Ugh

I woke up yesterday to a cold sore right smack dab in the middle of my bottom lip the size of Fukushima Diichi nuclear reactor #4. I'm that attractive...and deadly.

I've been on vacation for a couple of weeks and tomorrow is my first day back at work and I don't imagine people will be asking me too many questions about my trip. I think it will probably go something like this, "Hey, (oh God, what is that thing on her lip? did she bring half of Savannah back with her?) Umm, I want to hear all about your trip, but I'm really busy right now, gotta go! (yikes, that was 'invasion of the body snatchers' scary)

I'm using all the remedies I can think of right now to lessen the likelihood of a complete and total meltdown....of my face. Hopefully something will work or I'll have to wear a surgical mask to work and pretend the air quality is pitiful and my asthma is acting up. I dunno...the dogs don't seem afraid of me yet so maybe it's not as bad as I think it is. Who am I kidding, this thing should have been included on the last US Census.

I'm too weirded out to write about our fabulous trip. Maybe in a few days if it doesn't engulf my entire face.

Heartbreak

This is pretty much how I'm feeling these days. Sara has been asking me to update this blog for weeks now because she's sick of looking at my Christmas picture (can't say as I blame her) but I don't have anything witty or even in the least bit silly to write about. I'm looking at this picture now and this is exactly how I feel. Almost six years ago we took a young girl into our home and hearts. At the time we were very conflicted as to whether we were doing the right thing considering it was our youngest son's girlfriend. But, she was so easy to love and needed some stability in her life that it seemed the only thing to do.
Due to an unfortunate decision on her part, they are no longer together. I've thought about this over the years, how would this affect our family dynamics should a breakup occur, and would it be awkward? I guess I always assumed that if they were ever to end their relationship that it would be a mutual decision where they had just grown apart, or if not that, cordial, perhaps bitter and hurtful for a time and then eventually we would still be "family" and I could still buy belly dancing outfits for her, or meet her for lunch with lots of hugs and sincere happiness with just the thought of being with my daughter.
Apparently I'm still naive in my advancing age because as things stand, I can't see it ever happening. Too much has happened, too many twists and turns...and yet I still feel conflicted. If I just shut her out of my life now because of her actions, does that mean all the feelings I've had over the years have been fake? Has calling her my daughter been a lie? My heart is aching for my son right now. The emotional upheaval he is experiencing is ripping me apart. As a mother my first instinct is to comfort and protect him. But what about her? I'm angry, hurt, disappointed and well, disgusted with her right now and I'm finding it so very, very hard to feel my motherly instincts for her....and that makes me sad too.
She's out of our lives by her own choosing...so I guess I'm left to do the only thing I can do under the circumstances which is to take care of my son the best I can and hope that someday the pain of all this lessens and I can let her back into my heart. I just can't do that right now and I feel guilty and then I sway the other way where I think, well, she apologized for what she put us through by text messaging me and honestly was kind of "matter of fact" about the whole thing so it doesn't seem like she needs me, she's getting all her advice and support from her new friends.
I don't know. All I know is I was listening to my iPod at work this morning and a song started up that was "her" and I had to close my office door for a few minutes to compose myself.
It's hard for me to think right now. My thoughts are jumbled in my head and I can't seem to unravel them into coherent sentences. I'm broken.

Merry Christmas

Oh how I love this time of year! I get to put on my little Santa number, throw on a little lipstick and hit the party scene! I'm tellin' ya, it's exhausting to be me. I swear I get invited to more and more parties every year and everyone and his dog wants to have their picture taken with me. Isn't that sweet? I'm definately the belle of the ball and I'm lovin' it!
Well, I'd post more but it's 8am and I need to start getting ready for the next party that starts at 7 tonight. It takes a lot of effort to look this good you know. Merry Christmas everyone!

