Welcome to Nanz Place!!!!

Spiraling and spinning

2010-07-06T18:26:00.000-07:00

So I guess I can update a few things, but not really explain a whole lot. The details take so long, and I am so tired.
After only 7 months of "marriage" I find myself NEEDING to get out of it. For my own self respect, self worth, and so on, I have to accept the fact that this just didn't work out. I'm not going to sling any mud, make any accusations or hash out the details. I am just going to accept that I have been someone's expendable item, and try to carry on. This whole experience has brought me a lot of sadness, sorrow, tears, and regret. However, I have learned a lot too, and yet again, the outpouring of support, love, and understanding from my friends and family has been the reason I am able to keep going. Thank you to everyone for standing by me, for being so understanding, and for protecting me no matter what.
Sure, I can accept that I have faults, everyone does. I thought I knew when to say enough is enough, but it seems as though, that came about 8 months too late. I will recover, I will bounce back, and I will carry on. It will eventually be okay.

So much happened in such a short time

2010-06-21T05:15:00.000-07:00

This is just one small post concerning a life altering event that may very soon meet me on my path of life. Stay tuned for more. It is either yes or no, black or white, hello or goodbye. My heart has been split in half and those halves into many other pieces. I am on another journey to find who I am, who I've always been, yet again. Otherwise known as my identity.

This is what happened to me TODAY!!!

2010-05-11T17:54:00.000-07:00

So here's something...I'm in the parking lot at Harmon's after just picking up some milk and depositing some cash into my bank account. It's raining, and a little darker than usual at 4:30 p.m. When to my complete surprise, a man in a black leather jacket walks up to me, puts his hand in the pocket of his black leather jacket and in kind of a whispered tone he says "Ma'am...." at that second, I about swallow my tongue and peed myself at the same time thinking "oh crap, of all the days to get mugged at gunpoint, this is MY day". I'm friggin' terrified! Fight or flight kicks in, and I am actually frozen!
You know what he pulls out of his pocket? He pulls out home made earrings trying to sell them! I was LIVID!!! I said "absolutely not! I'm sorry, but NO!" and I all but leap in my car and get out of there as fast as I can.
Man! I miss the days when people came up to you in the Wal-mart parking lot with a PLASTIC BAG in their hands trying to sell you home made Tamales!!! At least you could SEE what was coming!
I can GUARANTEE if my husband would have been with me, that guy wouldn't have even DARED to come near me! Arghhhhh!!!
THEN to add insult to injury, I go into another store and see these signs for sale that say "Why am I always flypaper for freaks?" Hellooooooo...I invented the phrase "flypaper for freaks"! Where is my cut of THAT profit? Huh??? I leave the house for the 1st time in 2 days and this is what I get? MAN! I'm kidding, I probably heard that phrase years ago and stole it, but that had to have been about 20 years ago...lol.
HOWEVER, before I went out I DID make THE best cookies. Chocolate chip cookies (MY chocolate chip cookies) where the chips are a peanut butter/milk chocolate swirl, and THEN I used my double boiler to melt MORE regular chocolate chips, and I "glazed" the cookies with a thin coat of melted milk chocolate...Yummmmmm! The chocolate on top was my husbands idea, so I have to give him some credit...They were SO yummy!!!
Whew! what a day!

