Sometimes, I scratch my brain with a knitting needle.... I'm weird like that.

The Story....

Okay, so I got sick. Just like everyone else that has one of these diaries. It seems like PH is one of those strange things where nothing is as it seems. It just, is. They only know so much about it and half of what they think they know they aren't all that sure about.

Maybe I should step back. My story is simple but complicated depending on how you look at it. When I was a kid I was told I had a heart murmur. Because of that, I always dismissed any funny feelings I had from my heart. When I was first in highschool I started having problems breathing, the doctors at first said I was faking because I wasn't wheezing. Later, when I was very very sick, they would say I had Asthma. For years life was routine with that, until I got pregnant.

With my pregnancy came even more SOB, which didn't set me off much because I was used to being SOB. When I gave birth to my son via emergency C-Section, I got very bad edema. I had edema up to my belly button. The doctors dismissed it and me. The edema in my belly made me gain 2 whole womens sizes. From totally pregnant to no longer pregnant a gain of 2 sizes. Strange. No one would listen to me. I feared for my heart but after 2 different doctors told me not to worry about the edema, I slowly watched it recede and kept my mouth shut. It took over six months for the edema to noticably go away. The SOB continued.

My SOB has gotten worse and worse since my son was born on 2/14/2003. Finally I asked for asthma steroids. I bought a treadmill to get more excersise. I thought all of that would help. My SOB got worse. I began to notice strange heartbeats. Ranging from just fast, to irregular, to added beats, to thumping hard enough to move my breast (I do not have little bitty breasts either....). Finally I decided I'd rather face the truth that something was wrong with my heart, than suffer like I was any longer.

After a bad EKG with the GP doc, I go see a cardiologist. It turns out I have a large ASD (atrial septal defect), he tells me he wants me in for heart surgery within 2 weeks. During the 2 weeks until surgery, I was to have a TEE and a RHC. The TEE showed my ASD to be even larger than was originally thought. It showed one side of my heart is enlarged quite a bit, one side is very underdeveloped. It also showed that one valve leaks. Nothing too exciting. The RHC however, was a totally different story. The RHC showed my PAP at 119/57 (79). Very high. My cardiologist sent me to UCLA medical center to see Dr.Laks, a bigshot heart surgeon. Laks said he couldn't do anything for me, and sent me to a PH Specialist, and here I am!

Ho Hum. So now I wait for my Tracleer and Viagra, which my insurance won't pay for. My husband dies a little death every time we go to bed or he leaves me, because he doesn't know if it's the last. Life Is Very Hard Right Now. My parents have no idea what to do with me, my mom alternates between imagining my death and ordering me around like an automaton. Dad is terrified, thinks I should be on a transplant list right now, would probably give me his if he could. He's not handling it that great. My sister is kinda cool. I think she might be in denial. She has her own problems and kid though, so that makes it hard for her to deal with my stuff too and I respect that. So my support system is a little unstable - except for all the friends I've met here on PHcentral.

For now, I'll sign off.... Say my goodnights.... This post is long anyway and probably boring.

-B

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Halloween (not really, this is back dated)

For Halloween my brother in law came over with my niece and we went trick-or-treating. By we I mean my brother in law, my niece, myself, and my son. My husband had to work later than normal and if I hadn't of taken my son he wouldn't have gotten to go.

My Brother In Law was very understanding of my situation and we took our time. I know a lot of people are reading this thinking I'm out of my mind but I wasn't about to have my son miss out because his mom is sick. I went slowly, I managed, and after 2 hours and returning home to eat pizza I was done. I could barely find the energy to get in the car and go over to both his respective grandparents' houses so they could see him on Halloween. As a matter of fact on the way home (a 7min ride at most) I fell asleep in the car.

The good news is the kids had a great time, I survived (though horrifically exhausted the next day), and I got a bit of exercise. Go me!

Now I'm going to see if I can upload some pics of the booger on Halloween... I swear in the one pic I have no idea why he looks so fat. Probably because his uncle took it standing above him and my son was cheesing hard. lol (Okay I can't upload so lets see if HTML works)

Take Care all...

Eat your children's candy- but only when they aren't looking!B.

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For Shame

So here I am over a month since I asked to have a diary and I only have one entry (not anymore because I added a backdated one for halloween...hahahaha shame on me). What's up with that? The little evil ducky that lives in my bathtub says it's because I'm a jerk, my professors say it's because I'm doing my assignments (yeah, they have no clue), my wallet says it's because I've been shopping, and my body says it's because I feel like hell. In truth, it's a combination of connectivity issues and lack of motivation to do almost anything........ Oh welcome PH evils.

Just as a sidebar, if you haven't read any of the "Life with Flo" series and could use a giggle over the pain-in-the-butt that PH could be, I recommend it. I never read it because I'm not on Flolan but I got curious yesterday. I must say, Flo and Karen are some damn funny ladies. You can giggle and cry along with them at the same time. It's wonderful to meet people with PH that have a sense of humor about their situation.

Recently, I've been having fun likening my situation to all kinds of things... When I'm short of breath I have described myself as -- the oldest lady on the planet, a wookie, a dehydrated dog with it's tongue lolling, a deflating tire, a week old helium balloon that floats midway between the floor an ceiling, a cat after a night of alley fighting, and all kinds of other things..... My husband laughs at most of it, but drew the line when I said that between being on O2 and having shortness of breath at the same time I sounded like Darth Vader. He just gave me an icy incredulous stare. Take that DH I told them about the mean look you gave me. :( LOL

I'm trying to work on something for the National Novel Writers Month - It's about how sadistic PH is... well not really. It does have to do with PH though. I wonder if I'll make the goal. If you want to know more about this you can go to NaNoWriMo.

I guess I should update everyone on what exactly my issues have been.

1. I moved- always a trial but different still when you have PH. I do not recommend it. a) You feel like a butthead because you can't do anything. b) You look at the boxes incredulously, wondering exactly where all that crap came from and who exactly would notice if you paid some people to come in the night and take it all away. c) You find yourself wondering how your DH could ever still want to be with you after moving 5 bookshelves worth of books that must weigh a ton, all of which you want to keep but figure you'll probably never read again.

2. College - College sucks and I dropped some classes because I was overwhelmed. It is hard to admit that however I didn't drop them all. For that I feel like a deserve a pat on the back.

3. The Ugh Bug- If you have PH, you know what the Ugh Bug is.a) The ugh bug is directly tied to being able to sleep and not "over doing it". This means the Ugh Bug is a frequent visitor to my household. b) The Ugh Bug is non-discriminatory, you can have the Ugh Bug for several days in a row, which results in feeling worse because you have achieved nothing, this usually means you will have the Ugh Bug the next day.c) The best cure for the Ugh Bug is watching someone do something simple for you that you know beyond a doubt you should have done yourself - but you couldn't convince yourself to do it. These things can range from doing dishes or laundry to something as simple as changing the toilet paper roll (after all, I live with my hubby and my son, how often could they really need toilet paper anyway?). d) The Ugh Bug does not listen to advice. You may tell others the best way to get rid of the Ugh Bug, but where it might help their Ugh Bug, because you said it, your Ugh Bug ain't going no where, no way, no how.

4. Computers Suck- a) It is very hard to connect to the internet if your connection is as faulty and untrustworthy as Courtney Love after a party that lasted til 6am. b) You have no clue what your PH login is because you have it saved on a different computer. c) Your son thinks that the computer should be used for things like Noggin.com and NickJr.com only. This means if you sit in front of the computer in his presence he's going to make you so crazy you won't remember what you were trying to do online anyway. d) You do not have the energy to sit in front of the computer for more than 5 seconds at a time. This means you're likely to check the bank accounts, answer email, and maybe just maybe read your horoscope (horoscope reading is good for the PH soul, especially if you go somewhere that has ones that are positively ridiculous like this one or better This one, that offers lots of silly things to make you smile, or at least roll your eyes so hard they get stuck for five minutes and you look so ridiculous that people laugh at you).

Here's a silly horoscope for me for today! Taurus (April 20 - May 20) You will finally get the television exposure you've been wanting, by organizing a group of protesters to block the entrance to a physics lab, holding crudely-lettered signs saying "Down With Gravity!."

On the Medical and PH side of things one could say all is not well in my world. Although I had a hilarious Cardiology appointment since my last writing -- medically the world is grey, at least today.

The Cardiology appointment was funny because the Cardiologist was clueless. Not only was he not familiar with PH but he didn't even read my chart. He referred to my ASD as small, and when I said, "3cm is small" he said "OMG It's that Big?"...No, unfortunately he wasn't being sarcastic, he was really that clueless. On top of that the appointment was at UCLA so they had a student in there that was like the most ditzy chick I've seen since high school...(well okay, not really but she was in the top five). I spent the entire time feeling like a freakshow, especially when the brought in some old man that sounded like a wheezy antique bellows (read: his lungs sound worse than mine, he looks like a wrinkled prune, and scares me more than the dude in the wheelchair in the movie Hannibal). At the end of the appointment, Little Miss HappyPill gets all excited and says in a high-pitched 15 year old girl thatjustgotaskedtoprom voice, "Oh OH did you tell her!? Did you tell her she shouldn't get pregnant!?" To which, I'm sorry... I know you all think you should be nice to the medical professionals (yeah... I'm lying I know), I was forced to say, "Are you fricking stupid? Of course I know that. I don't want to commit suicide you know." She looked like a deflated balloon, and shamelessly, I felt better about the entire visit.