Finally, something that works

This is my new best friend in the whole wide world. I would marry it if I could and living in Las Vegas, it just might be legal.
Anyway, this is the story of our new relationship. Some years ago we got sick of the carpet, sick of the laminate flooring and had the brilliant (read stupid) idea to put ceramic tile throughout the entire downstairs of our house. While tile in and of itself wasn't such a stupid idea, it was the light color we chose that was by far one of the most stupid things we have done in our married lives. Well, moving to Las Vegas wasn't the best idea ever, but that's for another time. We're talking floors tonight.
So, back in the olden days when I had housekeepers from time to timeI always insisted that they not use PineSol on the floor. (It leaves a sticky film on the tile that attracts more dirt.) Not that any of them ever paid any attention to my insistance as my entire house smelled of PineSol everytime I came home. Over the years the guk built up and scrub as I did, the floor just never really looked clean to me and I hated my life.
Scott and I thought this Thanksgiving weekend would be the perfect time to have our floors professionally cleaned. I checked out a few places online and about puked when I saw how much they wanted...over a thousand dollars. Gad zooks! Scott found a guy through a friend at work who said he would clean the floors for about 650.00. Crazy amount, but obviously a lot less than Stanley Steemer. We booked him for this morning at 9 and spent the better part of last night moving all the furniture out of the house. 3 couches, dining table and chairs, chairs, bookshelves, lamps, coffee tables, all that stuff.
By 9:30 this morning when he hadn't shown up, I had Scott call him. He was having "mechanical" problems and said he should be here within the hour. By 11:30 and no word from him, I was angry and ready to tell him to take a hike, if he ever showed up. I looked outside and great...it's starting to cloud up and look like rain...and oh goody, the wind is kicking up. Fabulous. To make this long and boring story a little shorter, I decided that we needed to just rent a machine and do it ourselves. We checked out a couple of places and everything looked pretty bogus and then Scott got the idea to check out Oreck. For less than what we would have paid the guy, who by the way called at 4pm and said he wasn't going to make it today and most likely not tomorrow either, we bought this great cleaner. Scott was skeptical, and I had faith that it would do the trick.
It's fabulous!!! I'm so happy with the results I can barely stand it. (I'm so easy to please)
The only down side to this entire thing is there was a part of me, and I'm just a tad bit ashamed to admit it, that hoped robbers would come over during the night and steal all our furniture so we would have to get all new, pretty stuff. I love to dream.
It's past midnight, gotta get up early to finish up all this cleaning business. Who knew I could get so excited over sparkling clean floors? Pathetic.

fall

A few weeks ago I took my mom on a little road trip to Bishop California. We've gone on our "fall trip" for the past three years and while this wasn't a trip back to New England like we would have liked...it was still pretty and good to escape the heat and stress of everyday life and home.

The aspen tress were beautiful and I everyone and his dog was up there taking pictures. I don't think I have ever seen so many tripods in one place.

I love taking pictures of roads. It reminds me of the Robert Frost poem which is one of my favorites.

today is my day off and unlike the past two Mondays that I had off, today I have kept my promise to myself and stayed in my pj's and worked on editing some of my photos. I could get used to this.

It's 2pm now and I think it's time I got up and actually do a few things around here. Can't be lazy all the time you know. I have something like 20 pumpkins to gather up and put in the garbage. All my kids were home for Halloween and they had friends over to carve pumpkins and pretty much just hang out and enjoy the beautiful autumn day. All I know is this...I had a wonderful weekend and the tired I feel today is a "good" kind.

last time you'll have to read about this

I'm done. No more doctors. No more trying to get someone to manage my care. This trip to Mayo Clinic was a complete waste of time and money. Not to mention emotionally what it did to me.
I still don't know which vitamins and calcium I'm supposed to take for my liver disease, and SIX, yes SIX doctors have been told about the edema in my legs and yet nothing has been done. I was told by the doctor here that I needed an ultrasound of my legs....they didn't order it.
Anyway, I'm sick of talking about this. I'm sick of everything. Guess they don't want to see or hear from you until I need the transplant.
Oh...and the highlights? Having the doctor give me my MRI results. I wasn't sitting in his office in a comfy chair....I was pulled over on the side of the road on a highway in Phoenix. Classy.

hi ho, hi ho, it's off to Mayo I go

At the suggestion of my ophthalmologist I went online to make an appointment to see some doctors who actually know what they're doing (I hope) in regards to my liver disease. I was quite surprised when the called me back and offered me an appointment like NOW. So, I'm going to drive to Phoenix on Sunday and my appointment is Monday. Don't think you can come to my house now and jack all my stuff because not only will the 3 attack wiener dogs be all over you, but my Chuck Norris "kick your butt" type husband will be there and so will 2 of my kids who who have been kicked out of every school in the county for fighting and are proud card carrying members of the NRA.
I'm lying of course. My husband has never kicked a butt in his entire life, and I made all that up about my kids. The wiener dog stuff was completely true though...oh, and so was the part about all of them being here. I'm going by myself. The appointment came up so quickly that Scott wasn't able to get coverage to take the time off, and since I'm not sure exactly how long I'm going to be there (they said to plan on 5 days) I just thought it would be cheaper and easier if I just drove. Plus, I can take just the snacks "I" like. Roadtrip for Ruth....yes!
As anyone knows who has accidently stumbled upon this blog for the past couple of months, I've been having a fabulous time with the medical community and my liver disease. I've been unsatisfied from the beginning and not happy about having to YouTube or Google my disease to get my information. So...let's hope that these doctors will actually be able to give me the guidance I'm looking for. Let's face it....I know I can't be cured and I don't expect that. What I do expect is a doctor or two who will actually listen and offer up some help/suggestions. Here is a perfect example of what I've been going through for the past few months. In July I told my internist and my gastroentrologist that I had swelling in my legs. Both of them told me to ask the liver specialist in San Francisco about it. (passing the buck 1) Hepatologist in SF paid no attention to me, didn't even look as I was showing him, but simply said, "It's not your liver" (buck passing 2) Swelling gets worse, showed cardiologist, "it's not your heart, you don't have swelling in your hands or feet." (3) Went to the GI for followup, "make an appointment with your internal medicine doctor. She needs to order an ultrasound of your legs." (4) a week later cuz that's the soonest I could get in to see her, she looks as I push my finger into my ankle and it looks like I'm punching down bread dough. "Yeah, that's your liver." "Um, the liver specialist in SF said it wasn't." "It is. It's your cirrhosis." "Um, I didn't think I was in the cirrhosis stage yet." "......." no response, just given a prescription for some Lasix in hopes that I can pee it all away. Me: what about my severe depletion of vitamin D? She writes a script for a ridiculous dose of vitamin D. Me: aren't I supposed to take calcium with that or it's useless? Her: yeah, you can take some. Me: well, there are different kinds of calcium and how much?
Her: any kind is fine, and just take the recommended dose.
that's pretty much when I decided that I'm in the market for a new doctor. I stole a magazine on my way out. And I don't care. And it was one I wanted too. And it was a new issue, not an old one from 1997.