Sorry it has taken me so long

2009-07-30T08:21:00.000-07:00

Okay...SO much stuff has happened in the past few months, I don't even know where to begin!! In fact, I will probably post this, and then add addendums to it later after I have gotten some sleep! (I worked last night). First of all, thank you to any and everyone who reads this and keeps up with it. I appreciate it very very much. Secondly, I would like you to take notice of a bunch of new pictures I have put on here. these are extremely recent (one from even last night before I went to work). Although I am not any healthier (more about that later), I find that longer, DONE hair, and a little make-up goes a LONG way in terms of "looking well". I can't have my patients thinking I am a sickling when I am the one who is suppose to take care of THEM...lol. Anyway....onward.
The Mayo Clinic, although a fascinating and adventurous learning experience, ended up not being as helpful as I had originally hoped. I met with a bunch of doctors who had only heard of Kartagener's Syndrome, and that was at BEST. They did tons of tests on me, and archived a lot of MY experiences throughout my life, so at least it was another case study for other people who seek information for themselves out of what they have gathered from me. It wasn't until the last day I was there, when I got to meet with the pulmonologist that I got any insight into my current state, and it still didn't solve the acute problems that I had. Virtually the only thing that HE said was "Yup, every symptom that you have falls right under the signs and symptoms associated with Kartagener's." Yeah, but how am I suppose to continue to LIVE with this?? It was a frustrating thing for me. I do feel like some things were ruled out, and other things were accomplished just because of the experience itself. It was unforgettable, and my HOPE is that the data they collected about ME, could in some way be used to help someone else...to answer some questions for another person desperate for understanding.
My sweet, patient, loving mother took the trek with me, and for that I will be forever grateful to her. She has taken many many journeys with me as I have trudged through life, much of them unpleasant. The mere fact that she was "Mom", and "Mom was there". Speaks volumes about her unconditional dedication to her calling as MY Mom. I love her SO very much!! THANKS MOM!!!
It really wasn't until I got back to Utah that I got the acutely agitating problems taken care of. I had 3 very large cysts in my pelvic area. One of them had ruptured (which was what caused all of the ongoing pain), and the other 2 were making life more than usually unbearable for me. The Dr. removed a total of 300 ml. of fluid, and although much of the pain subsided my energy level since then has been just drained! However, I am SO glad that they were able to drain those! I cut back to 75% at work (which amounts to 5- 12 hour shifts in a 2 week pay period instead of 6), which odd as it seems, has worked out quite nicely for me. I am literally exhausted after just 1- 12 hour shift now, and very frequently will sleep for a really long stretch of time just to recover, especially during the times I have active infection going on. I don't have to work more than 1 shift in a row and I will have at least 1 night off. Working nightshift you might think that is sort of backwards and odd. But for me, because I am so tired, I usually will work the night, sleep all day, and then be up for a few hours and sleep all night, and then have a nap before returning to work that next day. See? Exhaustion!
Because I have been SO SO SO SO fortunate as to be able to live with Bryce and Vicki again, I am able to have my own little space to just go and "be". Most of the time I am sleeping, and it is nice to be in a house with other people ie. family, so I don't have to be alone, and they don't have to worry if I am alive or not when I don't come upstairs for a few days. Having those accomadations has literally saved me. Financially, I could never be making it on my own right now, say nothing of upkeep on a house. I have so much fatigue, I have energy for work and that is about it, and I am not quite ready to give up on that just yet (ie. go back on social security disability).
The next "New thing" is the University of North Carolina. This is THE premier place that studies all types of ciliopathies...aka, "my" Kartagener's Syndrome. I have been signed onto a support/information/feedback website for quite a long time (PCDfoundation.org), and I just recently started posting comments and questions. Wouldn't ya know it, I got some answers! Pretty immediately! Within days I got information about contacting people there in N.C. concerning the rarity of my circumstances, and they seemed quite eager to work with me. THAT seems to be the place I need to go next, and THAT seems to be the place I feel I can make the most contribution from my life of having this condition, while at the same time get more information, and answers, and explanation and so forth. I know I am not the only person who suffers, and if I can contribute anything out of my suffering to help someone else, my life will continue to be enriched. I have been in touch with some of the people involved with the research end of this disorder, and I hope to be able to make arrangements to see them before the end of the year. Meanwhile, the pseudomonas remains chronic, and is becoming more of a menace. By that I mean, now I am getting ear infection, sinus infection, bladder and kidney infection as well as the pseudomonas aeruginosa in my lungs. I continue to try and do everything I am suppose to to fight it back, knowing it will be return less than 28 days after finishing the 28 days of Tobi and the 21 days of Augmentin. It is the way I live, and there isn't much I can do to change those circumstances, so I try to be as content and as happy as is possible, as I am WELL aware of many many other people who have much worse conditions and symptoms than I.
On a happy note...I am nearing the 6th "brain surgery free" year! An anniversary I am happy to celebrate each and every year!!! This is all I will post for now. Until next time be well, be safe, and God bless.

