so well see...................but mostly we are counting on my body to fix itself.....SO that sounds good to me... Ive gotta go back to my naturapath soon... between that and the acupuncture and chiropractic I have high hopes that they will be able to help my body heal itself and I will have no lasting damage to any vital organs! HOORAY :)
Thats pretty much all I have to report for now... Things are okay on the homefront... I feel like I took a little step back the past couple weeks, between the biopsy and having to take it easy for a weekish, not being able to go to the pool, and my diet not being the best cause I haven't felt up to cooking healthy food.... BUT I'm getting back on the wagon now and trying to make up for the energy I lost... One of my bestest friends who lives practically in another country is in town so I'm pretty dang happy about that, and another of my bestest friends is coming for a visit this weekend and we are having a bonfire and stuff with the kiddies and her family (who are all really cool too) so I am really looking forward to this weekend, should be a great time, and I haven't been to a good old fashion bonfire in over a year (I LOVE CAMPFIRES!) YAY! ummmm....letsee... whatelse... My dad bought Lennon this ride-on Lightening McQueen Car thing that makes all sorts of noises and flashing lights and stuff and he LOVES it and so that has become the constant soundtrrack to my life the past couple days.... *sigh* at least its keeping him out of trouble I guess but goodloood I will be happy when the batterys die on that thing..... Just a word to anyone intending on getting Lennon something for his 2nd birthday coming in November... PLEASE PLEASE, NO MORE PLASTIC NOISEMAKING TOYS!!!!!!!!!!!!!!!! lol! But seriously... good old fashion wooden style toys.... metal toys (play pots and pans and such)... books.... clothes... etc..... I am planning his party as we speak so watch your mailboxes for invites, especially those of you with lil ones.... hmm yeah... thats all for now I guess, Thanks to everyone who's been anxiously awaiting my biopsy results with me and thanks for all the well wishes... I have so many awesome people in my life sometimes I can't believe my luck... You all rock argyle socks :)
MUCH MUCH LOVE TO YOU ALL!
Kalee and Lennon
Currently watching:
Meet the Robinsons
Release date: 2007-10-23
Hello Hello,
I went to my Kidney Doc yesterday afternoon to get the results of my biopsy.... GOOD NEWS :) There is no apparent permanent damage to the filters of my kidneys... which was a concern since kidney filters are necessary and are unable to repair themselves once damaged... SO THAT IS AWESOME! In fact, as far as they can see there should be noo permanent damage at all! The tiny little capillaries (blood vessels) were damaged by the HUS/TTP and that is likely why I am still spilling so much protein, but my doc says he fully expects them to heal over time... The other good news, HE IS TAKING ME OFF THE PREDNISONE!!! YAY!!!!!!!!!!!!!!!!!!!!!!!!!!! I nearly had to jump up and do a jig when he said that.... Granted I will be on it for another 5 or 6 weeks as it gets tapered off but at least there is a light at the end of the tunnel, plus I should start seeing less side effects since the dosage will be HALF what I was on within a week (he cut it by quarter at present so 30mg instead of 40mg) Next week I will go to 20mg.... I can't wait for the effects of this shit to stop!! WOOHOO! No more fat face and a half, no more wierd hair growth, no more violent mood swings and hard to control temper... plus I can stop worrying about bone loss and all the less obvious effects this junk has.... ANYWHO.... My problems are far from over... protein leakage is still quite high, but he doesn't think the prednisone is going to do anymore than it has already done.. at this point he said its just a waiting game... he expects that at some point my body will "flip a switch" and my kidneys will take back over and do what they should be doing with all that protein. He did add on one medication but it is a pretty minor one... no bad side effects and stuff, he thinks it might help with the protien a little bit so well see...................but mostly we are counting on my body to fix itself.....SO that sounds good to me... Ive gotta go back to my naturapath soon... between that and the acupuncture and chiropractic I have high hopes that they will be able to help my body heal itself and I will have no lasting damage to any vital organs! HOORAY :)
Thats pretty much all I have to report for now... Things are okay on the homefront... I feel like I took a little step back the past couple weeks, between the biopsy and having to take it easy for a weekish, not being able to go to the pool, and my diet not being the best cause I haven't felt up to cooking healthy food.... BUT I'm getting back on the wagon now and trying to make up for the energy I lost... One of my bestest friends who lives practically in another country is in town so I'm pretty dang happy about that, and another of my bestest friends is coming for a visit this weekend and we are having a bonfire and stuff with the kiddies and her family (who are all really cool too) so I am really looking forward to this weekend, should be a great time, and I haven't been to a good old fashion bonfire in over a year (I LOVE CAMPFIRES!) YAY! ummmm....letsee... whatelse... My dad bought Lennon this ride-on Lightening McQueen Car thing that makes all sorts of noises and flashing lights and stuff and he LOVES it and so that has become the constant soundtrrack to my life the past couple days.... *sigh* at least its keeping him out of trouble I guess but goodloood I will be happy when the batterys die on that thing..... Just a word to anyone intending on getting Lennon something for his 2nd birthday coming in November... PLEASE PLEASE, NO MORE PLASTIC NOISEMAKING TOYS!!!!!!!!!!!!!!!! lol! But seriously... good old fashion wooden style toys.... metal toys (play pots and pans and such)... books.... clothes... etc..... I am planning his party as we speak so watch your mailboxes for invites, especially those of you with lil ones.... hmm yeah... thats all for now I guess, Thanks to everyone who's been anxiously awaiting my biopsy results with me and thanks for all the well wishes... I have so many awesome people in my life sometimes I can't believe my luck... You all rock argyle socks :)
MUCH MUCH LOVE TO YOU ALL!
Kalee and Lennon
Currently watching:
Meet the Robinsons
Release date: 2007-10-23
Monday, September 22, 2008
seven holes later
Current mood: uncomfortable
The biopsy is all done... They had a bit of a difficult time getting a good sample and had to punch about 7 holes in my kidney, it was a bit more pain and discomfort than I'd have liked but I survived and its all over now... I'm on perccsets for the pain... when they started to wear off I definetly started to feel like I was punched very hard in the back... especially when I breathe in deep. But with the Percs I feel okay... and actually pretty relaxed and loopy LOL :) I'm watching a pretty cool movie right now, just wanted to post quick and let everyone know everything went okay and I'm doing just fine... Thank you all for your prayers and best wishes!!!!! Now I just have to wait a week to find out the results of the biopsy and see what willbe done to fix my issues as quick as possible.... hopefully its best case senario and after a half dozen more weeks on steriods I'll be all better and can wean off them and go back to living a normal life with a normal sized head (lol, anyone who's seen me will get this right away ;)) anywho... I will post more later... this movie I'm watching is one of them there thought provoking ones so don't be surprised if I post one of THOSE philosophical ramblings I'm famous for within 24 hours or so... ;)
Have a nice night all,
MUCH LOVE
Kalee
Currently watching:
Waking Life (Widescreen)
Release date: 2003-04-15
The biopsy is all done... They had a bit of a difficult time getting a good sample and had to punch about 7 holes in my kidney, it was a bit more pain and discomfort than I'd have liked but I survived and its all over now... I'm on perccsets for the pain... when they started to wear off I definetly started to feel like I was punched very hard in the back... especially when I breathe in deep. But with the Percs I feel okay... and actually pretty relaxed and loopy LOL :) I'm watching a pretty cool movie right now, just wanted to post quick and let everyone know everything went okay and I'm doing just fine... Thank you all for your prayers and best wishes!!!!! Now I just have to wait a week to find out the results of the biopsy and see what willbe done to fix my issues as quick as possible.... hopefully its best case senario and after a half dozen more weeks on steriods I'll be all better and can wean off them and go back to living a normal life with a normal sized head (lol, anyone who's seen me will get this right away ;)) anywho... I will post more later... this movie I'm watching is one of them there thought provoking ones so don't be surprised if I post one of THOSE philosophical ramblings I'm famous for within 24 hours or so... ;)
Have a nice night all,
MUCH LOVE
Kalee
Currently watching:
Waking Life (Widescreen)
Release date: 2003-04-15
prayers
Current mood: scared
Hello friends,
I'm at the hospital right now, going in for my biopsy in about 15 minutes... I'm pretty nervous about it.... any extra prayers and positive thoughts are most appreciated right now... I will be sure and post letting everyone know once I'm out and if everything went smoothly.....
