Thursday, October 25, 2012

learning to pocket my pride in moments of darkness

Tiernen letting me love on him on a "dark" day
I have always seen myself as the kind of person who can handle what’s on my plate - alone thank you very much. I am a semi private person and although I like to share my life with people, I like to choose what I share. It is a very humbling experience to have very little control in the daily running’s of one’s life.  My home is more often than not kid cleaned and blind- mom approved. So if you come over and my floors are nasty just know they are trying the best they can and please don't tell me because as far as I can “see” my floors look great!
         I have been putting this off for a while because I didn't want to spend the time it would take to post it but I have recently started feeling some of the signs that things are going to change soon. I'm starting to lose my words not often but five or six times a day, my memory is lagging and I have to have things repeated again and again,  my headaches are getting more and more intense and of course my days are getting blurry again... So, my typing days are coming to an end soon, for a while at least and I wanted to get this down for me but you can read it too and comment as well if you would like. 
        My vision is constantly changing because the pressure is constantly changing. I am currently on two separate medications, high doses multiple times a day to help reduce the amount of fluid I produce which in turn relieves the pressure on my braina and eyes. I think that is why my most recent spinal has lasted clarity wise for this long. It has been almost like having my old eyes back minus the peripheral vision, a few black spots that didn't clear, and the fact that I still can't drive.  Normally in between spinal taps in one eye I kind of feel like I'm looking through a camera lens that is trying to focus but can't settle and in the other eye it is almost always blurry or black. For those of you who don't know my vision is blurry at best and almost nonexistent at its worst in my right eye and my left will go from blurry to clear-ish with black spots and back in a matter of minutes or it may stay blurry but the severity varies and it all continues to get a little worse as time moves on. This has been my life every day for the last three months EXCEPT sometimes for a few days/weeks after a spinal tap. A spinal tap relieves such a significant amount of pressure that sometimes my vision becomes clear again. Not perfect, it has yet to go back to where I was at before it all started but, where there weren't textures and patterns before the tap they are clear and visible to me after were my kids faces where just a blurry shape I now see them. It's amazing and deeply emotional for me.
         Frankly the whole thing has me in a kind of  constant state of emotional Frick frack. One minute I am fine. I completely and totally understand I am blessed, I am loved, and I am OK. Things will be OK . And really in the grand scheme of things this is nothing... But then I have those moments where I get a glimpse just a second really, a peek, of a clear perfect freckle on Rieken’s nose or a small bruise on Bey's chin that wasn't there the other day when my last "peek" happened. It's hard for me to know my babies are literally growing up right in front of my eyes and I AM MISSING IT! I feel so ungrateful and so irrationally upset because I feel horrible having to ask my mom or sister in-law or friend to come help me paint or do the laundry and dishes and daily chores. I feel awful that I can't even chop vegetables without hurting myself because my depth perception is so whacked or I just can't see well enough. My children have had to grow up very fast  and they have done it with humor and love and for that I am grateful. But I think it seems so unfair for them. They have taken on a lot of my household responsibilities and my husband now has the fun privilege of doing all the grocery shopping, errand running, deposit making, and kid shuffling duties that we have always shared or that I did alone. Really why couldn't I lose my sense of taste at least then all I would lose is some weight and I can only see that as a win win. Ok enough whining. 
         I know there are people out there who are visually impaired who live perfectly normal lives. I know once my doctors can make up their minds on a course of action other than spinal taps as needed (that is not an option for me for long term) then I can make a plan. Right now my vision is so inconsistent I don't want to "plan" for a lifestyle of vision impairment when I am not always at one level of impairment. So we wait... We wait and my mom comes and mates my socks and helps me with laundry, we wait and my front porch stays painted two diffrent colors so I can tell where one step ends and the next begins, we wait and my floors get kid cleaned and blind-momma approved, we wait and I pocket my pride and humbly accept with deep gratitude the help of friends and family when necessary, we wait and I take pictures like a crazy person while I’m blurry and hope for the best  then while I lie in bed at the hospital for four hours after each spinal tap I devour those pictures and soak in each detail because once I get home the countdown begins  until the darkness sets in again and I refuse to waste a minute of my "clear" days pining over the past just to miss what is right in front of my eyes.
 I know I don't blog often it’s hard to type when I'm blurry and the same goes for Facebook but, I do post pictures to instagram on a daily basis although some days I just point and shoot at the "noise" or let the kids take it for me but, If you would like to follow my feed I would love to have you, you can find me at:
lil_yellow_haus
You can also follow my Man Karl at:
lil_yellowhaus_handyman
Until next time, N

Friday, September 28, 2012

Spahooch!