Just around the river bend

2009-04-22T21:50:00.000-07:00

Hello Friends and Family,

I am typing this blog in green because I am hoping for a new beginning in my life.
Since the last time I wrote anything, a lot has happened. I will just spill it outright. This upcoming Saturday the 25th, my Mom and I are flying to the Rochester Minnesota Mayo clinic to find out exactly what has been going on for the past several years, and hopefully give it a name, and an identity. I do still believe there is on very pivotal driving force behind all of these symptoms. I am hoping and praying that Rochester Mayo clinic can give me the answer I think I already know. The process for getting into the Minn. Mayo was a relatively short one (contrary to the usual practise of a 'waiting list'). It started with me E-mailing the clinic in Arizona, and within 48 hours they referred me to the clinic in Minnesota, mainly because the Minnesota mayo clinic has more of a knowledge base for Kartagener's Syndrome (The genetic defect that started it all). It took about a 3 weeks to gather medical information, but upon faxing that information to Minnesota on a Thursday, they contacted me on the following Monday and set up an appointment for about 2 weeks later. I was very pleased that my 3 month waiting list time got upgraded to about a 6 week one. I am hopeful that I will be able to find the answer I seek, and get the assistance I need. Mine is a rare, "fascinating" case that the Minn. clinic is eager to learn more about, and try to help me with. As it is, there are not that many documented cases of those with the FULL syndrome. I am one of those cases, and hope to be able to get more information out there about this Syndrome, so others who suffer from it, or know someone who does, can obtain MORE information on how to have a better circumstance while they are in this existence. Out of my own suffering, I hope to possibly ease some of that for someone, anyone else. It has been one miracle after the other getting me to this point, so I know I am being watched over and prayed for. Thank you, ALL of you who read this and offer good thoughts and prayers in my behalf. I hope to be able to update this as I am there at the clinic, but I can't really promise anything because I don't really know what to expect.
Because there are so many problems that are so complex, they are starting me off with internal medicine. I think the doctors might have a bit of "fun" studying the "situs inversus" kid that functions sort of....like a normal human being (but not near as well as I used to). At this point, I am just glad to be considered at all (do I sound like the typical cliche 'it's an honor just to be nominated' ? LOL). I am excited, but admittedly a little afraid of this unknown territory. My Mom is going with me, so it can't be ALL bad, now can it???? Here's to the discovery of a new beginning!!!

I promise to update this soon!!!

2009-03-04T04:59:00.000-08:00

Hi hi hi hi hi.......It has been such a long time since I have added anything to this blog! SO SORRY! There are a lot of things going on, and when I have more information I will write a bigger entry....I promise!!! The information is big and pretty major, so I want to have at least one big portion, or phase of it confirmed so that it is for sure. I could write some of the components down, but then that would probably be followed up with tons of questions that I haven't gotten enough information on just yet. I should know more stuff in the next week or so. In the mean time....take a gander at the new hairstyle I have been sporting these days. It's getting LONG!!! I am trying to keep it that way...but there have been those days when I have just wanted to cut it off!! LOL But if you know me, and most of you do, you will understand.
Longer Letter Later,

Lianna

P.S. By the way....since I haven't updated this in a long time, the hair changes don't seem to be that dramatic. BUT...since the last time I posted a pic, my hair has been short, different colors, then grown out longer again...with other colors...so it looks the same, but has changed many times in the process. LOL

2008-12-20T03:57:00.000-08:00

MERRY CHRISTMAS MERRY CHRISTMAS!!!!!!!!!!!!!!!!

Okay, so I haven't been as diligent as I should on updating this blog. A lot has been going on! It is all VERY boring stuff, and I have been asleep for the majority of the time I have NOT been updating my blog. LOL
Work has been insane. There is so much going on (I mean after all, it IS "cold and flu season," which is exactly why I am only writing my post in red with NO GREEN). For those of you who catch my drift on why, I am very proud of you that you can understand what I mean. LOL
On my OWN Chronic pseudomonas aeruginosa bandwagon.......
I will be doing this next dose of Tobramycin, starting sometime in the first 2 weeks of January, and then I think I retest a few weeks after that to see if anything grows out of that. It is a gross thing to talk about here on a bog, but it is what it is. I still have a ton of aches and pains, that I wish would go away, but that is just not going to happen I guess. I get made fun of for wearing a mask when I go in most of my patients rooms, and that is fine. I don't need any of their bugs, and they don't need mine (even though mine are virtually impossible to get). Anyway, I just wanted to wish you all a VERY MERRY CHRISTMAS!
I will try to keep this updated as much as I can. I will be better...I promise. *grinz*

WHAT is going on with the LUNGS???

