Tuesday, October 31, 2006

Haunted House

OK - neighbors are concerned as the front door and the front windows aren't staying closed even though no one is currently living in the house. Guess I can't blame it on "A" leaving them open any more.

Plus "A" finally admits that he does believe there's something going on at the old house... if nothing else, he now realizes that he sensed something else there "watching" him and really only noticed it now that it's gone. He said that he's decided that the house itself has convinced him that there really is something else going on - not exactly that it's a ghost - so much as something 'not right'.

I'm just glad I'm out of there.

Begger's night

OK - so spent several days trying to teach "a" to tell a knock-knock joke. You've seen how unsuccessful I was with the "trick or treat" - so, I wasn't overly upset when this didn't work out quite so well.

Me - "Say 'knock-knock'"

"a" - "knock-knock"

Me - "Who's there?"

"a" - "me!"

Me - "Noooo.... You're supposed to say 'Boo!'"

"a" - "Boo!"

Me - "Boo-hooo"

Me - "Say, 'Aw, don't cry it's only me"

"a" - silence....

Me - "OK, let's try this again... Say 'knock-knock'" and we'd repeat the exact same thing over and over again until he decided to try something brand-new.

Me - "Who's there?"

"a" - "Not me!"

'cause of course - I kept telling him - no, not me... say "boo".... aawww....

Still feeling great

I've still got some pain - ended up needing a pain killer before I went to sleep last night, but the energy is back, I feel like I can actually accomplish things, and no episodes of dizziness or numbness for the past two days!!!

Unfortunately, the meds that seem to be helping me with all this are way, way too high in my system, and I have to stop taking them for a few days. I just hope I feel this great when the levels are on track!

Oh - and wait for another post about the haunted house. I've got a busy day today, but hope to get it posted before Halloween night.

Monday, October 30, 2006

New Found Energy

It is so weird to actually have enough energy to do something with my physical body. I actually had enough energy to go out to Newton and bring back two loads of boxes and items. I actually cleaned the kitchen, dining room, living room, and my bedroom AND I made a third trip to Newton to pick up my tv's. I'm actually kind of in shock. Of, course, it did help that "a" was at daddy's house this weekend.

Last time I was on blood thinners I was exhausted all the time. This time, I started taking them in the evening per advice from the internet. AND WHAT A DIFFERENCE IT MAKES... and only after four days. I'm still sore and still having some trouble sleeping. But, I can actually be up and walking for more than ten minutes without feeling intense desire to sit back down and relax. That's good news... very, very good news.

I started taking my meds Thursday night; I had four spells on Friday; two on Saturday; and none yesterday. I go in to check my med levels today.... to see if I need to increase or decrease my meds. But, I cannot say just how thankful I am to be on it this time around. Of course, my period should start next week; and I'll probably be cursing the meds then; but, ah well, at least I'm seeing improvements. And I know that having a clean house dramatically impacts my mood - and vice-versa. The only room left to tackle is "a"s room. Which is a lot of work considering "a" is usually removing toys off his shelves as fast as I put them up.

Next post which might not be for a couple days, as the week starts ramping up, but it'll be about how proud I am of "A" and plans for his brand new apartment!

Friday, October 27, 2006

Moving a rock

Lately, I've felt like I'm between a rock and a hard place. The Cardiologist really doesn't want to perform the surgery unless we fail at resolving the issue with putting me on blood thinners; the hematologist doesn't want me on blood thinners unless we can find a clot; the radiologists can't find any clots.

I went into my hematologist yesterday and explained the past year to him. And then explained where I am now and how I don't know what can be done to help me, but that we have to figure something out somehow, somewhere.

So - he gave me the option to go on a three month trial with the blood thinners. If all my "episode" symptoms disappear after the three months, then we prove that they truly are related to clotting issues; if they don't - then we can prove that treating the clotting disorder isn't going to resolve the issue.

I'm still stuck a little bit, as the procedure is intended to be used when the medicine doesn't work by itself - so what if that keeps me from improving?