We live in an area that has all kinds of farms and crops and over the last few weeks everyone has been harvesting and transporting their goods, often by Semi truck with an open top so we can see whats inside. When you add this to usual variety of  trucks hauling goods you can have a right fun time playing games in the car with the kids while you drive. I like to point out a truck and ask the kids what they think is inside and usually they can tell based on the open top or the logo on the side or the stuff flying out the back :) but its sometimes funny to hear what they think they see or what they think a certain logo means.
    Well early last weekend we took the kids to Spokane  for a visit with  my sister and to let the big kids use the Silver Wood tickets they had earned at school. It is a two hour drive from where we live so we had plenty of car time to play the truck game. We passed all sorts of trucks like an apple truck an onion truck  a cattle hauler a milk truck and a fuel tanker my kids call it the gas truck and then always talk about the driver having to be extra careful because his "gas" is  combustible ha! So here we are driving along and Tiernen yells out, "its the Spahooch truck!" Spahooch is what we call spaghetti I think it a Rimmasch thing. Anyhow we all look over to see what the heck he is talking about and guess what? It's a Walmart truck! Of all the things we get a Walmart Spahooch must be the one that sticks out to him because as far as he was concerned the whole purpose of that truck was to haul spahooch.  So dang cute, I just love that kid. Well that is it for now catch ya next time, N

Post edit: I received a note from Karl's Aunt Hazel letting me know that Spahooch actually came from Karl's Grandpa Bang therefore making it a Bangisim not a Rimmasch thing :) Thanks Hazel, I hate it when I get stuff all mixed up.  Grandpa Bang (Karl's Mom's Dad) was absolutely Hilarious and it makes my heart happy to know his  pot licking Mugwamps are carrying on the traditional Bang- lingo!

Friday, September 14, 2012

BEY turned One and I'm Finally blogging it 9 months later!!

Bey turned One on
1-14-20012
 We had a Smashing party to celebrate it
and
here are the pictures
to prove it.

The Food
The Art
The decorations
 
 



The cake!

The inside of the cake...OOOh so pretty

The Eating of the cake :)

The End!!








Friday, August 31, 2012

It's all in my head!

The Good news is: It's not a tumor (in my Arnold S. voice:)
The Bad news is: it's a pseudo tumor so I have all the symptoms of one with no actual tumor!
A few weeks ago I started getting sick; headaches, nausea, vomiting, the works. Then one morning I woke up and I felt like I had put out my neck and my back was having spasms.  On top of all that my vision had an odd black spot and I was feeling disconnected and just kind of like I was there but not present and the strength on my left side was diminished. I got into a chiropractor for my neck and back, who was awesome, and he was able to give me some relief from the nausea and disconnected feeling right away and although my neck and back felt better they still hurt. After two visits and no major improvement and the black spots in my vision getting worse I went in to see my eye doctor (they got me in  right away). He was a little stumped. He could see that  my eyes were hemorrhaging but only around my retina  causing the black spots and my optic nerve in both eyes where swollen but he wasn't sure why. He referred me to a retinal specialist who got me in the next day. By the time I got home a few things had happened. My Mom who is an RN had spoken to the Doctor  she works for about me and he was very concerned and got on the phone with a neuro Doctor at the hospital who told him I  needed to get into he ER right away because it sounded like a brain tumor or a stroke. Of course we decided to listen and we went in and they ran a TON of tests one of which was a CT scan. They didn't find a bleed and they didn't see a tumor  but when you put all my symptoms together with the Negative CT they were able to diagnose me with a pseudo-tumor cerebri and papaledema. The funny thing is they then referred me to the same retinal specialist to confirm the diagnosis. I was able to get into him within 4 days which was a big deal as he was weeks out.

So about pseudo-tumor cerebri and papaledema: basically my body produces too much spinal fluid and it is putting pressure on my brain causing it to swell and in turn putting pressure on my eyes causing the bleeding and vision loss. There is no known cause although women between certain ages are more likely than others to have it. I am both a woman and I am of a certain age :)
The papaledema is the swelling coming from my optic nerve.

Okay as far as treatment goes usually the first line of treatment is to lose a significant amount of weight rapidly to relieve the pressure, and meds to slow production of fluid and steroids. If these options don't work they can put a shunt in that drains the fluid off the brain and relieves the pressure and there is one other optical surgery they can do as well.
Ok just to clarify a bit, up to this point everyone is telling me lose a little weight, take some meds, and everything will probably go  back to normal and my vision will probably clear  up.

Well we went in four days later and saw the retinal specialist, Dr.S, who confirmed my diagnosis. He was concerned with how rapidly my condition was progressing though because in just four days my Right eye's blind spot had quadrupled in size and my Left eye's had doubled. I also had new black spots and I was struggling with my memory and experiencing aphasia so he wanted me to see a neuro specialist. He told me we needed a spinal tap to get an opening pressure and to relieve some of the pressure on my brain and possibly and MRI but the Nuero  would decide and he put me on a low dose of a medication that would slow the production of fluids in my body.