2008-10-15T02:23:00.000-07:00

Okay, so the latest scoop on the lung situation is this: They are still giving me trouble. At my last appointment with my Pulmonologist, we decided that since I continue to get Pseudomonas, the Tobramycin regimen will continue until I have completed the dosing for a year. This means that every other 28 days I am going to be doing the "Tobi" treatments for 28 days. So in a years time, I will have completed 6- 28 day courses of the Tobi, at which time I will retest. I have gotten used to the treatments, and can tell when I need to start them again. There is a lot of intracellular swelling that happens, I oxygenate more poorly, and I just plain can't breathe, just like it was when I had the Chronic Haemophilus influenza that eventually turned into the MAI or atypical tuberculosis.
It is somewhat difficult to do this day in and day out......15 pounds up......20 pounds down every other 28 days. I did learn something rather interesting about this. As I have frequently had a hopeless feeling that this would never end, I found out that the Cystic Fibrosis patients do this constantly, between hospitalizations. I thought they came in for a "clean out" and then they were good for 2 or 3 months. While I know they have their regular lung clearance regimen I was unaware that they too must take the tobramycin 28 days on, and then 28 days off, and are frequently on other oral antibiotics on an outpatient basis. While this gave me a greater understanding, and somewhat of a sense of relief, it also heightened my level of respect for them, in all that they go through. So we shall see, around about March or April if the Pseudomonas does indeed have a permanent home lodged somewhere within the bronchioli of my backwards little mess of a lung existence. Until then....Keep up that faith. It really does help me you know....THANK YOU!!!

2008-10-15T01:24:00.001-07:00

Don't forget the pictures!!! There are NEW ONES too!!!

http://s276.photobucket.com/albums/kk7/lianna_nielson/?albumview=slideshow&start=20

Please Hear Me

2008-10-15T00:40:00.000-07:00

Please Hear Me

09/09/08

in response to all who I am sure to disappoint, but who continue to try and prove me wrong.

"We" could never happen 'cause

I'm SO MUCH NOT your taste

If you ever wanted to

I'd quickly be replaced

Not because I think I'm not

Quite good enough for you

Your whole life would have to change

Impossible to do...eh...

Nothing is impossible

If you want it bad enough

You've earned your way, to go, to play

With me it'd be SO tough

But something pulls us closer to

A place I do no know

We want to go together yet

I'm SO afraid to show

Show up and meet you at the start

You say you'll help me run

And climb, and leap, and jump, and bound

You say it will be fun

What you don't know is I've done those things

All through my life

JUST to survive! I'm tired now

Go find another wife

I KNOW you think it pessimist

It's real as real can be

I WANT those things, 'cause I want you

I have NO energy.

I cannot just "invent the will"

If I would "just try hard"

You'd soon come home to find that I

Was buried in your yard

"She couldn't do all that he wanted"

Written on the stone

So save yourself the trouble PLEASE

Leave "loving me" alone.

This piece of writing was inspired out of the angst and frustration for those who think they can change me in certain ways. They do not know all the information, and even if they do, they do not understand it. I know the areas where I can do more, be better, and where I can take a risk. My WHOLE LIFE is a risk. That is nonnegotiable, it is IS a risk. Luckily I am one of those who IS a risk taker, but most of the time I know when NOT to jump off a building. There are a few people in my life who have an understanding of what it is like to be me. Not because they have the same type of life that I do, but because they have lived with me for long enough, and gone through enough garbage WITH ME that they respect my limits. I thank them for that.

This is all in relation TO relationships. No one is going to fix me. No one is going to solve this brokenness. It's just not going to happen. I appreciate those people who know me, who know my strengths, and weaknesses, and downfalls, and shortcomings, and choose to love me in spite of all of them. I love them for providing me that allowance. I am not saying that I know everything, or that I refuse to try new things, or different things....not at all, I just know that there are certain things that will NEVER change. Certain risks I can NEVER take, and certain paths that I will NEVER go down for "the fun of it". Life experience has taught me a lot about what happens when I ignore those instinctual signals....that little "I don't think that's a good idea" prompting. I am SURE I will continue to make mistakes, mess up, and pay for my mess ups.

I am SURE there is still plenty of room for me to take a risk, try something new, chance my benefit of doubt. I just feel that I will truly not be "good enough" for some people. Some men. And that is O.K. It really is. This is not a dig on my own self esteem, self worth, or self confidence. That is not it at all. I am just saying that right now...I know my limits, and for the people (men) who think they can "help me" extend those limits before I am ready for it....it is simple, I WILL STOP, and let you, and if I must, MAKE you....walk away. Just some thoughts....