Beyond that, NORD finally approved me and I finally got my Tracleer. With plenty of trepidation I began treatment. I have headaches and jaw pain as my side effects (so far). I do not feel any better, but have been on it exactly 2 weeks today, so I will give it time. Revatio is still pending. Unfortunately I was denied because my penis isn't flaccid enough. Damn. Oh wait, I don't have a penis, so how could they expect me to have problems with my erection? Welcome to the stupidity of Insurance companies. Seriously, I was denied because I don't have a history of erectile dysfunction. I'm considering writing a letter saying, "I cannot achieve an erection, which means I have an erectile dysfunction, however, that dysfunction is solely the fault of the fact that I do not have a penis. Please advise on what medications can fix this problem. Thank you."

Right this minute I am 3 days into my first "cold" since my Dx of PH. I have already gone from sniffles to hacking up enough sludge that could probably have already filled a large mayonnaise jar. Don't worry, I'm not really measuring or anything but I do swear yesterday morning alone, that first hacking fit that lasted a good 15mins had to have been at least 1/4 of a cup. Okay.. Yeah, that was gross to say. I am used to getting very very sick very very fast. However, now that I know I have PH I'm pretty scared. When I supposedly had asthma being sick scared me because doctors were always telling me, "You know, you can die from asthma." Now I have PH which technically I'm already dying of, regardless of being sick. PH Doc said to make sure as soon as it turns into something other than a "cold" I get some antibiotics. UMMmmmmmmmmmm, I'm not a doctor, so how am I supposed to know when that transition is?

On the PH front, aside from the Tracleer, being sick, and having a cardiology appointment--I had a sleep study. They wanted to make sure I didn't have sleep apnea. Okay... Let me start by saying I hate, really truly hate, sleeping in strange places. Even hotels and stuff I have a very hard time sleeping. Now combine that with the idea that someone is watching me and paying attention to my every breath and every twitch. Now add to that the fact that I do not ever get 8hrs of real sleep and add the fact that they told me I had to be asleep for at least 6 of the 8 hours I was there. I laughed. I have never before felt guilty about not being able to sleep before. I found myselflaying there lecturing myself on not sleeping. Needless to say the entire thing was awful and the last time I woke up, I laid there until the technician came in and then I asked to go home. To hell with sleep studies.

I also had another PH appointment. The PH appointment was fairly unremarkable. He had not received my information from the sleep study people, still did not know what I was talking about regarding an exercise test I said I had, wanted me to have my first set of routine tracleer labs. I did get him to fill out a thing for me so I can have good parking now. LOL Yes, I mean the plaque thing. I was nervous about asking so I started to ask and he cut me off saying, "Absolutely, you definitely more than qualify, just get the forms." As he was saying "forms" I whipped open my purse and presented them. Now I have to find the energy to get to DMV. I wonder if I can park in the handicapped while I go get my handicapped plaque. Probably not. Wow, according to the state of California I am handicapped. I didn't think of it that way until just now. I'm not sure how I feel about that *queasy* I guess I'm glad though because it will be helpful even though I don't want to be thought of as disabled. Hmm, I will ponder this. Anyway... also during my PH appointment I had another 6MWT. In Aug my walk test was 300 and something meters, like 330 I'm pretty sure. This time it was only 210meters. Before the test I explained to Doc that I was getting more dizzy than before and had more incidents where I had been running around a lot and then sat down and started to fall asleep. He asked me if I was feeling worse and I shrugged. He said a walk test. I let him know that I was getting sick (this was the day I started sniffling) and that I felt I was having a "PH down" day. Regardless of my excuses around my 6MWT, the Doc and his assistant were wincing at my results. Oh well. *sigh* I suppose I could have killed myself forcing myself to go harder/longer/faster, but last time his assistant chided me for that. Ugh, we'll see.

So anyway, on the Med front, I'm on Tracleer, I got a parking thingy, I was denied for Revatio because I don't have a problem getting my weenie to respond (hahaha that is so funny if you are as dirty minded as me), my walk test results were not good, and I'm sick.

Thanks for reading.. I'll try to be more diligent... and as always feel free to email any comments.

Remember! Sometimes you deserve to make people stare at you for a good reason instead of because you are breathing like a rhino in labor. This can be done in a great many ways. My favorite is to stand in the children's clothing section, holding a tiny outfit and arguing on your cellphone (not actually calling anyone, mind you) that you're positive it will fit the midget you hid in the hall closet and if the person on the phone would just go measure you'd be grateful. Be insistent. Make sure you repeat midget, locked in closet, duct tape and other strange phrases like that several times. Take Care,B.

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You may not want to read this... lol

OKAY...

Well... Um...

For starters *clears throat* I feel like doggiedoodoo today, coughing stuff up, very tired, trying to be a good girl and kick bad habits....

I am some what proud of myself. I achieved a great many things today! No seriously!!! I did the dishes *go me* I put away 4 BASKETS *not loads* of laundry and I even fed the dogs and cats! *beaming*

And imagine all this while trying very hard to cough hard enough to see this hypertensive pulmonary artery myself. After all, why should I take everyone else's word for it? I figure, if I can just cough up enough goop, eventually I'll get to the good stuff. *incredulous look*

Do not ask me why I did all that... I also.. get this... Showered, exfoliated head-to-toe, shaved my legs *you better be sympathetic, you know how awful that is*, and even managed to lotion up afterwards.

This is probably all why at this point my entire body hurts from my VERY swollen legs (tingly and feeling like my skin is stretching), to my head where I have a roaring headache. My arms hurt like I've been pumping iron; my chest feels like an elephant is sitting on it, there are also those sharp little pains from coughing too much... My nose is sore from blowing it so often. My throat hurts from coughing... My ribs and back are SO sore from coughing... Yeah.. I hurt... and I hurt when I started.

Reviewing my day I finally understand why everyone keeps telling me to slow down. This is not my normal day mind you but it did include my normal things like: playing with my son, making my son lunch, taking care of my various apparatus', phone calls, straightening rooms...etc. I feel like garbage. I am certain tomorrow will be a down day, I can already feel it. The problem with that is that tomorrow is Monday which means DH is working and also means I have class.... Ohhh someone help me please.

I do not want to hear anyone complain that I was harsh about my mother in law. If you have a problem with it I will be more than happy to site a list of reasons why I said those things and my husband is more than willing to back me up, so there.

Okay, I'm done ranting... I'll go to bed now.. after all I deserve some sleep at this point. *yawn*

May all your days be filled with joy even if you feel like hell...and just incase you wanna extra laugh? Try wearing some really fuzzy socks on your ears when you get the mail from the mail box. It's guaranteed to freak your neighbors out....(If you aren't sure if your neighbors are home, wait until the school children are walking home...if you live in a rural area, set up your webcam and go to a dirty chat room telling all you have something yummy you want them to see....flash cam for 45seconds, then disconnect and laugh...oh and make a fake login for this...)

B. Hayes

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Doctors, Rx's, & Side Effects

Dear Diary,

Hubby wouldn't let me go to school last night because I was hacking and looked like death warmed over. He made me go to Urgent Care and my Reg Doc was actually doing urgent care. Go me...... Well... maybe not.

I've found yet another side effect to PH...

You can freak people out, even your GP!

*sigh*

Yup, he said he didn't feel comfortable treating me because he's only ever seen one other person with PH but if I saw the Internist in the same office then he would be okay as long as everything went through her first. He said he's terrified to give me anything between the PH and my heart. He said he's read a lot on PH but that it was pretty freaky to be looking at someone as sick as I'm supposed to be and seeing someone that you would generally consider healthy except for a mild resp. infection and shortness of breath. I said, "That's what's so fun about having an invisible disease and a very bad previously undiagnosed heart condition that can kill me." I was feeling very sarcastic. He sent his nurse to see if he could get me in with the internist today and while she was gone he started talking to me again.

He started with, "You're not mad at me for being afraid to treat you are you?" Which... I didn't have a good reaction for; I should have run away.... I've always been stoic.... BUT when the first Doctor you ever liked in your entire life says something like that to you... what the heck are you supposed to do? So, like any girly woose, I started crying. Not like sobbing really, just a little crying. He said it must be so hard for me being my age and having my son and yadda yadda and I'm just sitting there thinking "I love you as a doctor but if you don't shut up you're really going to have me in puddles and I'm already embarrassed so could you please stop." I didn't say all that.. Luckily I was saved by the nurse coming back.

So yeah, I freaked out my GP. He is standing there going "I remember when you had the EKG... I never expected all of this." I informed him that the cardiologist he sent me to didn't even anticipate anything like PH.

So, this AM I had an appointment with the internist. Now, My GP is part of a medical group, and there are 2 main buildings that run by one main reception but several doctors seeing patients and an urgent care and then the second building is mainly the lab. When I got there the receptionist nurse argued with me about the fact that I saw my GP in Urgent care (she didn't believe me), that I had an appointment with someone else, and basically that I had half a brain in my head. Finally I got snotty and said, "Look, you're wrong. I don't know what you're looking at or trying to do, but I saw (My docs name) last night in Urgent care. He made the appointment as an add-in and told his nurse that if that doctor complained she needed to take it up with him because he could explain. He also told me that this doctor is an internist. I do not remember the name, he said it only once and I've never seen the person before. You need to find the nurse from last night and talk to her unless Doc is here." She got snottier and was like, "I don't even know what nurse was on." So then I got REAL snotty, "Is he here?" "Yes" "May I speak with him?" "No, he's busy with other patients that have waited." "You know, I waited last night. Go tell him Brigitte Hayes is here and that I want to know who the appointment was supposed to be with because now I'm late and it's your fault for refusing to listen to me." "Well, I can see if he remembers someone from urgent care, but he's not going to remember you." "Lady, don't even start with me, I'm already irritated, he remembered me last night from JUNE, he's going to remember me from last night and chances are he's going to remember me for a long damn time. Go ask him where I'm supposed to be." "Fine but don't be surprised if he doesn't know. I'm sure he just told you to return to urgent care." "I'm sure that your job is to find out who my appointment is with and not try to guess at it, so I suggest you go ask Doc before I go find him myself."