Love you all,
Kalee
Hello friends,
I'm at the hospital right now, going in for my biopsy in about 15 minutes... I'm pretty nervous about it.... any extra prayers and positive thoughts are most appreciated right now... I will be sure and post letting everyone know once I'm out and if everything went smoothly.....
Love you all,
Kalee
Tuesday, September 16, 2008
Monday
Current mood: bummed
Biopsy will be this coming Monday the 22nd instead.... :( damn... I was hoping to put it off for a few more weeks.... oh well.
Biopsy will be this coming Monday the 22nd instead.... :( damn... I was hoping to put it off for a few more weeks.... oh well.
change in plans
Current mood: hopeful
My biopsy is being rescheduled.... not sure when it will be now, possibly next week or the week after instead... My parents are going to be at a show this weekend and I didn't want to take the chance of any possible complications laying me up while I'm by myself for the weekend.... especially since I'm already having a hard enough time keeping up with Lennon these days.... soooo.... no biopsy at the moment, I'll keep you all updated when I find out when its going to be... I'm also kinda hoping that putting it off a couple more weeks it might end up being that I won't have to do it.... the protein issue continues to drop steadily by the week (9 grams at last count... down from 18 grams when I left the hospital a month ago...) so if in a couple more weeks it is still dropping maybe they won't even want to do it anymore.... we'll see.... anywho I'm off to my favorite grocery store (Trader Joe's :)) and then to my naturopath for my second dose of my homeopathic treatment... have a fine and fantastic day everyone :)
much love,
Kalee
My biopsy is being rescheduled.... not sure when it will be now, possibly next week or the week after instead... My parents are going to be at a show this weekend and I didn't want to take the chance of any possible complications laying me up while I'm by myself for the weekend.... especially since I'm already having a hard enough time keeping up with Lennon these days.... soooo.... no biopsy at the moment, I'll keep you all updated when I find out when its going to be... I'm also kinda hoping that putting it off a couple more weeks it might end up being that I won't have to do it.... the protein issue continues to drop steadily by the week (9 grams at last count... down from 18 grams when I left the hospital a month ago...) so if in a couple more weeks it is still dropping maybe they won't even want to do it anymore.... we'll see.... anywho I'm off to my favorite grocery store (Trader Joe's :)) and then to my naturopath for my second dose of my homeopathic treatment... have a fine and fantastic day everyone :)
much love,
Kalee
Sunday, September 14, 2008
biopsy...
My doctor scheduled me to have a biopsy since there is still too much protein spillage...... biopsy will be on Wednesday at 2:00... I'll have to stay in the hospital overnight since you have to stay flat on your back 12-24 hours afterwards to minimize bleeding... I was just looking up how the procedure is done and stuff.... sounds pleasant....
How It Is Done
A kidney biopsy is done by a urologist, nephrologist, or a radiologist in a clinic or a hospital. A kidney biopsy is often done by a radiologist using ultrasound, fluoroscopy, a CT scan, or magnetic resonance imaging (MRI) to help guide the biopsy needle.
You will need to take off all or most of your clothes. You will wear a gown. Before the biopsy, you may be given a sedative through an intravenous (IV) line in a vein in your arm. The sedative will help you relax and lie still during the biopsy.
You will be asked to lie facedown on an examination table. A sandbag, a firm pillow, or a rolled towel will be placed under your body to support your belly. It is very important that you follow your doctor's directions about breathing, holding your breath, and lying still while the biopsy is being done.
Your doctor will examine your back and may mark the biopsy site by making a slight dent in your skin with a pencil or tool. The biopsy may be done on either the right or the left kidney. The site will be cleaned with a special soap. Your doctor then gives you local anesthetic to numb the area where the biopsy needle will be inserted.
Your doctor puts the biopsy needle through the skin while looking at your kidney with ultrasound. You will be asked to hold your breath and stay very still while the needle is put into the kidney.
The needle is removed after the tissue sample is taken. Pressure is put on the biopsy site for several minutes to stop the bleeding. Then a bandage is put on the site. The biopsy takes 15 to 30 minutes.
After the biopsy, you will rest in bed for 6 to 24 hours. Your pulse, blood pressure, and temperature will be checked often after the biopsy.
If no problems develop, you can go home. To prevent bleeding at the biopsy site, lie flat on your back for the next 12 to 24 hours. You may eat your normal diet. Do not take aspirin or anti-inflammatory medicines for a week after the biopsy. You may do your regular activities, but do not do strenuous activities, such as heavy lifting, hard running, motorcycle riding, contact sports, or other activities that might jar or jolt your kidney, for 2 weeks after the biopsy. Also, drink more fluids so you will not be dehydrated.
How It Feels
You may feel a brief sting or pinch when the numbing medicine is put in. When the biopsy needle is put in, you may feel a sharp pain for a few seconds.
It is normal to feel some muscle soreness in the area of the biopsy for 2 to 3 days after the biopsy. You may have a small amount of bleeding on the bandage after the biopsy. Talk to your doctor about how much pain and bleeding you can expect. Many people will have bright red blood in their urine for the first 24 hours after the biopsy; this is expected.
anywho.... not looking forward to this but at this point I don't have too many options... the alternative is for them to up my steroids dosage for 12 weeks and I do NOT want to do that... I can't stand the side effects of the amount they already have me on nevermind MORE! The dieuretic they have me on seems to not be working so well as time passes too so I'm starting to retain more fluid again in my feet and face and ankles... Not the most comfortable thing, lemme tell yah.... I can't wait to be off all these meds... when that day comes, I will be a HAPPY HAPPY GIRL! so lets see what this biopsy says.... maybe it'll be good news and I can get off this shit SOON! thats all for now...
How It Is Done
A kidney biopsy is done by a urologist, nephrologist, or a radiologist in a clinic or a hospital. A kidney biopsy is often done by a radiologist using ultrasound, fluoroscopy, a CT scan, or magnetic resonance imaging (MRI) to help guide the biopsy needle.
You will need to take off all or most of your clothes. You will wear a gown. Before the biopsy, you may be given a sedative through an intravenous (IV) line in a vein in your arm. The sedative will help you relax and lie still during the biopsy.
You will be asked to lie facedown on an examination table. A sandbag, a firm pillow, or a rolled towel will be placed under your body to support your belly. It is very important that you follow your doctor's directions about breathing, holding your breath, and lying still while the biopsy is being done.
Your doctor will examine your back and may mark the biopsy site by making a slight dent in your skin with a pencil or tool. The biopsy may be done on either the right or the left kidney. The site will be cleaned with a special soap. Your doctor then gives you local anesthetic to numb the area where the biopsy needle will be inserted.
Your doctor puts the biopsy needle through the skin while looking at your kidney with ultrasound. You will be asked to hold your breath and stay very still while the needle is put into the kidney.
The needle is removed after the tissue sample is taken. Pressure is put on the biopsy site for several minutes to stop the bleeding. Then a bandage is put on the site. The biopsy takes 15 to 30 minutes.
After the biopsy, you will rest in bed for 6 to 24 hours. Your pulse, blood pressure, and temperature will be checked often after the biopsy.
If no problems develop, you can go home. To prevent bleeding at the biopsy site, lie flat on your back for the next 12 to 24 hours. You may eat your normal diet. Do not take aspirin or anti-inflammatory medicines for a week after the biopsy. You may do your regular activities, but do not do strenuous activities, such as heavy lifting, hard running, motorcycle riding, contact sports, or other activities that might jar or jolt your kidney, for 2 weeks after the biopsy. Also, drink more fluids so you will not be dehydrated.
How It Feels
You may feel a brief sting or pinch when the numbing medicine is put in. When the biopsy needle is put in, you may feel a sharp pain for a few seconds.
It is normal to feel some muscle soreness in the area of the biopsy for 2 to 3 days after the biopsy. You may have a small amount of bleeding on the bandage after the biopsy. Talk to your doctor about how much pain and bleeding you can expect. Many people will have bright red blood in their urine for the first 24 hours after the biopsy; this is expected.
anywho.... not looking forward to this but at this point I don't have too many options... the alternative is for them to up my steroids dosage for 12 weeks and I do NOT want to do that... I can't stand the side effects of the amount they already have me on nevermind MORE! The dieuretic they have me on seems to not be working so well as time passes too so I'm starting to retain more fluid again in my feet and face and ankles... Not the most comfortable thing, lemme tell yah.... I can't wait to be off all these meds... when that day comes, I will be a HAPPY HAPPY GIRL! so lets see what this biopsy says.... maybe it'll be good news and I can get off this shit SOON! thats all for now...