Some news, but not THE news...

2008-09-21T02:17:00.000-07:00

So I must say, that last post...although sincere, was just a smidge depressing. I apologize for that sort of. I mean I meant all of it, just as it reads, but even as I reread it, it has that "the last thing Lianna is gonna say" feel to it. That is FAR from the truth. I got a lotta things to do yet.
As it is, it turned out that I again had pseudomonas. So my Pulmonologist suggested that I just do the same thing the Cystic Fibrosis patients do and continue the 28 days on the med, and then 28 days off the med. on a consistant basis in the hopes that maybe it can regulate the severity of the symptoms, and the frequency of the contagious factor. Since the Tobramycin (also called "Tobi") costs $5,000.00 for a 28 day supply, I am very very very thankful that I have good insurance, AND the "out of pocket maximum for prescription drugs" clause, which means that once I reach a certain out of pocket or copay, then there is no copay for me for most of my medications, for the remainder of the fiscal year (july-july). I met that max paying just $123 and some odd cents with this last box of solution this past week. I take other medications as weel, but it has been this one that I am confident is responsible for the rapid meeting of the max $$. It is relieving in some way to know that I won't have pay more than that for most of my other prescriptions until NEXT July. There is one that I still have to pay a portion of no matter what my out of pocket max is. Because the medication helps me so much, I am willing, and prepared to foot the bill for it.
Anyway, I have been to see my doctors in the past few months, and I just had a ton of blood work done that I will find out the results of on Monday (tomorrow). If it is anything of significance, I will post the findings. In the mean time, I treat the next bout of pseudomonas with MORE Tobramycin. I was kind of feeling bad the other day at work and was talking with a co-worker about all the meds that I have had to be on for my lungs. I mentioned something about "why can't I just be admitted to the hospital for 2 weeks, do a IV clean-out like the other CF patients do, and then be good to go for a few months?" Well, I don't know how I missed this, but apparently MOST of the other CF patients have to do the Tobi nebulized treatments between their hospital visits as well! So there again....MY life isn't as bad as I thought. It still stinks that there is all of this pain and stuff, but in a weird way, I felt better knowing that the worst that can happen ISN'T happening yet.
I also had a spinal tap done by my Neurosurgeon because I was eager to rule out any infection that might be lingering in the cerebral spinal fluid. The tests came back "normal". At least normal for me....given the number of surgeries I have had and everything that goes with that. I really really hope it stays that way. The doctor did the procedure at my insistance. I appreciated that very much, even though it wasn't a comfortable procedure, the peace of mind it brought to me made the whole thing worth it.
I will write more later when I get more results from further testing. For now....Be well, and God Bless!

What is going on lately....