So what else has been happening???? hmm, had a birthday a few days ago. Got beautiful flowers from my daughter (thanks again, Sara) flowers from my husband and other kids, and a nice night with family. I missed Sara though. :(
Scott knows I love hamburgers. He also knows that I'm pretty much wiped out all the time so he thought it would be nice just to have everyone come to our house and grill some burgers instead of going out. He talked to my mom and left money for Kris and Betina to take her to the grocery store for all the fixins'. Everyone was here when we got home and Scott went to work right away making up the burgers. I walked passed him in the kitchen and noticed he didn't have such a happy face. I looked down at what he was doing and the hamburger meat looked funky. And I do mean funky. Red on the outside, brown/gray on the inside. He points to the label on the wrapper that says,"Reduced price for quick sale". Ohh, great. Then I hear my mother tell my vegetarian kid and my vegan kid that she's going to eat a black bean burger with them tonight. Of course you are, you know you bought tainted meat and you don't want to die tonight!!!! Her excuse for buying the ball o' e-coli was this: "You know how the grocery store sales go from Wednesday to Wednesday? Well, today is Wednesday and it was going off being on sale." WTF??????? That made absolutely no sense whatsoever and she just looked at me as if to say, "Go on bitch, say something else, I dare ya, I double dog dare ya." So basically I think I ate meat that had been sitting at Albertson's for a week. Needless to say, I did not enjoy my birthday dinner. P.S., Jeff and I were the only ones who ate the hamburgers...and he doesn't really count cuz that kid eats some pretty disgusting things.


I got my eyeballs fried today...on purpose. Since the stupid eye plugs fell out and I wasn't willing to go through that torture again my doc decided to cauterize my tear ducts. Yes, it's as gross as it sounds. Remember that rhyme from childhood, "Cross my heart and hope to die, stick a needle in my eye"? Yeah, well, she stuck lots of needles in my eyes before taking a branding iron to them. I don't know about you, but I'm all about torture these days. Weirdest damn thing I've ever done, I'll tell you that right now. My eyes feel....well, burned right now. I love how she tells me, "You'll notice little black dots that look like mascara....don't rub them. Then in a few days it will look like white mucousy dots...don't rub them." eewww and gag. So of course I had to run to a mirror right away and check that shit out. She was right. The Lidocaine wore off pretty quickly and I'm driving home on the freeway thinking, "maybe this isn't the smartest thing I've done this week...driving with bar-b-qued eyeballs." It's all good now. Little pain, semi-alot of burning, and wishing I could poke them out with a stick. I was going to say "with a hot poker" but that's already been done today, thank you.

So that's my crazy life right now. there's a piece of grocery store birthday cake in the fridge that's just calling my name so I think I'm going to claim it as my own and call it a night. It wasn't reduced for quick sale so I think I'm pretty safe.

ugh...

this is not a new self portrait...although I'm feeling about this large, and this attractive. Lots of swelling in my legs and after yet another doctor appointment yesterday which proved that NONE of my doctors are taking this swelling seriously. I don't even want to get into is.
Back to Jabba
I made a peach cobbler the other night and it pretty much looked exactly like JTH. I even said that as I peaked into the oven and saw it oozing out of the baking dish onto the cookie sheet. "Whoa, what the hell? That think looks sorta like JTH." Thank goodness I had the common sense to put it on a cookie sheet or I would be shopping for a new oven right about now. That would have been my excuse to Scott. "Honey, it's totally ruined, we'll just have to get a new one." I wouldn't have wanted to even attempt chiseling that crap off. As it was, I had to soak the whole thing in the sink for hours because the baking dish would not release itself from the cookie sheet. Let that be a lesson to all of you...some recipes are not made to be doubled. I've made this peach cobbler recipe for about 127 years with no problems, and the one stinkin' time I try to double it cuz I have some truly magnificent peaches....this is what I get. I've never quite understood why that happens. Not me screwing things up, pphhtt, I can do that any time of the day or night...no, I mean the doubling of a recipe. I could have made two batches and combined them and they would have had the same amount of ingredients in them...so what's the diff? Must be some sort of magic scientific thing. Yeah, that's probably it.
My ego is bruised,my bakeware will never be the same, and I wasted some incredibly delicious peaches. Life is so unfair sometimes.