Less than three minutes later, she comes back, "Oh your appointment is in the back building where the internists are. It's with *name removed*." I could have clawed her eyes out. I told her originally and during our debating that the appointment was supposed to be with an internist. She wasted 20 minutes of my time being a pain in the butt just because she could. She could have said at any time "If you're supposed to have an appointment with the internist, it will be in the other building." NOT to mention, she could have called the other building and asked. GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

Sooooo, anyway, as I'm hauling my sick butt the length of a football field to get to the back building, I hear my Doc somewhere behind me asking if I was still there or if I had left or had walked to the other building already. By the time I signed in at the other building he was behind me. He told me he was going to go talk to the other doctor about me. Who knows what they talked about. Either way, when he was coming out from talking to her, he was like, "Yes, she's waiting, she wasn't late, they made her late at the other reception." Which I thought was nice considering by that point I was over 30mins late.

Long story short, this other doc is real nice. Compared all my meds. Asked what the hell Tracleer was and for the spelling so she could look it up. Didn't know Revatio had hit the market. Didn't want me on Migrazone/Midrin anymore because it's a vasodilator (no one has mentioned this before). Other than that she says she's more than willing to learn. This is a good thing. I spent an hour with her. Mostly explaining my situation and previous situation. She sounded a little amazed that I self diagnosed myself with the original problem. She said I know more about my disease and health situation than a lot of people. She said she'd like to learn more so I referred her to PHCentral and PHA.org. I told her both can be very informative. She says she's going to look into them.

I got a new pain killer that I've never had (that doesn't seem to work), a higher dose of Levothyroxine, and an Rx for a Pulse Ox. I have to call my insurance tomorrow to see if they will cover the pulse ox. I'm really hoping they will because I can't afford to pay for one out of pocket.

Since I was out I also went to DMV to get my parking thing... grrr...(I had the shortest DMV visit in history to actually go and achieve something! 7minutes!)

On other fronts, my husband has been taking my cellphone with him since he got his new job.....He also seems to have spaced my doctors appointment that was his fault....Problem with all of this? He left this morning for work, kissed me goodbye. He called several times throughout the day starting at 1130am and stopping at 515pm. During this entire time I was unreachable. I spent nearly 2hours total at the doctors, then went to pharmacy, then to lunch, DMV, back to pharmacy, card shop *stayed in car*, bank drive thru, book store, sat in car while sis got my niece...swung by sis' house then came home.

This generally would be "ok".... Evidentially, either because of my PH appointment last week or my resp. infection this week, that is no longer okay. Poor hubby was stressed and scared to death when he finally walked in the door from work. He didn't really say anything, but he certainly had the look. I felt very bad. I considered trying to call at one point but I figured if he was freaked out by that point, calling wouldn't help. I should have called. I feel so so so so so bad for doing that to him. He has felt so awful just because he has to work and I'm this sick. My not being reachable was very bad. I feel like a schmuck. (not literally, that's just gross).

Other than the side effect of freaking out your PH and helping educate another doctor.... the Tracleer is not being nice to me, at least not right now while I'm sick. Almost every day that I have been on it I've had headaches... I've also 4 times had excruciating jaw pain. Today I have fuzzy head from being sick, a headache, and jaw pain. I am making an effort not to pass out or something. (I did conk out waiting in the car while my sis took my son to pick up my niece from her classroom)....

The only other thing on my mind is DayCare/PreSchool. I am so tired of people giving me that look when I say I am the primary day time caregiver of my 2 year old. I do not have fainting spells, I get around, we play, we read, etc. I am there in full capacity for him even if I feel like crap and am tired. My husband and I originally said when my son turned 3 he would go to preschool and I would go back to work full time. Now, I'm probably not going to go back to work full time....ever.... but why do I have to put my son in preschool now?

If one more person says, "Oh hon, it isn't about you being sick, it's about him. He needs to get out, be with other kids, etc." I'm going to vomit. No one was concerned about this before I was diagnosed with this stuff. No one was even really pushing it before last week!!!! So why now all the sudden!? Does someone know something I don't? Using his wellbeing as the excuse for it really gets on my nerves. Why can't they come out and say, "dude, you could so use a break and it's just a few hours and few times a week. Consider it special mommy nap time. You'd so benefit and he'd have fun." Maybe I wouldn't be so defensive and so hell bent on not giving up the ghost. I am at a point where the next person that says something about it, just might find themselves getting bit.... *Grrrrowl*

No longer mourn for me when I am dead
Than you shall hear the surly sullen bell
Give warning to the world that I am fled
From this vile world, with vilest worms to dwell.
Nay, if you read this line, remember not
The hand that writ it, for I love you so
That I in your sweet thoughts would be forgot
If thinking on me should make you woe.
Oh, if, I say, you look upon this verse
When I perhaps compounded am with clay,
Do not so much as my poor name rehearse,
But let your love even with my life decay,
Lest the wise world should look into your moan
And mock you with me after I am gone.
- W. Shakespeare Sonnet 71

Silently dedicated to my DH

B

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So...having a respiratory infection with PH sucks. Does that sound stupid? Well, it is stupid because I've had PH for longer than I've been diagnosed and been sick in that time. What makes it different knowing you have PH? Is it the fact that you know that if you get really really sick you're more medically compromised than just someone with a respiratory infection? I don't know. All I know is that it is freakishly bothersome.

Today I said to myself that I should get out of the house so I went with my sister to Joann's. Now, for those of you that don't know, Joann's is like a craft persons wetdream and a wallets nightmare. It's a craft store like Michaels or Hancock Fabrics, only better! Hancock's specializes in fabric so that is a little different and Michaels doesn't sell fabric at all...but.. Anyway... Recently they opened a new Joann's local to where I live. They closed the old one which sucks because the new one is farther away, but if they hadn't of closed it I never would have gone to the new one. The new one is at least 2x's the size of the old one and has SO much more stuff!!!! Today they were having a clearance sale. Now, I love clearance, but what can be better than clearance that is an additional 50% off? I got a moon chair that was 49.99 for 12$!!!!! Go me...

This is the thing though. I shouldn't have gone. I wasn't "well" enough I don't think. My stupid little brain was thinking, "You have your parking thing now so you won't have to walk a mile in the parking lot, this will save you a lot." What my brain wasn't saying, was "You still have to walk around the store a lot." By the time we left the store I felt like I was going to fall over and die. I feel like just typing this is draining the last of my energies away...........

away....

Hubby is doing lots and lots around the house. Because he had auditors coming in at work, he was busting his behind and working days he usually had off, so he took off Thurs, Fri, Sat, and Sun of this week. Yesterday he went shopping and stuff but he also put together my entertainment center that we got, installed a new kitchen faucet, did a bit of christmas shopping for the kids we buy for, cleaned up the bedroom, and a few other things. He said he didn't get anything accomplished. *pshaw* Today he has been planing doors for the office and for the bathroom. The one in the bathroom is going to be a bit of a problem because someone kind of ripped the hinge right out of the wall and cracked the wood in the frame a bit bad.....*hangs head in shame* Let me just say, anger is a wonderful source of energy even if you have PH. Luckily, the door was already being replaced so the hole that got put in it... nevermind.... (Don't think I'm a psycho angry person, this was a one off really.) Anyway, yes, so he has been doing that, along with two trips to Harbor Freight (my dad's favorite store, one my husband apparently just discovered. lol) and a trip to Home Depot. He also has been doing laundry, conning the kid into cleaning up, and generally straightening. He's really a big help around the house.

I wish that I could do more around here but I just can't and my husband generally seems to get that. When I say I feel great that I managed to do something though, he says "I don't feel like I accomplished anything," when he has done 6X's what I did. This makes me feel like Crap but is very hard to explain. A lot of things are hard to explain.

I wish someone could tell me how sick I am. I get tired of hearing that I am very sick. Everyone that has PH is sick but some of us are sicker than others. I am a hardheaded pain in the ass so I don't know how sick I am. Consider that I have a major heart defect and spent my life thinking the palpitations and weird beats and all were normal. Apparently I have a hard time judging things. Do I consider myself "very" sick when I start riding around in a rascal on 6L of O2 24/7? I don't know. I know that last 6MWT I did a bit over 200 meters and felt like my heart was going to explode and I was going to pass out. I also know that I am not on O2 24/7 whereas other people are. What is what? I don't want to be able to say, "Well, I'm sicker than BootLeather Bob, but ChickaBoo Luv is wayyyyy sicker than me." I just want to understand exactly how sick I am. I think this is impossible and it is a constant source of consternation. I lay awake at night thinking of some of the people on the PH board that I worry about on a regular basis and I find that I do not worry for myself. I don't, not really. My husband doesn't seem to understand that. I know a lot of people are having trouble sleeping and are thinking, "This PH shit is going to kill me any day now." But I don't. I hardly think it will kill me someday. If I think about my death at all it is in terms of my husband and son and their well being.... Maybe aliens ate my brain.I wish I could poke some PH people and inject them with a better sense of humor. Has anyone seen the edible coloring markers? The ones for coloring cookies and things but they look like regular paper markers? I wish I could take some like Altoids and some of those markers, and color happy faces and rainbows and stuff on them and randomly send them to people with PH. I would put a lable on them saying, "These are your happy pills, take as needed...and if you don't feel like you need them, take 2!!!" Maybe I could just send people tins of altoids and markers and make them color them their selves. LOL I mean, some of us are taking gobs and gobs of pills a day, why not add a "fun" pill to the mix?