2008-06-26T01:38:00.000-07:00

There is a lot to be said, but then there's not a lot to be said....lemme esplain...ahem...
Every day is a blessing and a burden. At least SOME of you have to be able to relate to that. Some days are more difficult than other days, but ya do 'em...cuz ya kind of have to right? Sure.
I know I don't actually HAVE to get up and go to work on the days I am suppose to work, but I do. Why do I do it? Well for 1) I feel like it is my duty to pay my debt to society...no not in the prison sense of the word. I think of it more like there have been countless people who have played a part (if only just a small part...a bit part if you will) in keeping me alive, and/or making my life easier to live. Trust me, from where I am sitting, a LOT of work has gone into keeping this old battle axe around! So I feel it is not only my civic duty, but also my moral duty to give back in some place close (even if it is in the smallest way) to the same services and kindnesses that were afforded to me when I couldn't do very much for myself. This...is part of the reason I do the job I do, and I love it. It already saddens me to think of the day when I will no longer be able to do those things to help someone else as I have been able to do for so many years.
That being said, I have to tell you...anyone who might be reading this....it may be just me...who knows....about my life the past month and maybe a little bit more. I had a wonderful visit with my Pulmonologist as I stated earlier and things seem to be moving along well until recently. I think I am getting a bit of a chest cold. With me...a chest cold means...."Lianna, spit in a cup, let us analyze it, and recommend a solution." LOL I mean it's not funny, but it's funny ya know...? I have had a great deal of weakness and fatigue in the past few weeks. Last week from Saturday night until Wednesday morning, it would be easier to count the minutes I was awake versus the hours I slept. I felt like I was in a coma for 4 days, and the weirdest part is after the 4 days, I still didn't feel rested! What a bummer huh? Is that what a dirt nap (when I finally get to take one of those) is gonna feel like??? LOL My whole body was weak. I drank water, and ate very little simply because I just couldn't make it happen! I knew that I needed to get up and go to work come Wednesday morning...if nothing but to just snap myself out of this trance of everlasting drowsiness I was in! I would almost like to say that it was drug induced, but there was absolutely NO scandalous reportings to be had!
I NEED my work. I NEED it to make me feel like I am worth something, like I am part of something outside of myself and my own problems. I have said to many people that there are days when I simply just piss myself off, and I need to get away from all things me for a while. Call it depression, call selfishness, call it aggitated anxiety...I just have to get away. I am thankful to find that "away from me" comfort zone with the work that I can do.
Another comfort zone that takes me either away from myself or toward a happier time in some part of time is when I can visit with the family. I hope my nieces and nephews will always know that their Aunt "Nan" "Lana", and "Lianna" Loves them SO VERY MUCH!! I hope they always know that they are always on my mind and in my heart even if I don't have the social, physical, and emotional energies that I WISH I had, and that I HOPE to have again someday soon. The very same goes for my brothers, my sisters, my sisters-in-law, my brother-in-law. I hope you know that I Love each and every one of you for who you are to me. For what you've done for me. Obviously last but NEVER EVER EVER Least our dear sweet Mother. I Love you for the sacrafices you have made, and the prayers you have offered in my behalf. No one will ever know exactly what you have done for me, for MY life, even at the expense of your own. When you have been there for me when you could have been somewhere else. I am thankful for the GOOD GOOD man you have married in Jim. I am SO happy and so much more at peace knowing that YOU Mom are loved and appreciated for the Darling sweetheart of a woman you have always been. No matter what. YOU were the Mom that was THERE during all of the pain-staking procedures when I had to hold still even though it hurt, and I knew I could because you were at the foot of the bed just holding my feet. I think I was only 11 or 12 at the time. I remember those things.
I want everyone to know that I know that the things that are "my life" are all part of The Plan. Sometimes I have confusion, and frustration, and sometimes even some anger about my role in "The Plan". Nobody is perfect. I will be the first to stand up and admit that before anyone else. I DO believe that God does give us more than we can handle. But just like Nephi was told that he would not be given more than he could bear EXCEPT he is provided a way to accomplish that which he was asked.
So to my family, my friends, and everyone I cross paths with that have eased my burdens and bettered MY way, YOU are the EXCEPTIONS that have provided the way for me to accomplish those things that the Lord has asked of me. Whether you realize it or not, you will continue to do these things, and for that I am SO very grateful. Thank You.
In the next few months I will be seeing doctors, and specialists to try to find ways to ease this pain that goes from my feet up through my head, or from my head down through my feet...either way, it's still pain. Thank you to everyone who keeps me in their prayers, and keeps me in the prayer rolls (is it rolls or roles I don't know) at the temple. I am going to keep doing what I do too. Cuz if they can't fix anything, I might as well use what I know to help somebody else. I Love You....All of ya!!!

"L"

Some good news so far...

2008-05-18T21:29:00.000-07:00

Hey folks....So I have some good news thus far...at this point in time, I don't have any active infection in my lungs!!! YEAH!! While that is really great to know about, it doesn't explain why I still feel so yucky. I have my appointment with the CF clinic tomorrow, so we'll see what happens then.....

What Mozart Does for ME.