vacation time

this is where we are right now. Mammoth Lakes. I've taken over 200 pictures and got sunburned in the process and I don't even care. It's beautiful up here and I think I would love to bring the rest of our family up here for some serious snowboarding this winter. In fact, Ive already told Scott that I'm coming back in the fall to see some fierce autumn colors. So there.

this time off from work could not have come at a better time for me. Let's just say I'm giving serious thought to quitting. more on that later.

I'm all comfy cozy on this huge bed right now, relaxing and looking out the window of our hotel room at some beautiful blue sky and majestic pine trees. Again I ask, why oh why do we live in the stinkin' desert?

it's almost the "golden hour" for photography so I'm off to see what I may have missed the first time around.

Right Now

Right now:

it's 107 degrees in my garage

it's almost that hot in my kitchen

i'm making snickerdoodles

my knees really hurt

i have cinnamon and sugar on my neck

my husband is having dinner with his family

i don't think i'm having dinner tonight cuz i'm not hungry

my son is upstairs playing the guitar

one of my dogs just made a huge mess on the floor after getting a drink of water

i'm super sleepy

i'm almost to the next level in "We Rule"

my house smells like Christmas

the wind is blowing (no surprise there)

my contacts are starting to bug me

i think i may have a few snickerdoodles for dinner and call it a night

i can't remember where my card reader is for my digital camera and I reallllly need to empty it

my dogs are begging for cookies

i'll probably give them one

Unplugged and hittin' the wall

so the "permanent" tear duct plugs fell out in less than 9 days. I have to say, it was a relief to have them outta there. Stupid things made me miserable the entire time they were in. But, I'm not sure if the doctor wants to replace them or what...haven't heard back from her office and it's been 6 days now. Honestly, I'm not sure I want to have them replaced. I'm using eyedrops now and if that's what I have to do all the time, well, it's a whole lot better than having my eyes bug me all the time.
I'm not in a very good place today. Truthfully I haven't been in a very good place since last Wednesday evening. I think that's when I lost the plugs....from crying too much.
I was on the computer and I went to YouTube to see what they had in the way of stuff on PBC. I found a video from one of the doctors in San Francisco and decided to watch it and see if it offered any new little tidbits of information. She had a really nice power point presentation and one of the slides was about all the basic tests that should be done on a patient with PBC to use as a baseline for future tests. I haven't had any of them. As I looked at this guideline I became so angry...so hurt...so lost. How is it possible that I have THREE doctors who are supposed to be taking care of me and not one of them has mentioned this to me? I'm almost 55... I should probably be taking a calcium supplement for osteoporosis anyway. People with PBC have a 440% increase in developing osteoporsis due to this liver disease. I need a bone scan...who will order that for me? I don't metabilize vitamins A D E or K properly. I need to be on those supplements and have a baseline blood test to measure my vitamins A and D. Who is going to order those tests and tell me how much of these vitamins I need to take? I have edema in my legs. Never had it until recently and the liver specialist just said, 'It's not related to your liver." that was it...so who am I supposed to ask about that? ::sigh::
I feel very strongly that patients need to be knowledgable in regards to their medical condition. Having said that, I don't feel that a patient has to Google or YouTube their disease to find out if they're being treated adequately.
Anyway, I had a complete melt down for a little while and cried like it was my job. I'm so angry...I'm so tired...I'm so frustrated. Just order the freakin' tests that need to be ordered!!!
Nevermind the fact the my primary care physician's office called me recently and said I needed to call my GI doctor and ask if I can take "X" instead of "Y" and to let them know. Umm, his office is 3 doors down from yours and in the time it took you to call me, you could have called his office and left that sweet message yourself. I just don't get it.
After the tear duct plugs were shoved into my eyes, I was told to ask the liver specialist about using Restatis. Then I see the ad on tv for Restatis and the information at the bottom of the screen said "not to be used with tear duct plugs" WTF???????
I have an appointment Thursday morning for my contact lens follow-up which should be fun. They're great for close up stuff but the distance is whacked. This is my second pair, wonder if he's going to try for a third or just call it a day and tell me I need to wear glasses. At this point, I don't care. THEN....later in the afternoon I have an appointment for a cardiac stress test. That sounds like more fun than I can even imagine. Maybe the cardiologist will be interested in my swollen legs. Then again, with my track record...maybe not.