I'm also a little freaked out by the fact that the people I've been trusting on the Internet (albeit not doctors, but way more experienced and knowledgeable about clotting orders it seems)... they say you can't just start taking coumadin. That there's two reasons why you MUST also take an injectable form of Heparin or Lovenox the until the coumadin takes full effect in your body. The first - is that according to "the people" that coumadin when you first start taking it can actually work in the reverse and can actually clause clotting during the first few days - so they rely on injections which take effect immediately so that you're protected from that. Secondly, a rare side-effect of coumadin is skin necrosis (SKIN DEATH) where parts of your skin start dying and falling off your body and can require amputation (supposedly from these little clots) - and that this side effect can only occur if a person isn't fully anti-coagulated by injection before taking coumadin. My doctor - he says I have nothing to worry about - just start taking my pills ?!?

So - I am... but, believe me, if I see a single rash or bump or weird color or anything - I'm heading my ass in immediately to get it verified that it's not being caused by the coumadin. Cause - skin necrosis - tis very, very nasty.

Just how cute is the logic of a 3-year old?

OK - I'm working with "a" to get him to say "Trick or Treat" for this upcoming weekend - and even worse - Des Moines has this weird thing they do where the kids have to tell a joke or riddle to get their treats... I'm struggling enough with "Trick or Treat" so I'm going to have to really work on the joke part.

Here's how things went this morning:

Mom: "a", Say "Trick or Treat"

a: "Treat" (as apparently he understood my request as Say "Trick" or "Treat")

Mom: No - say the whole thing "Trick or Treat"

a: "Treat"

Mom: No, I mean say all the words - Say "Trick"

a: "Trick"

Mom: Say "or"

a: "orrrr"

Mom: Say "treat"

a: "treat"

Mom: OK, say it altogether now - Say "Trick or Treat"

a: "treat!"

a: "treat! Pleeeeese mommeeee!" And of course, this being said with that look - his head tilted oh, so slightly to the side, the sweetest of sweet smiles in his eyes, and just ever so slightly a touch of 'please, please let her forget that just ten minutes ago I was having a temper tantrum because I didn't want to put my shoes on!'.

Saturday, October 21, 2006

Now what?

So, I saw the "highly recommended" cardiac doctor yesterday. I don't know why I let my hopes get so high. He felt that by closing the PFO we would only be addressing a small part of the problem (i.e., the clotting wouldn't stop). Which I should admit, is totally correct. I explained how the hematologists (as in all that I have seen) are very against putting me on anti-coagulants until I have a PROVEN second clot. He said that he felt that was excellent advice unless you have a clotting disorder... and doesn't seem to understand why they wouldn't keep me on it since I have two clotting disorders.

So, instead of coming up with a "plan of attack" we've started over. We're running all the tests that have already been ran all over again. Some haven't been ran for almost a year. Part of me understands that if something that might have been borderline last year at this time has gotten worse that it'll show up better in this round of tests. But the rest of me feels like my situation is hopeless and I'll never find anyone to help me before it's too late.

He did agree that it's urgent that I see a nuerologist at the earliest possible time frame. So, he called and tried to get me in to see one. They set up the apoingment on Wednesday this coming week with the doctor who spent ten minutes with me last year, blew me off, told me I was having migraines and then never followed up with the treatment he wanted to pursue (which might have been enough to at least make him aware that it wasn't migraines and perhaps have aided in preventing a stroke(. I know that I can't blame my stroke on him - from all intents and purposes, it does appear that a migrain aura and the warning signs of stroke are very similar. And it does appear from recent studies that there is a link between migraines with aura and clotting disorders. But it's besides the point - I don't want to see this doctor again. I hated the fact that he told me it was migraines and didn't take the time to explain why. He didn't take the time to listen to my concerns and he didn't follow up afterwards. I never saw him again after that first ten minute appointment.

So, when I found out what they had done, I told them that I refused to see that doctor. So, now, they won't give me another appointment with another nuerologist until this nuerologist "signs off" of the case. They said they won't even set up an appointment until he does that... wtf?