So  in we go for a spinal tap. Regular pressure is around 20, 16 is considered low and 25 high. Mine was 46. The Tap relieved my headache for about 24 hours but it didn't really make a change in my vision and it just continued to get worse.  Next we went into  our Neurologist Dr.W. He took one look at my file and said I needed a shunt put in ASAP because I would be blind within weeks. Uh scary much? Needless to say it totally bummed me out. Up to that point all I had been hearing was this is reversible we will treat it with meds and you can lose a little weight and now this Dr. is saying I need what is essentially brain surgery or I'm gonna be blind--in weeks! OK I can deal. So, our next step was to see the Neuro Surgeon Dr. A. and schedule the surgery the soonest he could see me was a week away.

 Now it's been 8 days since my last spinal, my headaches are getting worse, the pain is creeping down my neck and my vision is to the point I can't drive and I'm tripping over things because I can't see the ground clearly.   So while we waited for Dr. A to see us I had to go get another spinal tap. This time it really didn't do much for my headache but my vision cleared dramatically. I only had black spots left in both  eyes and some blurriness in the outer edges of my right eye by the next day.This was really huge for me because my last spinal didn't change anything vision wise and I was starting to wonder if the damage was going to be permanent. So that was a really really good day for me.

We finally got in to see Dr. A and I was expecting him to schedule my surgery for the shunt and instead he said he felt it would be irresponsible of him to do the surgery before trying alternative methods such as diet and meds. Um OK what about losing my vision in weeks!? He suggested I get used to going in for spinal taps because that's how we were going to relieve the pressure if the meds didn't do the trick over the next few weeks. At first I was like are you kidding we are gonna just wait and see if I go blind and then I realized this meant no surgery, at least for now, double YAY! So he doubled my dose of the meds I was currently taking got me in with a new Neuro Dr.  (who I go see next week). One who he could work side by side with and who would monitor my progress closely and adjust meds as needed. So now we wait  and see if the meds work and my vision  at the very least stays  the same or gets better,,, then no surgery. If they don't and my vision continues to decline we will revisit our options, surgery being one of them. PHEW now that I just wrote a book I hope you all feel informed :) My Mom always thought I was an air head but oh no, I have to take it to a whole other level and have water on my brain.You know me My motto has always been, I'll do it my way!


Tuesday, February 21, 2012

No frosting just cake...

My friend asked me to post and I told her my card reader had broken and I didn't want to blog without pictures because to me it's like cake without the frosting, pointless. But then I got to thinking about January and that's kind of how I would describe pretty much the whole month with the exception of a great trip during which we got to see my sis and her family and also get some great motivation and education. Other than that just bland cake. 

January was one of those months that started out all slow and steady and then when we least expected it *BAM* life of the unpleasant kind hit us smack dab in the knee caps. We all got sick like we haven't in a L-O-N-G time, we had some serious emotional moments and heartaches due to hard life lessons, and then we got sick again. Like I said a little cake but no frosting.


February has been a little better but it's like we are desperately trying to make up for January and barley managing February. Does that make sense? It doesn’t help that we are still feeling the effects from both our illnesses and the hard lessons of January.  

Just so this post doesn't totally depress you I'd like to share some of the more stellar moments of the past little bit. As soon as I get new card reader I will get on and post all about frosting :)

*Kelten made the decision to go back to public school and it has been wonderful. He was getting bored at home and to be honest I was horrible at keeping him on track ;) 
*Bey folds his little hands and "says" (grunts with inflection) the prayer whenever we say one. SO adorable 
*Karl turned in his notice and will be changing things up career wise by April (more on that later)

And finally I'd like to leave you with this conversation we had a little bit ago it still makes me laugh but, first a little background. We got each of the kids a toy when we were gone on our trip and Rieken's was a Hal Jordon (the Green Lantern) guy with a pullback motorcycle. It also came with a ring that we thought would light up but we couldn't get it to work...This is the conversation that took place while trying to figure it out.
Rieken: I think it needs batteries, maybe you shake it?

Dad: is it powered by light?

Kelten: Oh yeah stick it in the light see what it does.

Dad: lights off, moment of truth

Rieken: Nothing (flips the lights on).........Maybe its skin activated!

Dad and mom look at each other and laugh because that’s pretty cute 

Kelten: Oh yeah there are Chicks out there like that..... 

Mom and Dad in unison: Yes there are HA! (Totally laughing out loud)

Kelten: (oblivious to his rude Mom and Dad who apparently have their minds in the gutter)
Yeah they make them at Easter you know those little baby chicks you set on the palm of your hand and because they are "skin activated" they start chirping...

Rieken: Oh yeah I've seen those I love skin activated chicks!