How I spent a Tuesday afternoon

This is not my eye. My eyes are green and my eyebrows are much much lighter. Now that we have that all cleared up let's carry on.

My liver disease has it's little quirks that I'm discovering one at a time. I guess the itching, the nausea and the fatigue just weren't enough. Oh noooooo....we have to throw dry mouth and dry eye in there too. So, last week I saw my wonderful eye doctor who immediately put me on some eye drops and scheduled me for punctal plugs. I giggle for some immature reason when I say that. sheesh.
Anyway, I had them inserted and it was only afterwards that she said, "You're going to be uncomfortable for a few days to a week. DON'T have them removed. Just stick with it and you'll be fine. Really, I know you will have discomfort, but it will go away. Your body will get used to them." (apparently she doesn't know my body very well) Now, I don't know about you but it has been my experience that when a doctor uses the word "discomfort" what they really mean is excruciating or unbearable or out of your mind numbing pain. While is isn't that bad...it is 2am and I'm still awake. My eyes feel very tired, and like there is a crusty eyelash stuck in the corner of my eyes. I feel like I want to take a melon baller and ream out my eye sockets. But...I won't. Mainly because I haven't had a melon baller in something like 15 years. I think my boys used it on a block of cheese once and I never saw it again. Or maybe it was a bar of soap...my memory is a little off due to the "discomfort".
Anyway, I tried to go to sleep, actually fell asleep for a little while but woke up in "discomfort" because I had my hand in between my face and the pillow and was smushing my eye in towards my nose. It was kinda like squeezing the bottom of a tube of toothpaste...pressure building up, bringing Old Faithful to mind. Hmm, wonder if those plugs would shoot out of my eye?
So now I know why she didn't tell me all this before hand. She knows me all too well.
I have an appointment for new contact fitting on Thursday morning. My poor eyes may poke themselves out before this is all over. My last try wearing contacts didn't go so well...let's just hope this guy my Opthalmologist is sending me to is better than the Wal-Mart eye doctor. That was a nightmare as I recall.

I feel as though I have every grain of sand from every beach in the world in my eyes right now. Time to go back to bed and wish for sleep to take me. There has to be a joke in there about Mr. Sandman but for the life of me I can't come up with one. Must be the discomfort thats clouding my thought process. Or the lack of sleep. Or the fact that I realize that I have to get up in less than 5 hours to go to work. Where the hell is that melon baller?

Open letter to my kids

All of you know my fear/anger at the prospect of getting old. With that said, this is a conversation I had with my mother yesterday.

Me: So, what's goin' on over there today?

Mom: Oh, not too much. Marilyn (name changed to protect dignity) got banned from the
clubhouse and the pool. I can't stand her anyway so that made my day!

Me: (remembering what a "nice" person my mother can be) What could an old lady do to get
banned from a senior citizen apartment complex pool? (did I really want to know?)

Mom: Oh, she's been told about a hundred times to quit plucking her eyebrows and chin
whiskers in the pool, and management finally had enough. I say "Good Riddance".

Me: chin whiskers?

Mom: uh-huh, AND her eyebrows.

Me: chin whiskers?


I think it was about that time that I felt faint and had to end this stimulating conversation. She did however bring it up again in a later conversation, while I was driving no less. Ick.

I do not want to get old...I do not want to live with a bunch of other old people...I do not want to have chin whiskers...I don't want to be around anyone who does...and I never want to say those two words together again....ever.

So this, my lovely children, is to let you know that if I start showing signs of....you know...you can put me on an iceberg and wave 'adios madre'.

peace,
Mom

This Face...these eyes

Now tell me, could you resist? Could you say "no" to her for any reason? Even if it meant $435?
Daisy is my baby...my first weenie dog. She was acting a little off for the past couple of days and when a dachshund doesn't eat, you KNOW somethings wrong. Yesterday morning she looked pretty sick so I left my credit card for Kris and Betina to take her to the vet while I was at work. Kris called to tell me that she had welts all over her body and that she looked terrible. Off to the vet they went.
He thought she could be having an allergic reaction to a sting or bite of some kind and did some blood work. I would really like to know how a vet can do a bazillion blood tests and get the results back in less than an hour and when I go in for the exact same things, it takes 2-3 days. Very strange....and I have insurance. Maybe from now on I should go to the vet for all my lab work. I'll have to ask about that.
So...darling hubby still doesn't know how much Miss Daisy cost us yesterday and I don't care. I know that's a lot of money, but please, again I ask you to look at that face and you tell me how you could have said, "no". It just wasn't going to happen.
She's doing much better today and I hope my sweet little weenie is wagging her tail and barking like a mad woman when I walk in the door tonight.