I have an appointment with my Hematologist next week - so I'll get on him and talk about my options... but without the nuerologist, I don't know if any of them will do anything anyway.

To top it all off - My Educator friend hasn't spoken to me since I told him about my health history on Tuesday night on our date. I'm trying very hard to assume it isn't because he's pulling away because of the news and that there might be another reason for his silence and not returning my calls or texts. But it's frustrating, he's a great guy... and I'm really attracted and so was he... now what?

I'm trying to just focus on taking care of me, I guess. In the meantime, I'm wearing a stupid heart monitor for another couple of hours... and once it finally beeps I can get a shower in. Surely I'll feel a bit better and less cranky then.

Thursday, October 19, 2006

Probably time to find a new doctor

OK - so I get a call today from my regular doctor. They have my appointment for the nuerologist (who is supposed to be identifying the risk level of my having a stroke within the next week or two versus month or two). It's the end of November. As in, not soon... as in, not fairly soon, as in... what's your hurry man... it's no big deal.

So I call the office today to ask if we can get the appoinment moved up... as in, not today or tomorrow, but sometime in the next couple of weeks would be awesome. They want to know why I would want to see the doctor so soon. I explain that I'm experiencing warning signs of stroke and that last time I went through this I had a stroke within three months of starting to have warning signs.... and that this time, since I'm having the same warning signs, I really don't want to wait that long.

Their response? Go to the ER.... which if I did, would get me sent home with a note saying that I'm not likely to die today (which I already know).... and to see my regular physician (which I already have).

I then explained that while this isn't ER urgent, it still isn't a wait 5-6 week kind of priority to me... I explain that my doctor doesn't seem to grasp the significance of having a PFO, a couple of clotting disorders with clotting and previous stroke being a high risk issue. Their response? Well, if your doctor doesn't see this as being urgent - we can't see any reason to make this appointment any sooner.

Hmmm... just freaking fantastic. So, I mentioned that I'm seeing the cardiologist tomorrow and am aware that he'd probably also want to have some consultation with a nuerologist and that I was just trying to expediate things by getting the appointments already lined up.

Their response? Let's wait for the cardiologist.

Fine - whatever. What do I care? It's not like I'm going to end up having a stroke or anything if they continue to screw around on me. I feel like hitting someone. But I won't. I'll just vent here.

Wednesday, October 18, 2006

Learning more about PFO

Yesterday, I managed to get a little bit of time during the day to do a little more research on my common "condition".

I found out that of course, it rarely causes anyone problems, but when it does... they have two different methods of possible treatment.

The first (and highly recommended to try it first) is to put you on warfarin (which I was on immediately after my PE) which the doctors have been refusing to treat me with for over a year. (Although, in all fairness - this recommendation is if you have had stroke-like symptoms and a PFO OR a clotting disorder and a PFO OR my other clotting disorder and a PFO - so there doesn't seem to be any common disclosures for a condition like mine where I have multiple factors.

If the first method fails, then they consider closing the hole using a catheter process which means it's not even considered a surgical process. (AWESOME!)

So - now I'm curious what stance the doctor will take on Friday. I have technically been on aspirin since last October and it's technically an anticoagulant (although useless as far as I can see for my particular clotting disorders) and it's technically failed to prevent stroke.

The only thing I'm certain that I WON'T accept is a "duh, let's wait and see approach". I have every intention of walking out of the office with a detailed plan of attack. Enough of this wishy washy nonsense.

Monday, October 16, 2006

Forgive the lack of makeup

Too much effort - yah know?

Be brutal-what do you think of the color? Not me? Or new me?

Appt for Cardiologist on Friday

Well - good news is that I'm not going to have to wait weeks to see the well recommended doctor who is going to be my savior (think this is wishful thinking?).

I see him Friday afternoon. If all goes well, I may end up spending the afternoon getting the rests of the tests needed done. At worst case, I'm hoping it'll still be a good, long appointment to go over options and what can be done... and who else needs to be seen before it's all agreed to.

I'm trying to put together in words what I'm really seeking in a regular doctor. I don't really expect them to "understand" everything I'm going through. I do, however, expect them to understand that blowing off my concerns isn't going to get either of us anywhere.