Friday, September 5, 2008
Still here :)
Current mood: nauseated
Hi everyone,
just another quick update... still going to water exercise classes... they are helping alot with getting my strength and endurance back.... I'm finding myself with a bit more energy these days and I can actually go up and down a flight of stairs now without being totally exhausted! I can pick up Lennon and put him in his carseat and all that good stuff too.... I went to my Kidney Doc earlier in the week... protein in the urine issue is still there... its still dropping, but again it is still freakishly high.... unless it drops pretty rapidlyover the next week or so they will most likely do the biopsy to see what the deal is..... Could be anindication of permanant damage to the filers of my kidneys.... A biopsy would also mean an overnight in the hospital.... The alternative to a biopsy would be a 12 WEEK course of HIGH DOSE steroids (prednisone) which I am already on in a pretty high dose and lemme tell you it is some miserable shit... The side effects of that are all sorts of nasty stuff, fluid retention, permanant bone loss, nausea, dizziness, a permanant nasty taste in your mouth all day.... hair growth in wierd places, and bad acne.... etc.... etc.... so I'm thinking the biopsy might be the way to go... at least then I would be able to know what condition my kidneys are in for sure and proceed from there....
LEts see.... I took myself off two of the anti-depressent drugs they had me on.... Trazadone and Clonapin..... I haven't gone nuts yet so I think i'm in the clear ;) I'm still on one, but I'm gonna attempt to wean off that one over the next week or so.....
Much of my bruising has faded now... and a lot of the swellling has gone down and I'm now starting to see the scars and damage that has been done to my body... some of it is pretty harsh, i'll say that... I'm really trying to not let it get me down.... its just skin right... anyways, I'm lucky to still have a living BODY so..... as hard as it is some days I'm just trying to stay positive about that and the helll with the less important things....
I have an appointment with a naturapath on Monday to see what she can do.... I was trying to self medicate homeopathically and have been trying to work on myself nutritionallly but for as much research as I've done on naturalhealthI still sort of feellike I'm shooting inthe dark... so Let's see what a professional can do... my insurance won't cover her and I'm pretty broke, but I'd spend everything I've got if it'll get me healthy and able to get back to living again.... I've got high hopes for the natural route so... we'lll see how it goes :) I also got back that nasty stomach bacteria C-Diff that I had in the hospital which has made for a lot of stomach cramping and painful sorts of fun this past week or so... so now I'm back on that hardcore antibiotic to try and get rid of it again.... after its gone this time I'm going to put myself on a special diet to make sure thatshit does NOT come back again...I am NOT going to go through what my grampa did fighting that thing for 8 friggin months!
Anywho.... aside from my health, other news... Lennon is going through a poopy-head phase right now.... he throws tantrums over ANYTHING and EVERYTHING... and has taken to banging his head into things to make himself cry harder to try to get attention... I haven't quite figured out how to deal with it yet... part of me wants to console him and kiss his bruised head, but thats what he's looking for and I don't want to encourage him... so far I'm trying to just ignore it and not give him the satisfaction of getting attention for acting crazy! I hope it works cause it is really hard to watch him doing that.... he also has been giving me a hard time not listening to me and ignoring me when I'm talking to him cause he has figured out that it takes me longer to get up and grab him, and that when I'm not feeling well I may not get up and chase him to sit him down..... so I'm trying to force myself to follow through on punishing him even if it means making myself get up and grab him in the midst of a bout of nausea to sit him down.... I wish I had more energy to play with him and take him outside and such... I'm sure that a lot of the problem is that he's got lots of energy that he hasn't gotten out most of the summer.... he spent most of the time since I got sick (JUNE) indoors watching the same dozen movies over and over.... It makes me ill to think about but there really wasn't and isn't many options in this circumstance... I try to get Addi to take him outside as much as possible, and I have a few times but I can't keep up with him at all and he has been listening so poorly, and if he were to run into the road or something.... *sigh*..... poor kid.... this summer must have sucked so much for him... to go from being outdoors everyday, riding around on our bike.... feeding the ducks and going on playgrounds.... to Mama disappearing overnight and being cooped upp in the livingroom in front of a TV suddenly... no wonder he's been acting out.... ANyways, again, I can't complain though, I know my mom and Addi had their hands full all summer and did what they could... I'll just have to work extra hard to make up for his past few months with Lennon once I'm back on my feet again....
hmmm..... I think thats about it for now... no real major revelations or soul baring admissions this week, lol... hope everyone has had a good week and if you are in new england hope you all enjoy the loverly tropical storm we are expecting this weekend! Be good,
Kalee
Currently watching:
The Princess Bride (20th Anniversary Widescreen Edition)
Release date: 2007-11-13
Hi everyone,
just another quick update... still going to water exercise classes... they are helping alot with getting my strength and endurance back.... I'm finding myself with a bit more energy these days and I can actually go up and down a flight of stairs now without being totally exhausted! I can pick up Lennon and put him in his carseat and all that good stuff too.... I went to my Kidney Doc earlier in the week... protein in the urine issue is still there... its still dropping, but again it is still freakishly high.... unless it drops pretty rapidlyover the next week or so they will most likely do the biopsy to see what the deal is..... Could be anindication of permanant damage to the filers of my kidneys.... A biopsy would also mean an overnight in the hospital.... The alternative to a biopsy would be a 12 WEEK course of HIGH DOSE steroids (prednisone) which I am already on in a pretty high dose and lemme tell you it is some miserable shit... The side effects of that are all sorts of nasty stuff, fluid retention, permanant bone loss, nausea, dizziness, a permanant nasty taste in your mouth all day.... hair growth in wierd places, and bad acne.... etc.... etc.... so I'm thinking the biopsy might be the way to go... at least then I would be able to know what condition my kidneys are in for sure and proceed from there....
LEts see.... I took myself off two of the anti-depressent drugs they had me on.... Trazadone and Clonapin..... I haven't gone nuts yet so I think i'm in the clear ;) I'm still on one, but I'm gonna attempt to wean off that one over the next week or so.....
Much of my bruising has faded now... and a lot of the swellling has gone down and I'm now starting to see the scars and damage that has been done to my body... some of it is pretty harsh, i'll say that... I'm really trying to not let it get me down.... its just skin right... anyways, I'm lucky to still have a living BODY so..... as hard as it is some days I'm just trying to stay positive about that and the helll with the less important things....
I have an appointment with a naturapath on Monday to see what she can do.... I was trying to self medicate homeopathically and have been trying to work on myself nutritionallly but for as much research as I've done on naturalhealthI still sort of feellike I'm shooting inthe dark... so Let's see what a professional can do... my insurance won't cover her and I'm pretty broke, but I'd spend everything I've got if it'll get me healthy and able to get back to living again.... I've got high hopes for the natural route so... we'lll see how it goes :) I also got back that nasty stomach bacteria C-Diff that I had in the hospital which has made for a lot of stomach cramping and painful sorts of fun this past week or so... so now I'm back on that hardcore antibiotic to try and get rid of it again.... after its gone this time I'm going to put myself on a special diet to make sure thatshit does NOT come back again...I am NOT going to go through what my grampa did fighting that thing for 8 friggin months!