warning: doctor vent

ok, let's preface this with, "I have been married to a doctor for 30 years (in August) so I get how doctor's work." (insert eye roll here) There, now that we have that little disclaimer out of the way I'm going to go off on doctors again. Oh yes, I know I do that quite often, and I'm likely to continue to do so. Well, let me say that I really like my GI doc and my primary care doc, and oh, let's not forget my new cardiologist. So, let's move on to the new guy I saw today. The pulmonologist. Today was a waste of a $30 co-pay and time off work. I pretty much shut down when the guy was listening to my lungs through my polyester blouse. Is it really that difficult to have a patient put on a gown, or hell, even move the clothing enough to get a really good listen? I'm telling him how I cough every time I take the first bite at a meal. "Well, you're just getting over a pretty bad cold so..." "No...it's been happening for over a year now and has gotten worse." No response. Then his phone rings while I'm answering a question for him. He proceeds to answer the phone, cutting me off mid sentence and talks to another physician about a female patient. I'm sitting there becoming more livid by the minute and after discussing this poor woman who has multiple things going on with her at the present time, he finishes his call and doesn't even say, "sorry".
"So...how do my pulmonary function tests look" (took those last Friday) "Did you notice in my medical records that I was just diagnosed with Primary Biliary Cirrhosis?" "Is it true that a dog's mouth is cleaner than a humans?" I didn't get a lot of answers.
I'm supposed to give my meds another 3 weeks and see if they take care of all this coughing/choking and then return to his office. We'll see. Oh....and the other day, I went to the pharmacy to pick up my refills and they wanted to charge me $90 for Advair. This stupid little "puffer" and they want ninety bucks. "We think that's fair." So I asked her how much it would cost without my wonderful insurance and she says, "210" pphhht. Let's just say that little jewel didn't come home with me. And people don't want health care reform???? Look, it's not working the way it is, something has to change. Seriously, 210 for a two-week supply of a puffer. And for those who really can't afford it they can possibly have a serious asthma episode and end up in the ER and we all know how much THAT will cost. :::shaking my head::: I just don't get it.

Changing the subject drastically...did I ever mention that I would have made the worst pioneer ever? It's so true. How hard is it grow radishes for crying out loud? Apparently pretty difficult since I can't seem to do that. I had one lemon on my tree just like last year and tonight when I went out to water my plants,it had jumped ship. My pepper plants still don't have any peppers on them,I had one green bean, my green onions are microscopic, the squash is squashed, the carrots are miniscule, the pumpkins haven't even bloomed yet, the cucumbers are lazy and refuse to grow, and the watermelons are a figment of my imagination. But...I do have tomatoes. Not a lot, and I'm not holding out any hope of them ever reaching maturity, but at least they're still hanging in there. I really suck at gardening. But then, I think we already knew that. That's what grocery stores are for my friend, and that's where I'm off to right now, to buy stuff other people get paid to grow.

it's sunday night

and I think I just might live. Seriously, I was down for the count for 4 freakin' days with this crap. I'm pretty sure the only reason I'm even feeling remotely like a human being today is because my dear sweet husband made me take some Prednisone. I hate that stuff, but it's doing it's job and I actually got up out of my death bed and made vegetable soup for dinner...AND did a couple of loads of laundry. I know....unbelievable! ahh yes, better living through pharmaceuticals. Yes indeedy. That should be the name of my blog from now on since apparently I am going to be on "a few" now for the rest of my life. Fabulous. That just reminded me that I hadn't taken my nightly dose so be right back. I'm sooo not used to taking this stuff I may have to put an alarm on my iphone so I don't forget. One medication I have to take on an empty stomach and the others are with food so ugh. I hate breakfast. Loathe it in fact. But, it seems I need to make a few other changes in my life now as well. It's all good. One of the meds I take leaves a metalic taste...like I have a mouth full of quarters all the time. Just an FYI....NEVER EVER drink orange juice when your mouth already tastes like the inside of a piggy bank. Just sayin'.

Tomorrow is offically the first day of my vacation. yippy. I get to spend it at the ENT's office for a follow-up on my weird esophagus thang...and then the cardiologist. Now, doesn't that sound like THE best way to start a vacation EVER??? Of course it is. Lord...I'm turning into one of those old people I swore I would never be...the ones who constantly talk about their health problems and their lab results. Ugh. Sorry. This is just all so new to me right now I'm not sure I've really come to grips with the severity of it all. Sometimes in life it's good to have a child-like mind.

Our garage door opener went out on us the other day and we had to shell out a ridiculous amount of money to get it replaced. I hadn't really paid any attention to it until I went out in the garage today to get some stuff out of the fridge. I saw this thing and it's telling me the temperature inside our garage AND the time. Ok. That's really important. Why? Then Scott hands me the remote and it has 3 buttons on it. He looks at me with a look I can only describe as "surrender" and says,
"You just push the *1*." "Ok, what are the other two for?" "Bigger garages than ours." "So why couldn't we just get your basic garage door opener?" well, the conversation kinda went downhill from there. Apparently I hit a nerve. I tend to do that alot, huh?