I found a "find the doctor" by asking a "nurse's opinion" spot. I'm seriously considering asking for a Dr House equivalent... think they'll get it?

Oh - and about trying to play a ditzy blond

Well, that's always been a challenge for me anyway. But especially now. As usual, when down in the dumps I make changes... I made the before threatened hair color change.

But you'll have to wait for the pictures. Shocking... Shocking I tell you!

Let's just say, I don't recognize myself in the mirror.

Saturday, October 14, 2006

Now, I'm feeling a little more than pissy

OK - so the doctor's office called me back at 5:00 pm...

They didn't call before because they were waiting on the results from my B12 vitamin levels check?!

I think the nurse broke the news to me (well, ok I already knew -but she shouldn't have known I knew).... well, it looks like everything looked perfectly normal and healthy on the echocardiogram - well, that is, except - well, you already knew about the teeny-tiny hole you have - right?

And when I explained that the reason I asked them to test me to LOOK for that hole was because I couldn't have possibly known it was there without the test.... duh! She said, well, why would you care? It's not like they do anything for these. And it doesn't matter at all that they waited 3 extra days to tell me about it when the lab results for the b12 test were mis-routed to the wrong clinic.

As I sat there - I couldn't figure out if I was pissed off because she can't possibly know that because I'm experiencing TIA's and have a clotting disorder and have this hole that getting the hole closed immediately could potentially save my life - especially given the dozen or so doctors I've seen who have never in a million years considered that this might be a good test to run. Or was I pissed off because, like all the others, she can't possibly imagine how sucky my life has become because I can barely do anything these days that requires energy.... and just how tough it is to keep the car on the road and not hit anyone when your vision goes all blurry out of nowhere - but you have to drive anyway because I can't just not show up at work. Or maybe it was the condescending tone of "you're obviously taking this much too seriously" which she actually SAID!

She said point-blank that my doctor didn't see any reason for me to come back into the office - even though I'm still exhausted and depressed and supposedly if all the tests came back fine that she ordered - she WAS SUPPOSED to talk about upping my anti-depressent.

I didn't take the time to "educate" her on my condition and the findings from the half-dozen studies done in the past 12 months which prove that some doctors do understand how this teeny-tiny hole can rob a person of - oh, I don't know - if not your life, perhaps your ability to walk, or talk, or function in society if you have a serious stroke.

I could have, but I didn't - it was a waste of breath. I just said that I was going to insist on pursuing the matter further.... and she said that either I could make the appointment or she could with the Heart Clinic. I assumed that if I left it to her, she'd probably make a big deal to the staff about me being a hypochondriac. So, I said I'd call. Of course, they'd already closed for the weekend before I hung up from this call - but I guess if it's been this long, it can wait until Monday. ugh.

You know - there are three women on the list that helped me learn about this condition. Each of them also had a PFO and also had trouble getting diagnosed, and all had clotting disorders. Each of them had surgery to close the PFO within three to five days of finding out about it - even though at the time, they weren't experiencing any TIA or stroke-like symptoms. Actually, wait that isn't quite right - one of them knew about the PFO for longer, but they weren't in any hurry to do anything about it until they were diagnosed with a clotting decision. Once the doctors knew they had both - the surgery was scheduled before the week is out. And the only reason they wait as long as they do to do the surgery is that they have to be anti-coagulated before the surgery so they don't clot from the surgery.

My sister-in-law's sister and cousin were both hospitalized the minute they started experiencing TIA symptoms.... even though they don't have clotting disorders .... and they weren't released for several weeks until after the symptoms stopped.

I'm not saying I want to be in the hospital... not really - I just don't know what it is about me that makes the doctors treat me like I'm an idiot and can't possibly be in need of a cure? Why don't they want to protect my health? What am I screwing up so badly? This so totally sucks.

Bet your sorry you said I don't whine enough? Sorry - hopefully by monday I'll have my appointment with a cardiologist and will have some good news to share.