I wonder if anyone reads this drivel.
I wonder why the message boards seem so much quieter than they did when I joined.
I wonder how anyone can enjoy SpongeBob SquarePants.
I wonder why my dog thinks that plastic bags blowing in the wind are the ultimate trespassers.
I wonder what the point in continuing to go to college is.
I wonder when my mom will quit pitying herself over my illness.
I wonder if my husband will get sick of taking care of me and leave me someday.
I wonder if that strange little bit of mold in the bathroom is harmful.
I wonder why MoeMoe (my cat) insists that cardboard boxes and large shopping bags make the best cat forts.
I wonder why I'm making this list.
I wonder why I bother wondering about anything at all....

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Ho hum...PH-hhhttttt!

Today I asked if people would like to be in a secret pal or greetings swap. I know, I haven't waited long enough *pout* but I'm hoping that a lot more people are interested. I really think it could be great!!

I'm considering asking the question on PHA too. Speaking of PHA, I wonder if I will get the survival book. I'd really like to read it but it isn't exactly easy to get a hold of and I can't justify spending so much on a book in times like these. I'll just wait.

I'm feeling crafty but hohum. I am tired....dog tired...could pass out sitting here tired...

Sometimes I just need to amuse myself to feel better. Other times amusement is hard to come by. I try to always post at least something in these things that someone might take as funny but man, that gets hard. There are so many people that are down in the dumps right now. Including me, thank you very much. I think we should start another group called "The PHers in The Pits" but I'd be afraid that the perverts out there would think the site was for like armpit sex or something. Maybe it needs to be "PH-Blue" but that sounds like a stinky knockoff cologne. Hmm, knocking around ideas like this really gets the creative juices going. How about, "My Life is Crappy, Therefore I get to make you miserable too."? Okay, no that won't work it's wayyyyyyy too long for a group name and no one would join I don't think. Ummm, let me think here, I know I can come up with something! Okay, How about "PH-hhhhhhhhhhht!" kinda gets the point across, not too long winded *ha ha punning on PH*, we can all say it/do it and probably do lots... wait wait, I'm not talking a fart, I mean like blowing a raspberry. Sheesh!

Okay fine, so I'm completely insane. I know that. But that's why everyone loves me. (okay, not really but you know, sometimes I have to act like more people care than do...it makes me feel better, don't take that away from me *wipes away a little tear* really, that's not nice, you shouldn't call sick people on little fibs like that...you big meanie. *dramatic sniffle followed by bellowing nose blow* Shame on you.)

Smile hard and keep it there, eventually it will make you feel so stupid you'll be smiling for real.... (and then they will come with the straight jackets, but shhhh)

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I'm nuts

Just in case anyone was wondering if I'm insane.... Here's proof! These little guys are about 8-10 inches tall and 7-8 inches wide. The pictures don't really show it but they both have lights around the brim of their santa hats. Mwaaahahahhaha I'm bonkers! But they are cute...you have to admit that!

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Bummed

Look @ me... I'm blue... Haha

Yes, I know.

I seemed pretty amused earlier.

I crashed a bit.

Not sure why, just did.

I'm sorry.

We have these days where we are enjoying ourselves at least a bit and then we think, "I should clean" or "Make dinner" or something else just as stupid, maybe even something even simpler like, "I should move my freakin' retarded body into a more comfortable position." And yet.... We can't be bothered. Not always anyway. I don't think this is depression, just an acceptance that while we want to do all the things we possibly can, sometimes doing the dishes really is nearly impossible. Between the inclination, energy, breath, desire, etc, sometimes it's pretty hard to convince yourself to do things.

I think this is why I crashed. I was fine. I made my little thing. I bought shoes today that I really had wanted (and nearly fainted getting them on ha ha). I was okay. Really. Then, I posted my pictures of my buddies. I checked email. I fought with my insane DSL connection that Verizon claims is just *bleep*ing fine. (this is a very sore spot...verizon...dsl...ergggggggggg.) Then I gave up on the internet and doing those things. I went in the living room. I sat on the couch. My sister called, we talked while I straightened the kitchen, tossed some trash...put about 10 dishes in the dish washer.... Got off the phone.....DH would be home soon and I was back on the couch, staring into space. I thought about what I would make for dinner and realized that I would rather starve than cook. I tried to talk myself up, "Hubby and son must eat even if you don't." (I never have an appetite.) I still couldn't care. Then I felt bad for not caring. I felt bad for thinking, "If he wants something to eat McDonalds is like 5 minutes away." It made me feel terrible. I went outside, it was just dark... It is getting very cold here in the desert at night now. It was less than 30F last night. (yeah some people are like, "Girl, that is warm..." but I'm a desert rat.) It was cold and getting windy. I stared into space in the backyard on my falling apart double camp chair for about 15 minutes before hubby came home. He asked what was wrong. I started to talk.

I said, "On a good side I got those shoes I wanted."

"What shoes?" says he.

"The ones I was telling you about a week or so ago, that you said if I'd wanted them for so long, just buy them when I saw them."

Hubby shook his head. At first I thought, 'certainly he isn't mad after telling me to buy them. this can't be about money, he didn't ask how much they were...'

The hubby said, "The converse ones?"

I knew I was in trouble, I winced, I mumbled, "yeah"

He sighed.

I still couldn't figure out what was wrong. "Why?"

"I ordered them today online for you for Christmas."

Ouch.... That hurt.

Hubby didn't understand why that fueled my depression. He thought it was funny. He went in the house to call the customer service because they are open til' 10pm CST. By the time he got off the phone he forgot I was depressed. I pretended I was ok. I laid on the couch and joked with him and our son. It is easy to pretend you are okay sometimes when you aren't.

I am still bummed over the Secret Pal thing which is dumb. I want more people to be interested but I will persevere I think. I wish more people were interested. I could understand if they just don't want to share their addresses, sometimes the world isn't safe anymore. But really, on a pretty private board like PhCentral -- who's going to come after you, the guy on O2 in Nebraska that isn't allowed to fly? I figure if people are interested on PHA and PHC I am going to keep them separate. Some people are on both boards and that is fine, but PHC is a more moderated kind of private board. People have actually posted their addresses to the board before, I doubt that has happened much on PHA. I don't think I would do it on PHA. Granted you could be lying to gain access to PHC but why bother? PHA is free and if you're a jerk that wants to mess with sick people you can screw with them there without the hassle of joining and being approved. (Not that I found joining PHC a hassle, but definitely a mild inconvenience.)

Well I better shut up. I don't think I said anything funny in this post. Sorry.

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Thoughts

Okay, so let me start with this thing that keeps going through my head about the chicken flu. I know that sounds really odd but bear with me.

1. Neither myself nor the chicken has a clue about what's going on besides that we feel awful

2. Neither of us have the option of taking over the counter meds that might help other people. I cannot take Tylenol Cold and Flu because of this freaky "sudden death" crap and a chicken cannot because how is a chicken going to take tablets any way?

3. Surely it must be assumed that the chicken is not getting any good sleep and therefore we are in the same boat there. Neither one of us can take over the counter meds for this either, again on the sudden death thing for me. Then again, it might be interesting to see a Chicken hopped up on Nyquil.

4. Both of our futures are uncertain. The chicken will almost surely have its scrawny neck rung, or else perhaps be forced by Koreans to eat nasty KimChi (have you had that? Goodness I can't get over the smell! Just get it within 20 ft of me and I gag. Poor Chickens.) Now, no one is going to force feed me KimChi (I hope) but still, my options are death or something else not exactly pleasant.

On to other business.

My weekend was completely un-eventful really. We finally took my son's crib down completely and put the rest of his "big boy" bed together. He has been sleeping on his mattresses for a week or so with the threat of the crib near by. That may sound cruel but you have to understand that the child is as stubborn and as much of push-it-to-the-limit person as I am. He's just not as loquacious. HAHAHAHA. Anyway, did that Saturday and he went down for his nap and broke the bed. It's a little funny now but it wasn't funny then. His crib converted to a full bed with a headboard and footboard. He was apparently trying to hold on to the footboard and jump on the bed and put his one foot on the footboard and pushed? I don't know-- he's two it's hard to understand exactly what he did. Needless to say hubby had a cow (a big black and white spotted Holstein) and we had to take the bed apart during what was supposed to be nap time. With some ingenuity and a trip to the hardware store, it is back up and WAY stronger than it was before we started, and aesthetically it isn't even compromised. Just one little silver bracket thing that you can see if you are in the bed. I say we did a damn good job.

Later.

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Heeeelppp!!!

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Simple Math?

If you are as old as you feel, then I am 92.
If you are as old as you look, then I am 23/24.

So, if you take 92, minus 24, I guess I am 68.
So my question is, where's my senior discount card?

Anyway, I haven't been writing here lately. Thanksgiving and setting up the Secret Pal thing kind of got me away from my "diary." I've been busy running to-and-fro, writing emails til my fingers feel like they are going to fall straight off, visiting family, helping the DH, and sleeping. Unfortunately, the sleeping hasn't been nearly as much as I'd like.