Anywho.... aside from my health, other news... Lennon is going through a poopy-head phase right now.... he throws tantrums over ANYTHING and EVERYTHING... and has taken to banging his head into things to make himself cry harder to try to get attention... I haven't quite figured out how to deal with it yet... part of me wants to console him and kiss his bruised head, but thats what he's looking for and I don't want to encourage him... so far I'm trying to just ignore it and not give him the satisfaction of getting attention for acting crazy! I hope it works cause it is really hard to watch him doing that.... he also has been giving me a hard time not listening to me and ignoring me when I'm talking to him cause he has figured out that it takes me longer to get up and grab him, and that when I'm not feeling well I may not get up and chase him to sit him down..... so I'm trying to force myself to follow through on punishing him even if it means making myself get up and grab him in the midst of a bout of nausea to sit him down.... I wish I had more energy to play with him and take him outside and such... I'm sure that a lot of the problem is that he's got lots of energy that he hasn't gotten out most of the summer.... he spent most of the time since I got sick (JUNE) indoors watching the same dozen movies over and over.... It makes me ill to think about but there really wasn't and isn't many options in this circumstance... I try to get Addi to take him outside as much as possible, and I have a few times but I can't keep up with him at all and he has been listening so poorly, and if he were to run into the road or something.... *sigh*..... poor kid.... this summer must have sucked so much for him... to go from being outdoors everyday, riding around on our bike.... feeding the ducks and going on playgrounds.... to Mama disappearing overnight and being cooped upp in the livingroom in front of a TV suddenly... no wonder he's been acting out.... ANyways, again, I can't complain though, I know my mom and Addi had their hands full all summer and did what they could... I'll just have to work extra hard to make up for his past few months with Lennon once I'm back on my feet again....
hmmm..... I think thats about it for now... no real major revelations or soul baring admissions this week, lol... hope everyone has had a good week and if you are in new england hope you all enjoy the loverly tropical storm we are expecting this weekend! Be good,
Kalee
Currently watching:
The Princess Bride (20th Anniversary Widescreen Edition)
Release date: 2007-11-13
Tuesday, August 26, 2008
IDENTITY
Current mood: confused
I spent a lot of time talking to my mama today.... about all the things and thoughts that have been left in the wake of this insane summer.... There is this deeply ingrained aspect of my personality that needs to have things organized within my head... I need to know where things stand... put thoughts and memories in tidy places where they belong.... always have been like that... I need to do it so I can UNDERSTAND WHY.... HOW... WHOO or what.... and one of the things that bothers me most about this illness I am caught by is that there is so much that is UNKNOWN.... I have entire days.... weeks, where I have virtually no memories.... no idea where I was, who I was... even WHAT I was.... I had people coming up to me in the hospital (nurses and such) saying ''I'm so glad to see you looking so much better' that I would have swore I never saw in my life.... I have fuzzy images of things here and there but they seem more like hallucinations and dreams than anything... my mom keeps telling me as much as she knows and can recall, and I hear these scenarios and they seem vaguly familiar, as if they COULD have happened... I can kind of picture them... almost put my finger on it, but its not SOLID.... it is a very unnerving feeling.... I can even remember talking to my mom on the phone, and the last thing she said to me right before I went into a seizure.... it freaks the hell out of me to remember that... being there one minute joking about some random thing.....and the next you are just in darkness..... waking up to random faces speaking languages you don't understand.... confusion, rage.... fear.... on a two week long bad trip that you can't escape or even come close to comprehending...... all in a split second, with no prior indication that it was about to happen..... it terrifies me.... it wakes me at night..... it is a constant thought in the back of my mind that it could happen again at anytime.... Drs have said not to worry, that it wont... but how do they KNOW?
I'm starting to feel like I'm in the midst of an identity crisis or something..... I've spent the better part of the last decade of my life trying to educate myself on nature... on my body... on taking care of myself, and the world around me.... and even though we all KNOW in theory that life is fragile... there are no guarentees, etc, etc.... there is always that part of us that believes we are immortal.... that bad things happen to OTHER people, not us.... somehow I thought that if I was doing everything RIGHT that I would NEVER be one of those unhealthy people.... suffering from some dreaded chronic disease.... hospitalization.... haveing to pop 20 to 30 different pills in a day to keep my body from shutting down.... I didn't take anything lightly.... food, health in general.... living a chemical free as possible existance... researching the crap out of everything and anything.... I rarely make decisions regarding mine or lennon's health without SERIOUSLY looking at ALL options and opinions..... and somehow, for all I tried... for all my efforts, its FAILED ME...... misereably.... I don't understand it... I don't get it... I see so many people around me take everything lightly.... go with the crowd... everyone else is doing it and such.... and their lives NEVER seem to be hit with the turmoil that mine does over and over again.... I DON'T UNDERSTAND.
SO I sit here.... I think about this shit over and over, trying to make some sense.... Did I do something wrong? Where was it, when? Am I rocking the boat too much.... should I stop fighting against the status quo??? PArt of me just feels like throwing my hands up in the air and screaming out to the world I have embraced for so long 'FUCK YOU! FUCK IT ALL! WHO GIVES A SHIT ABOUT CHEMICALS? THE ENVIRONMENT? THE GOVERNMENT?!! We're all going to DIE anyways, one way or another.... and no matter WHAT YOU DO it could happen with the next breath you take...' and another part of me wants to CRY like a little baby and stay sick forever so people will take care of me cause maybe I just can't handle life.... and another part of me wants to say, FUCK BEING SICK! I've been researching this shit for years... I'm going put my money where my mouth has been for years and I am going to find out how the fuck I can HEAL myself of this shit and I am going to get better and pursue that life that I want...... and yet another part of me is scared shitless...... death lurks everywhere now.... it could be on the grapes I just ate.... It could be that SUV speeding up behind us..... It could be a blood test result came in too late and my kidney's fail..... it could be that I try some natural remedy and it makes a bad situation worse.... or I could stay on the drugs and conventional treatments and get worse.... I feel so HELPLESS and out of control in all this.... it is bad to feel so undecided about who, and what to trust... but it is the worst feeling in the world to feel like you can not even trusts your self.... not your memories... your thoughts.... your body.... or your opinions and views on a world you THOUGHT you had some sort of understanding of.....
Yeah... I guess you could say this is a bit of a crisis.... we shall see in time I guess how it all turns out..........................
I spent a lot of time talking to my mama today.... about all the things and thoughts that have been left in the wake of this insane summer.... There is this deeply ingrained aspect of my personality that needs to have things organized within my head... I need to know where things stand... put thoughts and memories in tidy places where they belong.... always have been like that... I need to do it so I can UNDERSTAND WHY.... HOW... WHOO or what.... and one of the things that bothers me most about this illness I am caught by is that there is so much that is UNKNOWN.... I have entire days.... weeks, where I have virtually no memories.... no idea where I was, who I was... even WHAT I was.... I had people coming up to me in the hospital (nurses and such) saying ''I'm so glad to see you looking so much better' that I would have swore I never saw in my life.... I have fuzzy images of things here and there but they seem more like hallucinations and dreams than anything... my mom keeps telling me as much as she knows and can recall, and I hear these scenarios and they seem vaguly familiar, as if they COULD have happened... I can kind of picture them... almost put my finger on it, but its not SOLID.... it is a very unnerving feeling.... I can even remember talking to my mom on the phone, and the last thing she said to me right before I went into a seizure.... it freaks the hell out of me to remember that... being there one minute joking about some random thing.....and the next you are just in darkness..... waking up to random faces speaking languages you don't understand.... confusion, rage.... fear.... on a two week long bad trip that you can't escape or even come close to comprehending...... all in a split second, with no prior indication that it was about to happen..... it terrifies me.... it wakes me at night..... it is a constant thought in the back of my mind that it could happen again at anytime.... Drs have said not to worry, that it wont... but how do they KNOW?
I'm starting to feel like I'm in the midst of an identity crisis or something..... I've spent the better part of the last decade of my life trying to educate myself on nature... on my body... on taking care of myself, and the world around me.... and even though we all KNOW in theory that life is fragile... there are no guarentees, etc, etc.... there is always that part of us that believes we are immortal.... that bad things happen to OTHER people, not us.... somehow I thought that if I was doing everything RIGHT that I would NEVER be one of those unhealthy people.... suffering from some dreaded chronic disease.... hospitalization.... haveing to pop 20 to 30 different pills in a day to keep my body from shutting down.... I didn't take anything lightly.... food, health in general.... living a chemical free as possible existance... researching the crap out of everything and anything.... I rarely make decisions regarding mine or lennon's health without SERIOUSLY looking at ALL options and opinions..... and somehow, for all I tried... for all my efforts, its FAILED ME...... misereably.... I don't understand it... I don't get it... I see so many people around me take everything lightly.... go with the crowd... everyone else is doing it and such.... and their lives NEVER seem to be hit with the turmoil that mine does over and over again.... I DON'T UNDERSTAND.