Friday, October 13, 2006

Still NOTHING from the Doctor

They were supposed to call my last week with test results.... nothing.

I had the echocardiogram done on Tuesday... still nothing.

I'm fully aware that they should be trying to get me scheduled for the followup test and surgery within the next couple of weeks - as in urgent, not seriously urgent, but don't dick around forever stuff. I also get that I've gotten this far along without the surgery so I don't HAVE to have it immediately.... but still!

I've called the office twice, still no news. GRRRR!!!!

Tuesday, October 10, 2006

Good news, Bad news

And it comes in one sentence.

They found a probable PFO - which is a hole in my heart. Very, very common, normally very harmless. But in some people, and especially in people with clotting disorders, they can cause clots to pass from one side of the heart to the other which can result in migraines or strokes.

The radiologist (or do they have a different name if all they do is ultrasounds?)... showed it to me and said "You didn't hear it from me". And said that the normal process is to follow up with a second "confirming" test where they knock you out and use a camera down your throat to get a better look and measure the opening. Then they decide if it's worth closing or not (I'm pushing for closing it - sick of this stroke-like stuff and people thinking I'm just crazy or a whiner).

The procedure itself is pretty simple and straightforward. They can do it with endoscopy (which means a very small slit and a thin tube instead of open chest - and they insert a small device that will open just like an umbrella through that tube and into the hole. Open the umbrella, and mystic magic whamo-bamo - I shouldn't have as high a risk for stroke anymore.

Only issue I see is that this still doesn't prove that I'm clotting... it's just the device by which if I were clotting I would have the symptoms I have.

Better news is that the radiologist recommended a cardiologist that is also a vascular surgeon who would be really good for looking at all the superficial veins and arteries for additional clots. She couldn't believe they haven't done a venogram and mentioned that you can now do a venogram with a ct scan.... which means it's less invasive and just as thorough. So, it looks like I've gotten to the right group of doctors and physicians to figure stuff out.

I'm also extremely thankfull that the internet group I've been conversing with has been so helpful, it was them that suggested I be tested for this and it took a few doctors and a few tries, but I've been able to "educate" my doctors about this test and this condition and convince them to test me for it.

So much for "the doctor knows best?" Anyway, good news right? It doesn't explain all my pain away, but it does explain that if I am having extremely tiny clots that they do have a way to cause these mini-strokes and TIAs I've been having. And, it's correctable. Doesn't mean I'll go back on blood thinners (well except for the surgery itself). But it's a step in the right direction. Of course, as happy and relieved as I feel, I'm still feeling really anxious about it all... but that's to be expected, I guess.

Progress on "A"

Mom - you may not want to read this...

He's becoming the adult that I knew he was capable of being.

He's working and not missing work....! He's sleeping at night and not all day! He's working a nearly full 40 hour week with even some occasional overtime.

He's saving all his money - yet still eating well thanks to his employers.

What he's not doing? He's not moving out after all, he's still living in the house, still making it challenging for me to "finalize" the cleaning so I can list the house. He's not taking out his own trash, he's not picking up after himself, he's not doing his own dishes, he's not taking out his own pop cans, etc. He's not doing his own laundry and he's leaving his dirty clothes all over the place.

Every weekend, I take some time to pick up after him and re-clean the kitchen and then start working on cleaning the basement which should have been his responsibility to clean, however, with him not doing it, I'm doing it to the best of my abilities. It would really, really be worth it to hire it done, but I haven't found anyone willing to take on the task - and task it is!

I know I shouldn't clean up after him, but it's got to get done - and he's being all childish and not willing to do it... and I just don't have the strength to argue with him over it. As it is, it's all I can do to even get out there for a few hours every weekend with my health degrading fast.

Another thing he's not doing? He's not getting his insurance... even though he has more than enough money to do so... so, he's driving without a license. GRRRR! My Car - which is currently NOT INSURED.... yep, driving without a license.