In truth my Thanksgiving was pretty uneventful. I got to see all the family and everything but it just seemed like a normal day except I got to have 2 of the things I usually only have on Christmas and Thanksgiving. I was very depressed when I saw how bad my husband's grandparents are getting. I try not to get angry at their supposed "Help" that doesn't help at all, but it is hard. They are both getting to the point where they are giving up. Grandpa and I had a long discussion about sleep apnea and CPAP/BiPAP machines. Evidentially gram and grandpa both have "severe" sleep apnea. Their doctor told them that he could, "get a machine that might help a little but it's really not that important." I think most people that read this are saying the same thing I said, "WHAT?!?!?!?" I encouraged him to get the both of them whichever machine was recommended for them. Grandma has COPD but they don't know what else is wrong with her besides diabetes. She has had lung cancer removed twice now but is doing very poorly. She can no longer stand because she has zero feeling in her legs. They even did that creepy needle test on her legs and she couldn't feel a single one. With all of this, she is on asmacort breathing treatments twice a day, in combo with flovent puffs and advair. She still cannot breathe and I don't understand why they are giving her all of this. Grandpa doesn't know either and he says that gram says it doesn't help at all except to make her feel very tired and nauseous. I feel helpless because their doctors aren't taking them seriously. Because of some Jerry Springer-esque stuff in the last year and a half, gram hates more than half the family and refuses to talk to them. She has told me herself that she couldn't careless about anything anymore and if she had the choice she would just go already. It hurts me because I lost my grandparents when I was young and because I care so deeply for my husbands. Not only are they honest to goodness truly beautiful people, but they are both very strong individuals. It is very hard to see them brought down because their doctors don't do their jobs and because they have family members that are complete a-holes. (please forgive the language, I have no other way to say it.)

Beyond that, the mother in law, the gossip monger extraordinaire, has surprisingly not told anyone in the family what is going on with me now that she understands. It was assumed she told DH's brothers about the heart thing and it was assumed that she updated everyone after she finally understood that my taking a pill instead of having open heart surgery, does not mean I am okay. I say this because Gramps couldn't figure out why I would know about grandma's meds, COPD, 02, BiPAP/CPAP's etc. One of the sisters-in-law came in in the middle of a conversation and wanted to know why I was on so many medications. I decided to simply back out instead of trying to explain all of the PH crap to everyone. I don't like explaining, especially not in groups.

We saw my family also, which was the same thing as normal for us. Dad hid for a bit, Mom complained for a bit. Hubby's avoided each other. Sis and I talked, kids terrorized each other. That's the way it goes. As always, Mom and Dad did something to get my hackles up, but I'd rather not rehash. It was more pleasant to me than being with DH's family but I'm sure he would say the same thing about his family vs. mine.

On a lighter note, the secret pal thing is going well. I need to get the rest of the questions from people and then I can give people partners! Yay!  I'm still really excited about that and it is the only Christmassy thing I am excited about. I hope it goes really really great.

Today while unpacking some boxes my DH came across a bunch of envelopes of developed pictures. Going through them was a nice little trip down memory lame. Back when my son was all bald headed and jaundiced. When my niece was still absolutely adorable, regardless of whether you liked kids or not. My favorite picture of my cat moe, when I was trying to put up a 4ft fake Christmas tree, and he decided that the box was the place to sleep. Never mind the fact that the cheapo vinyl and felt tree skirt was in the box…. So he's peeking out from under the tree skirt. I should get a scan of it and show everyone… My moe moe, who is one of my best caretakers. LOL If I get up in the night, he comes to make sure I am ok. If it is very late and I haven't gone to bed, he comes to get me and make me go to bed, he will meow at me until I go. Yup, my moe cat.

I've been longwinded enough for now I think… Besides, I can't think of anything else to say without getting even more depressing….

Try to find a smile.

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Fantasies

Sometimes I sit down to write in my diary and I have no idea what I am going to say, which is really funny because sometimes I catch myself coming up with my antidotal stuff and try to remember it for my Diary.

Imagine a husband and wife on a nice quiet night time drive (ignore the two year old singing in the back of the car)

"You know what my big fantasy is?"

"Noooo, does it involve Val Kilmer?"

"I wish"

"What?"

"My big fantasy right now is to spend an entire day in bed. I don't have to get up with my son, I don't have to get up for the phone, I can just stay there for as long as I want and if I get up and watch tv and want to lay back down I can... No worrying about if it is ok to go to bed or nothing. Just sleep when I want how I want."

This was a conversation a few days ago. He told me that today - Wednesday- he would fulfill my fantasy. He lied. lol... He didn't even let me sleep in a little. In fact, he started the morning with, "Rowshambow you for who has to get up?" I elbowed him. So we all got up... I figured I could sneak in a nap... but no....

We went to breakfast at an ungodly hour in my opinion; it was like, 7:30am.... That is when you're supposed to be lounging in your PJs slowly sipping your second cup of coffee, pretending you intend to wake up and greet the day... but no.... lol

After that we went home because someone (me of course) didn't take her happy little cocktail. As a matter of fact, it didn't even occur to me until I was trying to con hubby into going Christmas shopping and realized I hadn't taken my thyroid medication before eating! Ohhh wellllllllllllllllllllll... So back home anyway to take the 5 morning pills.

Got home and lounged a bit, did some online Christmas shopping and made a Christmas list of what we want to buy for our families.... Then he says, "Let's go to Wal-Mart" (I both love and hate wal-mart) As soon as I say "Ok" he says, "But I want to clean first at least something because the house is an absolute disaster"

I must tell you friends, I took offense. Not only is it nearly impossible for me to do regular housework, vacuuming is enough to knock me on my butt for hours, and that's only the living room... But I digress... Anyway, I was offended! I've been "tidying" at least a bit DAILY!!! The house wasn't even that dirty!!! About 10 leaves on the kitchen floor that keep blowing in the back door when the dogs go out or come in, maybe maybe half a sink of dishes, a few crushed leaves on the living room floor, and a pile of crap on the kitchen counter that...can you guess?...was his "manly" crap that belongs in the Garage and not on my Counter anyway!!!

I didn't say anything, I just busted my sick little but cleaning and left it at that. No reason to let him know that my day is turning into something awful... not enough sleep, feel like hell, insulted, have to clean......let down.. you know how it is... I know you do...

So we cleaned...Then, I went to get the mail... and my front yard is flooded... not only is it flooded but there are soap bubbles.. oh and a few tiny bits of toilet paper.... What the heck? There is a thing in the front yard, that everyone assumed was a vent of some sort --that I was insisting was supposed to be a clean out?... Yeah... well... Guess what? It's supposed to be a clean out and has a vent cap. We just moved in maybe 2 months ago so we don't know all the odd things about this house yet, but there is a lot odd about it. LOL... Yes, so, we call a plumber because I insist to DH that our sewer line is backing up into our front yard and that because he's running laundry and because toilet paper floats and the nastynasty stuff doesn't....that it is most definitely our sewage and we need a plumber. We argue and he tells me to call one if I want.

Because it will be hours before plumber can come we go to Wally World! My son is a butthead the entire time, I feel like hell, am having Lasix issues, etc. Needless to say, the wallet is a bit lighter but my son has new PJs and Shoes (yup that's right, I get my kid shoes from walmart because I don't believe in spending a fortune on shoes he's going to ruin....'Course his Grandma gets them at Sears but whatever.) And we also got all the Christmas lights for the outside of the house. He told me I could have whatever lights I wanted, how many I wanted, as long as I did not get Icicles. LOL He hates trying to put them up and he doesn't really care for the way they look either. LOL I have no idea what else we bought...oh well. Eventually I will go through the bags that are on the kitchen table, maybe tomorrow?

After that came home, fed the toddler some lunch and put him down for a nap.... My body got all excited, thinking it was finally nap time.. but no.. Lasix decided that I was grand central station. Then the plumber came...then I felt like hell and was trying to chill out and realized that it was 4:45! OH NO! I had promised to have everyone partnered and notified by 5PM EST. I felt awful, like a horrible organizer... really... I finally, after much confusion, got everyone paired and emails off. Relief...excitement.. can't wait!!!! :) YIPPPEEEEEEEEEEEEEE! lol

Anyway, that was my day... now I'm doing the internet thing because it's too late for a nap any way and I have a major headache and Tracleer Jaw Pain... *sigh* Sometimes it is not nice to be me... Even though I had a pretty crummy day, I can still say that I feel emotionally well because getting everyone set up really lifted my spirits. :) So take that evil PH and evil Tracleer Side Effects! You cannot get me today!! :P

Did you ever wonder:

Why William Shatner pauses all the time?
Are kidneys shaped like beans or beans shaped like kidneys?
Why cats get elevator butt?
How come doctors refer to their specialty as their practice?
If you have "boogie fever" do you need lots of Kleenex?
If a turtle loses its shell, is it considered naked or homeless?
Why is cheese so secret that we must shred it?
Why is spoiled food so yummy? Grapes, Corn, Milk, Potatoes, Rice, Cheese....(yeah, you're gonna have to think about that list for a second aren't ya? First one to email me with what each is gets a cookie. lol)
Why you drive in a parkway and park in a driveway?
If you choke a smurf what color it will turn?
Why drive thru ATMs have Braille?
Why automated systems often say "for Spanish, press two" in English.
Does condensed milk come from little cows?

Okay okay, I'm going now.

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Leaving the Leaves

I wanted to post yesterday and didn't get the chance, so, I will do it now because I am thinking about it. This could mean I have more than one entry for the day but oh well.

I want to start with extending a great big Thank You to Kathryn Frix for giving us the comments section of our diaries. It's a really cool feature that I'm sure will get used often.

Yesterday morning my son and I went outside to play for a bit. It was nice and warm and sunny. Barely breezy. There are leaves all over our yard, more than I think came from the trees in our yard. A week or so ago, two neighborhood boys came to the house and offered to do the leaves for 3$. My husband said that 3$ was not acceptable, and ended up giving them ten. He sent them home before they finished, large piles in the front yard and no less than 9 trash bags of Leaves. You would think we had a huge yard too! But we don't! And that was only the front yard. There are places in the backyard where the leaves are at least 5 inches deep. It looks very pretty but I realize how annoying leaves everywhere can be, even dangerous.

Anyhoo... my son and I were playing outside and I remembered what it was like to find pleasure in the simple things. He played with his bike and his T-Ball set, but what really got him happy and a smile on his face was playing in the leaves. Laying in the leaves watching the clouds, making leaf angels, and throwing them around, he was enjoying himself. In the afternoon I watched my niece and she and my son played outside. I struggled to make a large pile of leaves and the two of them took turns swimming in the leaves, making leaf angels, etc. Generally making a mess but having a blast. They even had fun jumping in together. Point being, sometimes, it takes a child to remind us that there are simple pleasures in life.