SO I sit here.... I think about this shit over and over, trying to make some sense.... Did I do something wrong? Where was it, when? Am I rocking the boat too much.... should I stop fighting against the status quo??? PArt of me just feels like throwing my hands up in the air and screaming out to the world I have embraced for so long 'FUCK YOU! FUCK IT ALL! WHO GIVES A SHIT ABOUT CHEMICALS? THE ENVIRONMENT? THE GOVERNMENT?!! We're all going to DIE anyways, one way or another.... and no matter WHAT YOU DO it could happen with the next breath you take...' and another part of me wants to CRY like a little baby and stay sick forever so people will take care of me cause maybe I just can't handle life.... and another part of me wants to say, FUCK BEING SICK! I've been researching this shit for years... I'm going put my money where my mouth has been for years and I am going to find out how the fuck I can HEAL myself of this shit and I am going to get better and pursue that life that I want...... and yet another part of me is scared shitless...... death lurks everywhere now.... it could be on the grapes I just ate.... It could be that SUV speeding up behind us..... It could be a blood test result came in too late and my kidney's fail..... it could be that I try some natural remedy and it makes a bad situation worse.... or I could stay on the drugs and conventional treatments and get worse.... I feel so HELPLESS and out of control in all this.... it is bad to feel so undecided about who, and what to trust... but it is the worst feeling in the world to feel like you can not even trusts your self.... not your memories... your thoughts.... your body.... or your opinions and views on a world you THOUGHT you had some sort of understanding of.....
Yeah... I guess you could say this is a bit of a crisis.... we shall see in time I guess how it all turns out..........................
Thursday, August 21, 2008
PEACE OF MIND
Current mood: calm
Hello friends,
SO I just got back from my first follow up with Dr. Post who is my Nephrologist (kidney doc) and I must say an AWESOME doctor at that.... All good news! He is becoming the only one of all the other Kidney docs I've been seeing that I feel like I can trust and who KNOWS what is going on, and tells it like it is... I asked him today If I can just deal with him from now on (unless of course its an emergency and he is off) and he agreed, so I'm really happy about that. I was dealing with about 6 different doctors this week and all but one were totally and completely unfamiliar with my case and telling me all sorts of conflicting things.... two kept telling me things weren't looking good and giveing me test results that god knows where they got the "bad" numbers.... I feel like I've been in a PANIC of PANICS all week and according to the one Dr. I trust completely with my life it was pretty much all for nothing. The aspect of my illness that could land me back in the hospital with more blood and plasma treatments would be the "blood disorder" half, and according to Dr. Post all of my test numbers are holding steady or improving, so that is looking GOOD. The other half is the "kidney disease" portion and in some ways I doing well there too.... Dr. says right now we are focusing on that portion and just monitoring the blood portion to make sure it stays steady or keeps improving.... On the kidney homefront, I am still retaining fluid like crazy so I am on a VERY sodium restricted diet, and I have to find myself a pool to go in for at least an hour a day (I know it sounds weird but its called "submerssion therapy" and this dr. swears it works even better than the dieuretics I'm on most of the time), He also really wants to do a biopsy but I am still bruising very easily and then they don't go away so he is concerned about the dangers of bleeding still.... Anyways, all in all it was a great visit and gave me the first peace of mind and relief from worrying about ending up backin the hospital that I've had since last thursday when I was discharged..... YAY!
oh yeah, and this Dr. just might be the coolest MD I've ever met, lol... Today he says to me something to the effect of " You are a very unique patient and I respect very much that before all this happened you were a health conscious person, eating organic and healthy food, taking good care of yourself.... Not that ANYONE deserves this but YOU of all people DEFINITLY didn't deserve this"... I thought that was really nice of him to say.... he also said that my case is the strangest case he's ever seen.... out of a disease that is 1 in 100,000 mine has been so unpredictable and weird that it is another 1 out of 100,000 of that original 1 out of 100,000..... so I asked him if he thinks I should go buy a lottery ticket, lol.....
ANyways, in other areas of life things are going pretty good... I'm starting to get over this cold and stomach bug I've had since sunday... Lennon is back to being completely in LOVE with his Mama.... I discovered a couple days ago that I am STILL LACTATING with is totally bizzare and in my opinion a complete MIRACLE.... I am on so many meds right now I don't dare try and actually breastfeed him but I think I may start trying to pump and dump and once I am off the meds I will offer it to him and see if he is interested in another go.... then maybe we can someday have the gentle and loving end to our nursing relationship that I had hoped for.... I am also feeling stronger every day... I can climb stairs without having to pull myself up on the hand rails, and I can get back up from a squatting position which I couldn't do without TWO people pulling me up just a week ago! I can also carry Lennon short distances now too! So..... things are looking positive as of this afternoon.... I'm not getting too excited cause I'm still straddling a very precarious fence and there is still something VERY not right with my kidneys BUT I am staying hopeful and trying to focus on the small victories..... one day at a time I am going to kick this thing's ASS. Thank you all for all your thoughts and prayers, they are working wonders so far! I haven't really been up for visitors all this week with my cold and stomach issues on top of just the general effects of the HUS/TTP.... we shall see what next week brings, I will be sure and keep you all updated on here.... I LOVE YOU ALL!
Kalee and Lennon
Currently watching:
Monsters, Inc. (Widescreen) (2 Discs)
Release date: 2002-09-17
Hello friends,
SO I just got back from my first follow up with Dr. Post who is my Nephrologist (kidney doc) and I must say an AWESOME doctor at that.... All good news! He is becoming the only one of all the other Kidney docs I've been seeing that I feel like I can trust and who KNOWS what is going on, and tells it like it is... I asked him today If I can just deal with him from now on (unless of course its an emergency and he is off) and he agreed, so I'm really happy about that. I was dealing with about 6 different doctors this week and all but one were totally and completely unfamiliar with my case and telling me all sorts of conflicting things.... two kept telling me things weren't looking good and giveing me test results that god knows where they got the "bad" numbers.... I feel like I've been in a PANIC of PANICS all week and according to the one Dr. I trust completely with my life it was pretty much all for nothing. The aspect of my illness that could land me back in the hospital with more blood and plasma treatments would be the "blood disorder" half, and according to Dr. Post all of my test numbers are holding steady or improving, so that is looking GOOD. The other half is the "kidney disease" portion and in some ways I doing well there too.... Dr. says right now we are focusing on that portion and just monitoring the blood portion to make sure it stays steady or keeps improving.... On the kidney homefront, I am still retaining fluid like crazy so I am on a VERY sodium restricted diet, and I have to find myself a pool to go in for at least an hour a day (I know it sounds weird but its called "submerssion therapy" and this dr. swears it works even better than the dieuretics I'm on most of the time), He also really wants to do a biopsy but I am still bruising very easily and then they don't go away so he is concerned about the dangers of bleeding still.... Anyways, all in all it was a great visit and gave me the first peace of mind and relief from worrying about ending up backin the hospital that I've had since last thursday when I was discharged..... YAY!
oh yeah, and this Dr. just might be the coolest MD I've ever met, lol... Today he says to me something to the effect of " You are a very unique patient and I respect very much that before all this happened you were a health conscious person, eating organic and healthy food, taking good care of yourself.... Not that ANYONE deserves this but YOU of all people DEFINITLY didn't deserve this"... I thought that was really nice of him to say.... he also said that my case is the strangest case he's ever seen.... out of a disease that is 1 in 100,000 mine has been so unpredictable and weird that it is another 1 out of 100,000 of that original 1 out of 100,000..... so I asked him if he thinks I should go buy a lottery ticket, lol.....
ANyways, in other areas of life things are going pretty good... I'm starting to get over this cold and stomach bug I've had since sunday... Lennon is back to being completely in LOVE with his Mama.... I discovered a couple days ago that I am STILL LACTATING with is totally bizzare and in my opinion a complete MIRACLE.... I am on so many meds right now I don't dare try and actually breastfeed him but I think I may start trying to pump and dump and once I am off the meds I will offer it to him and see if he is interested in another go.... then maybe we can someday have the gentle and loving end to our nursing relationship that I had hoped for.... I am also feeling stronger every day... I can climb stairs without having to pull myself up on the hand rails, and I can get back up from a squatting position which I couldn't do without TWO people pulling me up just a week ago! I can also carry Lennon short distances now too! So..... things are looking positive as of this afternoon.... I'm not getting too excited cause I'm still straddling a very precarious fence and there is still something VERY not right with my kidneys BUT I am staying hopeful and trying to focus on the small victories..... one day at a time I am going to kick this thing's ASS. Thank you all for all your thoughts and prayers, they are working wonders so far! I haven't really been up for visitors all this week with my cold and stomach issues on top of just the general effects of the HUS/TTP.... we shall see what next week brings, I will be sure and keep you all updated on here.... I LOVE YOU ALL!