Another thing he's doing? Smoking... GRRR!! But, he's an adult now and if he choses to smoke, I can't tell him he can't. I want to plaster the walls with death notices of people dying from lung cancer and complications... I want to remind him that lung cancer seems to run in our family and that he's not immune to it's affects... I want to shake him.... BUT, If I want him to grow up, I can't treat him like a child anymore... and it's not as if he doesn't know the risks.

So, I keep my mouth shut, I go to the house and clean up and leave.

He's pretty excited, thinks his business will be starting this winter yet, he's starting to talk to the bank about business loans, etc.... I wish him all the luck in the world and am trying to figure out additional ways to assist him. We talk about his business plans - nothing else, just that.

Monday, October 09, 2006

Figuring things out - or not?

OK - so, I've got three months left in the year and have to finalize my goals for these three months in my "Plan" which is the equivalent of setting goals for the year for figuring out your future raise.

I decided that since I still don't know "what I want to do when I grow up" anymore... that I would put in my "Plan" that I would spend the next three months coming up with new 3-, 5-, and 10-year career goals. I'd take some exploritory classes on the web... and figure some of this stuff out.

Truth is.... I'm struggling with lots of stuff. There's really no reason to stay in Des Moines other than I'm working for a good company at a job I enjoy where I get paid well. But, I haven't made a ton of new friends.... My health isn't so good.... and seems to be getting worse daily again... my mother still isn't talking to me.... and I'm questioning why I'm even living in Iowa.

I know that in order to make my financial and personal goals come true that I need to make more money and management is the key behind that... as you climb the ladder, they see you as being more valuable and the pay is commesurate with stress and responsibility. I know I can do it, and I know that there are tons of people I can turn to for advice when stumped.... say, like Phil & Trevor.... but, am I sure that with my health stress I can handle the additional stress of management?

And then.... why Iowa? I can call my sister & mom all I want from anywhere... and it's not like they stop by and see me all that often. The only positive is that "a"s dad is in Iowa and takes him once a month... but as it is we're several hundred miles apart and that usually means a lot of time on the road the weekend he gets to see his dad as it is.

Could I make more money outside of Des Moines - probably.... could I live as cheaply? probably not.... do I want to move again when I haven't technically finished moving now? Really not... but this is all about long-term plans.

Do I want to go back to school? For what? Tuition reimbursement is an awesome and tempting thing... and I love taking classes and learning new things....

Anyway - enough rambling... Tomorrow I'm scheduled to have the "echo bubble" something-or-other test where they insert bubbles into my vein (and no - it's not as dangerous as it sounds, they aren't going to kill me with this - and I've heard several people comment that the test isn't too bad).... and then they use ultrasound to monitor my heart and figure out if there's a spot where the bubbles escape. Might be a clue as to why I had and am now having again "episodes"... all I know is that I'm sick of hurting and hate the fact that things are getting worse again and I have no way to know that they'll figure things out in time to keep things from getting worse permanently. Nothing like feeling hopeless here.

Saturday, October 07, 2006

How Weird Are You?

You Are 30% Weird

Not enough to scare other people...
But sometimes you scare yourself.

Friday, October 06, 2006

Build at Habitat for Humanity

I took part in a wonderful invention yesterday. VTO - Volunteer-paid Time Off. The company pays me my normal pay rate, and I get to spend the day volunteering for an activity.

So, the whole team signed up for a Habitat for Humanity build... lot's of pics here.

Now, here's the smartest part of this fun day. 1 - I took all the pictures, so no pics here of me in my way-way-too-tight blue jeans (as the few that fit I couldn't risk tearing). And 2 - I jumped in early on the volunteer options which meant instead of shoveling gravel all day, I operated the saws and cut all the lumber for our build. Too fun! Power tools, fresh air, cool day, free pizza, and got paid besides? Now, that's cool!

Sunday, October 01, 2006

Which Sex and the City Vixen Are You?

You Are Most Like Miranda!

While you've had your fair share of romance, men don't come first
Guys are a distant third to your friends and career.
And this independence *is* attractive to some men, in measured doses.
Remember that if you imagine the best outcome, it might just happen.

Romantic prediction: Someone from your past is waiting to reconnect...

But you'll have to think of him differently, if you want things to work.