Other than that yesterday passed relativly uneventfully. I got some good news, I got some bad, I got some weird news... I suffered with my Tracleer Side Effects and a late coming round of the Ugh Bug.

I spent the entire morning answering my crush of email about secret paling and other PH Stuff. I throughly enjoyed myself. I especially enjoyed responding to the email that said simply "What is an elevator butt? LOL" and the senders name. I had much fun. I emailed back and forth with people for quite a while! I also talked to a nice girl that has MCTD and PH that has soooo much in common with me. She seems very nice and is actually only a bit over an hour or so away from me. Very interesting! I had great fun sending questions to secret pals to answer for their secret pals and emailing back again. It makes me feel like I know everything and everyone else is left to wonder. hehehehe.. My problem is is that I'm still going "I wonder what so and so got for so and so!" and the like. I will try to contain myself but don't be surprised if I get to a point where I'm like "DID ANYONE GET ANYTHING YET?!" lol. Gosh, that sounds materialistic and awful doesn't it?

Around the time my son went down for his nap I deflated. Everything hurt, I was unhappy, I felt tired and like hell. My heart was doing weird things, I kept getting SOB sitting at the computer, etc. It was just majorly crappy. I tried to take a nap finally and I couldn't turn my brain off. Every time I even twisted a bit from being directly on my back I couldn't breathe. Finally, I was saved from more irritation at trying to sleep by my son getting up from his nap. I still felt like hell but at least I had something else to focus on.

I don't know. Yesterday just ended on a very down note for me. From the way I felt emotionally to the way I felt physically.

Today is not going much better, I seem to have upset some people unintentionally and feel like a real jerk about it. Besides that, I didn't sleep very well last night so I was already in Errgggh land. I sent out an email late last night that a lot of people didn't seem to understand, which is probably my fault. Don't really know what to say about that either. It's all relative.

Basically I feel like what happened last night. Let me explain that better. Last night my son and I were trying to hang christmas lights in the living room window. Every time we stuck them up they fell. That is what I feel like. Falling christmas lights. I wonder if that makes sense to anyone.

Well I'm off to watch one of my all time favorite Christmas movies with my son... Mickey's Christmas Carol. hehe

You know, after I posted that one message in PHGreetings, I am seriously wondering, how in the hell DO you shave a wild squirrel?

Also, has anyone that signed up with PHA recieved a PH Guide as per the promo? Just curious! Lemme know if you did.

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Finally!

Yeahhh!!!!

I've gotten all the secret pal stuff out including the lists and things for greeting cards. *swoon* The orginization organization may be over but I know there will be issues to come, missing packages, wrong addresses, oh my lil defective heart goes pittypat. lol

I'm truly excited however, because I know it is going to be super great! I can't thank everyone enough for participating. Like I've said (probably a million times) I'm going to try and have some kind of exchangy thing on a regular basis. This is not because I want everyone to spend money, sometimes I will specify that people are signing up to send a funny card or something. It won't always be a gifty I don't think. I think it will be good so that people regularly have something to look forward to. I hope that watching everyone get so excited has sparked some interest in others to get involved.

On other fronts, it was FREEZING here over the weekend. At least for here that is. Saturday night it got down to 18 degrees. Poor hubby spent the weekend doing Christmas lights on the house for me only to have today be warm, go figure. This is what happens when you live in the desert. It gets colder than cold at night and during the day can be a balmy 70 something. Of course, you can never guarantee this so don't take bets.

I have only done Christmas shopping for my secret pal and for my husband, and even that is a just barely. Christmas is going to get away from me, I can just feel it. I will try to make this my shopping week. (yuck) I know you probably don't believe me, especially after organizing the Secret Pal thing and Card thing --- but Christmas has never been my bag. I like the lights and I like giving but other than that, I'd rather sleep. I have felt like this since I was a child. I just don't care for Christmas very much. It has always been a depressing time of year for me. Isn't that weird? I love to give and always try to be thoughtful when I do but other than that, ugh. I like opening presents and wrapping them too but it's one of those things that I can live with or without. What gets me with presents is that I want someone to think about what they are buying me. I want them to care about what they are buying me. I don't want them to run out and grab me a pair of slipper socks because it is the last minute and they know I am buying them a gift. Perhaps this is why it is depressing to me. I sometimes spend months planning gifts for people, to make sure they are special and not just more useless crap-- only to have them send me useless crap. For example last year my "best" friend complained about the Christmas party she went to with her "other" friends. One of them gave her a cocoa set. She told me all about her gifts and how the cocoa set was retarded. Well, guess what? Two weeks later when she and I exchanged gifts, you know what I got? Yup, I was regifted with the "retarded" cocoa set. It was so depressing. I would rather you give me nothing at all than show me how little you really care about me by either throwing something together or regifting me with something you complained to me about! How tasteless is that?

Of course, having said that, my secret pal is going to open my gift and go "what in the heck was this person thinking" LOL.... Hey, I tried ok. Sometimes you have to have some silly things and some good things... try and deal with it... my heart was in it I swear.

Well all, I'm sure I had more to say but I need to get going from here and get back to emails and research.

Many Hugs to all.

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Wednesday, December 7 2005

I'm evil

Okay, so you know how some families send out those letters about how their year was instead of Christmas cards? I have never done that. I have got them, but never done it myself. Now, I was talking with my husband tonight about some of the ridiculous asinine stuff that we have read in ones we have gotten. One of them, not that long ago said:

Recently ______________ decided not to be mayor any longer because it was too much work between running the farm and being a gas station attendant.

Yes, they were serious.

(insert 6 paragraphs about the wife and cats, come to last paragraph..)__________________ is doing well at his job at the fish place. We don't see eachother much, but we didn't before we got married this year either.

I know you think I'm kidding but I am serious! Another was:

This year I am going to make more doilies for the craft store even though they aren't selling. The sheep got very sick this year but so did the kids.

SO.... what I'm going to do... Is let Ya'll see what would happen if I wrote one for this year... Keep in mind my personality and you might survive. I am not making fun of people that do this, just people I have gotten them from that wrote stupid things....Okay, so here goes.

Dear Family and Friends!

Some of you we never talk to, you don't hear from us at any other time of the year, isn't that silly? Well, if you haven't heard from us, then you don't know what's going on - unless you've heard it in the rumor mill. I thought this year, I would write this little letter to let you know what is going on with me, Ryan and Kellar.

This year has not been much fun. Kellar will be three in February and has gotten so much bigger he is always running out of clothes. He isn't even 3 and wears a 5T! He thinks running around naked is the way to go. For a while, we considered moving to a nudist colony, but that idea went by the wayside as neither Ryan nor Myself want to see a bunch of strange people naked. We also do not wish to be naked. Instead, we have turned the backyard into Club Kellar, where he is free to run naked whenever he so chooses (except for when the cops are near by, you know how weird that could be to explain, yukyukyuk).

Also going on with Kellar is the fine art of potty training! Who would have known that children would still have such foul smelling bowel movements! I always assumed it was because of the diaper! Silly me! Besides the smell, he has enlightened us all by peeing on the floor for spite as well as supposedly accidentally doing a doody on my office floor! He claims that the main bathroom door was locked and that he couldn't run to the potty that was only three feet from where the "present" was. Luckily, it wasn't a messy one. Either way, that is going well. You might also know that he has a vocabulary that could put most second graders to shame, tells it like it is like his Mama, and can sing about 6 different kids songs. The one rap song that he heard about "hump humps and lump lumps" we refuse to consider a song. Blame his dad for that one. He has also memorized every book he owns and can recite them for you, only dropping a few words here and there, this is brilliant, especially since he has at least 60 books, although, it makes it difficult to read him a bedtime story.

Ryan got a new job and a new car, because the car was a piece of crap and so was the job. Wait no, that can't be right. The job wasn't worth the money and neither was the car. Oh, okay, both of those are true. In truth, his boss was more miserly than Scrooge and a jerk to boot. And the car, although not mean to him, was in need of a new windshield (this is what happens when you begin to commute), still had a weird check engine light issue that it has had for five years since we bought it new, and also appeared to be guzzling gas like mad. Then again, every car probably seems like that in the State of California where the gas per gallon costs more than a happy meal at McDonalds. I mean, seriously, you could feed a kid in etheopia for a month on the money it costs to buy a gallon of gas here.... But! I digress. So yes, Ryan hated his boss but loved the people at his job but finally had to go. Thank heavens. He loves the car and the new job. Which is wonderful... The car I am so-so about but he likes it a lot and it is actually a lower payment than the one we got rid of only 3 months ago when the car he just traded in was paid off. Do I sound bitter? Gosh I hope not. I'm not really.... It's just I'll never get to drive it much...

Which is because I don't drive much alone anymore because I have this really awful disease. Don't worry, I can't give it to you, though some of you I would if I could. Ha. Anyway, I'm sure none of you want to hear about that since you could give a crap less about any of this. Just to see if you're still reading, I'll tell you about my new graveyard shift job. I come home really tired, get paid only in cash, and am usually moderately satisfied when I get home. The walking isn't all that great and the shoes make my feet hurt, but what's a Working Girl to do. The odd thing is some of my Customers really dig my O2. Oh yeah, I didn't tell you about the rest of my really awful--it'll kill me eventually disease--so you don't know about that part, so never mind.

Take care of yourselves and remember, even though we never hear from you, we still think of you. At least once a year anyway - which is more than you can say you think of us.