Kalee and Lennon
Currently watching:
Monsters, Inc. (Widescreen) (2 Discs)
Release date: 2002-09-17
Wednesday, August 20, 2008
This black cloud
Current mood: tested
I feel sick to my sstomach right now.... and am fighting off a full on panic attack, awaiting blood results my Dr. ordered "STAT" today.... they should be back already and haven't heard anything yet.... depending upon what they see Dr. said I may end up back in hospital tonight..... I'm so sick of this dark cloud looming overhead... every other day they tell me it might rain, and I never know if its really going to, or if its gonna pass over again.... I keep having to look at Lennon as if it is the last time I may see him for awhile.... and every night I sleep in my bed I wonder if I will be so lucky the next night... I'm sick of being sick... I just want someone to tell me that this will all come to an end at some point and I will be okay.... I just want someone to be able to tell be that I will live to see my baby grow up... but I will just keep hoping and praying and fighting cause thats all I can do I guess....
Currently watching:
Pixar Short Films Collection, Vol. 1
Release date: 2007-11-06
I feel sick to my sstomach right now.... and am fighting off a full on panic attack, awaiting blood results my Dr. ordered "STAT" today.... they should be back already and haven't heard anything yet.... depending upon what they see Dr. said I may end up back in hospital tonight..... I'm so sick of this dark cloud looming overhead... every other day they tell me it might rain, and I never know if its really going to, or if its gonna pass over again.... I keep having to look at Lennon as if it is the last time I may see him for awhile.... and every night I sleep in my bed I wonder if I will be so lucky the next night... I'm sick of being sick... I just want someone to tell me that this will all come to an end at some point and I will be okay.... I just want someone to be able to tell be that I will live to see my baby grow up... but I will just keep hoping and praying and fighting cause thats all I can do I guess....
Currently watching:
Pixar Short Films Collection, Vol. 1
Release date: 2007-11-06
Tuesday, August 19, 2008
FUCK.
Current mood: anxious
Saw Dr. today and got some blood tests... waiting to hear back today or tommorrow but Dr. said I might have to be readmitted................................... here I am praying and crossing my fingers....
Saw Dr. today and got some blood tests... waiting to hear back today or tommorrow but Dr. said I might have to be readmitted................................... here I am praying and crossing my fingers....
Monday, August 18, 2008
FUTURE...
Current mood:HONEST
Category: Life
This is what I see.... have realized from this experience I have recently lived through to tell......
THIS is what I want...
A little old farm house.... not too tiny but comfortably cozy, maybe a little shabby and saggy, but well loved and taken care of.... with walls of our own that I can take as much paint and brushes to as my heart needs.... with a big ole overgrown jungly garden leading to the front door... flowers, and big leafy bushy plants and flowery leafy trees and shrubbery....
I want Lennon and perhaps a lil more young'uns to run in a big big space of land... trees to climb, fruits and veggies to pic.... I want to school them as best we can in the ways of the world, or nature, and of life.... as partners... equals.... friends....
I want a BIG BIG garden... fruits and veggies galor.... more than enough to eat, share...maybe even sell.....
I want to spend several months of the year just traveling around in an earthlovin vehicle, selling my parents (and at that point OURs too) Jewelry at fairs and fests around the country.... maybe further.
I want to go to nursing school and in off months nurse on my own terms, my own hours, part time....
I want my partner to do whatever his heart desires to do in off months to keep bringing in enough to help us live as well.... but also to feel free enough to enjoy life and all his passions... cause I'll be doing the same....
I want to play my music, write my thoughts, paint my mind on anything and everything... make things from trash... learn all sorts of things... dance, sing, and smile as often as possible.
I want to stay in new england.... likely CT, possibly RI, VT, or MA.... but still close enough that my family is NO MORE than an hour away TOPS......
I've realized a few other things... I'm not as "close" to some of my family as I'd like... but I LOVE them more than anything, and I KNOW that they feel the same.... and the few intimate conversations that I HAVE HAD with each and eevery one of them at one point of another in the recent year or two leads me to believe that the potential for great friendships.. REAL FRIENDSHIPS are there.... and I'm not will to give up on that.... just as they were not willing to give up on me during recent events.....
Thus, why I will be staying close by wherever they all may be congregated.... its not my zip code that matters in the slightest.... and I may live in the heart of a beast of a state in the epicenter of what is rapidly becoming a beast of a country... but 90% of the people Lennon and I love in this world and vice versa are here.... and so will I be.
I have realized that I can KNOW and keep up to date on what is happening in this world around me.... and I can CHOOSE every day of my life to NOT participate as MUCH as possible, but that paranoia and a complete refusal to LIVE lest you somehow support an evil system you don't agree with is futile... it accomplishes nothing more than putting one in a constant state of FEAR and produces an inability to live any sort of meaningful existance.... YES the system SUCKS... yes it is run by terrible evil people.... yes corporations suck.... and politicians don't give a shit about any of us..... yes the world may end tommorrow... the government may start busting down doors and hauling off the trouble makersor "terrorists".... and yes they are trying to make slaves of us ALL...... and I can CHOOSE to think what I want and do what I want about that... I choose to find some niches where I can still BUILD a future for my family and I.... be prepared mentally and physically for any shit that may go down... live as close to nature as I can without becoming Grizzly Adam's wife... refuse to shop at big businesses as much as possible... and all the other numerous things that are within MY ABILITY to do to existiin this fucked up world without losing my sanity... There's this cheesy ass country song I heard once and the chorus has been stuck in my head since the night before I suffered a massive seizure that almost claimed my life... I have no idea what any of the rest of the words are but the chorus goes like this:
You CAN spend your whole life buildin'
Something from nothin
One storm can come and blow it all away
BUILD IT ANYWAYS
thats what I intend to do with my second chance I have been given....
I have realized that my purpose in life was NEVER to be a corporate "yes man"... a coffee slinger... a telephone answerer or any other MEANINGLESS existance.... and on the same token I do not believe it is to be anyone who's name will ever be mentioned in ANY history book... not a famous world shaking anything.... I am not a gandhi, a john lennon, or an MLK..... but I will CHANGE the world through small acts of kindness and compassion.... because someone has to, and because the small things are going to be what changes the world... not a glorified leader.... the little people who do little things every day, like let someone out into traffic, or tell a scared sick person with demetia for the 20th time with love and patience in their voice where there are, or wipe someone elses ass because they can't do it for themselves.... or spend their days nursing sick children even though half of them won't survive and the pain of that loss will have to be felt over and over by said nurse...someone has to do these things... these are the acts in life that have MEANING.... that will make the world just a little better place for our babies to grow in....
The last thing I've realized... there is someone I LOVE with all my heart that is not near me.... he knows who he is. someone I have felt this unexplainable bond with since we were kids... someone I have always pictured as a piece of my soul and vice versa.... someone who once said the most amazing thing I had or have ever heard in my life... "I want to climb inside you so you'll never be lonely" (you already ARE...) ... And I want something from this person that I know could be considered so selfish.... I know that there are factors already concieved in other worlds that have come into play.... and I know what I ask... and the compromises which would need to be made.... and I wish I could be the one to make a great sacrifce... but I've tried planning it so many times and I CAN'T... for reasons stated... and I remember when you asked me what I thought you should do 2 years ago...and I said nothing though I wanted to SCREAM for you to STAY... just stay here... that you could be mate and daddy right here.... not step... daddy. I remember a campfire and a walk when I wished it was you I was sitting besides.... I remember crying so many nights when I have wished it was you sleeping besides me and I remember all the times we tried and the timing was never right... and I try not to live in the past... and I've tried moving on to others... many times.... but its ALWAYS been YOU.
and so I ask of you the one last thing I want out of this life... with every trial and trouble and sacrifice that may come of it... I ask for one last chance.... another TRY at standing besides you as the other half to "OUR"... as mates, friends, and partners with all the honesty, OPENNESS, faith hope, love, integrity, equality, RESPECT, and strength that comes from having a REAL TRUE human relationship, the kind you an I have had for years with each other, and never with another... and if this cannot or will not be the case I ask for nothing more than such an answer... and I will ask my heart to let me move on from this constant ache for you that I carry with me everyday....
this is what I want. What do you want?