Dad: me too!

Mom and Dad: had to get up and leave the room because they couldn't stop laughing. :) 


We are so glad Kelten is 12 and totally innocent!

Sunday, January 8, 2012

Christmas 2011 highlights

Every year Christmas seems to get better and better around our house. I'm not sure if it's because we have traditions that our family has created and now after doing them for a few years we are pretty smooth about it all or if it's that the kids are getting bigger and they are really starting to enjoy all the bits and pieces but we still have littles who find and point out the magic all around us all the time. Or maybe I'm just getting older and I'm not as uptight as I used to be. Everything does not have to be perfect and that is finally sinking in for me.
 Any way you go around it Christmas just keeps getting better and better.

This year on Christmas Eve we went caroling and took treats to our family and friends
  then we had
Our Traditional Christmas Eve Chinese dinner by Candlelight

The Christmas Mouse came and left new Christmas Jammies on Christmas Eve
We wrote Santa a letter and left him and his reindeer snacks
We read The night before Christmas. It was Kippi's turn so she picked which version to read  (we have several)

Then we snuggled up and watched a Christmas movie before bed
after everyone was finally asleep SANTA CAME and he brought everyone a gift.
Kippi got a Guitar
Rieken a scooter
Kelten a keyboard (sorry no picture of him with it)
Tiernen- Smokey the fire truck
Bey got a vacuum but he pretty much slept through it all and I thought I got a picture of him with it later but I guess not-Mommy fail!

This year Christmas came on a Sunday so we got up early and the kids opened Santa gifts and stockings, then we went to church and  it was AMAZING! After church we came home and opened the rest of our gifts. It was nice and laid back.
Some years I feel like the Santa gift doesn't really get the attention I thought it would because we rush right into the other stuff but this year the kids had plenty of time to just savor that one gift before anything else was opened.




Other noteworthy highlights of the day...
the epic star wars battle
Daddy's new Acer Tablet he got from his boss
Bey climbed up to the third shelf in the pantry. What your pantry isn't a hot mess like mine? Oh and I took him down before I took the picture because I'm a responsible mom but he was already looking to climb it again the turd.
The leather bracelets I made for the boys this year. This one is Kelten's. I love LOVE how they turned out.

floor puzzles
Kippi's hair extensions that she got for her -wear- gift
for real GLUE on fake nails to Kippi soup from Grammy.

  We had my parents over for Christmas Dinner and to swap gifts but again I didn't get any pictures of it like I thought. BOO! Just imagine AMAZING food, good times, laughing and games. See it's like you were there.  

 After all was said and done I walked my parent's out to the car and when I came back inside this is what I saw... 


the tent Tiernen got from Grammy set up on the hide-a-bed and jammed full with all the boys including Daddy
Needless to say it was a hit! the kids slept in it every night for the rest of Christmas break.

 We finished Christmas off with our last Christmas movie, Mickey's Christmas Carol. It was pretty much the Christmas I have always dreamt of having it was that good.
I wish I would have taken more pictures but other then that, perfect.
Movies before bed





d

Friday, January 6, 2012

Today...

Today I...

*took the baby to the doctor

*shopped the clearance section at shopko while waiting for prescriptions to be filled

*scrubbed and I mean with a toothbrush scrubbed, our one bathroom.. should be good to go for a day or two now. Ah the life of one bathroom and five boys.

*brushed the cat he seems to think it may be summer he is shedding like mad. Stinking wonderful warm weather

*put Tiernen in  timeout (also know as sat him on the toile wt/ the lid down of course)  at least five times just so he could scream the whole time. that kid is in my top two most stubborn and that is saying something.

*returned some library books that were Wee-heeellll past due. apparently there is still one out there somewhere that I missed

* "rented" 7 movies from the library. One of which is, Gone with the wind. I'm so excited to watch it because I have never seen it.

* did not do a single load of laundry... That is gonna bite me in the bum later

* opened one of Bey's birthday gifts early because he got shots today and needed something extra.

* ate a num dilly-is-ous meal that the handy man made for us...

*wrote up my January calender on our white board aahhhhh! oh yeah let the rumpus begin people ;) j/k

*paid bills yuck

*lost my patience with one of my kiddos and I am still feeling bad about the was I chose to handle it as opposed to the way I really should have.

* watched a late night flick and ate snacks with the Handy Man yum.

*got sucked into pinterest for way to long

*listened to the Handy man read scriptures and talk in detail about what was going on to the kids for an hour. He is amazing like that.

*ate mini ice cubes one by one out of the cutest little mini cube tray that I got for Christmas. LOVE.

*was told by a certain daughter that I was funny but in a mom kind of way.

*realized I am officially boring.

 sheesh it took me like 20 min. to pull this list together
- I need to get out of vacation mode.

Until next time.