Sincerely,

The Hayes'

Okay, I'm done being a jackass for tonight. I feel like runned over garbage (yes I recognize the bad english) and need a shower and sleep. Oh yeah! I did get all my PHC Christmas cards done today though. Go me! Keep an eye on the mail box Ya'll.

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Thursday, December 8 2005

Evil Ph

Turn back now... this is me letting loose of some frustrations and questions.

I think I'm getting worse. Accredo already called me for my third month of Tracleer. I feel no different. Sometimes I feel worse. It isn't helping. I've noticed a correlation between my headaches and lack of O2, so when I get a bad headache I take my pill AND get on the O2. Sometimes it helps, sometimes not. Strangely, I am learning to tell the difference between types. I wish someone would just say I was screwed already instead of this dancing around thing. This crap about "We'll see" or "Everyone is different". I confuse my doctors because of my heart defect and the way my shunting works. I get really really bad chest pain when the shunting happens but my O2 sats go up. When I rest, they drop. Last 6MWT the nurse and I discussed this. When I began having chest pain, I was at O2 sat 94. When I stopped because I felt like I was going to have a heartattack and die? As soon as I felt like I had caught my breath a little, my O2 sat dropped into the low 80's. This makes sense to me but not to them. During recovery for my TEE and my RHC my O2 sat was never above 85 and this is laying on a bed having a nurse yelling at you "TAKE DEEPER BREATHS, YOU'RE ON O2"...

Forget all that... why didn't anyone tell me that 200 some odd meters wasn't much over 700ft. OMG that is nothing? Why didn't someone tell me that some of the people that are being told they are going to freaking die (of course I don't think doctors know, but thats me) can walk farther than me? What the hell?

Asking how sick you are is really stupid I guess. So you say, "How sick do you feel Bree?" Um... Sick? I'm not sick. How shitty do I feel? How much do I feel like a walking corpse? Okay, yeah, those ones I can answer, but how sick do I feel? This isn't sick to me because this has been my Always for so long.

Should I consider being on O2 24/7? I don't know. I don't know when most people start that. I know if they go by my active O2's they think I am well. Like doc says when he makes me get on the table and takes it and says "Wow. you're at 95" and I say, "Yeah you made me jump on a table. Take it in 10 mins after I've been sitting here."

I need to be more dilligent but sometimes I don't care. I have a prescription for a pulse ox that I am having problems filling. I guess I need it but I know my body. I know my O2 sats go up when I am upset and active. This is because my heart is a defective little traitor. But forget that, guess who hasn't paid Apria this month? Guess who needs canula's but can't get them until she pays Apria and can't pay Apria right now? I am an idiot. Guess it's good I'm not on 24/7 O2 eh guys? Or I'd be real screwed. The local med supply store wants over 20$ for a frickin Canula and you know what? I am not paying it. That's ridiculous. It doesn't help much that my "copay" for my Ox-Concetrator is like, 80 some odd dollars. I mean, cripes.

Oh lets see... what else? oh yes.. I am supposedly a "severe class 3". Guess what? I am slipping into class 4. Class 3 doesn't talk about sitting at your computer and getting short of breath. Class 3 doesn't say that you can't sit through a movie on the couch with hubby without your O2 on because you will get chest pain and mysteriously fall asleep. No, I don't have major syncope passing out all over or something, but I can't stand still or sit still for more than 15 minutes before I get SOB.

The other thing on my mind is to disability or not disability - that is the question. I get my insurance through my employer so I am hesitant. I will make a decision after the first of the year though because I feel like I am robbing my employer. They are paying me for 25hrs a week so I can keep my insurance, but they aren't getting that in return- especially not quality of work. I think I will write to my Specialists right hand lady and ask about this. Giving that up will be a very hard thing to do because I will be admitting to everyone that I can't cope anymore. What will happen with medical though if I do that? I won't have insurance anymore? Will the state givbe me some? Will I be forced to start over, get new doctors? This is too much and too hard to think about. I know that if I switched to say, Medi-Cal or something and they didn't cover my PH Doc, I wouldn't bother, I'd keep my O2 and just hide in my house and throw up my hands. I am not taking all these tests again. I don't care if it supposedly means my life. I REFUSE to start over. Maybe that is stupid but I don't care. More meds I can handle but I can't start over. It took me so long to finally figure what the hell is wrong with me that there is no way I am going to start over.You say, "If you tell them you are Dx'd with PH they will start there" yeah well... I'm like a frickin sideshow. Every time I see someone new they want crap so they can see for themselves. That's just how it is. Maybe the idea of the person they are looking at being as ill as all the paperwork says disturbs them. Especially since I don't wear O2 24/7 and I don't have a Flolan pump or anything.

There are other people on PHC that are my age, that have lived with PH for a long time, but then there are people that were my age that lost their battle with PH. What makes the difference? Where is the deciding factor? Where am I in the grand scheme of things?

Crap I don't want a damn timeline or something, I just want to know whether I'm taking this all seriously enough or not. Maybe I'm taking it too seriously? Is there a scale somewhere about 6MWTs? I have researched the internet far and wide for so many things and according to that stuff, since I'm not on O2 all the time and not on Flolan, I'm doing great. Nevermind the fact that I am not entirely honest with my doctors because I feel like a whiny asshole. Nevermind the fact that they already told me any kind of IV drug is not an option.

Well, I don't even know what I said anymore but I know that my head hurts and I want to vomit. Sorry, nothing very funny here today. At least right now.

http://erj.ersjournals.com/cgi/content/abstract/26/4/667

http://erj.ersjournals.com/cgi/content/full/17/4/647

http://indianheartjournal.com/JulyAugu2002/Chronic Oral Sildenafil/chronic_oral_sildenafil.htm Perhaps I am over reacting to the SMWT. I would like to see a graph or something but whatever. By the way, a Standard Deviation of over 100 is like....worthless to getting a decent idea on the real statistic.

Ok, I lied. This morning when I got up I felt crappy and was turning on Cartoons for my son and I looked out the living room window at the Grey Sky. I thought to myself about all the things I wished I could get done today. Dishes, Laundry, Crafts, Cleaning, Christmas Shopping... and the Theme from Rocky started playing in my head... "It's the eye of the tiger, it's the thrill of the fight / Risin' up to the challenge of our rival / And the last known survivor stalks his prey in the night / And he's watchin' us all in the eye of the tiger".....

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Thursday, December 8 2005

Just another day....

Everyone that read my diary entry this morning thought I had a really bad day. I can understand that. I guess I sounded pretty off. I didn't though. This was just all the stuff floating around in my head for so long. It is the one post I don't want my husband to ever see. I don't want him to know how bad I think I am getting, how I noticed I'm getting worse and not better. Like he said on the phone today, "There is only one thing you cannot fake with me. I never know how you feel healthwise because that is something you can fake so well and have been faking for so long."

I don't know if I fake it but I know I leave things out a lot. I don't want to go to my PH doc and be like,

"Give me something to make my brain go away because it never stops. Give me O2 so I can breathe all the time a little better. Give me something besides Tracleer because the only thing it does for me is give me BAD headaches and MAJOR jaw pain. Help me to sleep because I still can't. Tell me what my REAL prognosis is, instead of saying "pretty bad, but if this doesn't get changed, way worse." What does that mean anyway? Either help me or Kevorkian me already."

Anyway, I spent my day doing basically nothing. Just a bunch of little craft things and the like. Kellar has gotten himself sick and was very congested and coughing at nap time. When hubby came home I went to the drug store... Umm... yeah... You know, you people with that damn cocoa thing? Either someone is going to get one from someone else and blame me, or I'm going to go on a hunt for the most awful one I can find and just randomly send it to someone. lol They must have had 17 different cocoa sets at the drug store... I was so so so very tempted. lol

I dropped all my Christmas cards to the PH Group off at the post office while I was out. Then I said, "wow, now you should get on the family ones that no one cares about." I wonder what would happen if I didn't send any? Maybe I will just send to a few, the ones I know always send to me without fail? Eh, prolly not even them. If I counted the people that I know look forward to my Christmas cards I might have 3. That doesn't include "friends" but besides the PHers there is only one friend I would send to. Isn't that strange? Oh well. I haven't heard from my "Best friend", yes the cocoa one, since I told her on the phone, "I have some pretty important news, but it is more a face-to-face thing." I wonder if I care? I know I should but I'm not certain that I do. People don't want to know about this crap with PH anyway. I was going somewhere with all of that but I have forgotten now...

It's time to get the poodles groomed again, gack, I don't feel like it but it is needed... I am not looking forward to next week... too much in my brain tonight.... can you shop for stocking stuffers online? I don't want to go shopping... I don't know what to buy hubby. I already got him Indiana Jones box set DVDs. He says that is enough and don't buy him anything else but I know if I just let it go I will feel like such a complete jerk asshole on Christmas morning. I don't have any ideas though. What do I put in his stocking? Porn and Condoms? JK! It seems so pointless to get all those little things, granted we have big stockings but whatever. You get the normal candy stuff, but we don't really eat much candy... So what? Lotto tickets? That won't take up much room..... Any ideas people? Help me out here. LOL I can't think for myself. What is useful to a guy but will fit in a christmas stocking??? OHHH hey, I also got him a big encyclopedia book on woodworking because he wants to try his hand at the for a hobby now that he has a big ol garage all to himself (did I tell everyone about the used tablesaw he bought himself for his birthday? lol). I wonder if there is someone I can ask what to buy him to get him started with doing that that won't cost me a million dollars? Hey, Kathryn if you're reading this, isn't Corey into that? Ask him for me k? LOL um... I guess I could read the book I bought him but then wouldn't it be used? :P

Well, Me brain is fried now... gotsta run and hide away somewhere.... actually, I think I hear my pillows and my concentrator calling, "Breeee Breeeeee...."