Oh, and it's 109 in our garage right now.

12 days off....wwwhhhheeeeee!!!

Our Williams syndrome research clinic is over! It's so much work for me that I'm totally exhausted by the last day. Our grant money is gone..bye bye... and I had to make sure our families were fed and watered so I got to take a day off from work for using my own money which they can't/would never pay me for. THEN, since I worked Saturday and Sunday I got to take 2 comp days. THEN, I have a week of vacation next week. Sounds absolutely wonderful, does it not? Well, I sat next to my boss for 4 days who had bronchitis and guess who got it too? You would be correct if you guessed that it's me. Of course it's me. Sooo...I've wasted two perfectly good days of vacation time being sick. I cough like it's my job, and my asthma medications aren't working. My voice is so deep, I sound like Darth Vader. "Ruth...the asthma is with you." It pretty much sucks. Plus, I haven't had any sleep for 3 nights in a row and I'm a tad bit cranky. Ok, so I'm totally rocking the "don't even look at me" mood. Poor Scott made the huge mistake tonight of saying, "I know how you feel." the words had barely left his mouth when I exploded. I think he's going to sleep upstairs in the guest room tonight. I told him that would be a good idea since I didn't want to keep him awake with my coughing all night. He agreed, but personally....I think he's very, very afraid of me right now. As well he should be.

I came home from work Tuesday afternoon to find that Charlie the wiener dog had channeled his inner cat skills and jumped up on the bar stool and onto the kitchen counter and ate an entire foil wrapped loaf of banana bread, AND, he also ripped apart a brand new bag of dog treats and ate all them too. I seriously doubt that he shared any of this with his brother and sister. I really would like to put a camera up to see when he does this. This isn't the first time either. He did another bag and treats a few weeks ago and a whole loaf of homemade bread. You'd think I never fed him by the way he acts. Makes for some interesting poops in the backyard, I'll tell you. So now I'm trying to train everyone to pull the barstools waaayy far away from the counter so he can't get up there again. Who knew? It was a great day in other areas as well. The garage door decided to stop working, one of the "cells" in our Select Comfort bed decided to blow up. Looks like a huge blister sticking up. I'm just glad it's on Scott's side of the bed. hehe.

I'm going to San Francisco at the end of July to see the liver specialist. My appointment is on a Tuesday and I'm pretty sure I'll need to be there on Saturday before hand just to make sure I know where to find the place. Guess that means I'll be able to run around and take a million photos. Just exactly what the doctor ordered. Well, I haven't even met the guy yet but I'm sure he would if he knew I was going stir crazy here in the stinkin' desert. Speaking of which, summer is offically here with temps in the low 100's. ugh. It's only going to get hotter and I'm going to only venture out into the dizzying heat when I absolutely have to.

Well, I just chugged half a bottle of cough syrup (just kidding) and I'm going to try to go to bed and sleep.

even with not feeling so hot...it's great to know that there's nowhere I need to be besides right here in my own home with my petrified husband and bloated wiener dogs. Life can be good.

and so it goes

for those of you who see me in real life....yes, I'm glowing. No, I'm not pregnant, and no I haven't been tanning. It's actually a radioactive glow from all the x-rays I've had in the past 2 months. I think it's a sad day when I walk into the radiology office and the front desk girl knows my name before I even sign in. Something just so wrong about that.
So, yes, I'm glowing....and apparently they're 98% sure I have a rare disease called Primary Biliary Cirrhosis. There are two other overlapping diseases it could be but for now they're betting on this on. This is Vegas after all.
Am I freaked out? yes. Am I scared? pretty much. Am I glad it wasn't cancer? well, duh. When all is said and done, I'm ok with it. I mean, what choice do I have? I've certainly had my pity party and now that it's had a chance to sink in, I just shrug my shoulders and say, "oh well. could have been much, much worse."
I'm waiting to hear from the liver specialist in San Francisco and in the meantime I'm just thinkin' about stuff and wanting to travel and take pictures. HA! don't we all.
I started taking the one and only FDA, TSA, BSA, NBA approved drug for it so lets keep our fingers crossed that it works, ok?
I have a huge Williams syndrome research clinic coming up in two days and frankly, I'll be glad when it's all over and done with. They are exhausting to say the least and I just don't really have the energy for it this time around.
BUT....I actually have some time off right afterwards so I plan on taking pictures, baking cookies cakes and pies, and if I'm lucky, not doing much housework or grocery shopping.
So there you have it...my liver and I thank you for all your well wishes.

life imitating art?