2008-05-15T01:07:00.000-07:00

It seems that I am always heartbroken. But that also means that I am perpetually in love...That is not to say that I am in love with any one thing, or any one person...I am though, forever in love with music and verse...I especially appreciate Mozart. Mozart's music is very personal to JUST ME. It doesn't remind me of anything, or anyone else but MY connection with THAT music. I have played Mozart's compositions for years....and I am in love with it. Frequently, when listening to Mozart (which by the way, helps me to forget about my latest heart broken "social" heartache---aka some man who has just crushed my crush on them), I will find my fingers playing the notes of the song, at the tempo of the music, on my steering wheel in my car, on the table next to me, or anywhere....I believe to anyone who cannot relate to what I am trying to convey...that is called "air piano"...I don't much care what it looks like...it enlivens my soul. I do it so automatically...play "air piano" I mean. In fact, there is this 10 second interval in an orchestral arrangement of a Mozart composition that I will frequently rewind just so I can listen to it over and over and over...It is JUST 10 seconds...I LOVE IT!! In that 10 seconds there is something about the combination of what the piano is doing, syncopated, but in complete harmony with the other instruments, that sends my creative subconscious into a whirlwind of total and utter soul-finding excitement. Yes, it really DOES that...can you believe it?? If there is any man who can identify with anything I just said...we are kindred spirits for sure!
Mozart calms my troubled mind, eases my broken heart, and brings peace to my soul, and I don't even know HOW his music manages to do it...it just happens. I don't NEED to know why... I am content with the outcome.

There is a difference, but what is it??

2008-05-13T04:13:00.000-07:00

I have to pose a question concerning something that I have recently been forced to face. What is the true difference between a "soul mate" and a "kindred spirit"??
I believe that a kindred spirit is someone with whom you feel an almost immediate connection. Someone who is very much your "same kind of weird". These are your best friends that you can be your family, someone you work with, play with, and socialize. People you enjoy. Kindred spiritedness is timeless. I feel that I am a kindred spirit with many people, where commonality knows no bounds. The more you know them, the more kindred you become. It is as if you were destined to know eachother. It was in the grand design that you meet.
I feel that soulmates are everything a kindred spirit is, with added elements of depth and understanding. Can you only have ONE soulmate? As I have pondered that point, I want to say no, that you can have many, but not as many as the number of kindred spirits you encounter. I think it probably happens one at a time though. While you can have hundreds and probably thousands of kindred spirited people that drift in and out of your life, a soulmate is someone who is especially special for an extended period of time. Added to that is the concept of the "soul twin". What of that? How does that differ from a kindred spirit? I think a soul twin is wedged somewhere between a kindred spirit and a soulmate. All of these seem to leave that perverbial footprint on your heart on the path of life, that leaves you a changed person from the moment you met them on, into other paths....but what happens when you venture into a seperate course, somewhat resembling a paradime shift; for example: Marraige, Divorce, a career change, a change of physical location, serious illness, a death, a new life...What happens to your kindred spirits....your soul twins, your soulmates? Do they disappear? I don't think so. I believe they are always with you, even if you don't see them for a long time, or even if you don't ever get to see them again in this life. But what is the true difference? Kindred spirit, vs. Soul Twin, vs. Soul Mate. Please, enlighten me. I feel an almost desperate, urgent NEED to understand this.