Currently reading:
The Poisonwood Bible
By Barbara Kingsolver
Category: Life
This is what I see.... have realized from this experience I have recently lived through to tell......
THIS is what I want...
A little old farm house.... not too tiny but comfortably cozy, maybe a little shabby and saggy, but well loved and taken care of.... with walls of our own that I can take as much paint and brushes to as my heart needs.... with a big ole overgrown jungly garden leading to the front door... flowers, and big leafy bushy plants and flowery leafy trees and shrubbery....
I want Lennon and perhaps a lil more young'uns to run in a big big space of land... trees to climb, fruits and veggies to pic.... I want to school them as best we can in the ways of the world, or nature, and of life.... as partners... equals.... friends....
I want a BIG BIG garden... fruits and veggies galor.... more than enough to eat, share...maybe even sell.....
I want to spend several months of the year just traveling around in an earthlovin vehicle, selling my parents (and at that point OURs too) Jewelry at fairs and fests around the country.... maybe further.
I want to go to nursing school and in off months nurse on my own terms, my own hours, part time....
I want my partner to do whatever his heart desires to do in off months to keep bringing in enough to help us live as well.... but also to feel free enough to enjoy life and all his passions... cause I'll be doing the same....
I want to play my music, write my thoughts, paint my mind on anything and everything... make things from trash... learn all sorts of things... dance, sing, and smile as often as possible.
I want to stay in new england.... likely CT, possibly RI, VT, or MA.... but still close enough that my family is NO MORE than an hour away TOPS......
I've realized a few other things... I'm not as "close" to some of my family as I'd like... but I LOVE them more than anything, and I KNOW that they feel the same.... and the few intimate conversations that I HAVE HAD with each and eevery one of them at one point of another in the recent year or two leads me to believe that the potential for great friendships.. REAL FRIENDSHIPS are there.... and I'm not will to give up on that.... just as they were not willing to give up on me during recent events.....
Thus, why I will be staying close by wherever they all may be congregated.... its not my zip code that matters in the slightest.... and I may live in the heart of a beast of a state in the epicenter of what is rapidly becoming a beast of a country... but 90% of the people Lennon and I love in this world and vice versa are here.... and so will I be.
I have realized that I can KNOW and keep up to date on what is happening in this world around me.... and I can CHOOSE every day of my life to NOT participate as MUCH as possible, but that paranoia and a complete refusal to LIVE lest you somehow support an evil system you don't agree with is futile... it accomplishes nothing more than putting one in a constant state of FEAR and produces an inability to live any sort of meaningful existance.... YES the system SUCKS... yes it is run by terrible evil people.... yes corporations suck.... and politicians don't give a shit about any of us..... yes the world may end tommorrow... the government may start busting down doors and hauling off the trouble makersor "terrorists".... and yes they are trying to make slaves of us ALL...... and I can CHOOSE to think what I want and do what I want about that... I choose to find some niches where I can still BUILD a future for my family and I.... be prepared mentally and physically for any shit that may go down... live as close to nature as I can without becoming Grizzly Adam's wife... refuse to shop at big businesses as much as possible... and all the other numerous things that are within MY ABILITY to do to existiin this fucked up world without losing my sanity... There's this cheesy ass country song I heard once and the chorus has been stuck in my head since the night before I suffered a massive seizure that almost claimed my life... I have no idea what any of the rest of the words are but the chorus goes like this:
You CAN spend your whole life buildin'
Something from nothin
One storm can come and blow it all away
BUILD IT ANYWAYS
thats what I intend to do with my second chance I have been given....
I have realized that my purpose in life was NEVER to be a corporate "yes man"... a coffee slinger... a telephone answerer or any other MEANINGLESS existance.... and on the same token I do not believe it is to be anyone who's name will ever be mentioned in ANY history book... not a famous world shaking anything.... I am not a gandhi, a john lennon, or an MLK..... but I will CHANGE the world through small acts of kindness and compassion.... because someone has to, and because the small things are going to be what changes the world... not a glorified leader.... the little people who do little things every day, like let someone out into traffic, or tell a scared sick person with demetia for the 20th time with love and patience in their voice where there are, or wipe someone elses ass because they can't do it for themselves.... or spend their days nursing sick children even though half of them won't survive and the pain of that loss will have to be felt over and over by said nurse...someone has to do these things... these are the acts in life that have MEANING.... that will make the world just a little better place for our babies to grow in....
The last thing I've realized... there is someone I LOVE with all my heart that is not near me.... he knows who he is. someone I have felt this unexplainable bond with since we were kids... someone I have always pictured as a piece of my soul and vice versa.... someone who once said the most amazing thing I had or have ever heard in my life... "I want to climb inside you so you'll never be lonely" (you already ARE...) ... And I want something from this person that I know could be considered so selfish.... I know that there are factors already concieved in other worlds that have come into play.... and I know what I ask... and the compromises which would need to be made.... and I wish I could be the one to make a great sacrifce... but I've tried planning it so many times and I CAN'T... for reasons stated... and I remember when you asked me what I thought you should do 2 years ago...and I said nothing though I wanted to SCREAM for you to STAY... just stay here... that you could be mate and daddy right here.... not step... daddy. I remember a campfire and a walk when I wished it was you I was sitting besides.... I remember crying so many nights when I have wished it was you sleeping besides me and I remember all the times we tried and the timing was never right... and I try not to live in the past... and I've tried moving on to others... many times.... but its ALWAYS been YOU.
and so I ask of you the one last thing I want out of this life... with every trial and trouble and sacrifice that may come of it... I ask for one last chance.... another TRY at standing besides you as the other half to "OUR"... as mates, friends, and partners with all the honesty, OPENNESS, faith hope, love, integrity, equality, RESPECT, and strength that comes from having a REAL TRUE human relationship, the kind you an I have had for years with each other, and never with another... and if this cannot or will not be the case I ask for nothing more than such an answer... and I will ask my heart to let me move on from this constant ache for you that I carry with me everyday....
this is what I want. What do you want?
Currently reading:
The Poisonwood Bible
By Barbara Kingsolver
Sunday, August 17, 2008
Pictures, Life, and nightmares
Current mood: drained
Category: Life
howdy,
lots and lots of new pictures up... some of friends and family but mostly from the hospital and some things I've made recently as well.... A few of the hospitaal ones may not be appropriate for those with weak stomachs, YOU HAVE BEEN WARNED...
Anywho, things being home are going alright.... Lennon is warming back up to me and is doing good.... I am weaning myself off of the 4 anti-depressent anti anxiety type medications they have had me on THIS WEEK with is tough but in my mind is necessary to retain a very necesarry piece of myself....
I have lots of drs apptments and blood tests this week and next.... might have to get a kidney biopsy next week as well.... I'm starting to look into pursuing some sort of legal action against the farm and possibly whole foods.... I never thought I'd be a person to sue, but this whole thing has taken so much from my family and I that I can NEVER recover..... and has left so many scars inside and out that will never disappear..... My family at the very least deserves to be compensated in some small way (trust me NO amount of money will make up for this hell we've all been and are still going through but....)
Besides all that I've just been spending time with Lennon, on the computer researching this disease, and trying to sort through the massive and confusing mix of feelings, loss, images, memories, thoughts, nightmares, and everything else connected to this disaster that has become my life.... and trying not to let it break me down into a cowering child.... In the hospital I was having all sorts of bizarre nightmare/hallucinations of crazy shit like all of the muscles and skin shredding off my bones, and I couldn't top ripping and tearing it off, and it wouldn't stop until I'd call out for my dad or a nurse or someone..... it was all so reall and vivid.... I'm kind of freaked out that once I go off these anti-crazy pills they've got me on it might start again but I hate feeling drugged and sedated..... I'm not a "give me a pill" person.... I'm a "let me work through this shit in my head myself and on paper" kind of person so...... we'll see how this all goes i guess......