I love movies and books. All kinds. Fiction, non fiction, documentary, drama, action, romance. You get the idea. I’ve even been known to watch really crappy movies more than once if the location/scenery is interesting. Case in point. I don’t think Sleeping With The Enemy was a ‘bad’ movie, I just had a tough time watching it without saying, “Oh sure, anybody can just hand over a wad of cash and rent a house without references or a credit check.” Or, “Yeah, right, she got a job without having to produce a Social Security card.” But, it was the little house that she rented that gets me to watch this movie every time it’s on. I love the house. It reminds me of my grandmother and much simpler times. I bring up the subject of movies and books because today I have an appointment to get the results of my liver biopsy. Don’t you always associate movies, books, and cute little houses with life altering doctor appointments? Sure you do.
When I watch a movie or read a story about someone who was just minding their own business and one day they receive not so good medical news I’m always curious as to how I would take the news. Would I be the Rock of Gibraltar and calmly look at the doctor and say, “Ok…so what do we do now?” or would I immediately start vomiting all over the place taking time out of course to shout, “NO, NO!!!!!”, or would I faint dead away and have to be revived or just sit there frozen…tears streaming down my face? I guess I’ll find out soon enough. We’re 98% sure what it is that I have but it’s the progression of the illness that we’re waiting to find out about. Basically, we have no idea how long I’ve had this. The only thing we know for sure at this point is that 2 doctors have told me they have never seen a patient in their careers with an alkaline phosphatase as high as mine. WOOOHOOO! Now that’s really something to be proud of, don’t you think? Wow, I’ve always wanted to be remembered for something, but having a “career high alk phos” wasn’t exactly what I had in mind. Go figure.

So….I guess I’ll know by this afternoon what I’m made of. I hope I’m the, “yikes, that frickin’ sucks but what do I need to do next?” type of person. I’m sure there will be tears…I cry at Hallmark commercials. I just hope that I’m able to suck it up and do what needs to be done without drama. I’ll leave you with this…..even if you’re feeling fine….go to the doctor for a checkup every year. When I went to the ER in December for chest pain, if they had ordered a simple chemistry panel they would have seen this. But, as it was, they ordered blood cultures that were totally unnecessary in a patient without fever and so there ya go. See, I’m still bitchin’ about the blood cultures. So much for ‘no drama’, huh? Anyway, that’s all I have for now. My next post will be about puppies, rainbows and unicorns...maybe.

what i know...and don't know

this is a picture of a human liver. I used to have to eat calf liver when I was a kid because I was anemic. I hated it. I used to try and hide it in my mashed potatoes or stash it under my leg while sitting at the table, always aware of my mother's eyes in the back of her head. Sometimes I would even pretend to cough and spit it out into my napkin. Rarely did I get away with any of these acts but I had to try. I mean, c'mon, it's liver for crying out loud. That shit is nasty. But I digress......

If you read my crazy sleeping pill induced ramblings from a few weeks ago, you know that during routine lab work it was discovered that something is wrong with my liver. I don't drink and I've never shot up drugs. Soooo....we're on a journey to find out exactly what my diagnosis is and what can be done. A few things have been ruled out, but it looks like I'm going to have to have a liver biopsy to get to the bottom of this. The few remaining things that it can be are not particularly good, but then again, some of the really, really horrible things have already been taken out of the equation so for that, I am grateful.

I've been poked, proded, x-rayed, CTscanned, ultrasounded, endoscopied,colonoscopied,biopsied and barium swallowed half to death. And then my doctor takes off on a two week vacation. Thanks. So...I won't even see him again until the 12th of May to see where we go next. Personally, I'm thinking about going to the Mayo Clinic in Phoenix....or the University of California at San Francisco for another opinion, even though I don't have a definitive diagnosis yet. It never hurts to go to San Francisco for any reason as far as I'm concerned. My camera is gathering dust and I think it would be good for me to get out and snap some pics.

But the good news is this.....there was a bakery not far from my home and once upon a time I worked there a few days a week with the hope that I would learn some mad decorating skills. That never happened but the other night I was driving past the bakery and noticed a new sign. It was for another bakery. Well of course I had to stop and be nosey to find out what happened to the former bakery. I met the new owner who is a total sweetheart, just trying to live her dream. I meet her husband and he tells me I look familiar. Like I don't hear that a hundred times a day. I always want to say, "Oh, you probably recognize me from Little Darlings "(strip club) just to see the look on their faces. But I haven't had the nerve to do that. Maybe some day. Anyway.... Turns out we worked together a million years ago. I still can't believe that he remembered me. One thing led to another and I'm hanging out in their bakery making goodies like the crazed woman that I am. It's one of those win/win situations. They need help in the kitchen, and I need help with my sanity. They're allowing me to go into their kitchen and bake anything my heart desires for them to sell. They thank me for my generosity. I want them to succeed because they truly are nice nice people. I can't thank them enough for letting me do what I love and escape my thoughts for a little while. Sounds like a good deal to me. Don't you think?

News will be posted when I know more....but in the meantime....be good to your liver.