2008-05-07T04:19:00.000-07:00

The latest in the Lovely Link for Lianna's Lungs

2008-04-30T23:38:00.000-07:00

Okayyyyyyy so anyway...I added these pictures so you all could get a good look at what I see all the time. LOL Recently...wearing the oxygen has been quite a bit MORE helpful in the "fight against suffocation". A lot of things are improving as far as which assists are actually assisting, and not just mearly POSING as assistants...Okay, moving on...
So the Sputum culture I submitted this past week ended up being not that big of a deal. Initially, I was afraid of a couple if Gram positive bacteria...but ultimately it ended up being a few stray bugs that didn't amount to much. SO......There have been a few good things that have happened (imagine that...something GOOD...keep reading...it gets better)
1) I talked with my Pulmonologist. She is really great at resolving my concerns. I mean it helps that I am in the field of respiratory therapy, and know what I am dealing with, but she has that added element of informed comfort that is SUCH a relief. For any of you who knew my brain surgeon Candace Carlton, and what an amazing person she was, Dr. Carveth (my pulmonologist) is very much that same type of person. She says that although I have an atypical case with my lungs and the whole Kartagener's Syndrome, she thinks I would be a good candidate to be seen at her Cystic Fibrosis clinic. I have a lot of the same issues as the CF patients (ie, digestive, pulmonary, sinus, etc), and she thinks it would be helpful to be under the care of the "Team" at the CF clinic. This team consists of Nutritionists, Physical Therapists, Pharmacists, as well as other Physicians besides just MY Pulmonologist, so there are a lot of people contributing to a better maintenance solution. I am kind of scared about it, just because there are so many issues that have never been very closely addressed, and I am afraid they will unearth a bunch of stuff that I have just put off to the side as I try to get through my life...However, it has to be taken care of sometime. I am VERY glad for this opportunity. My first appointment with them is around May 19th. I will try to update as much as I can.
SO....this means, I am OFF the 3600mg. of antibiotic I have been on for the last FOREVER. I will be doing another sputum culture in 2 weeks to see what bugs have grown, if there are any. I am still doing all the breathing treaments and airway clearance stuff....I can't live without it doing that. I am just happy someone can help finally.
2) I had a weird little ultrasound of my eyes yesterday morning...My eyes always hurt...for various and assorted reasons. The most obvious being the brain surgeries, the hemmorhages, and the optic nerve damage...This, was to find out if I had swelling in the blood vessels behind my eyes. The information the doctor told me was that he didn't see anything very suspicious except for my sinuses....ohhhhhhhhhhhhh the dreaded sinuses...geez that is a bugger! I'm tellin' ya...this Kartagener's Syndrome has been the bane of my existence....and will continue to be as much until the great day of the resurrection I suppose. Anyway, I'm sure a full follow-up on that will be promptly expidited if the eye thing is anything more than just a sinus issue. So this case is going to be busted wide open....Let the detective work BEGIN! Details to follow....
3) In other, more uplifting news.....I was able to play the piano for a surprising length of time yesterday. For those of you who aren't aware, this "chronic curse" of illness leaves me feeling like what I can only describe as the worst part of the flu....all the time. You know, that part where you hurt all over, and you feel like you are about to puke at any given moment....you can't go outside because the sun BLINDS you, and the headache is just that....an ACHE. So...you can imagine, playing the piano is fingernails down the chalkboard of fun....HOWEVER...I sometimes HAVE to play...even if it hurts...What can I say...it is my sanctuary.
SOOOOOOOOOOOOOOO........That is the update...I will try to keep these posts current, as they are going to be the info epicenter for those who want to know what is going on.
As always, thanks for all the support, the love and concern, and all the prayers...Trust me, they do not go unnoticed, or unfelt. I appreciate it very very much.

I hate being restricted to only the things my body can do

2008-04-27T01:25:00.000-07:00

I had kind of a rough day today. I have been dealing with a lot of pain the past few days, and consequently did not get a great deal of sleep. I am a yellow personality...I LOVE to have fun and hang out and be doing things...This week has halted such activities. I have been dealing with the aftermath (and I have never been very good at math) of coming off of medications...to see if I can stay off of them. During that trial period my body does it's own equilibrating....whether I like it or approve it or not. Can I just say that I do NOT approve of this tiredness, I do NOT approve of this pain, and I certainly do NOT approve of having my hopes and wishes set in the form of plans that I make being altered because of the afore mentioned disapprovals that are constantly happening. I WANT to go to Idaho and see my family. I WANT to go to Idaho to visit friends....But as of right now...at 2:30 in the a.m. I don't see myself being able to do any of that....I hurt too badly, and push myself too far REGULARLY. Sometimes, it is okay...this time, it is not okay. I hope people can forgive me when it looks as though I have promised something that I cannot follow through with. It seems as though my life is in an extended stall pattern riddled with "Maybe's". That bothers me, and I am truly apologetic over it. That being said....I will try to go to bed, and make phone calls in the morning. Thanks for your understanding.

How embarressing...

2008-04-26T15:08:00.000-07:00

So it says that my "Zodiac year" is an Ox...an OX??? What does that even mean??? I suppose it can be good...lol...I mean I could have been born in the year of the PIG....or the Rhino...or (heaven forbid) the duck bill Platapus...besides....an Ox is a strong..."hearty" animal right??? Hmmm somehow that isn't making me feel any better...Oh!! I know...Ya know how people sometimes sign off with x's and o's signifying hugs and kisses??? hmmmm OX....could actually be Hug/Kiss....do ya think?? LOL

2008-04-26T15:00:00.000-07:00

Welcome to Nanz World Bloggifications....

2008-04-25T07:20:00.000-07:00

Hello everyone....this is my first experience with a blogspot. I hope to afford a lot of clarity toward information for everyone who reads...I have not been able to keep everyone updated about the goings on in my life, so hopefully this will be a better way to get the word out about the events (whether joyous or tragic) that are always transpiring in my crazy life!!