Thats all for now, going to visit my grandparents today for a delicious "welcome home" lunch/dinner... should be a nice time to be had.... I am thinking of a few of you all my friends... would love to hear from/see you... you know who you are... much Love...
until another moment,
Kalee
Currently listening:
Mad World Pt.1
By Michael (Ft Gary Jules) Andrews
Release date: 2003-12-09
Category: Life
howdy,
lots and lots of new pictures up... some of friends and family but mostly from the hospital and some things I've made recently as well.... A few of the hospitaal ones may not be appropriate for those with weak stomachs, YOU HAVE BEEN WARNED...
Anywho, things being home are going alright.... Lennon is warming back up to me and is doing good.... I am weaning myself off of the 4 anti-depressent anti anxiety type medications they have had me on THIS WEEK with is tough but in my mind is necessary to retain a very necesarry piece of myself....
I have lots of drs apptments and blood tests this week and next.... might have to get a kidney biopsy next week as well.... I'm starting to look into pursuing some sort of legal action against the farm and possibly whole foods.... I never thought I'd be a person to sue, but this whole thing has taken so much from my family and I that I can NEVER recover..... and has left so many scars inside and out that will never disappear..... My family at the very least deserves to be compensated in some small way (trust me NO amount of money will make up for this hell we've all been and are still going through but....)
Besides all that I've just been spending time with Lennon, on the computer researching this disease, and trying to sort through the massive and confusing mix of feelings, loss, images, memories, thoughts, nightmares, and everything else connected to this disaster that has become my life.... and trying not to let it break me down into a cowering child.... In the hospital I was having all sorts of bizarre nightmare/hallucinations of crazy shit like all of the muscles and skin shredding off my bones, and I couldn't top ripping and tearing it off, and it wouldn't stop until I'd call out for my dad or a nurse or someone..... it was all so reall and vivid.... I'm kind of freaked out that once I go off these anti-crazy pills they've got me on it might start again but I hate feeling drugged and sedated..... I'm not a "give me a pill" person.... I'm a "let me work through this shit in my head myself and on paper" kind of person so...... we'll see how this all goes i guess......
Thats all for now, going to visit my grandparents today for a delicious "welcome home" lunch/dinner... should be a nice time to be had.... I am thinking of a few of you all my friends... would love to hear from/see you... you know who you are... much Love...
until another moment,
Kalee
Currently listening:
Mad World Pt.1
By Michael (Ft Gary Jules) Andrews
Release date: 2003-12-09
Saturday, August 2, 2008
My update from the hospital - From Kalee
Current mood: blessed
Category: Life
Hello everyone, It is actually me Kalee this time. I am still hospital bound but feeling a little better everyday. Its been a very very hard painful and terrifying road the past month, but believe it or not , one I would not change a thing about. I have had so much time to do some serious soul searching that I feel like I have morphed into a brand new person... I guess staring death in his big ole bloodshot eyes will do that to a person..... The roughest past of this has been being away from Lennon..... its been around a month since I've really been with him...Which sadly (and obviously among other things) means he was involuntarily weaned... and today he came to visit for the first time and cried and wanted nothing to do with me... I guess it's to be expected based on the circumstances....
Meanwhile the rest of my bonds with my family have grown and strengthed in ways I never could have concieved.......I have a very limited batterey life to be writing here so I can't really go into details of my sickness, but suffice to say that its one of those diseases that there is not textbook on and its a 50 50 crapshoot..shot at making it through..... some of my treatment involves removing all of my blood and plasma and replacing it with donor plasma, to keep my kidneys from shutting down.... sort of like dialysis.... DOn't want to scare you all too much, and so far it is working so its a good thing!! my battery is low, but I just wanted to touch base with everyone and let you all know I'm still alive and kicking.... not planning on leaving you all anytime soon! I've realized how much more living I NEED to do and I'm fighting this monster with all I got in me. on some positive notes, I have met some absolutely amazing people during all of this. One or two that I could concieve of being lifelong friends with,and others that I'll probably never see again but who have changed me forever for the better. I have seen love and compassion in this place that I've had never concieved existed.... Which is why............... I have decided that my calling in life is to become a NURSE. As soon as I am back on my feet I have decided to attend nursing school! It goes much deeper that I can explain here, but the things I have seen and people I have met have inspired me so much and the more I think about it it and meditate on it the more sense it makes for my life and who I need to be to be fulfilled. I plan on incorporating my love of all things hippie and natural of course, but I have learned so much about the very necessary place of western medicine and how the two could be used in conjunction to save so many lifes and give care and comfort..... Anyways I ramble as usual (some things will never change ;)) I have a few other things I need to do before my battery dies...... I just want to finish up by telling you all I loved you so much and am so very greateful to know you all and to be so lucky to be abe to be here to tell you all this... Please don't take life for granted... take it from me that it is the most precious and fragile thing..... Make the most of it, I intend to from here on out.... The hope is that i'll be out of here is the next week or two.... In the meantime I would love and welcome any visitors and company... I'm a little puffy and mishapen but II'm feeling more life myself each day! I'm at hartford hospital and have been moving rooms quite a bit but If you ask for mmy info at the desk you should be able to track me down. Currently I am in Bliss 1126-2 and my direct linw is 8605450673. I look forward to hearing from some of you all! These four walls are getting a little old! ;))) Love and Peace my friends!
Currently reading:
Running With Scissors
By Augusten Burroughs
Category: Life
Hello everyone, It is actually me Kalee this time. I am still hospital bound but feeling a little better everyday. Its been a very very hard painful and terrifying road the past month, but believe it or not , one I would not change a thing about. I have had so much time to do some serious soul searching that I feel like I have morphed into a brand new person... I guess staring death in his big ole bloodshot eyes will do that to a person..... The roughest past of this has been being away from Lennon..... its been around a month since I've really been with him...Which sadly (and obviously among other things) means he was involuntarily weaned... and today he came to visit for the first time and cried and wanted nothing to do with me... I guess it's to be expected based on the circumstances....
Meanwhile the rest of my bonds with my family have grown and strengthed in ways I never could have concieved.......I have a very limited batterey life to be writing here so I can't really go into details of my sickness, but suffice to say that its one of those diseases that there is not textbook on and its a 50 50 crapshoot..shot at making it through..... some of my treatment involves removing all of my blood and plasma and replacing it with donor plasma, to keep my kidneys from shutting down.... sort of like dialysis.... DOn't want to scare you all too much, and so far it is working so its a good thing!! my battery is low, but I just wanted to touch base with everyone and let you all know I'm still alive and kicking.... not planning on leaving you all anytime soon! I've realized how much more living I NEED to do and I'm fighting this monster with all I got in me. on some positive notes, I have met some absolutely amazing people during all of this. One or two that I could concieve of being lifelong friends with,and others that I'll probably never see again but who have changed me forever for the better. I have seen love and compassion in this place that I've had never concieved existed.... Which is why............... I have decided that my calling in life is to become a NURSE. As soon as I am back on my feet I have decided to attend nursing school! It goes much deeper that I can explain here, but the things I have seen and people I have met have inspired me so much and the more I think about it it and meditate on it the more sense it makes for my life and who I need to be to be fulfilled. I plan on incorporating my love of all things hippie and natural of course, but I have learned so much about the very necessary place of western medicine and how the two could be used in conjunction to save so many lifes and give care and comfort..... Anyways I ramble as usual (some things will never change ;)) I have a few other things I need to do before my battery dies...... I just want to finish up by telling you all I loved you so much and am so very greateful to know you all and to be so lucky to be abe to be here to tell you all this... Please don't take life for granted... take it from me that it is the most precious and fragile thing..... Make the most of it, I intend to from here on out.... The hope is that i'll be out of here is the next week or two.... In the meantime I would love and welcome any visitors and company... I'm a little puffy and mishapen but II'm feeling more life myself each day! I'm at hartford hospital and have been moving rooms quite a bit but If you ask for mmy info at the desk you should be able to track me down. Currently I am in Bliss 1126-2 and my direct linw is 8605450673. I look forward to hearing from some of you all! These four walls are getting a little old! ;))) Love and Peace my friends!
Currently reading:
Running With Scissors
By Augusten Burroughs
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