Todays Questions:

What is always before you, yet you can never see it?

What is always coming but never truly arrives?

Oooh inspirational even.

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Saturday, December 10 2005

ArGhGhGh

I really wanted to get in here and write about my day today but I am feeling so awful at the moment... Someone hand me a pulse ox, my arms hurt like they are going to fall off, my head is pounding, my chest is so so very tight and pain filled- strange like having static inside your chest-friction, so weird.

Last night my son wouldn't sleep. Maybe couldn't is a better explanation. He is very sick with a cold he got from his cousin. He kept getting up and hubby has to get up for work so I said "If he gets up again I will sit with him." This was at 1am after going to bed at 12 and falling asleep for 15mins. Kellar was out of bed maybe ten minutes later. We were up til past 430 when I insisted he try to go back to bed. I managed a couple hours sleep.

I feel like I overdid it today but I didn't do that much. I am getting what kellar has and it is already killing me. Sneezing, blowing nose, coughing up gunk. I sound worse than my son does. I hate that I get sick like this! I got over being sick like, 3 weeks ago! Geeze...I feel doomed.

I didn't take my lasix today because I wanted to try to get a nap, didn't happen. All I had to eat all day was 4 or 5 (can't remember) chicken nuggets from wendy's (you know, the 99cent ones?). I am not hungry at all and hubby wants me to eat but the idea makes me want to yack.

I wanted to get my Secret Pal stuff wrapped and ready to mail but I just don't think I can hold out. I'm not as tired as I should be but my body is giving out on me in other ways. I know my O2 sats are down and have been wearing my O2 but it keeps making me sneeze worse. I cannot win!

I will say real quick that I emailed Doc's nurse last night about Disability and stuff. She called me while I was out and I called her back. We had a long convo in which I was told to fess up everything going on with me. The strange falling asleep for a few minutes, the SOB while sitting down, the O2 headaches, the anxiety, the general stress. Basically, she says talk to doc about: Going on Perm Disability, getting a helios so I can be on O2 24/7, not just at home, a mood drug, perhaps some valium, um funny falling asleep thing (she says I am passing out, who knew?), SOB sitting... yeah... she rattled off a list and made me write it down because she will not be there. My appointment is for the 28th of this month. All of you must wish me well. Part of me wants him to say Yes to disability part wants him to say no. I want him to say yes so I am not nuts and perhaps my life is easier and better in the long run. I want him to say no because I don't want to admit I am that bad. I am insane.

On the flioipside flipside, at least mentally I am okay today and not ranting in my head.. LOL

I got my first PHC greeting card from the exchange today. It was so totally cool. Grandma got her first one too and had a cow, calling asking what it was about and what was going on and did she forget someone or what. LOL I explained and she actually got really excited. She says she's going to try to send a reply back for every single one. :) It makes me feel good to know that someone did send to her and that she got such a kick out of it. I know she will get more and will love it. She laughed for real for the first time in so long. My heart swelled (in a good way). Oh the littlest things can make someone's day. For Gram and for me.

OH I also got the PH Survival guide as promised from PHA.org... you remember, when I signed up just to see if I would get the book? I mean, it's 15 to sign up for PHA...But it would have been 25$ to buy the book outright... They sent me a bunch of other stuff that I haven't even looked at... All I'm thinking is "damn they must have a helluva lot of donations to spend 16$ in shipping." Then I remembered, that I had just given them 15$ too. LOL.... Nah, it's cool though. I will have to look at it and get back to everyone with my not-so-expert opinion. At this rate I feel like I know just about everything except for some of the terms and where to find them on the medical records.. Like my ejection fraction. LOL Is that even the right term? I will have to look at my RHC closely...

Goodnight to all... I've gotta get outta here. No wrapping tonight... Give me my kleenex and my O2 and I will make do.

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Monday, December 12 2005

:(

I am not dead yet, though I feel like it. My last post, though it says Sat was very very late on Friday (unless I'm mistaken but then who knows)

Intermission for hubby making me watch kids do the Christmas thing...and make them dinner...and clean up...yeah

Okay, so yes, I was saying...I believe to the best of my recollect that my last entry was written at late Friday night... So... here's an update.

Friday night, I couldn't sleep. I sat up in the living room all night long. I got maybe two hours of sleep. It was absolutely awful. When my husband came home from his finals he sent me off to bed where I slept off and on for the next four hours. Eventually, I got up because I was tired of waking up. It was not fun. Was supposed to go with my sister to the post office, couldn't manage to do more than dress myself. LOL Okay, a little sarcastic but I didn't do much. Saturday night, same thing. I could not sleep.

So, not only could I not sleep Sat night, but then I couldn't breathe. I had my O2 up to 5l and it wasn't helping. (I now usually keep it around 3l)Not only could I not breathe, but if I put any pressure at all on my back or my front (torso). That was pretty scary but by that time I was so sore from my navel all the way to the top of my head from coughing that I didn't think much of it. I perched myself on the very edge of the couch and sat all night long. At one point I got up to pee and stopped in the hall to catch my breath with my arms crossed in a doorway? and passed out. It was not fun. By 4am I was trying to decide if I should wake up hubby (whom I had attempted to wake up 3 times to fix the humidifier he set up). I didn't wake him up however because he never gets REAL sleep. So I figured, he was sleeping hard, let him sleep, I can hold out til 730a or so when Kellar gets up.

At five in the morning I called Urgent care to see when they opened. I was struggling to keep from waking hubby and asking to go to the hospital. My whole body hurt so bad. You have to understand that my head hurt so bad from coughing that every time I coughed I had piercing pain in my whole head. I saw stars. Litterally lost my vision a few times. Not only was my head like that but my entire back was sore and had sharp pains in it as well as my ribs. Combine that with the freaky chest pains I get and that weird thing where if feels like there is a dry rough spot inside of you from your chin down to just a little below your breasts (straight down from chin) and I felt like I was going to die.

Kellar finally got up and I made him go wake up his dad. As soon as hubby got up I gave him the choice. I didn't explain my situation *(and I never will as long as I live)* but I told him to hurry up about it. It was 810a and the urgent care opened at 9a. Saturday one of my reasons for not going to the doctor was that I felt uncomfortable getting off my O2 since I don't have easy travel O2 and felt like hell. Sunday however, I had no options. Since I didn't want to get off the O2, hubby tried calling my GP and asking him to write a prescription for some antibiotics, he wouldn't do it, said go to urgent care (at least according to dispatch that claims they called him).

By the time we left, simply trying to talk made me unable to breathe. I started practicing around 830a getting around without my O2. So I went to the urgent care. Now don't get me wrong, but if they say they are going to see people in order of their "need" I think not being able to frickin breathe should qualify but whatever. The wait wasn't too long, but it felt like forever and I truly could barely breathe when they called me. They didn't even do a pulse ox on me. The nurse looked at me like I was crazy when I whimpered because she told me to climb up on the table... Yeah..

Then comes the doc. Now, I know a lot of the docs at the Urgent care I go to, it's a medical group and they don't change that often. I didn't know this one because he's from the next city over and was covering this Urgent care. So he says, "What's the problem" I say, "I can't breathe I need antibiotics and pain killer because I have PH and I am in excruciating pain from coughing so much." he says, "Oh yeah PH that would make sense that you need antibiotics, so you think you are sick?"

GRRRRRRRRRRRRRRRRRRRRRR I am not even playing, the half-wit mongrel SOB didn't know what PH was, didn't bother to ASK and! Proceeded to QUESTION me when I told him that I cannot have Ibuprofin. I say again, "I have a 3cm ASD and PH. I cannot have Ibuprofin." So he says, "That's all I am willing to give you for a pain killer and I don't even know if I should give you antibiotics." As some point in this argument Kellar says something about my O2 (and my not having it)so wonderdoc says, "If you have O2 and you can't breathe, why aren't you wearing it?" Like someone goes around huffing and puffing and coughing like I was and all that CRAP for Fun?! SO I had to explain about my rocket tanks, I say that I am going to talk to my PH doc about it when I see him.... So long story short, this jerk doc keeps talking over me, being an asshat, not listening, etc. Finally, I convince him to give me some antibiotic and pain killer. He says he's going to, "call dr.____ and dr._____ and talk to them about this." (dr's are the two dr's that I'm seeing at the med group--if you remember all that, that happened. lol) So whatever. I spend the rest of the morning in and out of bed. I still cannot breathe and cannot get comfortable, however, I do not hurt. Not hurting is worth sooo much.

So then, yours truly says to herself, can't breathe when pressing front or back.....missed my lasix....HMMMMMMMMMMm...But, I didn't look more swollen or anything really. Either way, after peeing a million times, about 3 hrs later (after doubling my normal dose of lasix) I could breathe. So, rule of thumb is don't miss your lasix if you are sick.

Either way, it is monday, I managed to get five boxes together before feeling like I was going to die. Sent everything with my sister to go to post office (yes, she took my atm card) and then did nothing all day. The only other thing I did was feed the kids and hand them ornaments. Now I am pooped. Oh yeah, and I read/answered my 40 (yup I said 40 and that is not counting spam!) emails.

Anyway, tuckered out now, just wanted to let everyone know what is going on. On O2 at 5L, taking antibiotics, taking pain killers every 3-6 hours... I'm alive, but I sure feel like hell.

Once again, if I haven't said it already, I will remind everyone - some things seem SUPER huge but then, if you think about someone doing things just a little bit at a time, (over say, a month?) then it doesn't seem so bad. LOL.... Eventually everyone will understand this. Oh yeah, and did I say I go overboard?

Here's the Christmas Tree and some Ornaments (I'll do ornament pic later, gads) I made last year... and no, you aren not confused, DH really DID put my lil guy on the tree as a topper.